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.

Please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

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.

Also, please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

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. 

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

http://donatelife.wordpress.com/

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. 

Also, please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php   

It is unfortunate but there are some people who seek to take advantage of the misfortune of others.  While I find it hard to believe that anyone would take advantage of people seeking organ transplants, it happens and via this blog I will endeavor to expose as many of these people as I can.

Remember, if it seems too good to be true, it probably is.  Before you make any decisions about potential transplant possibilities in other countries check with your local Organ Procurement Organization (OPO), The United Network for Organ Sharing (UNOS) www.unos.org, or your state’s Attorney General’s office. 

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On March 19, 2009 Sue Weibezahl Porter of the Syracuse NY Post-standard wrote the following story under the headline:  (http://blog.syracuse.com/healthfitness/2009/03/international_organ_transplant.html)

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Organ transplant scam preyed on dying people, ends with capture of Syracuse man

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Federal prosecutors announced this afternoon that Jerome Feldman, 67, was captured in the Philippines and will be extradited to Syracuse on charges he scammed dying people by setting up phony organ transplant surgeries.  Feldman had them wire money — more than $400,000 — to the Chase Bank in DeWitt and also had postal boxes in Fayetteville and DeWitt for more checks, authorities said.

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It’s not the first time he’d been in trouble. His New York State medical license was revoked.  Feldman, who has family ties in Central New York, allegedly trolled Web sites looking for people who needed transplants.  Using phony names, he would promise to set up the surgeries if the people would wire money in advance.  FBI investigators have identified at least five victims, most of whom died after arriving in the Philippines and discovering the doctor who was supposed to perform the life-saving surgery did not exist. Feldman faces up to 20 years in federal prison and fines totaling more than $250,000.

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Authorities are also trying to freeze, then seize, his assets.

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If and as we find more of these frauds who prey on people’s worst fears and infirmities we will expose them.  In the meantime if you are aware of a person or organization that appears to be a scam let us know and we’ll do what we can to get to the truth.

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Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the 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 have saved or affected over 50 lives.

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Also, please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   I ask, too, that you visit and join my Facebook site, Organ Transplant Patients, Families and Friends at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php   

In the March 2009 edition of the Virtual Mentor The American Medical Association Journal of Ethics has published a paper in support of “First Person Consent,” a concept that could increase the number of organs available for transplantation. Now effective in 42 states, “First Person Consent” laws dictate that a documented donation decision like a donor card, drivers license etc, is legally binding and does not require the consent of any other person upon the death of the donor.   That means if a person has documented their decision to be a donor, families have no legal right to overrule it.  You can read the report in its entirety at http://virtualmentor.ama-assn.org/

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I’ll explain the rationale in a moment but in order to make the concept effective two things must be done, 1) more people need to document their wishes.  That means that we should consider enacting laws in every state that require people to make a decision on donation when they renew their drivers license.  2) Medical personnel need to defer to the expertise of Organ Procurement Organizations (OPOs). 

To further quote from the AMA report,”The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation.  “The refusal of families to grant permission is a major impediment to organ donation.  If, despite the law, we must get family consent, several factors have been shown to improve family consent rates:

First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death.  

Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family.

Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures are followed [1].(clicking on the number will provide further information).”

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The AMA report continues, “First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families who made a decision themselves and declined to donate the organs subsequently regretted their decision [2].”

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The Virtual Mentor also says, “The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all.

The AMA report is very emphatic, though, on the need for OPOs to develop and maintain a close working relationship with donor families.  “Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

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Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.”

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I am a believer in adopting a system of presumed consent.  One in which people could opt out rather than opt in.  In countries where this has been tried donation rates have increased substantially.  But presumed consent requires a change in the law.  First Person Consent is already the law in all but 8 states.  What needs to be done is to fine-tune the system so we can eliminate the obligation OPOs and hospital officials feel to get donation permission from families.  Under First Person Consent laws no permission is necessary and that could mean a significant increase in available organs.  Perhaps if the AMA suggestions were adopted we might be a step closer to closing the organ donation/transplantation gap.

