Bob&#039;s NewHeart News and Views On Organ Donation, Transplantation, Regeneration, Replacement.&amp; Research

There will come a time when organ/tissue/blood donors are no longer needed. Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation. But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved. Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN).

That was 28 years ago. Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working. Each year about 6,000 people die while waiting for a transplant. Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant.

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system. From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die? How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?” Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die. Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die. About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change. Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical. So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

1. Mandatory donation (anyone who dies is automatically a donor, no exceptions)
2. The LifeSharers approach, (you can only receive an organ if you are a donor)
3. Presumed consent (You are automatically a donor unless you opt out)
4. Some sort of compensation plan for donors and/or their families.
5. A combination of presumed consent and a payment system

Let us tackle mandatory donation first. On its surface it sounds harsh and like a product out of an HG wells book. It is harsh and probably unacceptable because of its dictatorial overtones. Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:

”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be. In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member. To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance.

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first. Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person. Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community. Additionally LifeSharers growth has been slow indicating limited acceptance by the public. You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite. It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.” You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference. The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered.

The most politically sensitive of all the issues is the outright sale of organs. At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market. It is not realistic to think that any U.S. regulatory or government agency would even consider the idea. Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988. The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance. The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them. Here’s an interesting twist, though. It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment. Within a year of being implemented the number of transplants in Iran almost doubled.

They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs. Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs. The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

There are some variations on the “Payment” theme that might be attractive to the American people. We could consider a system that “compensates” rather than pays donors or their families. For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage. The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications. A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.”

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel.

The point of this blog is to just get people thinking. The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors. That we must change if we are to stop the dying, is a given. Determining what that change should be is what is so incredibly difficult.

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Categorized in Ending the Organ Shortage -- Solutions
Tags: compensation, congress, donors, Dr. Sally Satel, families, insuranece, Iran, Medicare, opt in, opt out, organs, payment, prescriptions, presumed consent, recipeints, transplants, tuition

Jan

Help Your Caregiver — Get Your Own Glass of Water

When you are very ill or recovering from a serious illness or surgery our caregivers (spouses, partners, friends, relatives) have a most difficult task. Being a caregiver can be physically and emotionally draining and strange as it may seem the patient may sometimes have to offer care to the caregiver. Care in the form of consideration and gratitude. Remember the expression, “When mamma’s happy, everybody’s happy?” Same goes for caregivers.

As a heart transplant patient with a wife who would do anything for me and did, I can now reflect on my recovery period and easily see the number of mistakes I made as she tried so hard to meet my every need, and take care of the house while running two businesses. To this day I have no idea how she did it and I will be forever grateful. My ruminations on the subject led me to write the following advice to others who may be in the same situation now or who could be in the future.

Make it easy on your caregiver if you want to do what’s best for you.

Do as much for yourself as you possibly can. If your physician says you can get up and walk around do it as often as possible. Get your own glass of water.
Learn your meds. Know what they look like, what they do, how often you take them and when they must be refilled and do all of it yourself. Plan ahead for refills and find a pharmacy that will deliver to you on short notice so no one has to go running after prescriptions at the last minute. You can do it sitting and you don’t need a caregiver to do it for you.
Know your condition. When you talk with your doctor or coordinator take notes. It is your job to know about your health you cannot and should not depend on someone else to “remember what the doctor said.”
Make your own meals but be sure they are nutritious. You either just got a new organ or you are about to get one. Don’t cause further problems by eating and drinking the wrong things.
Only ask your caregiver for things you absolutely can’t do for yourself. If you can’t drive, you may need a ride or the caregiver may have to run errands for you. If you are on medication that causes some mental confusion or fatigue your caregiver should be involved such as in dealing with legal papers, insurance etc. But you should take over these responsibilities as soon as you possibly can.
If you have children, especially young ones, you may not be able to get involved in strenuous activities. The Children need to know this and your caregiver may have to take on some of this responsibility…for awhile.
Before making any request of your caregiver ask yourself this question, “Am I taking advantage of my caregiver by asking — is this something I can do myself?”
Show gratitude and consideration. Taking care of another person can be emotionally and physically exhausting. Tell that person how grateful you are and ask what you can do to make it easier on them. Every once in a while, get a glass of water for the caregiver.

Please view our video “Thank You From the Bottom of my Donor’s heart” on www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Categorized in Caregivers
Tags: caregiver, consdieration, coordinator, emotionally, exhausting, gratitude, Health, illness, insurance, meds, partient, physically, physician, surgery, transplant, water

Jan

Free, Professional Coaching if You’ll Give Talks On Organ Donation.

If you are a member of Organ Transplant Initiative (OTI) on Facebook or if you become one at any time (it’s ok to belong to any number of other similar groups at the same time) we invite you to take advantage of this exclusive offer. It is a challenge to get people to work harder on increasing organ donation. Too many people are dying while waiting.

If you will arrange for a two speaking dates to an audience of your choice on the subject of organ/donation transplantation, I will provide you with a factual, hard hitting, convincing PowerPoint presentation (one you can edit to fit your own style) visuals included at no charge. I will also offer you professional advice on getting and keeping the attention of an audience, motivating them to do what you want them to do, how to use your voice properly, how to breathe, body language and so much more. but, the coaching offer only stands if you use our presentation (we will very carefully research each fact offered). As a stand-alone the coaching will apply to many other areas of your life and it’s up to you how you use it.

All you have to do is volunteer to make two presentations during 2012 about donation/transplantation to the audience of your choice; family, service club, dinner group, church group, as the featured speaker at a banquet or anywhere else. You will be responsible for seeking out and securing those speaking dates. I can’t promise that I can give you perfection, but in a few short minutes or hours I can help you become a more confident, powerful and convincing speaker. All you have to do is send me a personal email at bob@baronson.org and say, “I’ll do it” and we can work toward arranging the proper communication vehicle to help refine your skills. If you just want the presentation and no help from me…that’s fine too. You may use the presentation I write without permission as long as you give attribution to the Organ Transplant Initiative for having provided you with some assistance. You do not need to mention my name.

I know public speaking can scare the bejeebers out of people but for many there is good sound advice that can help you through that. One thing for sure the advice you get will help you in many ways that go well beyond talking about organ donation. The skills you learn will be applicable in job interviews, courtroom and/or regulatory agency testimony, media interviews, sales presentations, regular conversation, and even giving a talk to co-workers about any subject (sometimes it even works with teenagers and spouses).

I spent all of my working life in communications including owning a firm with clients around the globe many of them in the Fortune 50 of top corporations. I don’t know why the good lord gave me this modicum of talent but I think he’d like me to share it to help save some lives, hence this offer.

I am already working on developing a slide show and hope to finish it within a month or two. Once done I will share it with you and we can begin the process. I’m hoping that eventually this will turn into a sort of national OTI speakers bureau with resources in every state and a message that is powerful, consistent and heartfelt.

I hope many of you will find it in your hearts to commit to this. With under 50% of Americans signed up to be organ donors there is ample opportunity to make a difference. Please become part of it and I promise I will do everything I can to make you successful because if that happens, we are going to save a lot of lives.

Categorized in Special FREE Offer
Tags: donation, Facebook, free, media, offer, Organ Transplant Initiative (OTIO), presentations, sales, save lives, special, special offer, speeches, talk, testimony, transplantation

Jan

Too Few Organ Donors — Inadvertent Terrorism

Each day 19 people die because there are not enough transplantable human organs to fill the need. The United Network for Organ Sharing (UNOS) which coordinates all transplants in America maintains a list of people who need life-saving transplants. As of today, January 2, 2012 the numbers are:

Waiting list candidates 112,702

Transplants January – Sept. 2011 21,354

Donors January – Sept. 2011 10,558

Right now, as you read this a patient, maybe a child, is near death. She needs a heart but there won’t be one. As the electronic monitors beep and chirp, the family is devastated, inconsolable in the frustration over the lack of organ donors and the imminent death of their loved one. The best medical care in the world is at their fingertips but they are helpless without an organ donor. The patients vital signs are dropping more rapidly now, the Doctors aren’t holding out much hope.

Right now as you read this, another patient not too far away has already been declared brain dead as the result of an auto accident. He is surrounded by a grieving family. It is not known if the patient is or wanted to be an organ donor. The family is considering a request to donate his organs but the decision must be made soon and they don’t know what to do, their loved one never told them of his wishes. Through tears and indescribable grief they discuss, they argue and then decline. Both patients die.

Each year Americans bury or cremate more than 20,000 transplantable organs – 20.000. Surveys continually indicate that over 90 percent of Americans approve of organ donation but in one of the greatest mysteries ever, only 46 percent actually make the commitment to do so. This inaction, this procrastination is causing people to die, families to grieve and patients who are awaiting transplants to live their lives in absolute terror. People who are not organ donors are not evil, they are not bad, they just don’t understand that their lack of action causes terror among patients as great as that caused by the real terrorists of the world.

Most people who aren’t donors, “Just haven’t gotten around to it.” After all, there’s no rush for them. Organs are recovered after a person dies and most potential donors are in pretty good health. The problem is that the patients who need the organs are not in good health. Everyone who is on that UNOS list mentioned earlier, is dying. Without a transplant they will die. Period. End of story.

Well, let’s make the donation process really simple, so simple you can do it from home, your office, on your I-pad or Kindle in your doctor’s waiting room anywhere. You don’t even have to get up. Just go to www.donatelife.net and follow the instructions then tell your family what you have done. It only takes minutes. Then make very sure they clearly understand that you want to be an organ donor. “That means when I die I want the medical people to take as much of my tissue and as many of my organs as they need to help save or enhance the lives of others.” Those are my distinct wishes please respect them should the time come.

That’s the first step to saving lives by helping to increase the number of donors. The second step, just in case you like this cause and want to do more, is to spread the word to convince others to do the same. “So,” you say, “How do I do that, how do I spread the word?” Here are ten easy tips, I’m sure that if you think real hard you might be able to come up with ten more.

150 words is about a minute’s speaking time. Write out about 150 words on why organ donation is important to the donor…the donor and then post it everywhere you can think of on the internet.
Call your local Organ Procurement Organization (OPO) and volunteer to speak on behalf of donation.
Buy the green “Donate life” wristband at www.donatelife.net and wear it every day. If someone admires it give it to them and ask them to wear it. What’s a few bucks to save some lives?
Ask your pastor to give a sermon on organ donation…offer to help gather the information for him/her.
Write a letter to the editor…actually send it to every editor you can think of.
When some radio talk show host least expects it…call about the importance of organ donation
Offer to speak to a local service club about donation/transplantation issues (Kiwanis, Rotary, Lions etc).
Add a short note about organ donation to the signature of every email you send “Did you know that one organ/tissue donor can save or positively affect up to 60 lives?”
Talk to a public school class about donation/transplantation
Start a blog…it’s really easy. Just Google “free blog sites” and go for it.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. Please view our video “Thank You From the Bottom of my Donor’s heart.” Just go to www.organti.org and click on the title. This video was produced to py romote organ donation so it is free and no permission is needed for it’s use. You’ll also find other useful information on this web site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative (OTI) The more members we get the greater our clout with decision makers and the more clout we have the more likely it is that we’ll be able to increase not only organ donation but the many alternatives that science and technology people are working on.

Categorized in drugs & tobacco abuse, Ending the Organ Shortage -- Solutions and Uncategorized
Tags: donate life, donatelife, donation, family, grief, Hospital, I-Pad, Kindle, organ donation, organs, wiating room, wwwatelife. terrorism

Aug

Donation to Transplantation — How it Works

It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses the donation/transplantation process. My undying thanks to my donor, his family and my caregiver wife for giving me these extra years. Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS). UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia. In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following. Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States. About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs. This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation. We at UNOS are glad to address more specific questions.

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide. A transplant program’s medical team will address issues such as:

Will a transplant effectively treat his or her disease?
Does this person have other medical conditions that would complicate his or her care?
Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.? Does he or she have family or caregiver support to assist if needed?
Does this person qualify for insurance for transplant costs? If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment. If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN. The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing. While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status. If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate. UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation. While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

identifying potential donors
documenting donation consent

collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
entering donor information and organs available for matching into the OPTN database
assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process). For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure. The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death. The next of kin must agree that death is imminent and that they will agree to end supportive care. Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted. Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital. The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it. It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital. If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used. Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center. Kidneys have the longest preservation time (commonly up to 36 hours from recovery). If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer. The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list. This displays which potential recipient is to be offered each organ in sequence. Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer. This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer. If the organ is accepted, arrangements are made for recovery and transportation. If the transplant program declines the offer, it will note a refusal reason back to UNOS. The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors. These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system. Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles. One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need. The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward. The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
(for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation. We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

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You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it. Watch the video at www.OrganTI.org.

Also…there is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in The Donation/transplantation process
Tags: Education, Health, Joel Newman, life saving, OPOs, Organ, organ donation, Organ Procurement Organizations, Organ transplantation, physicians, suirgeons, transplantation, United Network for Organ Sharing, United States, UNOS

Jul

An Expert Explains Addiction as a Disease

While most experts and most medical associations recognize alcohol and drug addiction as a disease many of our readers disagree. This blog and our Facebook group Organ Transplant Initiative (OTI) are focused on helping those who need organ and tissue transplants get them. That’s our purpose and our mission but many of those who don’t believe in the disease concept of chemical dependency hold strong opinions that if a person is dying of liver, kidney, heart or other organ failures and if that person has a history of alcoholism or chemical dependency they should not be eligible for an organ transplant. The argument is, “They chose to become an addict and they should suffer the consequences.” This topic has received more discussion than any other that we have introduced in the nearly four years Bob’s Newheart has been publishing blogs. We hope this guest blog will help dissenters have a better understanding and perhaps more compassion for those suffering from the disease of addiction.

Prior to my retirement to get a heart transplant in 2007 I was a private communications consultant specializing in health care issues. One of the great rewards in my 25 plus years career was getting to meet and interact with some of the leading medical professionals in the world. One such person, who I am proud to call a friend, is Dr. Marvin Seppala, Chief Medical Officer for the Hazelden foundation in Center City, Minnesota. Hazelden is one of the leading and largest non-profit addiction treatment centers in the world with several U.S. Locations. Dr. Marv is not only a highly respected physician he is also a psychiatrist who specializes in helping those who suffer from addictions. You can read more about him and about Hazelden at http://www.hazelden.org/

The following blog was written by Dr. Seppala for the CNN Health website and he has graciously given his permission for us to reprint it here. Your thoughts and comments are encouraged and welcome.

Bob Aronson

(Bob is the bob of bob’s Newheart and has been in recovery from alcoholism since 1982. He received a heart transplant in August of 2007)

ADDICTION — THE DISEASE THAT LIES

I learned of four addiction-related deaths this weekend. Three were people I knew in Portland, Oregon, recovery circles and the fourth was Amy Winehouse.

Tragically one must get used to such news if you spend a lot of time with those who have this disease. Whenever someone with addiction dies, I grieve the lost potential and wonder about the limitations of our ability to address this cunning, baffling and powerful disease.

I am also humbled by my own experience with addiction and recovery, and grateful for the help I received.

It seems nearly impossible to believe that people with addiction would continue to use drugs and alcohol to the point of death, but that is what people with addiction do: They deny both the consequences and the risks of using. As we continue to learn about addiction, we’re understanding more about why addicted people behave the way they do. But that’s little solace for friends and family.

Addiction is a brain disease, and our knowledge of it has expanded significantly, which has informed our treatment programs and altered our perceptions. We know that addiction resides in the limbic system, a subconscious part of our brain that is involved with memory, emotion and reward.

We refer to this area of the brain as the reward center, as it ensures that all rewarding or reinforcing activities, especially those associated with our survival, are prioritized. The reward center makes sure we survive by eating, drinking fluids, having sex (for survival of the species) and maintaining human interactions.

In late stages of addiction we can see how reward-related drives, especially those for survival, are reprioritized when people risk their families, their jobs, even their lives to continue to use drugs and alcohol. The continued use of the drug becomes the most important drive, at a subconscious level and unrecognized by the individual, undermining even life itself.

When a methamphetamine-addicted mother makes the nightly news after neglecting her children for four days while on a meth run, we can’t comprehend how anyone could do such a thing and tend to think she does not love her children. She may have been going out for groceries with the intent to return home and feed her children, but ran into a dealer and started using.

Addiction took over, and she was driven by subconscious forces even though she loves her children as much as I love mine. Her love and her natural instincts to care for and nurture her children were overridden by her own brain, the reward system reprogrammed to seek and use drugs at all costs. Unbeknownst to her, drug use has become the most important thing in her life.

When we witness the incomprehensible behaviors associated with addiction we need to remember these people have a disease, one that alters their brain and their behaviors. We tend to believe we all have free will, so it is difficult to understand how the addicts’ perception has been so altered as to drive them to destruction.

We also assume they can make their own decisions, especially when it comes to help for their addiction. In so doing we are expecting the person with a diseased brain to accept the unacceptable, that the continued use of drugs is not providing relief from the problem – it is the problem, and they need to stop that which has become paramount.

They are unable to make such decisions because their brains have been altered to prioritize use of the drugs, even above survival itself.

Relief of psychic pain, the real, unimaginable pain of addiction, is part of the problem. People have many reasons for seeking relief from pain; some pain precedes the addiction, but most pain is the result of the addiction.

The addicted neglect their primary relationships and they may lie, cheat and steal to continue drug use. And they know this at some level, they recognize their uncontrolled behaviors, but they can’t change, they can’t stop.

