By Bob Aronson
The population of the United States is about 320 million. Of that number 120,000 are on the national organ transplant waiting list. 22 of them die every day because there are not enough organs to go around. Numbers, just numbers. We hear them so often they are meaningless. But the numbers aren’t meaningless to the Husband who just lost his wife because there was no kidney for her, or the child who lost her dad because there was no liver. These numbers represent human lives, You or someone you love could be one of them some day and I know that from personal experience.
I was a broadcast journalist in 1967 when Dr. Christian Barnard performed the first heart transplant in South Africa. I remember telling one of my reporter colleagues that it was a really big deal because it would someday save thousands of lives. It never occurred to me that 40 years later I’d be one of those who benefited from Dr. Barnard’s pioneering efforts. I had a heart transplant In August of 2007
So don’t ignore those numbers because all the numbers have faces and names and feelings and they are scared and alone and in need. Right now 22 families are grieving, many children are being told that mommy or daddy won’t be coming home again. A parent is being told their 12 year old won’t survive the night. We are talking real lives here not just numbers. There are people out there, real honest to goodness people who just lost someone because there was no organ and they are so stricken with grief they cannot function. There are nurses and doctors who have to tell families that because there was no organ their loved one died. That means over 8,000 people die every year waiting for an organ transplant that never happens and every one of them is loved by someone. Every one of them will be missed. Many of them may have had great futures, we’ll never know because a whole lot of Americans just didn’t get around to becoming organ donors.
How can that be? How is it that a nation of 320 million people can allow 8,000 of their friends and neighbors to die when the solution is so simple and I mean really simple. You don’t even have to leave home to do it. You don’t have to get out of your damned chair. Just open the laptop, or turn on the desktop or say, “Hi Google,” to your tablet and you will be registering in mere moments. Keep reading and I’ll explain exactly how to register and save lives and you can get to feel really good about yourself.
First, chances are pretty good that you want to become an organ donor. You just haven’t gotten around to it yet. But, if you haven’t yet made up your mind think about this. Why take perfectly good organs to the grave with you when they could save some lives? Up to 60 lives can be saved and/or enhanced by one organ donor who is in good health.
Many organs can be used to save a life. In fact, one person has the potential has save up to eight people. Tissue donation can help more than 50 people and eye donation can restore the sight of two individuals. Here is a list of organs that can be donated: Lungs, Heart, Liver, Kidneys, Pancreas, Small intestines and skin (yes, skin is an organ).
While not organs, there are many other body parts than can be transplanted as well including Corneas, Heart Valves, Bone, Saphenous veins, Cartilage and ligaments to name a few. http://www.organdonor.gov/awareness/organizations/local-opo.html
So what’s the Problem? Well, there’s more than one. About two million people die every year but many of them are not organ donors. Also a large number of people who die have damaged and therefore non transplantable organs.
The biggest problem we face, though, is procrastination. In case you don’t know what that is it is when you see that mess in your garage and say, I’ll get to that tomorrow, but tomorrow never comes. Polls and survey’s tell us that in excess of 90% of all Americans think organ donation is a great idea, but only about 40 percent actually become donors. And in some cases, not many, but some families will object to recovering the organs from a loved one for transplantation.
So let’s ask the question again, What’s the problem? Well, sorry to say it Americans, but you might be a big part of the problem. If you are not an organ donor, why not? What good are your organs going to do if cremated or buried with your body? It’s time you not only thought about organ donation, but did something about it. If you are not a donor here are some ways you can become one.
The easiest way. Go to www.donatelife.net. You can do this one from right where you are sitting. It only takes a few minutes, then tell your family, your physician and your spiritual or religious advisor…and you are done. You can formalize the process by adding “Organ donor” to your driver’s license, but again, be sure to tell your family what your wishes are so there’s no confusion when and if the time comes.