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Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the 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 have saved or affected over 50 lives.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Families and Friends at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php   

THIS IS NOT AN OFFER TO BUY ORGANS.  ATTEMPTS TO SELL ORGANS HERE WILL NOT BE PUBLISHED.

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Let me begin by quoting Sally Satel M.D., Kidney transplant recipient and Resident Scholar American Enterprise Institute: (Kidney for Sale, Lets Legally Reward the Donor  http://www.aei.org/publications/filter.all,pubID.29515/pub_detail.asp)

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“America faces a desperate organ shortage. Today, more than 78,000 people are waiting for a kidney transplant; only one in four will receive one this year, while twelve die each day waiting for help. Not surprisingly, many patients are driven to desperate measures to circumvent the eight-year waiting list—renting billboards, advertising in newsletters, or even purchasing organs on the global black market. Altruism (the current system where one donates an organ through the goodness of their heart) is an admirable but clearly insufficient motivation for would-be donors.

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According to the International Society of Nephrology, kidney disease affects more than 500 million people worldwide, or 10 per cent of the adult population. With more people developing high blood pressure and diabetes (key risks for kidney disease), the picture will only worsen.

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There are nearly two million new cases of the most serious form of kidney disease–renal failure–each year. Unless patients with renal failure receive a kidney transplant or undergo dialysis–an expensive, lifelong procedure that cleanses the blood of toxins–death is guaranteed within a few weeks”

The argument against paying people for their organs (living donors of kidneys and livers) is that the practice would prey on the poor.  Supposedly only people who are in desperate need of money would sell their organs.  “The rich or reasonably well off,” the argument goes, “Don’t need the money so few of them would become donors under such a system.”  Additionally, wealthy people could buy organs from the poor but the poor could not afford to buy organs if they needed them.  So the question;  “Is it ethical to compensate people for their organs?”  My answer is, probably not – if the exchange is simply cash from the recipient to the donor for a kidney.  But what if there are other considerations?  Dr. Satel offers some interesting options:

“My colleagues and I suggest a system in which compensation is provided by a third party (government, a charity or insurance) with public oversight. Because bidding and private buying would not be permitted, available organs would be distributed to the next in line–not just to the wealthy. Donors would be carefully screened for physical and psychological problems, as is currently done for all volunteer living kidney donors. Moreover, they would be guaranteed follow-up care for any complications.

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Many people are uneasy about offering lump-sum cash payments. A solution is to provide in-kind rewards–such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance–so the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash.   The only way to stop illicit markets is to create legal ones. Indeed, there is no better justification for testing legal modes of exchange than the very depredations of the underground market.”

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Dr. Satel goes on to say that, “Momentum is growing. In the British Medical Journal, a leading British transplant surgeon called for a controlled donor compensation program for unrelated live donors. Within the past year, the Israeli, Saudi and Indian governments have decided to offer incentives ranging from lifelong health insurance for the donor to a cash benefit. In the United States, the American Medical Association has endorsed a draft bill that would make it easier for states to offer non-cash incentives for donation.”

• Dr. Satel and her colleagues call on Congress to reform the 1984 National Organ Transplant Act (NOTA), which makes it a felony to provide material reward for an organ. The authors suggest that:

 • Congress should amend NOTA so that existing criminal penalties for selling and brokering organ sales between individuals do not apply to any economic incentives offered by federal, state, or local governments. Such a revision would not require any such incentives; it would simply allow states and federal agencies to undertake experimental incentive programs.

• Compensation to prospective donors could take the form of health insurance, tax credits,

tuition vouchers, or contributions to tax-free retirement accounts.

• Rigorous protections for the safety of donors would be created.

• Because the compensation would be provided by the government, every patient in need

would benefit, regardless of income.”