Hopelessness becomes a way of life. Self-loathing, shame and guilt become the norm as the consequences of continued drug use accumulate.

They use drugs to ease the pain, but the very remedy exacerbates the problem. The answer to their dilemma goes unrecognized due to the neurobiological changes that have occurred in their brains.

The good news is that treatment is effective and specifically designed to help people recognize the problem within. Most people are coerced into treatment for one reason or another; they may be facing legal issues, job loss or divorce.

With good treatment their likelihood for recovery and abstinence is just as good as the minority who seek treatment of their own accord. Unfortunately, less than 10% of those with addiction recognize they have it and seek treatment.

This is the primary reason people don’t seek help. Our largest public health problem goes unrecognized by those with the disease.

Every one of these deaths is tragic. They died of a disease that lies to them. Amy Winehouse had incredible musical talent that enthralled the masses, but she became known as much for her struggle with addiction.

We can safely watch such a tragedy, gawking as we drive by the destruction, insulated from the suffering and unable to help. But addiction is all around us and we need to respond to the rising death toll.

All of us are responsible for learning the truth about addiction, raising awareness and intervening for those who have this disease, knowing they are unlikely to be able to do so for themselves. Dr. Marvin Seppala.

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Also…there is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in alcohol and drugs
Tags: Amy Winehouse, Center City Minnesota, Chief Medical Officer (United Kingdom), CNN, Disease, Hazelden Foundation, Substance dependence, United States

Jul

Give A Million Dollar Gift That Won’t Cost You a Penny

This is a guest blog written by Ashley Tenczar Curran of Boston, Massachusetts. Her husband Peter desperately needs a new liver. He has been on the national transplant list for two and a half years. Ashley is a dear friend of mine and an administrator of my donation/transplantation Facebook page, Organ Transplant Initiative (OTI).

Heroes of Hope

So often I will read , with sadness, an obituary of a friend or relative that says: “He/She lost their battle with ___(disease the person suffered from) and passed away “.

I will hear people speak of this person as if they stepped away from the pitcher’s mound, defeated, and limped home to sulk in their bedroom. “They are at peace, they struggled, but now they are home”.

When we speak of a person who has been waiting on a transplant list, however, I know that I could never say they “lost” any battle, for we who have been caregivers know that this “battle” that is waged on the human body is like no other. An organ has failed in the body, yet this person is alive.

When I really stop to contemplate that, it is an awesome responsibility that the patient and caregiver take on when they and their transplant team decide to be “evaluated for possible placement on the transplant list”.

First off, the fear of the transplant itself kicks in, for though research and technology has come a long way, especially with mortality rates and the new generation “cyclosporine” anti-rejection drugs that have given transplant recipients much longer survival rates and less time spent in the hospital, but the operation itself is mind boggling. I cannot even imagine, even after over 2 years of waiting on the transplant list with my husband, saying “goodbye” to him as they wheel him in to the surgery of a lifetime.

While one is waiting and being evaluated, there are dozens of medications that have to be prescribed, filled, changed, renewed, filled again, and taken every day. One cannot “skip” a medication that is basically functioning as your heart, liver, kidneys, and so on. I was a health professional for over 6 years, and I have trouble keeping track of all of these pills, even with all of the devices and alarms, computer programs and other ways to organize them. We struggle every single day to keep this “battle” going.

A supply of these meds has to always be on hand, and I will bet I am not alone in having dealt with hte “on call” doctor who has no idea who we are, and has to read all about our loved one in less than a minute and make a potentially life changing decision on a Saturday night to continue this ritual of keeping what is left of the organ functioning.

While one is being evaluated, the treatment must continue, and it does. Paracentesis (withdrawal with a long needle of accumulated fluid around the abdomen), Thoracentesis, (fluid withdrawn in much the same procedure around the lining of the lung), Colonoscopy, Endoscopy, Cat Scans, Ultrasounds, and dozens of others, just to name a few, have been our life for the past two years.

We are the lucky ones, however, with just the feeding tube in place or my husband, because some people need to be on continuous treatments, such as dialysis, breathing machines, oxygen, and so many other life preserving therapies.

Many of these are painful, and exhausting. Yet somehow, some way, we find the will to go on.

We wait one more day, one more hour, praying that someone will pay attention to the “battle” going on in the hospital room, or home, of our loved one. We pray that someone, somewhere, will go online, or to the Registry of Motor Vehicles, and fill out that form to become an organ donor “now” , rather than “later”.

Caregiver and patient, family, friends,chaplain support, medical team assistance,(and of course, humor!) all combined to keep just ONE life intact. It may seem foolish to some, when thousands are dying around the world of starvation, earthquakes , and other disasters and tragedies, but when it is your husband, your mother, father, brother, sister, or otherwise, it is the most important life there is.

This is humanity at it’s best.

This is the reason I cannot understand the missing piece of it all. Where are the organ donors? The rate of donation is astonishingly low in almost every state!

Of course there are plenty of stories I could pull at any given day from the media/ net, (or from having been in the “OTI” (Organ Transplant Initiative group on Facebook), personal stories of dear friends ),of the strength and courage of a living donor, or a deceased donor, who puts forth their life and everything that entails, and gives part of it to another human being. These stories are real, and I don’t want to underscore those absolute heroes who give freely of their own body so that another person, be it stranger or loved one, can go on and complete their life cycle.

But I cannot for the life of me understand why the rate of organ donation is so low! People always talk about charities, and non-profit organizations that they are involved in, and how the recession has caused them to have to “cut back”: but here is a place to give a MILLION BUCKS, without having to spend a dime, to someone their life back, and yet there is a negative response from so many.

I have heard so much in the last couple of weeks about “James Whitey Bulger”, the “big and scary gangster” from my home of Boston, and 24/7 media coverage about a man who murdered 19 people, who took AWAY 19 lives, and while my sympathy is with the victims of this coward, I cannot stop and compare the statistic of the number “19″.

19 people die every day in the U.S. from lack of a life saving organ.

Imagine if all of that senseless and repetitive coverage of a man who will problably never see justice shifted, and turned to something positive, a push for new organ donors to register, stories of the lives of those who have “been in the battle”.

Whitey, I dare say, would have a fit. It would be like the devil himself losing the attention of the world.

I flip through the gauntlet of these “reality shows”, from the industry of crab fishing (Deadliest Catch) to saving whales, (Whale Wars) , parking meter attendants and their exciting life, (Parking Wars) and medical shows about “real life” medical emergencies, but not ONE show about Transplants.

What about the “Transplant War”?

Those who are winning it would love to talk about it.

Here is an opportunity for an “up and coming” reality show writer to really make their mark,but for some reason, this intriguing subject rarely appears on my TV.

What could possibly be more inspiring then a” transplant reality series”? The human epic drama about a war waged against your own body. The “altruistic” demeanor of the whole situation, humanity at it’s best, and worse.

The Gift of Life that is given every single day, to little children who pass away suddenly, and hearing from the heroic parents who can actually see past their grief for even one minute to think about another person’s child is nothing short of a spiritual awakening.

I believe the Organ Donation rate would double almost over night. I am an optimist, and when a particular cause is taken up in America, it spreads like wildfire.

The people who may have needed to see this “reality show”?

The man who got shot outside a pre-school in Boston yesterday morning thought he had plenty of time, he was about 21 years of age.

Those people who die in car crashes 2 miles from their home thought they had plenty of time also.

The persons who hide behind their “religion”, without even consulting their spiritual leaders on the subject, and say “I can’t be an organ donor because I am ___” (fill in almost any religion, because I have heard them all!) Amish, Jewish, Muslim, Catholic, Christian, …all of them are religions that absolutely encourage the individual to “follow their conscience” and to “support , continue, and pursue life in any way possible”. (The current Roman Catholic Pope’s words)

So, in closing, If you ARE an organ donor, if you have given of yourself, THANK YOU from the bottom of my heart, and dare I speak for those I know, and those I love. You will be rewarded, and you have my undying respect and love, whether you are alive or deceased.

If you have not “checked it (organ donation) out”, NOW would be the time.

If you are waiting for an invitation, I just sent you one. No need to RSVP, just go to the United Network for Organ Sharing’s website (UNOS.ORG) for more information, and to sign up online, or for locations on where you can sign up in person. You can also become a donor on line by going to www.donatelifeamerica.com or by calling your local Organ Procurement Organization (OPO)

Oh, and “NBC, CBS, FOX, DISCOVERY CHANNEL, A+E.”…if you are watching, call me. (I don’t have your number, and have not the faintest idea how to get a hold of you)

I have a great script for your first episode of “Transplant Wars”, and the name of the first episode is “HEROES OF HOPE”.

This name is because the transplant recipients, the organ donors, the caregivers, the medical teams, the researchers…they really are “HEROES” of “HOPE”. My heroes.

*Thank you to Bob Aronson for being our “hero of hope”. He has been there for my husband and I for over 2 years, since the minute we met online, and we could never repay him for his support and love during this “battle” we are going through that seems to never end. Anyone who says you can’t make life long friends on FB hasn’t met Bob. Come join our group, “OTI” (Organ Transplant Initiative), you will be made to feel right at home!

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Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Also…there is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in Organ Donation
Tags: Ashley, caregiver, donation, Heroes, Hope, liver, Organ Transplant Initiative, OTI, Peter Curran, transplantation

Jun

What Alcohol Can Do to Your Liver

Bob Aronson, the author of this blog, is a recovering alcoholic (since 1982), a former smoker and a 2007 heart transplant recipient. He wrote this blog about two years ago but because of hundreds of inquiries about how alcohol affects the liver he is re-posting it.

I think it is important to point out here that while I am a recovering alcoholic I am not anti-alcohol. There are, though, some instances where abstinence is absolutely necessary. Such is the case with liver disease.

According to the American Liver Foundation (ALF), (http://www.liverfoundation.org/education/info/alcohol/)

the liver breaks down alcohol so it can be eliminated from your body. If you consume more alcohol than the liver can process, the resulting imbalance can injure the liver by interfering with its normal breakdown of protein, fats, and carbohydrates.

The ALF says there are three kinds of liver disease related to alcohol consumption:

Fatty liver is marked by a build-up of fat cells in the liver. Usually there are no symptoms, although the liver may be enlarged and you may experience discomfort in your upper abdomen. Fatty liver occurs in almost all people who drink heavily. The condition will improve after you stop drinking.

Alcoholic hepatitis is an inflammation of the liver. Up to 35 percent of heavy drinkers develop alcoholic hepatitis. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain and tenderness, fever and jaundice. In its mild form, alcoholic hepatitis can last for years and will cause progressive liver damage. The damage may be reversible if you stop drinking. In its severe form, the disease may occur suddenly, after binge drinking, and it can quickly lead to life-threatening complications. In some cases a liver transplant is the only life-saving option.

Alcoholic cirrhosis is the most serious type of alcohol-induced liver disease. Cirrhosis refers to the replacement of normal liver tissue with scar tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis, usually after 10 or more years of drinking. Symptoms of cirrhosis are similar to those of alcoholic hepatitis. The damage from cirrhosis is not reversible, and it is a life-threatening disease. Your condition may stabilize if you stop drinking.

Many heavy drinkers will progress from fatty liver to alcoholic hepatitis and finally to alcoholic cirrhosis, though the progression may vary from patient to patient. The risk of developing cirrhosis is particularly high for people who drink heavily and have another chronic liver disease such as viral hepatitis C.

The ALF makes it very clear that if you have any liver disease you must stop drinking, period! “Your doctor may suggest changes in your diet and certain vitamin supplements to help your liver recover from the alcohol-related damage. Medications may be needed to manage the complications caused by your liver damage. In advanced cases of alcoholic cirrhosis, the only treatment option may be a liver transplant. However, active alcoholics will usually not qualify as suitable organ recipients.”

Once people become aware of the dangers alcohol poses to the liver, the first question they ask is, “Can I drink at all? Is there a safe level of drinking?” Here’s ALF’s response:

“For most people, moderate drinking will not lead to alcohol-induced liver disease. Moderate drinking means no more than one drink a day for women and two drinks a day for men. (A standard drink is one 12-ounce beer, one 5-ounce glass of wine or one 1.5-ounce shot of distilled spirits.) However, for people with chronic liver disease, especially alcohol-induced liver disease, even small amounts of alcohol can make the liver disease worse. Patients with alcohol-induced liver disease and those with cirrhosis from any cause should stop using alcohol completely.

Women are more likely to be affected by alcohol-induced liver disease because women can be affected by smaller amounts of alcohol than men.”

Finally The American Liver Foundation says: “Serious complications from alcohol-induced liver disease typically occur after many years of heavy drinking. Once they do occur, the complications can be serious and life-threatening. They may include:

Accumulation of fluid in the abdomen
Bleeding from veins in the esophagus
Enlarged spleen
High blood pressure in the liver
Changes in mental function, and coma
Kidney failure
Liver cancer”

The basic philosophy behind this blog is to advance organ donation but because there is such an organ shortage it is important, too, to protect our organs. Steps can be taken to avoid needing an organ transplant. Moderation of alcohol consumption is one of them.

Also…there is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in Alcohol

May

Quit Smoking You Damn Fools!

This will be short. I’ve already had a heart transplant and now because of 37 years of smoking I have Chronic Obstructive Pulmonary Disease (COPD). I can’t breathe very well, especially if I move around. Do you have any idea what that’s like? Do you know what its like to be exhausted and gasping for air after putting on your shoes? Do you know what it’s like to have to drive a little electric cart around the supermarket because you can’t tolerate the walk? Well, if you keep on smoking you are in for that and a hell of a lot more. My case is mild compared to others, I don’t have to do breathing exercises every morning just to get my day started like Cystic Fibrosis patients do. I don’t have to use oxygen yet, I’m not in a wheelchair or confined to a bed or recliner at home but that could easily be my future and yours, too.

When you bend over to pick something off the floor you probably feel nothing. Here’s what happens, though. When you bend you compress your diaphragm which affects your breathing. As your lung condition worsens that one simple move can leave you feeling as though you’ve run a mile at top speed. I cannot bend over to pick up anything without having to sit down immediately to catch my breath. That means I can’t pick up my shoes, I can’t check the air in my tires, I can’t even bend over to pet my dogs.

My transplant docs tell me I’m doing very well, that with the exception of my lungs I am in pretty darn good condition. I know my mind is ok because I am more intellectually curious than I’ve ever been and I love to learn and write (some who have read my writing may think I’m a little loony but it’s a healthy loony ). When I am sitting down and at my computer I feel better than I have in 25 or 30 years but that bubble bursts as soon as I get up and walk across the room.

Smoking is killing me even after having quit two decades ago. Smoking may also share some of the responsibility for my needing a heart transplant. There isn’t one damn good thing about smoking. People say, “It relaxes me.” Sure it does, it relaxes you because you are addicted to nicotine and you were going into withdrawal. Having a cigarette is a lot like the alcoholic (yes, I’m one of those too 30 years sober now) who has a drink to cure a hangover. There isn’t any difference. There isn’t one excuse (there are no reasons) you can give me for smoking that I cannot destroy in a second.

I have COPD, I lost my father to Chronic Bronchitis and a wife to lung cancer. I know first hand what smoking does and it isn’t as though you are only hurting yourself. Smoking not only will kill you it is killing those around you, your friends, your loved ones, your kids, even your pets. All of them will suffer because of your selfish desire to satisfy a craving. I smoked up to four packs a day for 37 years and quit. It took a lot of tries but with the help of nicotine gum I quit in 1991. If I could do it you can, too. I’m not tolerant like a lot of smoking cessation counselors are, I won’t accept the BS that you can’t quit. You can! You are just to much of a wimp to experience some temporary discomfort.

Get some guts, sure it’s hard to quit smoking but to give up by saying, “I can’t quit.” BS! Do you remember the story about the man who was caught alone in the wilderness with his arm pinned by some debris? He cut off his own arm to avoid death and walked a great distance to get medical attention. That’s experiencing real discomfort and showing a will to live. Allowing yourself to die because of a simple “craving” is wimpish, gutless and suicidal.

If you don’t like my harsh comments that’s too damn bad. I cannot sympathize with anyone who has the power to save their life and the lives around them but refuses to do so because its not “comfortable.” Shame of you!

Oh yeah…one more thing. Don’t count on getting a lung transplant to solve your problem. There’s a long line ahead of you waiting for a new lung or lungs and they won’t all get them. The best way to solve the organ shortage is to take care of yourself so you never need one.

Please view our brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use. Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it. Watch the video at www.OrganTI.org.

Also…there is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Categorized in Cigarette smoke kills 555 people a day
Tags: cancer, chronic bronchitis, COPD, diaphragm, father, gutless, lung cancer, Shoes, suicidal, wife, wimp

May

A Life Needs Saving Right Now. Will You Help?

Most often I write about transplants that almost everyone has heard of like heart, lung, kidney, liver and pancreas. Today is different though. This is about how a new discovery that removes then replaces some of a patient’s adult stem cells back to the patient and stop, even reverse the effects of Multiple Sclerosis (MS). Studies indicate this is an amazing breakthrough. The same procedure is being studied for use with other diseases as well.

This blog is about Emily Lori Cameron a cancer survivor who now has Multiple Sclerosis (MS) which presents her with new challenges every day. Each day she asks herself, “Will I be able to speak clearly, will my thoughts be clear, will I be able to walk, use my hands or even know where I am and what I am doing?” Medicare has approved a new procedure for Lori but she must raise $42,000 to pay her share of the cost. More about that in a bit but first a little about MS.