If you are confused about the process call your local OPO (Organ Procurement Organization) There are 58 of them in the United States. For help in finding yours go to http://www.organdonor.gov/awareness/organizations/local-opo.html
Recently I had a non-organ donor tell me that while it wasn’t on his license he was still a donor. He said he had made sure that his attorney included his wishes in his will. Well, I’m not an attorney, but aren’t wills usually read after the funeral? By then it is far too late to recover organs for transplant. If you do nothing else…nothing at all…tell the loved ones in your family that you want to be an organ donor so if the time comes and they are asked they’ll be able to say, “Yes,” we know that’s what he wanted.
It is my opinion that one of the reasons people procrastinate is that they don’t see any urgency in signing up. They think, “I’m in good health, I plan on living a long time and they can’t take my organs until I am dead, so what’s the rush? It’s a good question. I’m sure the 30 year old man whose heart beats in my chest might have had the same thought at one time, but he signed up anyway.
The point is none of us know when we are going to die. I pray that everyone who reads this leads a very long life, but that’s not reality. Some will die well before “Their Time.”
So there is an urgency, both on your part and on the part of the recipient. Can you imagine what it feels like to be on a transplant list day after day, month after month, year after year, waiting for an organ, knowing you are dying and there’s little modern medicine can do short of a transplant. Think about that…seriously think about that for a minute.
Peter Curran and his wife Ashley know what that’s like. They live in Boston. Peter has been on the list for eight (8) years. 8 years — that’s mind boggling torture for both Ashley and Peter. They are friends of mine and oh so brave and upbeat, but as time goes on Peter’s liver isnt’ getting healthier and he is spending more and more time in a hospital bed because of complications. Peter Curran needs your help. Ashley loves her husband with every fiber in her body, she is an excellent caregiver, but somehow we — all of us, the medical system, the government — everybody is failing them. Why is there no liver for Peter? It’s because not enough people are donors. If you are procrastinating or know of someone who is, remind yourself or your friends of Peter and Ashley. He can’t work, he has very little energy or stamina. He’d love to go to work again, he’d like nothing better, but right now all he and Ashley want is for someone to donate a liver that matches Peter’s needs. Seriously, is that too much to ask, I think not.
Now some people don’t donate because they believe in the many myths surrounding organ donation. So let’s take that on, too, while we are at it. Here’s’ what the American Transplant Foundation has to say about the subject:
Myth: Age, illness or physical defects could prevent me from being a donor
Fact: Each person’s medical condition is evaluated at the time of their death to determine what organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.
Myth: If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.
Fact: The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared. ypically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.
Myth: If you are rich or a celebrity, you can move up the waiting list more quickly.
Fact: Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process. Click here for more details about organ allocation by organ type.
Myth: After donating an organ or tissue, a closed casket funeral is the only option.
Fact: Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.
Myth: My religion doesn’t support organ and tissue donation.
Fact: Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.
Myth: My family will be charged for donating my organs.
Fact: Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.
If you desire more information about the facts and myths of organ donation please visit. http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/
Please remember when you hear 22 people die every day waiting for an organ that the numbers have faces and names and the smile and care and hurt just like you do. Remember Peter and Ashley and the thousands just like them. Register as an organ donor and feel like a live saver. That’s a pretty darn good benefit.
Bob Aronson is the founder of Facebook’s Organ Transplant Initiative support group and the founder and author of the nearly 300 blogs on Bob’s Newheart where you’ll find information on a wide variety of subjects related to donation and transplantation. http://www.bobsnewheart.wordpress.com
Writing a personal letter of gratitude for an organ donation is the ultimate humbling experience. How do you begin to thank someone for saving your life? Words don’t seem adequate when you would like to hug someone and hold their hand while you say think you. It would seem almost impossible to express the gratitude you and your family feel.
Because of circumstances, though, words are your only choice therefore they should be carefully considered and come from your heart. Your letter should show an appropriate amount of thoughtfulness and sincerity, it should not gush or be overly emotional. Balance is the key.
A handwritten letter is always best but, if your handwriting is like mine, a typed letter will be much easier for the recipient to read.