The issue of paying for human organs is controversial to say the least but that does not mean it can’t or won’t work.  Iran, which is usually not a good example for much of anything, allows for such a program and the result reportedly is that their waiting list has sharply declined and in some cases it has diminished entirely. 

http://freakonomics.blogs.nytimes.com/2008/04/29/human-organs-for-sale-legally-in-which-country/ 

What we need in the United States is an open dialogue free of emotional outbursts that would allow for a small pilot program to test the concept.  We need universal agreement on the need to elminate organ transplant waiting lists, much like the commitment the National Kidney Foundation made to eliminating the kidney waiting list within ten years.   We must also agree, though, that the altruistic approach that we’ve tried for the last quarter of a century does not work.  Every year the number of people who die while waiting for a transplant grows, yet we continue to cling to the notion that if we work a little harder more people will become donors.  Well, everyone has worked very hard and we are still losing the battle.  As I have written before about the United Network for Organ Sharing (UNOS) which regulates the entire process, “It’s not working and it is time we tried something that will work, we must stop the dying.”  We’ve got to do something new and a pilot program somewhere in the United States would be a great way to start.  What have we got to lose?

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the 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 have saved or affected 50 or more lives.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

On the surface this blog may appear to have little or nothing to do with organ transplants but it is very relevant.  Over one hundred thousand people in the U.S. are waiting for organs, all of them wondering what tomorrow holds  and even — if there will be a tomorrow.  I was in that position and I know the feeling. 

I first published this post on my world wide issues blog  http://blogsbybob.wordpress.com , It so moved me and has received such an incredible response that I thought it was important to share it here as well.  What you are about to read was written by cancer patient Marcie Williams.   While Marcie is not waiting for a transplant I know we can all learn from her experience.  She wrote what follows in the hope that others will benefit.  If you want to know more about Marcie or contact her go to:

http://www.facebook.com/reqs.php#/group.php?gid=52102741772

I am not brave. I have cancer.
By Marcie Williams

One day you’re teaching, the next day you have cancer. Do you tell your supervisor or students? You’re the director of an ESL program and your employee gets cancer. What should you say? What if your colleague is diagnosed with cancer? What do you do? The aim of this article is to answer these questions and others.

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I am a cancer veteran. Veteran you say? Yes veteran. I’m not a fan of the word survivor because it doesn’t sufficiently describe the battle to beat cancer. Plus, I think survivor is stigmatizing in that it makes me forever known as the girl with cancer. I am more than that so I prefer veteran. In October 2005, I was a 30 year old ESL instructor. I lived in New York City and had a cool loft that, like most New Yorkers, I shared with five people to pay the rent. Then I discovered a lump. After hoping it would disappear, I went to the doctor. I had a mammogram, a biopsy, a core biopsy, and finally in January 2006 a mastectomy. This was followed by chemotherapy, radiation, and physical therapy for lymphedema. In May of 2007, I moved to Columbus.

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What I learned while going through my cancer battle was that if you are a cancer patient, support groups are plentiful and cover most aspects of your treatment. On the other hand, these groups do not provide support for my colleagues and coworkers. Many of them had no idea what to say to me and I also learned that many administrators were also unsure what to do or say once they learned of my illness. It occurred to me that I could help by offering suggestions.

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The suggestions I have written below can be divided into three sections – for everyone, for cancer patients and for supervisors. These suggestions are based on my own experiences, the experiences of other cancer veterans, and what I have read in various cancer books and blogs. It is my hope that the article below will help you if you are either fighting the cancer battle or helping someone fight it.

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For Everyone
If your friend or coworker has cancer, don’t ignore it. This is one of the biggest blunders you can make. Also, it does not matter if you think chemotherapy is toxic poison, try not to disagree with or criticize her treatment plan or give her suggestions for alternative medicines. It puts her in a defensive position. This is a time when she needs support not a time when she needs to justify her actions.