Multiple Sclerosis is a terrible disease. In effect the immune system attacks the protective lining around nerves, shreds it and causes communication between brain, nerves and body to become tangled and ineffective. For example, the brain might send a message to the legs to begin walking but along the way the message gets garbled and what the legs receive is a command to relax so you fall down. Up until the last couple of years standard treatment which includes drugs and some physical therapy only delays the inevitable. It does not stop the progression of the disease so it certainly can’t reverse it.

Now there is a new procedure that uses one’s own adult stem cells to not only stop the disease in its tracks but to even reverse many of the existing symptoms. This new procedure is approved by Medicare and initial studies have indicated that it is very effective, some have even called it a cure for Multiple Sclerosis. I can’t tell you exactly how this works but apparently they will withdraw from Lori a certain amount of her adult stem cells and store them for a short while. Then she will undergo chemotherapy that will destroy the old immune system. When that is done the original adult stem cells withdrawn from Lori’s body will be injected into her again to create a new uncontaminated immune system. Initial studies indicate success rates in the high 90 percent range. Here’s a link to tell you more http://www.northwestern.edu/newscenter/stories/2009/01/burtms.html

So far the new treatment is approved for use in the early stages of MS so it is entirely possible that if Lori’s condition gets considerably worse, which is entirely possible, she could be removed from the approved list. Lori’s sister has already experienced the treatment and is doing wonderfully well. There is an urgency to Lori’s condition because we must, must, must raise the money as soon as possible so there is no chance she will be removed from the transplant list.

Just today I posted a new video on YouTube, it’s only 9 minutes long and effectively tells Lori’s story and why your donation is so critical and must be done so quickly. You can find it at http://www.youtube.com/watch?v=KrBJoCdIKto. Or to be even faster you can just go directly to the highly respected National Transplant Assistance Fund (NTAF) and donate directly. Lori has been approved by NTAF and is registered there www.ntafund.org/contribute/ Secure credit card: 800-642-8399. You can look her up under the name Emily Lori.

This is probably the most urgent appeal I have ever made. Lori is a nurse and a very compassionate human being. She has sacrificed a great deal in order to help others, never asking for anything for herself but now the situation is becoming desperate. We simply must raise $42,000. That’s a lot of money but when that’s all it takes to save a human life it should not be an insurmountable obstacle. Please dig deep…forsake the Latte for a few days, or a beer, or a pack of cigarettes or that sweater you really wnted and send the money to Lori instead. If we can do that Lori will have the financial support she needs very quickly. Can you stand by and watch someone die? I think not…send what you can 50 cents, a dollar, ten dollars…all of it will add up and we can save this precious human life.

Please view another of our recent videos, “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Also…there is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook grou[, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in New Ideas
Tags: Adult stem cell, adult stem cells, cure, Disease, Facebook, Medicare, MS, Muliple Sclerosis, Multiple sclerosis, organ donation, Organ transplantation, procedure, reverse, stem cell transplant, stop, YouTube

Apr

My Donor’s Heart — My Story

I don’t know why but somehow the formatting on WordPress got a little disjointed so ignore it if you can. I apologize for any inconveniece.

The fourth anniversary of my heart transplant is on August 21. I will never, ever forget that day. I was a very sick man. I had dilated cardiomyopathy, which is a progressive and incurable heart disease, but let us turn back the calendar to the time when I first learned I had a fatal illness and would likely need a heart transplant.

It was about 9 PM in July of 1995 and I was just leaving the office. All day my breathing had been somewhat labored but I thought it was my old asthma resurfacing so I did not dwell on it. Even though I was not having serious problems with asthma I always carried a “rescue” inhaler with me so I used it a couple of times but strangely it did not seem to be doing any good. As the day wore on breathing got more difficult. I felt like going home but I had a client coming in from six until nine that evening and was sure I could “gut” it out.

My always prompt 6 o’clock client was there early so I hurried the previous out the door and began work with my last appointment of the day. Six until nine became the longest three hours of my life. I was having such trouble breathing my client asked if I needed to go home. Always the tough guy I told her I was fine, just having a little bit of seasonal asthma.

When nine o’clock came she gathered her things and said goodnight. I was out the door about two minutes after she was. On the ride down to the parking ramp I remembered that when I had arrived that day the only parking places left were all the way at the back of the ramp, easily a block from the elevator door. My laptop and other “homework” was in my rolling briefcase so I began the walk to the car, all the time struggling for air. A couple of times I had to stop, lean on my rolling case for a couple of minutes and then start again. My breathing was getting so difficult I was starting to get a little scared. I
repeatedly used the rescue inhaler but to no avail, it was useless so I decided it was a bad inhaler or this asthma attack was a particularly strong one.

Finally I reached the car, gasping for air. I got in and just sat for a few minutes and my breathing started to become a little better, not much but a little. Home was fifteen miles from the office and it seemed like the whole world had gone into slow motion. Getting a little concerned I picked up my clunky cell phone and called home. When my wife answered I told her what was happening and that I thought I might need to go to an emergency room but I would pick her up first. When I arrived she was standing outside waiting. It was clear that I could no longer drive, I could hardly move, so my wife got behind the wheel and we sped off to the closest ER. When we walked in there was no one there but a nurse behind a desk. Now, gaspling for air and feeling faint, I told her about my breathing and about the rescue inhaler and that I thought I was having a severe asthma attack. While I was talking she was taking my blood pressure and temperature. When I finished two men came into the waiting room with a stretcher on wheels. I told them it was asthma and that I did not need the stretcher. That is when still another nurse appeared and said, “Mister, you are definitely not having an asthma attack.”

Almost as soon as I got placed in bed in a curtained cubicle a doctor appeared. As he examined me and gave instructions to the nurses I was connected to several monitors. The quietly efficient ER staff started an IV and my breathing seemed to be easing….within a few minutes it seemed to be almost normal again. Obviously there was some fast acting medication in the I V. As I began to relax and enjoy the ability to breathe again the doctor looked up from a chart and told me that I
was having some kind of heart problem and that I needed to be transferred to another facility because my condition appeared to be grave and that they did not have the cardiac care capabilities that I needed. He said an ambulance was on its way to take me to United Hospital in St. Paul, Minnesota which was a well-known cardiac care center. By now I was feeling pretty good and told the doc I did not need an ambulance — my wife could drive me there. With a stern look and a threatening voice he said, “You are a very sick man Mr. Aronson, you are going by ambulance.”

When the ambulance arrived two paramedics hopped out and began hooking me up to their monitors while they quickly wheeled me to and into the back of the big red and white truck. Siren on, lights flashing, I wondered what the big deal was. I was rushed into United Hospital and connected to what seemed to be every monitor in the room. They drew blood, sent me for x-rays and I do not really remember all the other things but it was quick, efficient and done with great respect and
concern. In short order my entire family began to gather around me joking and laughing . After all, I felt pretty good, I looked Ok and I didn’t seem to be in any danger. That’s when when a tall, gray haired, distinguished looking man walked in. He was Dr. Thomas Johnson a respected cardiologist. He was very friendly and calm but his words indicated the situation was not good. ”You have a condition called cardiomyopathy,” he said and explained what the disease was and that while I was feeling good right now, it was the medication that was responsible. It was obvious from his demeanor that this situation was quite serious. When he finished his explaination to me and my family he said, “Cardiomyopathy is a progressive, incurable form of heart disease and it is likely that you will need a heart transplant.” The room fell into a prolonged silence.

Trying to make the best of a bad thing I said, “See, there’s a remedy… I’ll get a heart transplant.” I knew very little about organ donation and transplantation and assumed that if I needed a new heart we could schedule it and I would be fine after some recuperation. That is when I learned how the organ shortage I had heard about affected me. Dr. Johnson explained the organ shortage and said that some people never got the organs they needed. I also learned the procedure could not be done at United because they were not a transplant center. To make a long story short I stayed in the hospital for a few days then was given some prescriptions, instructions and set up an appointment to see Dr. Johnson in his office the next day. As we headed home, I was overwhelmed with random, disconnected and confusing thoughts. I was still kind of puzzled because I felt great. None of it made any sense.

Twelve years went by before I finally got a new heart. In the meantime I had more epiisodes and finally was fitted with an implantable defibrilator which proved to be insufficient for my condition and within a year or so required a more sophisticated device. This was all getting very real. I could feel and see the outline of the defibrilator through my skin just below my left shoulder. In the meantime I continued to work but at a slower and slower pace. I

As a communications consultant I did a lot of training for my clients and when I did my “lecture” I always stood, walked around the room and tried to make it fun but all that activity used up a lot of energy. As time went on I limited my walking around while presenting because it affected my breathing. Then I quit walking completely and just stood at a lectern and finally I could no longer even stand for any length of time, I had to sit. Now I began to understand the progressive nature of the disease.

By this time I was re-married after having lost my first wife to cancer several years earlier. As fate would have it my new, lovely wife Robin was from Jacksonville, Florida where most of her family lived. For six years we lived in Minnesota’s
twin cities of Minneapolis and St. Paul but I knew as we approached the end of the sixth year that my condition was getting very bad. I was 68 years old and loved my job but it was clear that very soon I would be unable to do it anymore. I had great difficulty making it from our family room to the bathroom. It was time to retire.

I love to do computer research so I began digging and found that the Mayo Clinic in Jacksonville had an excellent ransplantation record and they seemed to have more organs available to them sooner than any other transplant center. Besides, Robin’s entire family lived there. The decision to move to Jacksonville was easy.

I am always proud to say that when I was a communications consultant the famed Mayo Clinic was a client. Our relationship lasted for over a quarter of century in all three of their U.S. locations (Rochester MN., Scottsdale AZ and
Jacksonville, Florida).

After buying a home and making appointments at Mayo for a thorough heart and lung examination we started to settle in to our new life. The results of the examination, tread mill test, blood work, bone scan and more were further confirmmation of what Dr. Johnson had told me. Mayo Transplant Cardiologist Dr. Jeffrey Hosenpud told me he was going to go before the hospital transplant committee to convince them that I needed to be placed on the transplant list immediately.

I will try to explain just how bad my heart was. Pumping efficiency of the organ is judged by the “Ejection fraction. (EF)” Using ultra sound they determine how much blood is pumped out of your heart. The normal EF is around 60%, mine was between 10 and 20, usually closer to 10. That meant that because my heart couldn’t pump the blood out it had to find a way to store it internally so my heart kept getting bigger, much bigger in order to hold the blood it could not pump out. When you are getting very little blood to your brain and elsewhere you slow down considerably.

The day after Dr. Hosenpud presented my case to the transplant committee he called and told me that I was going to be listed by UNOS (United Network For Organ Sharing). UNOS is the central organization that coordinates all U.S. transplants. While I was very happy with the news that I would finally be on a list (remember it was 12 years since that original diagnosis) I did not think I would have much of a chance of getting a heart after all I was now 68 years old. I was sure there were much sicker and younger people who had every right to get an available heart before me. I expected to die, sitting on our reclining loveseat in front of the TV.

Then came the biggest surprise of my life. 13 days after being listed Dr. Hosenpud called and said, “I may have a heart for you.” He told me to come to the hospital right away and that by the time I got there they would likely know better if he really did have a heart for me. Geographically Jacksonville is the largest city in America. It’s population of over a million is spread far and wide so it took some time to drive all the way across the city to get to Mayo. I remember thinking that when I got there and announced that I was called to come in for a heart transplant, pandemonium would break out just like on TV but when I walked to the reception desk and excitedly told the woman I had been called to come in because I was going to get a transplant, she ;looked at her computer screen, smiled and said, “I see that, have a seat Mr. Aronson and we’ll call your name when the Dr. can see you.” Boy did the air come out of that emergency balloon. I really wanted it to be chaos just like on TV.

I got to see the doctor just a few minutes later, around 1 PM when he told me that indeed there was a heart for me and that they would do the surgery that day. I was sent to a room, changed into one of those fashionable hospital gowns and began the wait. It was a long one. It was not till very late in the day that I was taken to an operating room and given something to “relax” me. The next thing I knew I woke up in a different room and Robin was there holding my hand and saying, “Everything went well, you have a new heart and it’s working perfectly. Your donor was a 30 year old man from South Carolina but that’s all we know.” I immediately went back to sleep.

My recovery from the transplant surgery was tough very tough, t took two years. There was no problem with the transplant but several other health problems emerged like pneumonia, then a diagnosis of Chronic Oppressive Pulmonary Disease (COPD), torn rotator cutts and deep depression all of that kept me pretty inactive for a long time but between Robin my caregiver and the team at Mayo I finally came around to where I am today. Now it is 2011 and I feel better than I have for ten or fifteen years. Retired, I spend most of my time helping Robin with her business, promoting organ donation and related issues and loving my new woodworking hobby. I am a really active guy at age 72.

So — for those of you who think, “I’m too old,” or “There are so many people more deserving than me,” or “There are so few organs I’ll never get one,” I am the example that all of those hurdles can be overcome. Do not ever give up hope, never, ever!

Thanks for reading my story.

Also…there is more information on this blog site about other donation/transplantation issues. We would love to have you join our

Facebook grou[, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Categorized in Bob's personal stories

Feb

Stop the Insanity Now!

(The writer, Bob Aronson, got a new heart on August 21, 2007 at the Mayo Clinic in Jacksonville, Florida. He has been an outspoken advocate for blood, organ and tissue donation, transplantation and related issues)

Due to several economic and political factors America’s health care safety net is in danger of disintegrating leaving millions of people with only emergency rooms for their primary care

As the economy worsened the cost of health care and health insurance continued to rise and millions of Americans whether employed or not found themselves with little or no coverage even if their conditions were life threatening. A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states).

Many officials were elected by promising tax cuts and deficit reduction. Then, just a few weeks after the last election, their legislatures went into session and members of the bodies knew their promises were still fresh in the minds of voters. Unlike the federal government the law does not allow states to end the year with a deficit. So as the budget disparity grew tax increases were considered to be political suicide even if such moves would have helped solve the problem. That left legislators with only one way to address the state’s deficit — cut programs.

The top revenue eaters in all states are education and Medicaid. There have been or will be drastic spending cuts in both areas. While several states like California, New York, Texas and Florida are considering Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants. The move immediately affected 98 legal pre-approved Arizona citizens who were promised that Medicaid would cover their procedures. Texas, threatens to go even farther and some powerful people there want to eliminate Medicaid completely

Experts agree that anyone who is approved to be on the transplant list has a life-threatening illness that requires treatment beyond what standard medical procedures and treatments can provide and that means tissue and/or organ transplants which are highly effective but expensive. A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life. Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing. At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list. UNOS coordinates all organ and tissue transplants in the United States. Currently there are over 110,000 people on that list.

When Arizona decided to break their promise to the 98 patients they knew that without the promised transplants every one of these terminally ill people would die. Two have passed on already and a Phoenix transplant surgeon says as many as 30 more may die in 2011.

To make matters worse, the legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.” The truth is that the only option to a transplant is death; there are no other medical remedies for these patients and — organ and tissue transplants do work. Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75% of the time. The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run. Governor Brewer and the Legislative leadership has ignored that information and continue to use the same old incorrect data in order to justify their unconscionable actions.

The Arizona lawmakers insist that the transplant cuts will save $5 million but the state’s own research indicates the figures are lower — $800,000 in 2010 and $1.4 million in 2011. Governor Brewer has $30 million in discretionary federal stimulus funds that she could use to save these lives. She says the money is spoken for but won’t say where it’s going. In the meantime she found $2 million to conduct algae research and another nearly $2 million to fix a roof.

Steven Daglas a 30-year-old Republican from Illinois with whom I’ve talked studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs. Acting in a respectful, responsible and helpful manner he presented his findings to the Governor. He, too, has been ignored.

Now Arizona wants to cut almost 300 thousand people from Medicaid which will place a burden on hospital Emergency Rooms that are required by law to treat anyone who comes in, insured or not. That most certainly will cause a hike in the cost of healthcare and penalize hospitals and patients at the same time. If you think ER waiting times are long now wait a few months, it will get much worse.

Governor Brewer in a game of smoke and mirrors has stated that she is setting up a fund for critical cases that should help the Arizona 98 get their transplants. But the fact is this action may make it even less likely because by removing nearly 300 thousand people from Medicaid the fund will be depleted almost immediately and the likelihood of the transplant patients getting the care they need is below minimal.

Unfortunately this is only the beginning. Other state legislatures are meeting, too and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do.

I believe, as do many Americans, that allowing the critically ill to die in order to balance a budget or achieve political gains is wrong and criminal in nature. This is a civil and human rights issue and no one should have the right to decide who lives and who dies. In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives. We can find absolutely no justification for this cruel and unconscionable action. It must be stopped, you can stop it. Let your voices be heard. Join Facebook’s Organ Transplant Initiative (OTI) and/or Dream of Life Coalition (DLC).and become a volunteer to stop this insanity.

On March 5, 2011 The Dream of Life Coalition will hold a rally at the state capitol in Phoenix, Arizona to send a strong message to Arizona about the immorality of denying Medicaid coverage to transplant patients. It will start at 9 AM at St. Mathew church. Walk with us and show your support. There’s a hole in the dam and we have an opportunity to patch it. Can you stand by and do nothing?

