My sister is an organ donor

I am currently searching for a living donor. Although I am not just coming out and asking for family members to donate I have taken it upon myself to recruit an advocate and working together we are educating family and friends in hopes of making a point. Yes, I would like to have a living donor transplant but I think even bigger that that I want people to hear a "real" story about a dialysis patient, hopefully raising awareness about the importance of organ donation in any form. I say a "real" story because I always hear the "I know so and so who was on dialysis, had a transplant, and are doing great" story. To me this is an inaccurate description that gives a false impression. Anyway, here is the first in a series of e-mails from my recruited advocate.

Hi,
For those of you who don't know me, my name is Al Andux. I am George's Uncle, Godfather and friend. I am sending you this letter in effort to build an informed support network for George as he begins the long often disheartening road to Kidney Transplantation and recovery. Over the next several months to years, every one of us be able to support George in one way or another. The answers to questions like "What can I do?" or "How can I help?" are not always obvious, but they lie in understanding the process and becoming part of the journey. Thus, it is my goal to work closely with George to help educate as many people as possible on the requirements, steps, and needs that George will likely encounter so that each one of us can help in our own personal way. Further, for those of you who choose to share this journey, I will offer myself to you as a resource to answer (or help find answers) to any questions regarding the needs, logistics, requirements or anything relating to the support that you may be willing to give or consider giving.

Last week, I had the wonderful opportunity to attend a Transplant orientation class at UNC Hospital with George. I use the words "wonderful opportunity" because I met so many wonderful people (both potential recipients and potential donors) and learned so much about the need for transplantation (along with the requirements for both receiving and donating) that it changed my perspective completely realizing that I have the ability to someone back the life that they are so close to losing.

Perhaps the most impactful part of my day was meeting Cynthia. Cynthia was a delightful 13 year old girl of Spanish decent who smiled continuously. Cynthia is on dialysis (life support) and waiting for a donor. Cynthia was there with her mother who spoke no English. So at 13, she not only had the responsibility of understanding all of the information presented (a good portion of which went over my head), she also had to translate to her mom in real time, since translators were not permitted in the room (there is much bureaucracy in this entire process). Yet, Cynthia never stopped smiling. Perhaps in her innocence, Cynthia doesn't realize that she will miss all of her teenage life focusing on survival and waiting for a donor that may never come. Today there are more than 70000 people are waiting for a kidney. Each year roughly 14000 transplants are received and 4000 die waiting. (these numbers indicate a 4+ year list where 25% of the people die waiting.) Perhaps in her innocence, Cynthia is not aware or does not understand that there are tremendous administrative and financial hurdles the she and her family must jump before she can even be considered for a transplant (even if she had a living donor). Or perhaps little Cynthia simply has a stronger belief in a higher being or more humanistic world than you and I have come to know. I don't know why she was continuously smiling but I do know that it would be nothing less than a crime of apathy, if Cynthia, or any of the 15 other recipient candidates in the room are simply allowed to die. Sadly, more than half of them will.

I learned that the process of Transplantation is lifelong. It obviously begins with Kidney failure and dialysis, moves to a long (typically 6 months) and rigorous stage of application where applicants are evaluated and judged to be "suitable recipients" (based on physical, psychological, and financial health). Oddly, the entire application phase must be followed even if a living donor has already been identified. Once qualified, the candidate (without an identified donor) begins the very long, disheartening process of waiting for the "hopeful call" that a non-living donor kidney has become available. The call is at best hopeful because once called, the candidate must immediately rush to the hospital only to be again evaluated along with of a handful of "backups" who were also called (there is a ranking made due to tissue match - one candidate is selected, but back ups are also called in case the 1st person is ill or unavailable or there's a final cross-match problem) Yes. A candidate may wait for 5 years and due to unfavorable circumstances on the day of the call s/he will have to forego the opportunity OK, So assuming the candidate makes it to the operating table, the operation is straightforward and highly successful. The in-hospital and at-home recovery intervals are surprisingly short (a matter of a few weeks to a few months for the recipient) and then for the first time in what seemed like forever, they can live a "normal" life. Post-transplant follow-up visits are very frequent at first tapering down to a few visits/year in the post-transplant 3 to 5-year timeframe. One of the primary focuses of the follow-up is to evaluate/adjust the anti-rejection medications which must be continued for life. It is estimated that in the "all is well" scenario, the out-of-pocket expenses can run upwards toward $12K per year.

While having an identified living donor does not change the process (ie. Both recipient and donor must be in excellent health, etc), it is by far superior to a cadaver transplant. Not only does a live donor obviously reduce the waiting period, eliminate the "hopeful call" and give the recipient a significantly improvement in the 5-year success ratio (>90%), recipients who have a live donor kidney transplant experience a higher success rate as well as a longer life span of the transplanted organ. (more on living vs. cadaver in my addendum below). In fact living donor kidney transplantation has the highest (short term and long term) success rate among ALL organ transplant procedure.