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People also tried to compare their illnesses with my cancer. I realize they were trying to relate to me and doing the best they could, but having pneumonia does not equal having cancer. People also tried to relate and help me by giving unsolicited advice and information. I had women come up, tell me they too had cancer and then go into the horrors of chemo, surgery etc. Some information was so scary I actually started to cry. Other times I just stared in shock. If you have information to share, it is my advice to tell the patient you have information that, when they are ready, you will share.

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I think people are at a loss of what to say when they learn you have cancer. They say what they think is best. People want to be supportive and helpful but some things just sound wrong. For example, when people told me to be positive or be strong, it added a lot of pressure to be constantly cheerful. People would say ‘you’re very brave” and I always thought “no, not really”. Brave is a firefighter who rescues a child from a burning building. I am just doing what I have to so I don’t die.

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Things you can do -
Ask questions, then listen
Give cards, gifts, visits
Tell us you have experiences with cancer – ask us if we are ready to hear what you know, then tell us
Do favors. Don’t ask, just do it.
Follow our lead – if we want to talk, then listen
Be there – ask us to lunch or dinner
Be normal – if we are out of the office, keep us in the loop and yes, by that I do mean gossip

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Say things like:
I’m here
You look great
I’m sending you prayers, karma, awesome thoughts
How are you today?
You are amazing
That is terrible

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Things NOT to say –
If you need anything, call me.
Don’t put us in a position to ask, just help

God won’t give you more than you can handle
This always made me think ‘so if I were weak, I wouldn’t have gotten cancer?’

My aunt/friend/sister died of that or my friend beat it and then had a recurrence
Please DO NOT tell me cancer stories with a bad ending

Is it treatable?  This always disturbed me because I just didn’t know. It was almost as if I should say ‘we have to wait and see if I die or not before I know if it’s treatable’

My whole family had it so I will get it too
Maybe but you don’t have it right now and you may not get it. This is not about you

That’s the most curable kind of cancer
This diminishes what the patient is going through

At least it isn’t brain cancer
Again, don’t diminish what the patient has

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For Patients
As a patient there are many work related issues to consider. Telling people you have cancer is a personal decision but I advocate telling both colleagues and students. Some of the reasons I told my colleagues were to prevent negative feelings, get help and promote understanding. I was afraid I would miss work or need extra help to perform my work duties and if they didn’t know the real reason, they would become resentful.

I told, and still tell, students I had cancer. I do this to help them. I learned that reactions to cancer vary in different countries and the reactions to ‘female’ cancers can be quite negative. For example, in Middle Eastern countries, cancer is shameful, too embarrassing, taboo and frightening to mention. Sometimes women aren’t allowed mammograms or other treatments because they would be administered by male doctors. In the UAE, cancer is the biggest killer of women because stigma prevents early detection. Many countries do not promote regular mammograms. If I can change these perceptions, encourage mammograms, or help any student. I will tell my story.

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If you choose to tell people, you should consider some of the following. Do you do it face to face or appoint someone to tell people for you? I had my sister tell my friends. After telling a few, and finding myself comforting them, I couldn’t do it anymore. You should also keep in mind that many people are squeamish, so consider how much detail you give. Gender plays a huge role in how you tell people as well. For me, it is uncomfortable to tell men and my male students I had breast cancer. It is also uncomfortable for them. If they ask what kind of cancer I had, I might look down, point, or depending on my mood, I tell.

If you decide to tell people, keep in mind their reactions. People mean well but oftentimes are wildly inappropriate. Keep that in mind and try to remain calm. I also try to alleviate their discomfort.

After you are diagnosed, it is important to keep some other work-related items in mind. Try to plan your doctor’s appointments at convenient times. This is not only for yourself, but for your supervisors as well. It is also important to communicate your schedule with your supervisors. If you have to miss work for an appointment, I recommend keeping a log. Some companies allow you to make up the time instead of taking vacation or sick days and it is important to record your absences.