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com. Also…there is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook pages, Organ Transplant Initiative and The Dream of Life Coalition The more members we get the greater our impact on increasing life saving organ donation

Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Categorized in Assault on Medicaid
Tags: Arizona, Education, Health, Jan Brewer, Medicaid, Organ transplantation, United Network for Organ Sharing, United States

Feb

Give Me Your Tired, Your Poor – and We Will Let Them Die

(The Author, Bob Aronson, is a heart transplant recipient, former journalist, former Communications Director for a Minnesota Governor and retired international communications consultant. He lives in Jacksonville, Florida with his wife Robin)

If Medicaid dies so does American morality and compassion. Due to several economic, political and yes, even some human selfishness factors, America’s health care safety net is in danger of disintegration leaving millions of people with only emergency rooms for their primary care. Most disturbing is the fact that the great majority of terminally ill patients who depend on life saving organ and tissue transplants, dialysis, radiation and chemo therapy, hospice and other complex surgeries and treatments will simply be sent home to die. It is happening in Arizona and it is likely to happen in many other states as well and but for a committed few is being met with apathy and disdain for those affected.

The danger is imminent but many Americans just don’t seem to care. If we let this happen America will have lost part of what has made it great, ““Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!” These last few lines in a poem by Emma Lazarus, speak for all eternity the words of compassion for which America is known. If Medicaid dies so do those words on the Grand Lady in the Harbor that inspired so many millions who came to these shores.

As our economy worsened the costs of health care and health insurance continued to rise. Millions of Americans whether employed or not have found themselves with little or no coverage even if their conditions were life threatening. A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states)

Across the width and breadth of the United States many officials were elected on promises of tax and spending cuts so as budget deficits grew tax increases were out of the question, they were considered political suicide. Unlike the federal government the law does not allow states to end the year with a deficit. In every state, legislatures meet shortly after election day so the lawmaker’s immediate top priority was budget slashing — often indiscriminate and cruel in its nature.

The top revenue eaters in all states are education and Medicaid. While there have been some cuts in education most of the emphasis in the new year has been on Medicaid and the cuts and proposed cuts have been both dramatic and life threatening. While several states like California, New York and Florida are considering huge Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants. The move immediately affected 98 pre-approved Arizona citizens who were promised that Medicaid would cover their procedures.

Experts agree that anyone who is approved to be on the transplant list has a life-threatening disease that requires treatment beyond what standard medical procedures and treatments can provide. In the great majority of cases that means tissue and/or organ transplants which are highly effective albeit expensive will not be available unless you are insured or very wealthy. A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life. Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing. At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list. UNOS coordinates all organ and tissue transplants in the United States. Currently there are over 110,000 people on that list.

To make matters worse, the Arizona legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.” The truth is that the only option to a transplant is death; there are no other medical remedies for these patients. And — organ and tissue transplants do work. Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75-80% of the time. The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run. http://www.a-s-t.org/news/new-ast-asts-unos-review-concludes-az-medical-data-shows-eliminated-transplants-work (You can also go the Website of the American Society of Transplant Surgeons web page and click on the first item, December 9, 2010 Arizona Transplant Cuts Based on Flawed Data http://www.asts.org/thesociety/positionstatements.aspx) Governor Brewer and the Legislative leadership have ignored that information and continue to use the same old incorrect data to justify their inhuman action. Is this any different from perpetuating a lie?

Steven Daglas a 30-year-old Republican from Illinois studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs. Respectfully he offered his findings to Governor Brewer and the legislature. He, too, has been ignored.

Now Arizona wants to cut almost 300 thousand people from Medicaid which will cause a hike in the cost of healthcare and insurance while penalizing hospitals at the same time. If this legislation is passed and spreads to other states and a flood of patients of Noah’s Ark proportions hits hospital emergency rooms the death toll will mount into the hundreds of thousands if not millions and health care and insurance costs will rise until only the ultra-rich will be able to afford them. That’s the scenario friends. You can deny my hypothesis, you can call it exaggerated and sensationalized but the fact remains that cutting Medicaid to the bone or eliminating it altogether as Texas would like to do, will cause a major financial and health disaster unlike anything America ever seen.

Other state legislatures are meeting now, too, and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do. If we allow Arizona to balance its budget by refusing to treat the first 98 critically ill patients and then cutting another 300 thousand from Medicaid roles, the green light will be seen from California to New York and the disaster will have begun.

Many of us in Organ Transplant Initiative and other organizations believe that allowing the critically ill to die in order to balance a budget is wrong. This is a civil and human rights issue and no elected official(s) should have the right to decide who lives and who dies. In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives. We can find absolutely no justification for this cruel and unconscionable action. Politicians who pander to base selfishness and allow people to die are really no different from the street thug who maims and even kills an innocent citizen for their money.

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com. Also…there is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook pages, ORGAN Transplant Initiative and The Dream of Life Coalition The more members we get the greater our impact on increasing life saving organ donation

Categorized in Assault on Medicaid
Tags: Arizona, Emma Lazarus, Jan Brewer, Medicaid, Organ transplantation, United Network for Organ Sharing, United States

Jan

Save Arizona Lives, Make This Video Viral

The campaign to save the lives of the Arizona citizens who were promised and then denied Medicaid coverage for their terminal illnesses is picking up steam. Organizations from all over the United States and the world are joining the effort to get the Arizona legislature and Governor Jan Brewer to reverse their inhuman decision.

Two of our Allies, Transplant Recipients International (TRIO) and The FAIR Foundation have thrown their significant weight behind this effort and they are having a huge impact.

Visible cracks in the Brewer administration foundation are appearing daily. Arizona legislative leaders are now saying they want to review the decision, even Governor Brewer has indicated she might, might be willing to discuss the issue but that will only happen if they really feel the pressure.

To this point Governor Brewer has defended her decision by using inaccurate and, in some cases, totally false data but it is being challenged daily by prominent physicians, medical associations and even, the United Network for Organ Sharing (UNOS) which usually steers clear of controversial subjects (UNOS coordinates all organ transplants in the United States).

All of the Television networks, have been reporting on the issue as have newspapers and radio stations. Our Video, “A Promise Broken” which was released yesterday January 6, 2011 has been watched by thousands from all over the world but we are just getting started. We need to continue to build the pressure the Arizona politicians are beginning to feel.

“A Promise Broken” is a powerful six minute PowerPoint slide show that exposes the misinformation campaign that has resulted in the deaths of two Arizonans already. You can view this compelling presentation at www.savethearizona98.com or on You Tube at http://www.youtube.com/watch?v=yq5cGoRMne4 Permission is granted for appropriate use of this production to advance the cause of reversing the Arizona decision to deny transplants.

On You Tube http://www.youtube.com/watch?v=yq5cGoRMne4 you can find it under “Save the Arizona 98” but because we have little in the way of financial resources we had to upload an evaluation copy created by some free internet software so please be patient as you watch it if it slows down a bit.

As noted we have no funding to promote this video and we won’t make any from its release because it viewing is free, that’s why we need your help to make it viral. Please view it and if you like it pass on the URL to others. Post it wherever you can because every time you do we get one step closer to saving lives.

Because of the Arizona decision to deny organ transplants to Medicaid patients two people have already died. The longer it takes to change the law, the more deaths we will see. That’s just not acceptable, so join the cause, and make “A Promise Broken” viral. Do it now, the lives you save could be someone near and dear to you. If Arizona gets away with this, it will begin to happen in other states. The video should become viral…not the program that causes the deaths.

Please help, now. Your fellow Americans are counting on you. www.savethearizona98.com. http://www.youtube.com/watch?v=yq5cGoRMne4

If you go to www.savethearizona98.com you’ll find some links on the left side of the page that not only take you to the video but also offer you an opportunity to buy T-shirts and other products (all the profits go to the National Transplant Assistance Fund (NTAF) or there’s a link where you can contribute directly to NTAF and purchase nothing.

When you click “Play” on “A Promise Broken” let it roll. The slides will change automatically. When you’ve finished viewing it you are invited to tell others about it. No permission is needed for it to be used in a manner appropriate to the cause. Also, we’d appreciate if you returned to Bob’s NewHeart and commented about what you’ve seen.

Please visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Arizona 98
Tags: Arizona, Facebook, Health, Jan Brewer, Medicaid, organ donation, Organ transplantation, United Network for Organ Sharing, United States

Jan

A Promise Broken — The Arizona 98 Video

Today, January 6, 2011 we learned of the death of another of the Arizona 98 — now there are 96. Out of respect for their memory we will continue to call our organization “Save the Arizona 98.”

Early this morning I finished production on a six minute slide show called “A Promise Broken — Life Denied. It tells the story of how the 98 found themselves without promised Medicaid coverage for the life saving transplants they so desperately need.

Also included in the slide show are the criteria for qualifying for an organ transplant and why these 98 needed Medicaid to help them because they had already used up all their resources to stay alive.

You’ll find another section “Arizona – 100% Fact Free” which clearly shows how the claims made by Governor Jan Brewer have been distorted.

Finally you’ll find some suggestions on what you can do to help. There really is no need for anyone else to die because of lack of money.

If you go to www.savethearizona98.com you’ll find some links on the left side of the page. Click on “A Promise Broken” slide show and let it roll. The slide will change automatically. When you’ve finished vieweing it you are invited to tell others about it. I did not copyright the show so no permission is needed for it to be used by others. Also, we’d appreciate if you returned here to Bob’s NewHeart and wrote a comment about what you’ve seen.

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Arizona 98 and Uncategorized

Dec

Waiting for a Kidney — The Jay Robare Story

Jay Robare of Florida designed the Save the Arizona 98 poster. Jay, is waiting for a kidney transplant. I offer these stories in order to get people to join the Save the Arizona 98 movement. In case you missed it Arizona first promised then denied 98 of its pre-approved citizens that Medicaid would pay for their organ transplants. These people will die without the procedure.

“Save the Arizona 98″ is a two fold program. 1) to work to reverse the decision to disallow Medicaid payment for transplants and 2) to raise money for the transplants in case the decision is not reversed. If the decision is reversed the money raised can go to other transplant patients in need. Please read my blogs about the issue and use the links provided below to join our group. Here’s Jay’s story in his own words.

Jay Robare’s story
Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that al the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literary killing us.

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an aye on my health and changes in my DNA.

Last month I had weird liver numbers and they ordered a full set of tests including a liver biopsy which scared me. My local doctors were thinking that I had a liver disease which stored too much copper in my system; they called it Wilson’s disease. Before I got the biopsy, I thought that I was going to have to get a liver transplant as well as a new kidney…I was a wreck! The day of the biopsy came and I wanted to get knocked out but before I knew it, I herd a clink and it was done. I worried for a week but the results came back and I was clean, no Wilson’s disease. Within a week Ann, my transplant coordinator took me off hold and I was back on the waiting list.

I met Bob Aronson about 3 months ago on Facebook. I used to read all his stuff and I, being a troublemaker, would contradict the man. I soon learned that the guy not only knew his stuff but he was a good writer too, we buried the axe and became friends.

This thing with the Arizona 98 has got me drawing again; I used to be so bummed out about not having a life, I gave up drawing but thanks to Betsy, one of my very good friends and Bob, I am drawing caricatures and designing flyers again.

Life is tough sometimes but with my friends, my faith in God and His son Jesus and now that I am drawing again, I can think I can make it through the storm until I get my kidney. I hope this has helped someone.

Don’t forget the Arizona 98 campaign. there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com. You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Arizona 98
Tags: Arizona, Facebook, Health, Kidney, Medicare, Organ transplantation, Patient, Peritoneal dialysis

Dec

Finally, The Ability to Compare Dialysis Centers

ATTENTION DIABETICS! If you need or will need dialysis you must visit this site. Through the Freedom of Information Act (FOIA) a journalistic group has lifted the veil of secrecy surrounding dialysis mortality, transplant listings and more and allows you to compare facilities in every state.

Normally my blogs go into some detail on an issue but this time the posting will be short because the link I provide will give you all the information you need and you can personalize it for your individual needs. Pro Publica Journalism in the Public Interest, got this information through diligence and patience.

This is one of the most important stories to come out in a long time and so far it has been virtually ignored by the mainstream media.

Please visit this link and comment. http://projects.propublica….org/dialysis/

And…don’t forget the Arizona 98 campaign. there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com. You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Kidney Disease
Tags: Arizona, Dialysis, Facebook, Freedom of Information Act, organ donation, Organ transplantation, ProPublica, United States

Dec

The Arizona 98 — The Full Story

5 Comments

Since October I’ve been leading a national Facebook campaign to save the lives of the 98 Arizonans who were promised, then denied Medicaid coverage for organ transplants by the legislature and governor Jan Brewer. They are only on Medicaid because their conditions have made them too sick to work and too weak to raise the money needed to save their lives. They are powerless, helpless people for whom the Governor has absolutely no compassion. She has not offered any words of sympathy, any support in helping to raise money or even to meet with them. She simply says, “We don’t have the money” and blames so-called Obamacare for the Arizona mess. But, the fact is that the Arizona legislature passed and she signed the bill BEFORE the Obama bill even passed congress.

That isn’t the only mischaracterization the Governor has made. She has received over $1 billion in federal stimulus funds, $30 million of which is discretionary; she can use it any way she wants to. She says all the money is spoken for, but she refuses to tell anyone what she will spend it on, she won’t even talk to the media. Strangely she found $2 million to study algae and another nearly $2 million to repair a roof. Voters even approved nearly $100 million for a spring training facility for the Chicago Cubs. By cutting the Medicaid funds that would have paid for these people’s transplants the state will save between $1.4 and $4.5 million out of a nearly $9 billion budget.

Governor Brewer has fudged on other issues as well. She says transplants don’t work, that they are optional. Well, I can testify that they work and so can thousands of other people. As to it being optional the only option for someone who needs a transplant is death. You cannot be certified to be listed for a transplant unless a physician who specializes in your particular illness convinces a hospital transplant committee that you will die unless you get a transplant. Brewer also says the state still covers liver transplants but that, too, is not true. They Don’t. One of the 98, Francisco Felix, was on the operating table being prepped for a liver transplant donated by a relative when the order came that the state wouldn’t pay for it. He was awakened, sent home and his relative’s liver was given to someone else. Can you think of anything more cruel?

Several well known, highly respected transplant experts have contacted the governor telling her that the information she used to make the decision was outdated, erroneous and incomplete but she has refused to acknowledge them and continues to use the same wrong information as she did just recently on Fox news with Greta Van Susterin.

The Arizona Legislature meets on January 10 to reconsider the action and while Republicans have an overwhelming majority some GOP leaders have suggested that perhaps they were wrong and should reverse their previous decision, so there is a good chance of reversal even though the Governor refuses to change her mind. That means that we must put pressure on the legislature to pass a veto-proof bill that will return the transplant coverage to the Arizona 98. All we are asking for is that the state honor its promise.

I would ask you to do these things.

1) Write to the Arizona Senate Majority leader and the Speaker of the House urging them to restore Medicaid transplant coverage (I have no names for these people because they will be selected when the session begins).

2) Get on Governor Brewer’s Facebook page and using logic and diplomacy, urge her to change her mind.

3) Join my Facebook group, Organ Transplant Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 The more members we have the more clout we’ll have with elected officials and other decision makers, so far we have nearly 800 members.

4) Spread the word. Tell everyone you know about the tragedy unfolding in Arizona and ask them to take action by contacting elected officials but also by telling their friends through the use of social networks, blogs, email and whatever else they can think of. .

5) If the legislature doesn’t change its mind the 98 will still need transplants so I have started a fund drive, “Save the Arizona 98″ through the highly respected National Transplant Assistance Fund (NTAF). If you go to www.savethearizona98.com you will find a link where you can purchase T-shirts and other products with the Save the Arizona 98 graphic on them. ALL profits will go to the NTAF and there are no administrative fees or expenses charged for our service. The Link also offers an opportunity to donate directly to NTAF and designate exactly who you want to help. When you enter the site you will see a large “Save The Arizona 98” sign. You have permission to download, distribute and use it in any way that will help save these lives.

Please help in this effort. Right now Arizona is the only state in the union that has denied organ transplants for Medicaid patients but other states aren’t far behind. We must send them a message that Americans won’t stand for letting our neighbors die.

If you believe in keeping promises, helping the sick, equal treatment under the law and preserving life, this cause is just right for you.

The only obligation any government has is to protect its people. It is in the U.S. Declaration of Independence and in the Preamble to the constitution. Will you help?

Thank you from the bottom of my donor’s heart.

Bob Aronson

Also…visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Arizona 98
Tags: $30 million, Algae, Arizona, Arizona Legislature, Chicago Cubs, cruel, Facebook, Francisco Felix, heart, Jan Brewer, liver, Liver transplantation, Medicaid, Organ transplantation, Repair roof, Save the Arizona 98, sent home, surgery, United States

Dec

Arizona –The Rich Get Richer, The Poor Get Poorer and the Sick Get Dead.

NEWS RELEASE December 14, 2010

For more information contact Bob Aronson bob@baronson.org

In early October, 2010 Bob Aronson, heart transplant recipient and founder of Organ Transplant Initiative (OTI), started a nationwide drive to reverse the Arizona decision that denies Medicaid patients vital organ transplants. http://www.facebook.com/#!/group.php?gid=152655364765710 He also has a very popular blog site devoted to donation/transplant issues with recent posts aimed at the Arizona issue http://bobsnewheart.wordpress.com.

“Everyone on the transplant list is dying,” says Aronson, “And Governor Brewer’s claim that transplants are an optional treatment is totally without foundation. The only option to a transplant is death. I know, I would have been dead three years ago if I had not received a new heart.”

Aronson a former Minnesota Governor’s Press Secretary and now living in Jacksonville, Florida says, “I understand how serious budget problems can be, but you don’t solve them by killing your citizens.”