When you write, and I say when because “if” is usually not even a consideration , you should not only write and edit it yourself but also have someone you trust look it over. Then read it out loud to the person to determine how he or she feels upon hearing the words. This letter can be like no other you have ever written, because you will be talking to a total stranger; a family who lost a loved one and whose organ or tissue is now helping to keep you alive. Remember no matter when you write that the family may still be grieving.
Your letter cannot be sent directly from you to your donor family. It must go through your transplant center. Talk to your coordinator or social worker about where to send you letter so it can be forwarded to your donor family.
Why A Thank You Letter is Important
Saying thank you is as much about the writer as it is about the reader. It is a social grace that benefits both parties equally. Organ donation is a powerful reminder of just how wonderful gift giving can be…especially when the gift is one of life.
The death of a family member is a horrible experience, regardless of the nature or time of death. When organ donation is a consideration the experience can become even more traumatic because while in the depths of pain and grief families must also make the decision to help others who are critically ill by donating their loved ones organs and/or tissues. Knowing first-hand how the recipient’s life has changed and what they have been able to do since their transplant can help give meaning to the senselessness surrounding their loss. Sharing such the emotions of a life saving experience can the organ recipients recovery as well as helping the donor family through their grieving process.
Key Components of a “Thank you donor family” Letter
- Write your thank you letter by hand if possible because it indicates thoughtfulness and caring, and gives it the attention it deserves. If you type the letter explain why you are doing so.
- Always keep in mind who your audience is. It is the donor family, not yourself. Don’t lose sight of that simple fact.
- Take the time to think and draft your letter before you write: It should be error free and look professional so the reader knows you gave it considerable time and consideration.
- Do not use canned and expected language. Avoid clichés and “Sympathy Card” pseudo poetry but you can include a brief quote from a famous person.
- Sincerity is key: avoid exaggerations and focus on highlighting a few specifics about the gift so as to remain credible with your message
- Compose a well thought out closure: think about a special close that truly encapsulates the spirit of your letter
What to say and what not to say
In this first letter it is important that all parties remain anonymous. You should not include any information that might lead to your identity. That means you should not include last names, streets or numbers, email addresses names of hospitals and names of physicians and staff. If there is further correspondence or contact and both parties agree to exchanging identities then and only then is it appropriate to do so.
The safest assumption you can make is that the donor family is still grieving, regardless how much time has passed. Communicating with sensitivity is of utmost importance.
Here are some suggestions of what to include in your letter but remember, it must come from the heart and the words must be yours:
- Open your letter with “Dear Donor Family”
- Thank the donor family for their gift
- Speak about your transplant experience – consider including details surrounding your wait, the surgery and recovery
- Elaborate how the transplant has changed your life
- Use first names only and talk about yourself and your family
- Mention your occupation and any activities which you once again can enjoy
- Include photos (void of identifying information)
Sample Organ Donation Thank You Letter
Dear Donor Family:
On August 21, 2007 I received a heart from your loved one. You, he and it saved my life. I promise I will take care of this gift far better than I took care of my own natural organ. Each day before I get up I take a moment to feel this marvelous gift steadily thumping in my chest. It is alive and healthy and has created in me a new appreciation for life.
More than that, though, I am always aware that this heart is not mine. It belongs to the kind of person all of us should aspire to be. Moreover, he came from the kind of people all of us should aspire to be. Maybe it is my imagination but since receiving my new heart, I feel a serenity I have never before felt. I feel a concern for others far greater than I thought possible. I feel a responsibility to all organ donors and their families to do what I can to honor their loved ones by committing the rest of my life to promoting organ donation.
I was very sick prior to my transplant. I could no longer get around very well because my heart just could not pump efficiently enough. I knew I was dying and as a 68 year-old man with COPD and B positive blood, I did not think a transplant was in the cards. But it was. As a result, I believe that God saved me for a reason and that reason was to promote organ donation to honor you and your loved one.
I appreciate the simple things now, much more than before. I look forward every morning to seeing my loving wife and caregiver, Robin. Staying in contact with family and friends has become more important than ever before. I enjoy sitting in our sunroom watching the sunrise and sunset. Each day gives me a new thrill because each day is a gift from you and from God.