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For Supervisors
Supervisors also have a key role in cancer patients’ work. Things that you as a supervisor can do include planning for every contingency. Patient’s reactions to cancer treatments are unpredictable so it is essential for supervisors to have a back-up plan. This requires flexibility and skillful budget handling. It is also important to communicate with your employee. The more information you have about the employee’s appointments, the more you can plan. If you need to know something, ask your employee. It takes the burden off the employee to remember and explain everything at a time when she is thinking about her own mortality. Oftentimes, supervisors try to reduce the patient’s workload. On the one hand, this is a lovely gesture, but on the other hand it runs the risk of scaring the patient. They might think you are doing this to slowly fire them, or it could make them feel useless. So don’t assume the person cannot do the job; ask them directly.

To conclude, I hope this has provided a bit of insight into the mindset of a cancer patient and given you some suggestions for what to say or do as a patient, supervisor or colleague. Before I finish, I’d like to share the best piece of advice I received while going through chemotherapy. A co-worker – also a cancer veteran – told me that while I was ill, it was my time. It was ok to think about myself; to be a little selfish or, for that matter, a lot selfish. This was a hugely liberating piece of advice and I think everyone can learn from it. If you are ill, it is your time. If your employee or coworker has cancer – it is her time. She needs everyone’s time, support, and understanding to beat the disease. Good luck to everyone.

I’m sure transplant patients can find paralells between Marcie’s experience and theirs.  Her tips, hints and suggestions are very germane and should be taken to heart by all who read this. 

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the 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 have saved or affected over 50 lives.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

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Sometimes on WordPress, the formatting goes berserk.  It did in this post and I apologize for the variances in print style but it was beyond my control.

Some of the greatest barriers to organ donation are urban myths and there are hundreds of them.  Primary among them, though, is the tale that doctors will let you die so they can recover your organs.  This lie seems to have risen from a single unresolved case in a California hospital in 2006.  Before we get to that, though, here are two examples of how this myth manifests itself into supposedly true stories thereby preventing people from becoming organ donors.

1. “My wife does not want me to be an organ donor because a few of her friends (who “just so happen to be ER nurses”) claim that when an organ donor is in a life & death situation on the table, doctors will not try and save them so that their organs may be used.  This sounds like it defeats the purpose; letting one die so another can live. But, she swears that it’s true.”
    
2. “I heard that having the pink organ donor ticket on your driver license will cause the Paramedics to allow you to die in order to harvest your organs. The rumor claims that due to the long list of people on the organ waiting list, the Paramedics are instructed to allow organ donors to die.”

First and foremost it is important to note that the medical team treating you in a hospital or ER is completely separate from the transplant team. The organ procurement organization (OPO) is not notified until all lifesaving efforts have failed and brain death has been determined by certified neurologists. The OPO does not even notify the transplant team of organ availability until the donor’s family has consented to donation.

Snopes.com, a wonderful source for dispelling myths, rumors and outright lies offers a concise and accurate explanation (http://www.snopes.com/medical/emergent/donor.asp) I encourage you to click on the link and read the entire entry but here are some of the more salient points. 

“While the rumor would appear to confirm the belief that physicians involved in harvesting organs will happily sacrifice one patient in their efforts to secure parts for others, such belief overlooks one particular facet of this conjecture: Doctors who fail to provide their best medical care to their patients can and will be sued. As professional healers, they are held to a higher legal “standard of care” than is the average person and thus aren’t afforded the luxury in life or death situations of not attempting to do all in their power to save those whose lives hang in the balance. Additionally, in those instances where patients died, doctors who did decide to scale back care could well be charged with homicide.”