Organ Transplant Initiative has rallied people from all over the country with their “Save the Arizona 98” campaign. Additionally the group has a website www.savethearizona98.com where people or organizations can buy T-shirts and other products bearing the slogan, “Save the Arizona 98.” All profits go to the National Transplant Assistance Fund and there are no administrative fees or expenses charged to the proceeds. The site also offers the option of donating directly to the fund and designating the specific person or persons you want to help.

“Governor Brewer blames so-called Obamacare for the Medicaid problems,” states Aronson, “But Arizona approved cutting transplants before the Obama bill passed congress.” He notes that, “While Americans have a guarantee of Life, Liberty and the Pursuit of Happiness, Arizona has opted to deny life and liberty in favor of the Pursuit of Mexicans, because,” he says, “The Governor has diverted millions of Federal stimulus and other dollars, to her border protection program. Those dollars could have been used to save and enhance lives. They weren’t.

Permission is granted to copy and use this release in any appropriate manner to help save the Arizona 98.

From Bob Aronson

If you would like to donate money to help these Arizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF). You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/

The more members we get the greater our impact on increasing life saving organ donation

Categorized in Arizona 98
Tags: Arizona, Arizona Health Care Cost Containment System, Bob Aronson, bobsnewheart, Health, Heart transplantation, Jan Brewer, Medicaid, National Transplant Assistance Fund, NTAF, Organ Transplant Initiative, Organ transplantation, Press Secretary, stimulus, t-shirts, United States, www.savethearizona98.com

Dec

THE FIRST DEATH PANEL

Categorized in Death Panels

Dec

Organ Transplants Work, Donations Are Up, Hope is Real!

6 Comments

In Arizona there are 98 patients who have been approved for organ transplants but because of cuts in state run Medicaid there is no money available to pay for the procedures. There has been a lot of misinformation about the effectiveness of transplants and some have even suggested that there isn’t much hope for most of these patients anyway.

I contacted my friends at the United Network for Organ Sharing (UNOS), the national organization that coordinates all transplants in America, and asked them to write a guest blog on the facts about donation and transplantation. Jim Gleason, a heart transplant recipient, activist, UNOS committee member and National President of Transplant Recipients International Organization (TRIO) responded with compassion, facts and hope

Jim Gleason, UNOS

Sixteen years ago, with heart meds running at their fullest and the heart still failing, I waited for any news of an available heart to replace my failing one. I felt no fear of death as each day seemed to draw nearer to that possibility, never giving up hope and continuing to pray each night “…Thy will be done.” Imagine my emotions when 6am the next morning, Heather, my transplant coordinator nurse, called with those awaited words, “Mr. Gleason, I think we have a heart for you!” Even today when I share that part of the amazing story, those emotions well up bringing tears to my eyes, causing me to pause before continuing for so many audiences over these many years. Yes, that did become my “new heart” and I’ve been enjoying a fulfilled and productive life ever since, thanks to that generous donor family decision.

Viewing developments from my 16 years post heart transplant life history, I see major improvements in every direction. Technology is keeping us alive longer, making the wait for a transplant more successful and raising the quality of life post-transplant dramatically. I offer this vision of hope to you from years of personal observation and life experience. Allow me to share some examples.

Reports of improvements in donated organ preservation will dramatically affect where those organs can travel to the neediest patients. Through preservation pumps, a donated organ’s condition is being improved, before they are implanted, resulting in both healthier transplants and allowing previously discarded organs to be made viable for transplant. I see healthier recipients coming back to fulfilled and productive lives than ever before, especially in today’s lung recipients, as one example, where in days past, this was almost a rarity and too often a short-lived success. Heart patients are waiting for their transplants at home, often supported by miniature-implanted pumps that can keep them alive, sometimes without even a human heart, for months and beyond the one-year milestone that seemed impossible just years ago, now almost commonplace.

Recently our support group heard a presentation about “growing transplantable human bladders” from the patient’s own cells. When we asked how soon this might be a viable option, imagine our surprise in hearing that over a dozen had already been grown and implanted in children as part of the yearlong trial to get government approval, and that such bladders were grown in just 6 to 8 weeks! Now even the invasive biopsy used to test for possible heart rejection after transplant has been supplemented by a simple blood draw. Through complex DNA testing that test yields a “risk of rejection” metric that can be used to reduce the previously large number of very expensive biopsies ($60k each I heard recently) with these $3k blood tests. Now that’s progress and hope for us all.

OPO’s (i.e, the organ procurement organizations that work with UNOS to insure organs get to the right patients) and transplant center staffs are teaming up to share best practices, increasing donation rates, patient survival and improving the overall patient experience, before, during and after the transplant. The lifesaving but very expensive immuno-suppressant meds that years ago were given in heavy dosages with long-term possible toxic side effects on the kidney and liver, for example, are today proving effective in lesser amounts. As one very successful and long-term transplant surgeon explained candidly to our support group, “We are discovering that the body itself can deal with those rejection challenges supported by far lesser amounts of those meds.” Or as another patient, twenty-four years out from an 1986 heart transplant, heard from his transplant doctor, “We really didn’t have enough experience back when you were transplanted – often making “seat of the pants” decisions based on what seemed to be working so far. Today we have so much more to work with in proven practices that are shared world-wide to the benefit of patients everywhere.”

When my own kidney ten years post-transplant showed early signs of weakening due to those meds, we had two new alternative drugs that I could be switched to that resulted in improving that kidney function before a transplant was needed. Today, as I find myself on Medicaid supported insurance, even the high cost of those brand name drugs, a major financial challenge for many post-transplant, are replaced with equally effective low cost co-pay generics. As we live longer and healthier post-transplant lives, we enjoy the increasing benefits of such developments, both in quality of care and in cost of that care, as evidenced by these modern drug improvements. At a recent heart transplant dinner celebration of life, our local organization of 800 heart recipients, honored eight who were over 20 years out with their “new” hearts – and I stress that was just our “local” area support group! We were all given hope and inspiration by their example, and again, that was from the early era of very challenging heart transplants. How much more we can expect today with today’s protocols, much improved over the past half century in hearts, as just one example.

My personal post heart transplant experience has included seven years of working on three different UNOS committees. Know that there are over 20 UNOS committees supported by more than 700 volunteers of all backgrounds – yes, even candidate and recipient patients like you and me – working to make the process constantly better, keeping up with the ever improving developments in medical and computer/communications technology. All serve without pay, dedicating their time and talent to help you get that transplant in the shortest and healthiest manner possible. In seeing such dedication and hard work, I come away knowing that our process is in good hands and will continue to improve each and every year in a transparent environment that is open to anyone who cares to take the time to see it through the UNOS web site or even personally visits them in Richmond, Va. “Been there, done that!” and I can tell you it’s worth the trip.

The organ allocation process is constantly under review and revision by these UNOS committees, all done open to public preview and comment. Currently, a concept known as “net benefit” is used as a basis for ongoing changes in allocation policy to insure that scarce organs are going to patients who will receive most long term life-years benefit from the right gifted organ. Strict rules and constant oversight insure that organs go to those in most urgent need, not just those who waited the longest. We may see a critical patient sometimes getting a liver transplant, as one example, with short wait times. This may seem unfair to another who, less ill, can still wait for their transplant while that other life is saved “just in time.” It’s a balancing act that is constantly simulated, reviewed and improved, with the results then compared to the expected outcomes for confirmation or correction within those committees.

We see and are concerned that the national waiting list is constantly growing. But realize that this is due to the success of organ and tissue transplantation and people surviving longer with now older bodies that need replacement organs. Patients are finding out about transplant success as an option to their condition – all good news. Not a day goes by that we don’t read or hear about the results of increased living donations. Now that the “paired donation” process is allowing a living donor and their unmatched recipient to share kidneys among a chain of (most recently I saw 14…) individuals, the waiting list benefits as those transplanted are removed in that chaining process. Yes, I feel amazed and hopeful in seeing progress like that.

And also there is good news in that organs donated and organs transplanted have increased significantly over the past decade through the work of national “breakthrough collaboratives.” These cooperative nationwide efforts have served to both identify and spread the “best practices” of organ and tissue donation to hospitals and OPO’s across the country, especially those with the highest donation environments. That growth continues but at a slower pace recently, calling for even more work in educating everyone about this urgent need. But that’s where you and I come in.

Patients are the living examples of both the need and the success of transplant today. As you wait for your transplant, and again especially after recovering from a transplant, spread the word with your personal life experience as evidence of that need/success. The most effective message is that one-on-one face to face that only you and I can give. Remember, the lives you save in promoting organ donation may be both yours and mine!

From Bob Aronson

If you would like to donate money to help these Aizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF). You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/

Also…visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710 OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .

The more members we get the greater our impact on increasing life saving organ donation

Categorized in New Hope for Organ Transplant Patients
Tags: Arizona, Heart transplantation, Medicaid, organ donation, Organ transplantation, Patient, United Network for Organ Sharing, United States

Nov

Arizona Governor, “No Transplants for Medicaid Patients (the poor)”

8 Comments

Let’s start this blog with this undeniable medical fact, “Everyone on the transplant list is dying.” They are suffering from organ failure and that means sure death unless they get an organ transplant. I know of what I speak because until August 21, 2007, when I got a new heart, I was dying from end-stage dilated cardiomyopathy.

By way of this blog I am asking readers to make every effort to help save the 98 people in Arizona who were approved for transplants but have now been denied the life saving procedure. You’ll find a donation link at the end of this posting.

The Decision by Arizona Governor Jan Brewer and the state legislature to cut Medicaid coverage for most organ transplants is arbitrary, cruel in the extrreme and, I believe, in violation of both the Arizona and U.S. constitutions.

As of October 1, 2010 Arizona Medicaid stopped covering heart transplants for non-ischemic cardiomyopathy, lung transplants, pancreatic transplants, some bone marrow transplants and liver transplants for hepatitis C patients. That means that about 98 people who had previously been approved for transplants will not be eligible unless they can raise the money on their own. Transplants can cost from $150 thousand to $500 thousand which does not include the anti-rejection drugs transplant patients must take for the rest of their lives.

Arizona will save approximately $5 million by cancelling Medicaid organ transplant coverage. So — not only have the state’s politicians decided to let 98 people die, they have also decided that human life in the state is worth exactly $51,020.41. Don’t be surprised if in the future some life insurance company uses that figure to attempt to reduce jury awards in cases of personal injury and death.

The Arizona Health Care Cost Containment System (AHCCCS) spokeswoman Monica Coury said her agency had the “horrible task” of putting together benefit reductions, and that the transplants affected represent a small number of patients (so that makes it Ok to let them die?).”

“Patients with cystic fibrosis who get a lung transplant might get extra time with a good quality of life, but inevitably the CF will re-infect the new lung,” she said. “Not everyone on that list is going to get an organ anyway. There is a shortage of viable organs for these folks waiting on the list (so if there are not enough organs why save a few? We should just let all of them die). ”

Read the story of a 27 year old Cystic Fibrosis patient who was depending on a transplant (but, of course, according to spokesperson Coury, it would only “give her extra time with a good quality of life.” So why bother?). http://azstarnet.com/news/science/health-med-fit/article_c8288a3a-8135-5cc9-bf0d-0745071bd74a.html

Almost every American political organization agrees that the U.S. Constitution was created to form a government whose sole purpose is to serve the People as stated in the Declaration of Independence. “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights. That among these are Life, Liberty and the pursuit of Happiness.”

The preamble to the Constitution states: “We the people of the United States, in order to form a more perfect union, establish justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.”

Founding father Alexander Hamilton maintained that the clause, “Promote the general welfare” granted Congress the power to spend without limitation for the general welfare of the nation. So I ask, why is it more acceptable to limit spending on general welfare but to give defense an almost open checkbook, especially when both items are given the same emphasis in the same sentence of the preamble to our constitution?

The Constitution of the state of Arizona says, in Section 3 of Article ll in the Declaration of rights, “The Constitution of the United States is the supreme law of the land.” That means Arizona must adhere to the guarantee of the General welfare in the U.S. Constitution. Their own constitution gives them no options on the matter..

Article ll of section 4 of the Arizona constitution declaration of rights also says, “No person shall be deprived of life, liberty, or property without due process of law.” Due process of law usually meaning the right to be heard in court, has been denied here, too. Some say the Governor and the legislature have acted as vigilantes in sentencing 98 Arizona citizens to death.

If we allow Arizona and perhaps other states to arbitrarily sentence people to die (mostly poor people by the way) where will it end? During congress’ deliberations on a health care bill it was charged that the Obama Administration would set up “Death Panels” to decide who would live or die if the new health care bill was passed. Interestingly, “Death Panels” have been established, not by Obama, but by the very people who condemned them.

Please make your most vigorous protest to the Governor of Arizona by calling her office at 602 542 4331 emailing her at http://www.governor.state.az.us/Contact.asp or sending a letter to Honorable Governor Jan Brewer 1700 West Washington Phoenix, Arizona 85007.

Additionally I suggest you express your outrage by getting the facts out to Radio talk shows, Facebook Friends, Tweeters, newspaper comment pages, news agencies and anyone else you think could influence the decision makers in Phoenix. This is not a frivolous matter, 98 lives are at stake here and we must do everything in our power to save them.

The more members we get the greater our impact on increasing life saving organ donation.

Categorized in Medicaid and organ transplants
Tags: Arizona, Arizona Constitution, Arizona Governor, Arizona Health Care Cost Containment System, cruel, Cystic Fibrosis, death sentence, Health, Health Care, inhuman, Jan Brewer, Medicaid, Organ transplantation, Transplants denied, U.S. Constitution, United States, Vigilante

Oct

Ending the Organ Shortage Through Regeneration

4 Comments

I’ve written about regenerating organs in the past and found that while many like the idea many others think the process would violate some religious principles so let’s put it in perspective.

First, it is important to define regeneration. Your body already regenerates some organs on its own. For example, have you ever cut yourself and then noticed that within a short time the cut disappears and there is no evidence of the cut on your skin. That’s because skin, the largest organ in the human body, regenerates itself. Another human organ with the same capability is the liver, which is why a person can donate a part of their liver to another person who needs a transplant. Both the donor and the recipient’s liver parts can then re-grow into normal, healthy livers.

Scientific or technological regeneration of organs is not possible now but could be in a few years. Apparently there are several methods that could be used that would allow us to grow new organs if the old ones become diseased or damaged. For example if a person suffers from a weakening of the heart muscle (cardiomyopathy) we might be able to replace the old heart with one grown from our own cells. That means there would be no rejection because the body would not recognize it as a “foreign” object like donated hearts. Subsequently there would be no need for the very expensive anti-rejection medication that transplant patients must take for the rest of their lives.

At this moment there are over 110.000 people on the U.S. transplant list. All of them will die unless they receive a life saving organ and those organs are only available from voluntary living or deceased donors. Unfortunately only about 40-50 percent of Americans are donors and that means many of the people on the list will die waiting. It does not appear that the U.S. will change the method of obtaining donors any time soon so we have two alternatives, regenerating organs or developing much more sophisticated mechanical organs. Growing new organs may be preferable because they would be real and would not be rejected by the body but additionally such an achievement could mean the end of the organ shortage and that’s why there is so much excitement surrounding the issue.

The use of embryonic stem cells to re-grow organs is a method that seems to be the most controversial because some claim that an embryo is a human life and therefore we shouldn’t use them. But there are other methods as well and we’d like to hear your thoughts about any of them.

The world famous Mayo Clinic recently announced that regenerative medicine is a top priority for the organization and is moving ahead on some exciting research into using Pluripotent stem cells. “Huh?” You say, “What are they?” According to Mayo, Pluripotent stem cells come from your own body and have the potential to produce almost any other cell in the body. Mayo summarizes the process in four steps:

1. Take a few cells from a human.

2. Keep the patient stabilized long enough for more cells to be grown.

3. Re-engineer the cells to turn them into adult Pluripotent stem cells (the kind that can be triggered to change into any tissue, without the need for controversial embryonic stem cells).

4. Inject the cells into the damaged tissue of the person from whom they were taken. Or replace the patient’s damaged organ with a new, healthy one (grown from the person’s own cells). http://blog.targethealth.com/?p=11930

According to the Exploring Stem Cells website (http://www.explorestemcells.co.uk/pluripotentstemcells.html) Pluripotent stem cells provide a chance to get a renewable source of healthy cells and tissues to treat a wide array of diseases such as heart disease and diabetes. Burn victims and those who suffer from autoimmune diseases such as Parkinson’s can all potentially benefit from the use of Pluripotent stem cells.

Pluripotent stem cells have a vast potential for the treatment of disease, namely because they give rise to the majority of cell types in the human body. These include muscle, blood, heart and nerve cells. Another potential use for Pluripotent stem cells involves the generation of cells and tissues for use in transplantation.

Pluripotent stem cells can evolve into specialized cells that ultimately can replace diseased cells and tissues. Drug research is another area that Pluripotent stem cells may benefit. Animals are a commonly used model to assess the safety and use of drugs. Instead of initially testing drugs on animals, they can be evaluated through testing on cells grown from Pluripotent stem cells. Those drugs that appear tolerated and safe can then progress to testing on animals and finally, humans.

There are several areas of research that offer organ regeneration possibilities like this one just announced this year. http://www.hplusmagazine.com/articles/bio/print-your-own-designer-organs It would print yes print, new organs with ink jet technology. It sounds a little complicated and perhaps strange but it does offer potential and hope for patients.