I don’t know if we will ever meet and although I am likely to be at a loss for words, I would like to thank you personally. You gave me life, you gave me peace and you gave me a profound sense of gratitude and understanding. I am a new person and I hope that in your grief it helps to know that a part of your loved one is alive and that with his help I am trying to live my life in a way that would make you proud.
Bob, Robin and family
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.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. You can register to be a donor at http://www.donatelife.net
Heart Stop Beating is a three-minute documentary film about the no-pulse, continuous-flow artificial heart, which Dan Baum writes about in our Future of Medicine issue. It tells the story of Billy Cohn & Bud Frazier, two visionary doctors from the Texas Heart Institute, who in March of 2011 successfully replaced a dying man’s heart with the device they developed, proving that life was possible without a pulse or a heart beat.
Meeko the calf stood nuzzling a pile of hay. He didn’t seem to have much appetite, and he looked a little bored. Every now and then, he glanced up, as though wondering why so many people with clipboards were standing around watching him.
Fourteen hours earlier, I’d watched doctors lift Meeko’s heart from his body and place it, still beating, in a plastic dish. He looked no worse for the experience, whisking away a fly with his tail as he nibbled, demonstrably alive—though above his head, a monitor showed a flatlined pulse. I held a stethoscope to his warm, fragrant flank and heard, instead of the deep lub-dub of a heartbeat, what sounded like a dentist’s drill or the underwater whine of an outboard motor. Something was keeping Meeko alive, but it was nothing like a heart.
The thing about growing working organs in the lab is that the whole enterprise is completely mind-blowing. Yet we just keep doing it, and so we keep blowing minds. The latest: a team of researchers at Japan’s RIKEN Center–the same group who earlier this year engineered a mouse retina that is the most complex tissue ever engineered–have now derived a working pituitary gland from mouse stem cells.
We cover biomedical science and engineering a lot, and sometimes I get to wondering: if I was rebuilding my own flimsy, flesh-based body–presumably because I’d had some ghastly dismembering, eviscerating accident–and replacing my limbs, joints, senses, and organs with the most futuristic, top-of-the-line bionics, what would I get? Would I want an artificial lower leg that sprinters use in Olympic-level races, or a motorized leg that can climb a slope as well as a natural leg? I gathered a list of 15 bionic body parts that I’d want to wear, or have installed.
Click to launch a tour of the body parts I’d want in the event of an accident.
Researchers in Cleveland have built an artificial lung that is so efficient it can breathe regular air rather than the pure oxygen required by current artificial lungs. The technology makes possible the idea of a man-made lung that is far more portable–and possibly implantable–for the nearly 200 million people suffering from some degree of lung disease.
California researchers have created a tissue-engineered small-scale small intestine in mice, a breakthrough for regenerative medicine and a step toward growing new intestines for humans. The process re-creates all the layers of cells that make up a functioning intestine.
Private companies and hospital researchers are increasingly making strides toward developing an artificial pancreas, supplanting insulin injections and pinpricks for patients with diabetes. Such a system would mimic the functions of a healthy pancreas, delivering insulin and monitoring blood sugar according to a computer’s careful calculations.
This ersatz lung, no bigger than a multivitamin, could represent a new pharmaceutical testing method. On it, researchers have created an artificial alveolus, one of the sacs in the lungs where oxygen crosses a membrane to enter the body’s blood vessels. A polymer sheet that stands in for the membrane is in the blue strip. On one side of the sheet, blood-vessel cells mimic a capillary wall; on the other, lung-cancer cells mimic lung epithelial cells.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. 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” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally 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
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 email@example.com 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.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.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 two brand new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally 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.
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 email@example.com. 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.
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 http://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!
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.
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 http://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.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.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
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 email@example.com. 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 https://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.
(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 Initiative 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.
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – spread the word about the immediate need for more organ donors. On-line registration can be done at http://www.donatelife.net 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 Facebook’s Organ Transplantation Initiative (OTI) 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.