So you might ask, “How did this rumor get started?”  Again, according to Snopes:

“The rumor about organ-hungry doctors prematurely offing potential donors gained an unfortunate shot in the arm from a 2006 case in San Luis Obispo, California. Ruben Navarro, a 25-year-old man who suffered from the neurological disorder adrenoleukodystrophy as a child (by his early 20s his mental and physical condition had deteriorated to a point where he was placed in an assisted-care facility), was admitted lifeless and unresponsive to the Sierra Vista Regional Medical Center on 29 January 2006. His organs were subsequently retrieved for transplant five days later. (Those transplants, by the way, never took place because Navarro survived for more than seven hours after he was removed from life support and was given certain drugs, so his organs had deteriorated too much to be usable.)

Prosecutors have charged Dr. Hootan C. Roozrokh, the surgeon who removed Navarro’s organs, with felony counts of dependent adult abuse, mingling a harmful substance (Betadine) and prescribing a controlled substance (morphine and Ativan) without medical purpose. It is their assertion that rather than allow Navarro to die naturally, the doctor knowingly hastened the process by introducing into him excessive amounts of narcotic painkillers and sedatives for the express purpose of killing him. The doctor is also said to have administered the antiseptic Betadine through a feeding tube into Navarro’s stomach while Navarro was still viable, a sterilization procedure typically done after a donor is dead (since it’s likely to kill the living).

Roozrokh’s attorney says Navarro “was going to die shortly, whether in minutes or in hours” and said of the excessive painkillers used that “In that situation, you err on the side of ensuring that he’s pain-free.” Over-medicating the dying with morphine is not at all a new practice; terminal patients are sometimes given unusually high or overly-frequent doses of the drug in an effort (generally unstated but also generally understood by both medical staff and family members in attendance) to help the dying slip through death’s door a bit more quickly and thus terminate sufferers’ torments sooner. Such practice is generally roundly denied when spoken of openly, however.

Dr. Roozrokh continues to practice, pending the verdict in his case.”

If you would like comprehensive information on other organ donation/transplantation myths please visit http://www.iaod.org/myths-organ-donation.htm

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the 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 have saved or affected  over 50 lives.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

The month of March is National Kidney Month and March 12, 2009 is World Kidney Day.  These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to “End the Wait” for a kidney transplant in the United States in the next decade.  This effort needs and deserves your support.  Thousands of lives depend on it.  At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.

There are two sources for kidneys, 1) living donors and 2) deceased donors.  While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts.  It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.     

I’m going to let the NKF speak for itself in this blog.  I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant.  They have wisely avoided addressing the issue of paying donors for their organs.   I will do that in a future blog.

In essence, NKF is advocating a multi-faceted collaborative initiative.  What follows are excerpts from that initiative.  http://www.kidney.org/news/end_the_wait/index.cfm

“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant.  It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)

• We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
• We should pay for immunosuppressive drugs for the life of the recipient. 
• The loss of a transplant is one of the leading reasons for starting dialysis.  Reducing that problem will make more kidneys available. 
• We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?” 
• We can also increase the number of organs available from deceased donors.   
• We can improve the care of donor families in hospitals and support them while they are with their loved one. 
• We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country. 
• And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs. 

Increasing the number of living donors is vital to meeting our goal.

• Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation. 
• We can cover all the costs of donation, including lost wages. 
• We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation. 
• And, a program of matched donation should be available throughout the United States.

Living donors and potential donors are our constituents, too.  NKF will establish a Living Donor Council to support their needs.  They should always have the best information about the donation process to help them make decisions that are right for them.

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We also can improve the American system of organ donation and transplantation.  Many challenges are resource-based.  We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process.  All potential living donors should have access to laparoscopic nephrectomy.

Summary

This can be done. It won’t be easy but the goal is worth the effort.  We can End The Wait!  We can leave existing laws as they are and write new ones that address the whole problem.  We can have a dramatic impact on the health of all our patients and our country. 

The National Kidney Foundation will commit itself to leading the effort.  If the community responds and reaches above individual priorities and single issues, the goal can be met.  The challenges are many and the work will be hard.  But, it’s the only way to do what our patients need us to do: END THE WAIT!”

Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php