If you are really interested in the ethical issues surrounding regenerative medicine then I suggest you take the time to read Wake University’s Ethical Issues in Regenerative Medicine http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1380162

I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue. Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 50 lives. Some of those lives may be people you know and love.

Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at http://www.facebook.com/group.php?gid=152655364765710 the more members we get the greater our potential impact on decision makers who influence all organ transplant issues. Also, check out my blog http://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.

Categorized in Organ Regeneration
Tags: anti=rejection drugs, cells, dna, donation, Embryonic, exploring stem cells, Mayo Clinic, mechanical organs, organ donation, organs, parkinsons, pluripotent, scientific, technological, Transplant waiting list., transplantation, Wake Forest

Sep

Facebook Has Gone To Hal

9 Comments

I am writing this at two o’clock in the morning on Monday September 20, 2010 because I want to report it while everything is fresh in my addled mind.

Facebook can be a wonderful tool to interact with the rest of the world, but don’t depend on them to be of any help if you ever have a problem with the service. Yes, they have a so-called “Help Center” http://www.facebook.com/help/ that looks impressive until you try to use it. There is no way you can actually talk to anyone. I have come to believe that Facebook is nothing more than a giant supercomputer like “Hal” in the movie 2001 A Space Odyssey. There are no people there, just Hal and he does not communicate with mere mortals. I’ll bet shareholders can talk to him but not us measly members.

You see, I am a heart transplant recipient and the administrator of ORDER Transplantation Initiative http://www.facebook.com/group.php?gid=15612565382 a Facebook site dedicated to helping organ donors, caregivers, those who need transplants and patients who have had them. In three years we’ve attracted over 2,300 members. Many of these people are in life and death situations, desperately waiting for life saving organ transplants that may never come. This is no breezy, lightweight page, it deals with issues and people who depend on the information we offer to make important life decisions.

For 3 years the site was named Organ Transplant Patients, Families and Friends but because we have expanded our horizons so greatly in that time I decided a name change that properly defined our group was in order so I performed the very simple Facebook function of changing the name and notifying all the members of the action.

The message I sent to members was that we had changed the name to ORDER Transplantation Initiative, along with an explanation of the meaning of the acronym ORDER. Everyone got the message. Then….Facebook or Hal sent out another message, this one announcing that I had changed the name of the group from what it was (Organ Transplant Patients, Families and Friends) back to Organ Transplant Patients, Families and Friends. Obviously the message made no sense. But the worst was yet to come. Facebook didn’t just send one bogus message to all members it continued to send the same message over and over again, hour after hour after hour. Some members got as many as 100 or more of the same message and many become very angry.

I did my best to tell everyone that the spamming was not the fault of our group but that it was Facebook that was to blame. I think my clarification got lost in the Facebook maelstrom of emails because members began to drop out of the group despite my repeated efforts to calm and reassure them.

In the meantime, just to be sure it was a Facebook caused problem I ran four sweeps of my computer with malware and virus destroying software. The sweeps found nothing. Then I checked Facebook and found that over the months scores of group administrators had complained of the same thing happening and got no, nada, niente response from Facebook. Some administrators said they lost most of the members they had worked so hard to get. Now it was very clear that Facebook was at fault and I again reported the fact to my members but to no avail, they continued to leave the group. That’s when I went back to the Facebook “Help Center” and found that you cannot reach a person there, there is no “Contact Us” icon. All you can do is choose from a list of problems, probably written by Hal, and if yours isn’t there you are out of luck.

Finally, after many internet searches and digging into the Facebook ‘Help Center” site, I found a well-hidden link that allowed you to report a “bug.” I reported it four times. Once I got a return form-letter email, thanking me for bringing it to their attention, the other times I received nothing. It is now 36 hours later and I’ve still heard nothing and we are now down some 700 members.

After about 18 hours of this nonsense I decided that the only way to stop the never-ending stream of email that was going to members was to shut down the site. That meant we’d lose all the information we had accumulated and ALL of our members,. But I determined that shutting it down and attempting to get members to re-join was a better tactic than continuing to irritate them and run the risk of losing them forever. Before doing that, however, I made one more effort to keep it open. We posted a notice on the site, telling members how to turn off the notification process on their member page so they could stop getting the Hal generated emails. The jury is still out on whether that’s working. I will write a follow-up to this blog.

How to Stop the Bogus emails. For those of you still getting the bogus emails here’s how to stop them. Go to your Facebook page, click on “Account” in the upper right hand blue bar, click on “Application Settings,” scroll down to “Groups” then click on “Edit Settings,” when it opens click on “Other Permissions, ” scroll down to “Changes the Name of One of Your Groups” and remove the check mark. that will do it.

In the meantime, a friend who is the administrator of another Organ donation/transplantation Facebook site, Rex Maus of Transplant Community Outreach , http://www.facebook.com/group.php?gid=222020559306#! was trying to help me by telling his and my members that it was a Facebook problem and we were working on it. As a result, his group started losing members and then because of his vigorous efforts on my behalf, Facebook (Hal actually because there are no people there) banned him yes, banned him, from the service. They let an angry woman write “F— You” on my group’s wall but banned Rex because he was trying to help.

Rex’s group and mine are life saving groups. People depend on and look to us for answers on how to help their dying loved ones get organs for transplantation, how to take care of them, how to register to be organ donors, new advances in medicine, science and technology and information on research into new ways to help the over 110,000 people in the U.S. who are awaiting transplants. Many of them will die waiting. For Facebook to ignore our problem is criminal.

By way of this blog we are asking readers to contact Facebook at their Corporate Headquarters, 1601 S. California Ave. Palo Alto, CA 94304 (650)543-4800, express your outrage over this situation and urge them to offer a link to reach real people who can help solve real problems. Pick up the phone ASAP and let them know that their concentration on profitability over all other issues is offensive, wrong and may even be responsible for the further suffering of our members. I, for one, am mad as hell and I’m not going to take it anymore!

Categorized in Facebook
Tags: bogus emails, Destruction of a group, Facebook, Facebook customer service, Facebook ethics, facebook group name change, Families and Friends, heart transplant, Organ Transplant Patients, Organ Transplantation Initiative, Rex Maus, Transplant experience outreach

Sep

60% of People Who Smoke Will Die From it — But You Can Quit!

Besides causing cancer and any one of a number of other health problems, smoking can destroy organs like the heart and lungs and can seriously damage or destroy others.

There are about 110,000 people in the U.S. waiting for organ transplants and there are not enough donor organs, so each year thousands of our loved ones, friends and neighbors die waiting. The number of organ donors is not increasing fast enough to end the shortage any time soon so one way of dealing with the crisis is to prevent the need for organ transplants. One way to do that is to quit damaging our organs by quitting smoking.

From time to time I will be publishing blogs from guest writers. The following post was written by Dr. Michael Burke, Ed.D, Assistant Professor of Medicine at the Mayo Clinic School of Medicine and Program Coordinator at the Mayo Clinic Nicotine Dependence Center. Dr. Burke is a highly respected expert in the field of tobacco addiction and smoking cessation.

There is nothing that is healthier for a person who smokes than to stop. Within a short time after one stops smoking, lung function and circulation improve, risk of heart attack and stroke diminish, and the likelihood of acquiring 14 different cancers begins to drop.

Symptoms from illnesses as different as diabetes, sleep apnea, and Crohn’s disease get better after a person stops smoking. Stopping before surgery significantly improves surgical outcomes through less infection, better wound healing and bone mending. Stopping smoking leads to less skin wrinkles and better erectile function, and the list goes on and on. Although people usually underestimate how dangerous smoking is, nearly everybody knows that it is unhealthy. However, about 1 in 5 Americans continue to smoke, and each day in the US, as many people die from smoking as three fully loaded 747’s crashing. Worldwide 100 million people died from smoking in the 20^th century. Predictions are that one billion people will die from smoking tobacco this century. So why doesn’t everyone quit?

One reason is that cigarettes are quite addicting. A cigarette delivers nicotine to the brain more quickly than a hypodermic needle. It is probably the best drug delivery device ever created by man. It delivers volatile high dose nicotine that, for some people, causes physical changes to a part of the brain that is responsible for pleasure, attention and stress. I say ‘for some people’.

Smoking affects people differently. Stopping smoking is actually physically harder for some people than it is for others. The differences are in large part due to genetics. To shed light on these genetic differences a group at the Mayo Clinic is, oddly enough, studying Zebra fish. http://discoverysedge.mayo.edu/zebrafish-genetics/ Dr. Steve Ekker’s group has discovered two genes that make the fish more reactive to nicotine. If exposed to nicotine when in the larvae stage Zebra fish bred to have these two specific genes will become sensitized to the nicotine. Later in life they will move and dart more quickly in the water when nicotine is added to the tank. However, if these genes are ‘knocked out’ the fish won’t become sensitized to nicotine and then later will not react when exposed to nicotine. It is wonderful to have a geneticist with a sense of humor. Dr. Ekker’s group named the nicotine activating genes Humphrey Bogart and Bette Davis after those two Hollywood stars whose style of smoking became iconic.

Although it is a more complex story in human beings, some people have Humphrey Bogart and Bette Davis genes. These people experience a heightened reward from cigarettes when they first start smoking and more intense craving and withdrawal when they try to stop. Too often these people feel ashamed, think that they just have less willpower, or think that they just don’t want to stop badly enough. Instead these folks can stop, they just need more tools and ammunition.

I once treated a woman, a nurse, from Bayonne NJ. She was clearly a strong lady. My dad would have admirably described her as a ‘tough old broad’. “People tell me I’m weak, that I should just quit smoking” she said “But, when I go half a day without a cigarette, I’m on my knees in tears I just feel so awful”. “I’m not weak” she went on. “I left a bad man, raised three kids, worked sometimes two jobs, bought my own home, and sent all three kids to college. I’m not weak! What is it about this that is so hard?” she asked me. She was most likely genetically set to have a more difficult time stopping, and she needed treatment to match that extra difficulty. We provided treatment and one year later she was still tobacco free.

Many people try and stop ‘cold-turkey’. That’s good if it works. However, less than 5% of the people who use this method are successful at six months. Counseling and medications have been proven to significantly increase the chances of successfully stopping smoking. You can learn more about how counseling works by viewing the short video at this link. http://www.youtube.com/watch?v=5EDaA26unVw

Your health care provider may provide counseling or they may have a Tobacco Treatment Specialist in the office or local area. Professional help is also available through a telephone Quit line. Every state in the US, and province in Canada have one that can be accessed through calling 1800 QUIT NOW. One online resource that many people find helpful is www.becomeanex.org. Mayo Clinic also has a Residential Treatment Program – an 8 day program that works for people who have ‘tried everything’. http://ndc.mayo.edu

There are seven ‘first line’ medications that have been proven to be safe and effective for helping people stop smoking. Five are nicotine replacement products and two are pills available by prescription: varenicline (Chantix) and bupropion (Zyban).

There is too much confusion about nicotine replacement. Nicotine replacement medications have saved many lives and can save many more. Nicotine is not the ingredient in cigarettes that causes health problems. Smoking health problems are caused by 4,000 other chemicals that people ingest when they smoke. Some of these chemicals are natural to tobacco others are added by the tobacco industry. Nicotine replacement helps manage cravings and withdrawal symptoms safely, while eliminating exposure to the awful toxins in tobacco. We encourage people to take enough of these medicines for long enough to stop smoking.

People who smoke can also talk to their health care provider about two other medications varenicline and bupropion. These medications are proven to help people safely stop smoking. Like most medications, there are some potential side effects and you should talk to your health care provider before taking these medications. But remember, if the tobacco industry had to list the side effects from smoking, it would probably fill a telephone book. Cigarettes are the only product that will kill over 60% of the people who use it in the way it is intended. Stopping smoking, by any means necessary, is the healthy choice.

Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – spread the word about the immediate need for more organ donors. On-line registration can be done at http://www.donatelife.net/index.php Whenever you can, help people formally register. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 50 lives. Some of those lives may be people you know and love.

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties. Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.

Categorized in Ending the Organ Shortage -- Solutions
Tags: 747 crash, addicting, addiction, cancer, cancers, chron's disease, cold turkey, death., deaths from smoking, diabetes, Mayo Clinic, medications, Michael Burke, Mike Burke, nicotine, organ transplants, quit smoking, replacement treatment, Rochester, smoking, smoking and health, smoking cessation, stopping smoking, tobacco dependence

Sep

Medicare — Spending Billions to Save Thousands

Government wasteful spending is totally out of control but it is the invisible waste that may be killing us. This blog is just the tip of a huge wasteful spending iceberg that no one talks about because it is supported and promoted by powerful special interest groups that spend billions lobbying elected officials to waste more of our money. Here I focus just on Medicare, but the problem is far deeper than that. http://www.cnbc.com/id/38385072/10_Ways_to_Reduce_Wasteful_Gov_t_Spending

Medicare is a great benefit to millions of people. I am a senior citizen who has directly benefited from Medicare and am very grateful that the program exists. If not for Medicare I would not have been able to afford my heart transplant at age 68, never mind the expense of anti-rejection drugs. So that’s my disclaimer. I am not an opponent of Medicare.

What I question is the many contradictions in Medicare coverage. I don’t think Medicare has considered for one moment the adage, “An ounce of prevention is worth a pound of cure.” For example, if you suffer from end-stage kidney disease Medicare will pay for dialysis until a kidney is available for transplant and they will pay for the transplant. Survival rates for transplanted organs are very high, provided patients take their anti-rejection medicine which runs about $1,000 a month. But, and here’s the rub, Medicare will only pay for anti-rejection drugs for 36 months, then you are on your own. If you can’t afford the drugs and go into rejection, Medicare will pay for your care and for continuing dialysis treatment at the rate of over $70,000 a year until a new organ is available and then they will pay for a second transplant (about $100-150,000) but the 36 month clock starts ticking again and…if you can’t afford the drugs after the three year period, you can again go into rejection and Medicare will put you back on dialysis and sometimes even pay for a third transplant. All of this unnecessary cost would be avoided if they would only consider preventive medicine and pay for the anti-rejection drugs for the life of the transplant recipient. Currently Medicare pays out almost $9 Billion (yes, a B) a year in dialysis costs. This report is a bit dated but it tells the story quite well http://www.nytimes.com/2009/09/14/health/policy/14kidney.html

But, as the commercial says, “Wait…there is more.” Medicare will not pay for Dentures or dental work. Ill fitting dentures can cause painful and dangerous mouth sores that keep people from eating, cause infections and even malnutrition. But why bother with prevention. The geniuses who make the Medicare rules would rather pay to treat the problems brought on by bad dentures than provide new teeth, avoid the associated medical problems and save the government millions of dollars.

Medicare will not pay for new eyeglasses. But if you fall down and break a hip because you didn’t see the sleeping dog on the floor in front of you, Medicare will pay for treatment or even a hip replacement and the follow-up rehab. But no new glasses, so you could fall again and go through the whole process ad infinitum. Medicare will continue to pay for your injuries, though http://ucanhealth.com/topics/?T=medicare_durable_medical_equipment

Medicare Part B helps pay for purchase of following durable medical equipment if certain requirements are met. You are responsible for paying directly, or through supplemental insurance, at least 20 percent of the Medicare approved amount.

power wheelchairs
some positioning devices
walkers, rollators
scooters
seat-lift mechanisms for lift-chairs
artificial limbs
orthotics, splints

Medicare will not pay for hearing aids. But, if you can’t hear the fire truck rounding the corner as you cross the street and are hit by it, they will pay for whatever care you need (if you survive the accident) until you are on your feet again. But hearing aids….absolutely not. Medicare would rather spend thousands if not millions on treating all the problems caused by poor hearing but they don’t even think about prevention.

I could go on and on listing the contradictions in Medicare coverage but why should I have to? Don’t our elected officials know how ridiculous all this is? Why are they so reluctant to change it? When the health reform bill passed this year the house version included a provision to eliminate the 36 month restriction on paying for anti-rejection drugs but the senate version and the final bill did not. How in the hell do elected officials justify spending billions to save thousands?

I don’t know about you but I think it’s time politicians and bureaucrats started treating our money like it was their own and quit this stupid, wasteful spending. And as I indicated earlier, this is only the tip of the iceberg. Can you imagine what the Pentagon, and other agencies waste. We could probably pay for all the social programs we need, put everyone back to work and send the stock market soaring again if the people in charge would think about what they are doing and quit making stupid decisions which are undoubtedly influenced by powerful lobbying concerns like the dialysis industry. “Nuff said for now.

If you are not an organ donor, please become one. If you are a donor please do what you can to encourage others to do the same. You can register online by going to http://www.donatelife.net/index.php

Also, please join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties. Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.

Categorized in Medicare and wasteful spending

Jun

Should Alcoholics Receive Liver Transplants?

17 Comments

This is a re-blog of a post I wrote about eighteen months ago. I am posting it again because of the extreme interest in this subject shown by scores of readers. All I ask is that you not only objectively read the material but also click on the referrences and read them, too. Your comments are are not only invited but encouraged. Addiction is a deadly and cunning disease that can strike any person at any time with no respect for race, religion, social status, gender or age. No one makes a conscious decision to become an addict, it just happens. Yes, some bad choices are made that can lead you there but chances are very good that you were born one and activation of the disease only needs the right trigger.

This is a “think piece.” I’m hoping this blog will challenge your thinking and cause you to comment. Please open your minds and consider the total picture not just a narrow view of people involved in substance abuse. I am taking no position on this issue, I am simply asking some very important questions.