Simply put: living kidneys are higher quality and last longer than cadaver kidneys. Bluntly put: it is clearly a two-class system... living kidneys are premium quality organs reserved for those who are fortunate enough to be supported by living donors. And for the not so fortunate, cadaver kidneys offering luck-of-the-draw quality are doled out on a relative first-come-first-serve basis to those who can outlive the wait.

Although becoming a type-matched donor is much easier and less taxing than being a recipient, there are still hurdles to jump. Only healthy, high-quality kidneys are considered. There are some factors such as medical history and current physical and emotional health that MAY cause a willing donor to be eliminated from further consideration. For this reason it is recommended that a "pool" of potential donor candidates be identified (and professionally evaluated) as early in the process as possible.

For those interested in being type-matched with George the first step is a simply blood type comparison. A simple blood-type comparison check is the first step. If you are type 'O', you are already a potential donor, all others may need to be specifically "type matched" - I will send more specific match-types shortly. Steps 2 and 3 require a bit more extensive bloodwork along with the previously mentioned physical and emotional evaluation of the donor candidates.

Of course, perhaps more significant than being a qualified to donate, a much harder and deeper issue is the issue of true willingness. While for some donating a kidney might be a "no brainer" for others it can be a very agonizing decision. There are a wealth of web sites that discuss the decision process and can be of help to understand some worries/concerns that others have considered. For the sake of brevity (in this e-mail) I will offer just a couple of thoughts. a) the kidney removal procedure can be done using laparoscopic techniques (ie. Minimally invasive surgery) minimizing the risks and enabling the donor to go home within a couple of days. b) Studies have shown that with very rare exception donors return to a full normal lifestyle with no long term effect due to the loss of a kidney (other than the satisfaction of knowing that they have given someone the gift of life). c) all donor candidates are considered "tentative" meaning that the decision to donate can be rescinded at any time without any divulgence of any personal information to the recipient or anyone.

Another are in which your support is desperately needed is in the realm of finances. While no one ever wants to ask anyone for money, there is no doubt that George will need to demonstrate some kind of significant financial support network (to cover lifelong out-of-pocket expenses) prior to be accepted as a transplant candidate. While the exact expectations are not clear right now, I believe there will need to be some kind of trust fund through UNC Hospitals or National Kidney Foundation or something like that. Regardless of the form, fund raising will be a necessity in the near term and the help of anyone and everyone will be needed. I'll send more information on this as the requirements become clearer.

And finally, there is much needed prayer. Please pray for George, Cynthia, and the thousands of others who must unwillingly travel this path. Pray for those who die while waiting for others to die so that they might live. Pray for those who desperately want to donate to their loved ones but cause for various reasons they can't. And pray that those of us who can so easily cover our eyes, instead open our hearts.

Please feel free to send either George or I any private/public comments/questions/suggestions that you may have. Also, if you know someone who would like to be added to or would like to be removed from future distributions, please notify me.

Thanks,
…Al

A bit more on Living vs. Cadaver Kidneys...
* Living donors are usually blood relatives of the recipient yielding the closest possible type-matched criteria but they can also be a friend or even a stranger. The closer the match, the higher the success ratio.

* Multiple potential donors can be tested ahead of time to find the donor who is most compatible with the recipient. Again this results in the best possible match.

* The live-donor kidney transplant is a planned, scheduled procedure as compared with a cadaver which is most often an emergency procedure. This assures that both the donor and the recipient are in the best condition (mentally and physically) and perhaps more importantly yields optimum operating conditions.

* In the case of a non-living donor, the kidney most often arrives without a full health history or documentation. More often than not, donor health issues or other factors such as such as drug use, alcoholism, etc. that may affect the quality of the kidney remain unknown. With living donors, health histories are thoroughly evaluated and are any underlying health problems are ruled out assuring the best possible quality kidney. Cadaver donors, on the other hand, offer the luck of the draw.

* In the case of a non-living donor, the kidney is from the donor (often in emergency conditions), cooled and kept in preservation solution until it is transported to the transplanting hospital. While the preservation process is considered acceptable, it is not ideal. Often, in the case of non-living transplantations the kidneys do not function immediately, and as a result, the patient may require continued dialysis until the kidney starts to function. A kidney from a living donor usually functions immediately, making it easier to monitor.

*Living kidney transplant procedures enjoy the distinction of being the most successful procedure with the highest long term success rate when compared to all other organ transplants performed in the US today. This give us, the potential donor pool, the opportunity to ensure that Kevin has the absolute best odds possible!!

A final note: While there is a some amount of evaluation and type-matching required for a living donor, ANYONE who desires to give the gift of life should never count themselves out. There are a number of programs and alternatives where even type incompatible donor candidates can give. I can elaborate more on these in future mailings.