Heavy drinking or alcoholism can severely damage our organs and the liver seems to be the most susceptible to such damage. So – if you were to ask the average person if alcoholics should be eligible for liver transplants the answer would likely be a resounding, “NO!”

As with most things in life, though, nothing is that simple. If transplant eligibility depended on us living healthy lifestyles then there would be no organ shortage because few people would qualify for the life-saving procedure.

According to a study, published in the April 25, 2009 edition of the Archives of Internal Medicine, led by Mathew J. Reeves who is the lead researcher and epidemiologist at Michigan State University, only 3% of Americans lead a healthy lifestyle. Reeves says a healthy lifestyle that includes not smoking, maintaining a healthy weight, regular exercise and a diet containing lots of fruits and vegetables lessens the risk of developing diabetes, cardiovascular disease and cancer. http://www.qualityeldercare.com/healthy.html

Back to the question on heavy drinking and liver transplants. Just what is heavy drinking? You may be surprised to learn that population-based surveys indicate that 68 percent of adult Americans drink at least one alcoholic beverage per month. About 10 percent consume more than two drinks per day, which is a commonly used definition of “heavy drinking”. Two drinks a day! http://www.enotalone.com/article/11240.html

Let’s ask the question again, “Should alcoholics or heavy drinkers be eligible for liver transplants?” Well, I am an alcoholic and had a heart transplant on August 21, 2007. It Is likely that my alcoholism contributed to the disease that destroyed my original heart. I quit drinking in 1982 and have had no relapses but I am an alcoholic and always will be. Should I have been denied a transplant?

Should the obese person suffering from diabetes be denied treatment? Driving too fast is one of the top killers of American men, should the person with a speeding record be denied a transplant because they are likely to kill themselves? What about people who have anorexia, bulimia and other lifestyles that could be considered self destructive? Should prisoners be denied transplants even though they might someday be released? I fear that once we go down this road it is unlikely we would treat or transplant anyone.

I am not trying to justify transplanting livers into practicing alcoholics, but if you accept the American Medical Association (AMA) position that alcoholism is a disease, should the patient be punished because of it? Do we punish cancer patients because they have cancer? There is a school of thought based on limited research that suggests a liver-transplant recipient was statistically more likely to reject a new liver than to destroy it from continued drinking. The fact is that most transplant programs around the world require at least six months of alcohol abstinence before they will consider a transplant. But if two drinks a day is heavy drinking, the average person may be only a few drinks a week away from being a member of that group.

I began by saying that this is a “think piece.” I wrote it because I want to hear from you. Where do we draw the line on who is and who is not eligible for a transplant? The medical community has some solid guidelines, for example cocaine use in most cases will automatically eliminate a person from being considered for a transplant. The public however, as was evidenced in the Mickey Mantle case, may not agree with the medical professionals. What do you think? Being as there is a shortage of organs and thousands die each year because of it, should we more severely limit who is eligible for a transplant?

Categorized in alcohol and drugs

May

Is Childhood Obesity Increasing the Organ Shortage?

One could argue, “Yes,” quite convincingly because the statistics are staggering. (The Author, Bob Aronson, received a heart transplant August 21, 2007 in Jacksonville, Florida)

According to First Lady Michelle Obama’s “Let’s Move” organization that focuses on the issue, “Obesity threatens the healthy future of one third of all American children. Obesity rates have tripled in the past 30 years. We spend $150 billion every year to treat obesity-related conditions, and that number is growing. For the first time in American history, our children’s life expectancy may be shorter than their parents.’

So what has this got to do with an organ shortage? Simply put by allowing our children to get too heavy we are growing people who may someday need an organ transplant. Adding insult to injury is the fact that if they need a transplant they may not be appropriate organ donors themselves. It’s a double edged sword. On one side the demand for organs may be increased and on the other the number of organs available for transplant may decrease. All because of too many unhealthy eating and living choices, too much mac and cheese, too many Snickers bars and Coke, too many video games and not enough exercise.

“So,” you may ask, “What’s childhood obesity got to do with organ damage?” The question is germane because the most effective way to reduce the organ shortage is to reduce the demand. Here are the facts on childhood obesity according to Erica Lesperance, RD, LD a registered dietitian specially trained in pediatric nutrition and the nutritional treatment of inborn errors of metabolism. http://www.thedietchannel.com/Childhood-Obesity-Why-Childhood-Obesity-Is-So-Dangerous.htm

Childhood obesity is on the rise. Worse, it has become the most prevalent pediatric problem in the United States, affecting as many as 15-30% of grade school children and adolescents. Obese children are very likely to become obese adults who will have a significantly higher risk of developing medical problems. Moreover, they are more likely to have their lives cut short by disease.

As the problem reaches epidemic proportions, we can no longer narrowly focus on the medical problems obese children will have as adults. They are suffering from a multitude of obesity-related problems right now. This issue must be addressed. Let’s take a look at how obesity affects the bodies of our young children.

Heart disease is no longer a health problem reserved for older men and women. Children who are overweight with a BMI above the 95th percentile are at-risk for having high “bad” cholesterol, low “good” cholesterol, high triglyceride levels, and high blood pressure. These are all risk factors for heart disease.

Effect of obesity on your lungs

Obesity affects a child’s lung capacity, increasing the risk for asthma. Asthma in turn makes it difficult to be physically active. In addition, overweight children are more likely to have sleep apnea, or episodes of airway blockage that interrupt breathing during sleep. The risks of undiagnosed sleep apnea in children include learning problems, developmental problems, behavior problems and in some cases, failure to grow, heart problems and high blood pressure.

Endocrine system problems caused by obesity

Although we rarely think about them, the glands of the endocrine system and the hormones they release influence almost every cell, organ, and function of our bodies. The endocrine system is instrumental in regulating mood, growth and development, tissue function and metabolism. Obesity affects the glands of the endocrine system, frequently causing menstrual irregularities in young women. Also affected is the pancreas, the organ that produces insulin, causing insulin resistance. Overweight children who have insulin resistance have an increased incidence of developing type 2 diabetes (see Juvenile Diabetes).

A story in USA Today describes the problem in grim detail. http://www.usatoday.com/news/health/weightloss/2008-01-13-childhood-obesity_N.htm

“Childhood obesity could decrease life expectancy by two to five years if something isn’t done about the epidemic, according to provocative research by pediatric endocrinologist David Ludwig, an associate professor of pediatrics at Harvard Medical School.
One in three obese children have excess fat in their liver, which could lead to hepatitis, cirrhosis or liver failure, Ludwig says.
“Obesity affects every organ system in a child’s body, and it can do so in a much more profound way than in adults because children are still growing and developing,” Ludwig says.

After all this the question remains, “What do you do about a child who is becoming too heavy?” It all boils down to two issues; eating right and getting sufficient exercise. The United States Centers for Disease Control (CDC) in Atlanta Georgia offers excellent specific advice on how you can have a positive effect on your children. http://www.cdc.gov/healthyweight/children/ This site also goes into greater detail on how added weight can harm our children.

Categorized in Transplant prevention

Apr

Organ Donors Are Heroes, Are You?

5 Comments

(Bob Aronson, the author of this blog, received a new heart on August 21, 2007)

April is National Donate Life Month in the U.S. It is a time for us to not only become donors but to also encourage others to do the same. The 18 people who die every day while waiting for an organ is a national disgrace.

Brotherly love is a concept repeated often not only in the old and new testament http://www.eliyah.com/brother.html but in every other religion as well. How does the concept apply to your life, do you pay lip service to it, or do you live it?

If you were dying from organ failure would you accept a new organ from a total stranger? If you answered, “Yes,” then it seems logical that a total stranger would accept an organ from you.

The greatest ethical code ever written consists of just ten words, “Do unto others what you would have done unto you.” A variation of these words exists in almost every religion http://www.religioustolerance.org/reciproc.htm . With that in mind, how can anyone possibly choose not to be an organ donor? It is the neighborly thing to do, it is the right thing to do and, it is the ethical thing to do.

Polls show that over 90% of us are in favor of organ donation but only about 35% actually become donors. By not “Getting around to it” you have checked the “No” box on the registration form. In light of “Brotherly love,” and, “The Golden Rule,” is “NO” really your preference? Do you really want to take your organs and tissue to the grave while thousands of people die waiting for them?

Organ donors are among the real heroes of our society. They have made a conscious decision to help others live. Living donors make a tangible sacrifice; they give up a part or parts of their bodies and undergo many inconveniences and some expense to do so. Donor families often make their decision in the presence of a dying loved one.

All too often people who are not registered organ donors die and their families must make the donation decision under great emotional stress. Among these families are parents who agree to share their loved one in order to save lives. Sometime the loved one is a child. I cannot even begin to empathize with the rush of emotion they must feel. Saying, “No” would be the easy thing to say.

I have a Facebook page called, Organ Transplant Patients, Families and Friends a site with thousands of members who share their thoughts, emotions and opinions with the rest of us. Following are some comments (edited for brevity) from people who willingly gave permission to recover life-giving organs.

My daughter (December 16, 1983 to December 10 2006 was an organ an tissue donor she saved lives. I know you are in heaven, you are my angel. Rest in peace. Love an miss you sweetie every day. Please be an organ donor.
We make a great family don’t we. My daughter 29th Oct 1983 -6th Sept 2004, saved 4 lives here in Australia.
She is in heaven…She’s in the same place as my husband, he too was an Organ Donor saving 4 people here in Illinois.
I am also the mother of an organ donor…my son, Patrick saved 7 lives and made a difference in 3 others.
My daughter was also an organ donor. By giving, our daughter made a difference in someone’s life.
I… donated a kidney to my friend 6 weeks ago and it was the absolute most life-changing experience of my life. It was amazing! The Lord is the One who set the whole plan in motion and ordered every step throughout the evaluation process and surgery. God bless you.

And — there are grateful organ recipients, too.

Thank you for your wonderful gift of life. If it wasn’t for generous people like you…I wouldn’t be here today:) I am a liver transplant recipient and waiting for a kidney. Love & God Bless
I am very, very sorry for the loss of your daughter. It is so scary for me to even think about. THANKS SO MUCH for making the decision to donate all of her organs. She’s definitely an angel living on in many. My aunt is waiting on a lung transplant…which, of course, is bittersweet. Bless you and your family!
My daughter was killed in a car accident 17 years ago at the age of 14. She was an organ and tissue donor, too. We can help others to understand the importance of making the decision to become an organ and tissue donor.
You are my hero for donating her organs. My husband and I are waiting for our hero. My husband has been… on the liver transplant list for 3 years now. Words will never be enough for what you have done. May God bless you and your family. Love and prayers.
May god continue to bless your family. My brother received the gift of a kidney many years ago. We never knew the circumstances as to how we received it but we give many thanks to the family out there who made the conscious decision to donate. Thank You.

Categorized in Organ Donation
Tags: donation, Facebook, Health, Illinois, Liver transplantation, Organ, organ donation, Organ transplantation

Mar

End the Shortage. Clone Organs?

8 Comments

(Bob Aronson, the author of this blog, received a new heart on August 21, 2007)

People who need an organ transplant face two hurdles; one is the limited availability of organs and the second is the possibility that if you do get an organ your body might reject it.

First let us discuss the donor issue. Since the national Organ Transplant Act of 1984 The United States has depended on the altruistic motive for obtaining organs. That means we must depend on people becoming organ donors voluntarily through the goodness of their hearts. Unfortunately despite increasing efforts the gap between those who need organs and the number of organs available is steadily increasing. Only about 35 percent of Americans are donors and with over 100,000 people on the transplant list thousands are dying each year because of the lack of donor organs. Many more thousands probably die because, for whatever reason, they never got on the list. We’ve tried the altruistic method now for twenty-six years and must admit that it simply isn’t working.

The second issue is rejection. Without anti-rejection drugs most of us who have been transplanted would likely reject our new organs and die within a short time of undergoing the surgery unless the new organ came from an identical twin. Short of that, though, there is always a risk. Some people die even with anti-rejection drugs like Cyclosporine. So what’s the solution? There is one potential remedy that seems to make the most sense despite its potential for extreme controversy and that is cloning.

I’m not talking about cloning human beings for their organs but rather cloning specific organs. It is called therapeutic cloning as opposed to reproductive cloning. Engaging in therapeutic cloning would solve the two problems I outlined. It would greatly diminish or even end the organ shortage and, because we would be using our own cells for the cloning process, our bodies would not reject the organs and there would be no need for anti-rejection drugs which, in turn, would reduce the cost to the patient, insurance companies and the government.

While cloning human organs is theoretically possible success rates have been very low and very expensive. But, according to the Human Genome Project, http://www.ornl.gov/sci/techresources/Human_Genome/elsi/cloning.shtml#organsQ “Scientists hope that one day therapeutic cloning can be used to generate tissues and organs for transplants. To do this, DNA would be extracted from the person in need of a transplant and inserted into an enucleated egg. After the egg containing the patient’s DNA starts to divide, embryonic stem cells that can be transformed into any type of tissue would be harvested. The stem cells would be used to generate an organ or tissue that is a genetic match to the recipient. In theory, the cloned organ could then be transplanted into the patient without the risk of tissue rejection. If organs could be generated from cloned human embryos, the need for organ donation could be significantly reduced.”

Experts say that the benefits of organ cloning are almost too numerous to list but I will name just a few.

Skin for burn victims
Vital organs like hearts, lungs, livers and kidneys could be produced.
Bone marrow for those who suffer with leukemia.
Genetic therapy for Cystic Fibrosis.
We may learn how to turn cells on and off and therefore develop a cure for cancer.
We may be able to grow new nerves for spinal cord injuries and perhaps put the wheelchair industry out of business.

Yes, much of this is wistful thinking but researchers say it is possible, that more effectively treating or even curing some diseases may not be that far away. What do you think? Is it morally or ethically acceptable to clone organs? Whatever your position we would all like to hear the rationale for your decision.

Categorized in Ending the Organ Shortage -- Solutions
Tags: Cloning, Cystic Fibrosis, dna, Facebook, Organ, organ donation, Organ transplantation, United States

Mar

Are You an Alcoholic? Here’s the Test

Alcohol, Drugs and Tobacco can have deadly effects on your organs and constitute one of the leading contributors to the need for organ transplantation. I have long contended that while organ donation is important we just aren’t making enough headway under the currents system. Too many people are dying because of the organ shortage. One way of reducing the organ shortage is to diminish the demand. Healthier living could help achieve that goal. I am a recovering alcoholic (since 1982) and know first hand how Alcohol probably caused me to get a heart transplant and cigarettes left me with serious Chronic Obstructive Lung Disease (COPD). Since I began Blogging in November of 2007, I have published six posts on alcohol’s deadly effects on internal organs. They are Alcohol and Drugs – Cunning, Mysterious, Deadly; Alcohol May Have Ruined My Heart, How Much Do You Drink; Think Outside the Bottle; Should Alcoholics Get Liver Transplants and How Alcohol Can Kill Your Liver and You.

These posts have generated numerous responses and questions. The most common question, though, is, “How can I tell if I am an alcoholic? A simple answer is, “If Alcohol is causing problems you have an alcohol problem!” The “Gold Standard” of the treatment industry is the Michigan Alcoholism Screening Test (MAST). The National Council on Alcoholism and Drug Dependence at http://www.ncadd-sfv.org/downloads/mast_test.pdf is a great resource if you want more information. I have copied the test and printed it below. You can take it in the privacy of your home and grade yourself according to the instructions which follow the test.

In order for the results to be accurate your answers must be absolutely truthful, you do no good by lying to yourself so BE HONEST! I hope you find this information helpful.

If you take the test and determine that you need help a good starting point is the Substance Abuse and Mental Health Services Administration of the U.S. Government (SAMHSA) http://ncadi.samhsa.gov/links/

MICHIGAN ALCOHOLISM SCREENING TEST (MAST)

Please check one response for each item.

1. Do you feel you are a normal drinker? (“normal” – drink as much or less than most other

Yes

2. Have you ever awakened the morning after some drinking the night before and found that you could not remember a part of the evening?

Yes

3. Does any near relative or close friend ever worry or complain about your drinking?

Yes

4. Can you stop drinking without difficulty after one or two drinks?

Yes

5. Do you ever feel guilty about your drinking?

Yes

6. Have you ever attended a meeting of Alcoholics Anonymous (AA)?

Yes

7. Have you ever gotten into physical fights when drinking?

Yes

8. Has drinking ever created problems between you and a near relative or close friend?

Yes

9. Has any family member or close friend gone to anyone for help about your drinking?

Yes

10. Have you ever lost friends because of your drinking?

Yes

11. Have you ever gotten into trouble at work because of drinking?

Yes

12. Have you ever lost a job because of drinking?

Yes

13. Have you ever neglected your obligations, your family, or your work for two or more days in a row because you were drinking?

Yes

14. Do you drink before noon fairly often?

Yes

15. Have you ever been told you have liver trouble such as cirrhosis?

Yes

16. After heavy drinking have you ever had delirium tremens (D.T.’s), severe shaking, visual or auditory (hearing) hallucinations?

Yes

17. Have you ever gone to anyone for help about your drinking?

Yes

18. Have you ever been hospitalized because of drinking?

Yes

19. Has your drinking ever resulted in your being hospitalized in a psychiatric ward?

Yes

20. Have you ever gone to any doctor, social worker, clergyman or mental health clinic for help with any emotional problem in which drinking was part of the problem?

Yes

21. Have you been arrested more than once for driving while under the influence of alcohol?

Yes

22. Have you ever been arrested, even for a few hours, because of other behavior while drinking?

Yes

About Scoring this Alcoholism Test Questionnaire

This quiz is scored by allocating 1 point to each ‘yes’ answer — except for questions 1 and 4, where 1 point is allocated for each ‘no’ answer — and totaling the responses.

So in other words, please score one point if you answered the following:

1) No

2) Yes

3) Yes

4) No

5-22) Yes

(Note that this is the current revised version of the MAST; the original MAST included 25 questions and used a more complex scoring method.)

Your Alcoholism Test Score

0-2 = No Apparent Problem

3-5 = Early or Middle Problem Drinker

6+ = Problem Drinker

Categorized in Alcohol
Tags: addiction, Alcohol, Alcoholic beverage, Alcoholics Anonymous, Alcoholism, Health, Substance abuse, Substance Abuse and Mental Health Services Administration

Feb

In Honor of Organ Donors and their Families

We read and hear a great deal about the shortage of organs, incredible stories about “nick-of-time” transplants, multiple transplants and innovations in transplantation but we don’t hear much about the donors who make this all possible. Being an organ donor is one of the most unselfish, compassionate and noble gestures one can make. It is particularly noble because in most cases the donor will not be around to hear the praise and thanks. Paying tribute to donors and their families is one of the most important things we can do. These mostly anonymous people deserve to be in our thoughts and prayers every minute of every day.

As you know I am a heart transplant recipient, I only know that my donor was a 30 year old male from South Carolina, nothing more. I have written to the donor family expressing my gratitude but, like many donor families, they have chosen to remain anonymous. There are many more, however, who choose to be public about their experience and how we support and honor them is the subject of this blog.

Prior to my retirement I was honored to have as a client, LifeSource, an organ procurement organization (OPO) that serves Minnesota, the Dakotas and part of Wisconsin. They were not only a valued client but also became dear, dear friends. Rebecca (Becky) Ousley is one of the many dedicated people who help to further the LifeSource mission. Like most OPOs LifeSource does a wonderful job of promoting organ donation and coordinating transplants. But they are so much more than that, they offer heart felt support to the living, too, especially donor families. Below is a reprint of their latest blog. Please read and comment either to this blog or directly to LifeSource at http://www.life-source.org/

From “The Source” by Becky Ousley, LifeSource

One of the things I find remarkable about the work we do at LifeSource is the extent to which we are committed to supporting donor families, both at the time of donation and for years afterward. Donor families are the cornerstone of the work that we do – without them there would be no transplants. It is an incredibly generous gift.

I’m always so excited to tell people about this, as many people don’t realize that donor families receive this kind of support in the months and years following donation. At LifeSource donor families are part of our aftercare program for as long as they wish; we have some families that have been coming to our events for nearly 20 years! In addition to receiving support and remembering their loved ones, these long time donor families are also able to provide hope and perspective to our families that are more newly bereaved. That too, is a wonderful gift.

Part of our aftercare program involves facilitating letters between transplant recipients and donor family members. Either party can write to the other; often, recipients want a chance to say thank you for their gift of life or donor family members may want to share memories about their loved ones. Donor families and recipients can request to have direct contact with one another and, sometimes, they even meet. These are often very rewarding relationships.

This was the case today, when I was honored to attend a donor family and recipient meeting with my colleague Jill, whose job it is to support these families. She connected this pair after some persistent detective work, as the donation and transplant took place more than 40 years ago in 1966! It was an incredible meeting and I think we were all touched when Steve, the kidney recipient, immediately hugged the donor’s sister and told her he had been waiting for 43 years to give her that hug.

KARE-11 was there to document this wonderful meeting and I encourage you to watch the story by clicking here.

Categorized in Donors and their Families
Tags: Health, Minnesota, organ donation, Organ transplantation, South Carolina, Support Groups, transplantation, Wisconsin

Jan

Organ Donation Hypocrites

Too many people talk the talk but don’t walk the walk. What do I mean? You’ve heard me say that over 90 percent of Americans approve of organ donation but barely 35 percent bother to become donors. This blog is a challenge.

Hey liberals who make so much of helping those in need, who support large governmental humanitarian relief programs and who urge everyone to perform some kind of community service, why don’t you practice what you preach and become organ donors. If you don’t become organ donors and urge — no, help everyone you know to do the same, you are nothing but a bunch of hypocrites.

And you compassionate conservatives who so believe in encouraging private citizens to get more involved and to depend on government less, why aren’t you promoting organ donation and becoming donors yourselves? You seem to encourage faith based and community based activism, but you, like the liberals, are sitting on your hands while thousands die due to a lack of transplantable organs.

And then there are the religious groups who preach the sanctity of life and that you should love your neighbor as you love yourself, why aren’t you doing more to promote organ donation? You’ve got to do more than pray. You’ve got to take some action. Maybe God is answering your prayers by telling you to do something instead of depending on him to solve all the problems.

All of the above groups fall into a very large group of hypocrites. If you don’t like this blog, don’t complain to me. Go forth and save lives by encouraging organ donation and when someone tells you, “You are right I’m going to become a donor,” don’t stand by and accept that. Offer to help them, drive them to the driver’s license office right away or get on line with them to register with Donate Life America.

You should all be as disgusted as I am that only 35 percent of Americans are organ donors. If you believe in organ donation, why the hell aren’t you doing something about it?

Categorized in Organ Donation

Jan

The Importance of Organ Donation, A Reminder

http://donatelife.wordpress.com/

For those of you who don’t know, I received a heart transplant at the Mayo Clinic in Jacksonville, Florida almost two and a half years ago. My new heart came from a 35 year old stranger. Without it I would have died within a few months.

As of this writing there are 105,000 people on the national organ waiting list. 82,000 of them are waiting for kidneys (http://optn.transplant.hrsa.gov/). A new name is added to the organ waiting list every 11 minutes. A million more people suffer from blindness, medical conditions or devastating injuries that can be successfully treated with donated corneas or tissue.

You would think that with 300 plus million people in this country there would be more than enough organs and tissue to save or enhance all of those lives. The fact is that while 90 percent of Americans believe in organ donation barely 35 percent take the time to register. That means that each year more and more people are dying because of a lack of organs, nearly eighteen people die each day while waiting. These deaths are totally unnecessary. One organ donor can save or affect the lives of up to sixty people — sixty people! North Dakota and Minnesota serve as marvelous examples of people getting the message. The donation percentage in Minnesota is 51% and in North Dakota it is 65%.

Good intentions are not enough. If you want to pay more than lip service to the issue, go to http://www.donatelife.net/ and you will immediately discover how you can register. Donate Life America (DLA) is a part of the United Network for Organ Sharing (UNOS), which keeps the waiting lists and coordinates donation and transplantation throughout the United States. If you are not a computer person either write to Donate Life America 700 N. Fourth Street Richmond, Virginia 23219 or you can call them at phone: 804-782-4920 and they will be happy to help you. Whether you are a registered donor or not, talk to everyone you know about organ and tissue donation, there is no act that is nobler.

There are a multitude of questions about organ donation but here are the answers to just a few:

What can be donated? Organs: Heart, lungs, kidneys, pancreas, liver and intestines. Tissue: Corneas, skin, veins, tendons, bone, heart valves and connective tissue.
Should age or health affect my decision to be a donor? No. Almost everyone can save lives through donation!
Will my family have to pay for the cost of my organ and/or tissue donation? There is no cost to the donor family for donation. All expenses related to organ and tissue donation are paid by LifeSource and passed on to the transplant recipients and their health insurers.
Does my religion support organ and tissue donation? All major religions support organ and tissue donation as one of the highest forms of loving, giving and caring.
If I am a registered donor and I am admitted to a hospital, will they let me die so they can recover my organs? Absolutely not. Organ and tissue donation is an option only after all life-saving measures have failed.
Can the rich and famous jump the list based on their celebrity status? No. Organs are fairly allocated based on medical criteria, genetic matching, and length of time on the waiting list.

There are many more questions and the answers can be found by calling LifeSource or visiting their website.

I am alive because of the generosity of a total stranger but there are so many just like me who will probably die waiting. If every person who became a donor would convince just one other person to do the same there would be no shortage and we could stop the dying. Please act today; it’s a matter of life and death.

Categorized in Organ Donation

Nov

Too Old To Get H1N1 Vaccine

17 Comments

If you are over age 64 and you want the H1N1 flu vaccine (swine flu) forget it! Even if you meet the criteria set forth by the Centers for Disease Control (CDC) you will not be allowed to get the vaccine. I know, today I was refused a shot. This development has great significance for everyone over 64 and especially transplant patients with compromised immune systems.

According to the CDC website (http://www.cdc.gov/h1n1flu/highrisk.htm) these are the criteria for getting an H1N1 shot:

1. People at High Risk for Developing Flu-Related Complications

Children younger than 5, but especially children younger than 2 years old
Adults 65 years of age and older
Pregnant women

2. People who have medical conditions including:

Asthma
Neurological and neurodevelopmental conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].
Chronic lung disease (such as chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)
Blood disorders (such as sickle cell disease)
Endocrine disorders (such as diabetes mellitus)
Kidney disorders
Liver disorders
Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids)

I fit into three of the criteria. I have asthma, COPD (chronic obstructive pulmonary disease) I am over 65 and because of my heart transplant two years ago I have a suppressed immune system. My transplant cardiologists strongly recommend that people like me should get the H1N1 shot yet when I showed up at the clinic today I was told by the nurse that I couldn’t have the shot because I was over 64. I double and triple checked to see if that is true and it is. The government doesn’t care if your health is at great risk from H1N1 if you are over 64. What I infer from this regulation is that CDC has determined that people my age don’t have much time left anyway so lets not waste vaccine on them even if they meet other criteria.

I would immediately agree that children and pregnant women should get the vaccine ahead of all others. That only seems fair and fairness is all I ask. Never before in my life have I been told I was too old for something. This smacks of governmental age discrimination.

If you agree that this situation is unfair and discriminatory let your congressional delegation know. Call them, email them or stop them on the street. CDC should not be allowed to say one thing in public and then introduce restrictions in private.

Categorized in journaling

Nov

If You’re Not Disabled, Don’t Park There!

13 Comments

I’ve taken time off from blogging for the last few months because I was taking care of myself with my own self styled mental/emotional therapy. For fifty years my parents ran a “Mom and Pop” side street grocery store in my home town of Chisholm, Minnesota. To honor and remember them I have built from memory and a pitiful few photographs, a scale model replica of the store and the attached house. The project took the better part of two years and was completed yesterday Sunday November 1, 2009. When I get some pictures taken I will post them.

As to blogging, there is something that has bothered me for quite some time and that is the fact that there seems to be a great number of people using disabled parking illegally. As you know I had a heart transplant a little over two years ago. My new heart is working extremely well and if anything I have more energy than ever before. Unfortunately I have COPD (chronic oppressive pulmonary disease) which makes it extremely difficult for me to breathe. Almost any exertion leaves me out of breath so I have a disabled parking permit and use the spaces often. They are a Godsend when you can’t walk very far.

What disturbs me is the number of people who think the rules don’t apply to them and when it comes to disabled parking they fall into two categories, 1) those without permits that ignore the signs and 2) those that have permits that belong to someone else.

The first group is easy to deal with. If you see a vehicle in a disabled space that has neither special license plates nor a permit hanging from the rear view mirror, notify the authorities. In most cases there is at least a $250 fine for this deliberate violation of the law and of the rights of the disabled.

The second group is more difficult to deal with. I fully recognized that not every disabled person is in a wheelchair, I’m not so in many cases when I see people hang the tag on the mirror and walk to the store I ignore it. People deserve the benefit of the doubt. But, when I see people park, display the permit and then sprint across the lot into a store I get angry. Too many able bodied people use permits issued to friends or family members. I know of some people who are using permits that were owned by deceased relatives. How disrespectful can you be?

Many people who are awaiting transplants but are ambulatory need those spaces. They are not reserved for lazy people but rather for those who genuinely need to be close because they can’t walk very far. Many other people who are not transplant candidates also have very serious disabilities that require them to park as near to their destination as possible. Without disabled parking many people would be forced to either stay at home or face the danger of having to walk farther than they are physically capable of doing.

I was at an art show with my wife recently and I parked in one of the few disabled spaces that were available. Two burly guys in a pickup truck pulled in next to me in the space reserved for Vans for the disabled and began to sprint away. I rolled down the window and told them it was not a parking space and that they should move. They got quite belligerent and after several profanities and hand gestures they grudgingly moved — a half block away. I’ll bet the walk absolutely exhausted them.

You should do the same. Challenge people who park illegally, notify the authorities. The space they occupy may be the one you or a loved one will need someday.

Categorized in Bobservations

Apr

Obesity, Diabetes and Organ Failure

12 Comments

Each year thousands of people die because of a lack of organs for transplantation. Current efforts to increase the supply of organs are woefully inadequate. The altruistic method (becoming a donor out of the goodness of ones heart) simply doesn’t work well enough. Fewer than fifty percent of Americans are organ donors. It does not look like the altruistic approach is going to change any time soon so we must explore every possibility.

One way of increasing the supply of organs for transplant is to reduce the demand and that can be done in part by changing lifestyles. Some of the causes of organ failure are preventable. This blog will focus on two contributors to the rising need for organs; obesity and diabetes. Both could be far better controlled than they are currently simply by eating properly and exercising regularly.

Let’s talk obesity, the second leading cause of unnecessary death in America. According to the American Obesity Association (AOA). http://obesity1.tempdomainname.com/subs/fastfacts/obesity_what2.shtml Approximately 127 million adults in the U.S. are overweight, 60 million obese, and 9 million severely obese Obesity is a disease that affects nearly one-third of the adult American population (approximately 60 million). The number of overweight and obese Americans has continued to increase since 1960, a trend that is not slowing down. Today, 64.5 percent of adult Americans (about 127 million) are categorized as being overweight or obese. Each year, obesity causes at least 300,000 excess deaths in the U.S., and healthcare costs of American adults with obesity amount to approximately $100 billion.

Fox news quoted a Web MD report http://www.foxnews.com/story/0,2933,215604,00.html that says nine out of ten obese people develop type 2 diabetes and while obesity does not cause diabetes, research shows the two are closely related.

Net Wellness (http://www.netwellness.org/healthtopics/diabetes/faq3.cfm) defines diabetes as the inability of glucose to enter the cells. The result is that the bloodstream has a high amount of glucose and cells are not able to produce energy for the body. When diabetes is not carefully managed by keeping the amount of sugar in the blood at the right level, the resulting high glucose amounts wreak havoc on nearly every organ system in the body. The report goes on to say that as many as 65% of people diagnosed with diabetes will eventually die of a heart attack or a stroke and nearly 1 in 3 diabetics will experience kidney failure. For more information on diabetes visit the National Diabetes Education Program Website at: http://www.diabetes.niddk.nih.gov/dm/pubs/type1and2/what.htm

The American Diabetes Association (ADA) offers comprehensive information on diabetes prevention and the value of proper nutrition and exercise along with symptoms of disease http://www.diabetes.org/diabetes-prevention/how-to-prevent-diabetes.jsp

While I will continue to work to develop other methods of increasing the supply of transplantable organs, all of us should take every measure to prevent diseases that can affect our organs. As in most cases prevention is the best cure for organ failure.

Categorized in Transplant prevention

Apr

Minnesotan’s Creative Efforts to Increase Organ Donation

4 Comments

LifeSource is an Organ Procurement Organization (OPO) in St. Paul, Minnesota. I know the people there quite well and was so impressed by their latest posting in “The Source” I decided to reprint it so others could benefit from it as well. I am often asked, “What can I do to promote organ donation besides becoming a donor myself?” Well, there are many answers but this blog offers a couple of excellent examples.

The Source

by Jeff Richert

We have many exceptional, creative and energetic volunteers. I want to focus on just two of them and what they are doing to celebrate National Donate Life Month in April.

Judy is a long time LifeSource volunteer from Fergus Falls, MN. She lost her daughter, Jenny, in May of 1993. Judy’s activities for April included a radio interview about donation and drunk driving that she has done for many years. She also coordinates a unique program with her beautician.

In addition to providing space for a display and information table, her friend who owns the “ExSalonce” has a special promotion during April. She gives a 20% discount to customers who either show that they have “Donor” on their license or to those who sign up as donors for the first time! What a unique and fun way to communicate our message during April!

Suzanne Ruff is a LifeSource volunteer who knows too well the ravages of Polycystic Kidney Disease (PKD). For several generations, her family has suffered from this often fatal genetic disorder. For National Donate Life Month and for National Donor Sabbath for at least two years, Suzanne has communicated with the Archbishop of St Paul and Minneapolis to convey information to him about donation and transplantation.

Earlier this month, Suzanne received a response from the Archbishop’s office saying that he is both supportive of our cause and that he will try, ” … to the best of my ability, to mention it in my Catholic Spirit column.” Thank you Suzanne for your perseverance and for helping us to communicate to our friends in high places.

Judy and Suzanne’s activities for April are not big and flashy acts. They don’t involve billboards or spot lights. But ultimately their work will contribute to the many activities of our volunteers that help ensure that thousands of people hear about the life saving miracles of donation and transplantation!

I hope reprinting this blog inspires people to do something special to promote organ donation. If each of us could convince just one person to become an organ donor we could end the shortage and be able to offer transplants to everyone on the list.

Categorized in Innovative methods for increasing organ donation

Mar

Liver Transplant Scam Exposed