Saturday, November 28, 2009

an open letter

Dear friends, family, neighbors, kindhearted strangers,

My wife Jeanne was diagnosed with Autosominal Dominant Polycystic Kidney Disease in 1992, soon after we were married. Polycystic Kidney Disease (PKD) is a genetic disorder which affects an estimated 1 in 500 people worldwide. The presence of the PKD gene causes cysts to grow on the kidneys, which over time reduce the kidney’s ability to remove waste and toxins from the body. There is no cure, and currently no accepted treatments to slow the progression of the disease. Kidney failure occurs in approximately 50% of patients who have PKD.

Once kidney failure occurs, the only treatment options are dialysis and transplant. Dialysis is a process whereby the patient is hooked up to what is essentially an artificial kidney machine. Typically the process lasts for three hours and is performed three times a week, most often in a special dialysis center. Transplantation involves taking a kidney from another person, either deceased or living, and placing it into the patient’s body. For Jeanne, her kidney failure occurred fairly early in life – when she was only 31 years old. Jeanne was fortunate enough to receive a transplanted kidney, donated to her by her Aunt Susie in May of 1998.

Jeanne’s kidney transplant was a life-changing experience for her. It vastly improved her health and literally gave her new life, despite the many medications she needs to take to allow her body to accept the new kidney as her own. That’s the good news. The bad news is that a kidney transplant is not a cure for kidney disease – only a treatment. Transplanted kidneys can only last so long in a foreign body. In fact, the very drugs that are required to be taken to allow the body to prevent the new kidney from being rejected have an adverse affect on the kidney itself.

So, here we are 11 ½ years after the transplant, and the time has come where Jeanne’s “extra kidney” is no longer able to do its job very well. Jeanne’s creatinine levels (which are used to measure the effectiveness of the kidneys) are rising and it is time to face the reality of approaching kidney failure yet again. Jeanne has gone through the initial process of transplant evaluation and, as of September 30th, she has been placed on the waiting list for a deceased donor kidney. The amount of time one has to wait for a deceased donor kidney is highly variable, as it takes into account many factors, but the reality is that there are far more people in need of kidneys than there are kidneys available for those people. Given that Jeanne is blood type O, we are being told that the expected wait time to receive a deceased donor kidney is likely around seven years.

Living kidney donation is another option, as the large majority of us are able to live full healthy lives with only a single kidney, despite the fact that we have two in our bodies. Jeanne’s first kidney transplant was a living kidney donation from her Aunt Susie. In a living kidney donation, a person agrees to donate one of their two kidneys by having it surgically removed and transplanted into the recipient. In general, living kidney donations have much better success rates than deceased donor kidneys.

The three main requirements for being able to perform a living donor transplant are blood type compatibility, antigen matching and crossmatch compatibility. Blood type compatibility follows the same rules as for blood donation: A can donate to A or AB; B can donate to B or AB; O can donate to everyone; and everyone can donate to AB. Antigens are six markers on cells in our bodies that help our immune system identify foreign cells entering our bodies. The more of these antigens which match between the donor and recipient, the more likely there will be a good outcome of the transplant. And, finally, a blood test is done whereby the blood of the donor and recipient are mixed together to see if the recipients blood reacts against the donors blood. If it does, this is considered a positive crossmatch, and this condition decreases the likelihood of a successful transplant.

In the hopes that we can avoid the expected seven year wait, I have begun the process of attempting to see if I can become a living kidney donor. Unfortunately, since Jeanne is blood type O (the universal donor) and I am blood type AB (the universal receiver), I will not be able to donate a kidney directly to Jeanne. However, there is a small possibility of us being able to participate in a donor swap, whereby we could be matched up with an O-type donor and an AB-type recipient who are otherwise incompatible due to poor antigen matching or a positive crossmatch reaction. While the chances of us being successfully paired up in this manner are somewhat minimal, they are certainly better than if I try than if I do not.

Deciding to donate a kidney is a major life decision, so I could never ask someone directly if they would be willing to join me in my attempt to provide Jeanne a living donor kidney. It simply would not be appropriate in my mind to put someone on the spot like that. There is certainly pain involved, various emotional issues to sort through, potential financial impacts, and some small risks associated with the surgery itself. It is not a decision to make hastily, nor one to be made because you feel pressured to do so. However, given Jeanne’s health and the reality that even if a match is eventually found for my kidney, it could take quite some time before that happens, I feel it my duty to at least put some information out there which would enable someone who might be willing to step forward to do so.

If, after careful reflection, you do feel that you may wish to become a potential kidney donor, you may contact the Rogosin Institute Transplantation Center at (212) 517-3099 and inform them that the patient you are inquiring about is Jeanne Tobin. Jeanne’s clinical transplant coordinator is Warren Phillips. You may speak to him or to another member of the transplantation staff. They will be happy to answer any questions you have about kidney donation and will respect your privacy along the way as well. If you wish to do some research on your own, you may find the information at to be helpful.


Bob Sayah


Miriam said...

Check out the National Kidney Registry if you haven't already:

Bob said...

Hi, Miriam. Thanks for the pointer. I think that the National Kidney Registry is exactly where I will end up being registered once I have completed this initial process. According to the handout I received last week from the transplant center:

"One way to help solve this problem [of incompatable donors] is to enter the incompatible donor and recipient into a larger pool of other incompatible donor and recipient pairs. Then, patients are matched to donors with whom they are compatible. One such pool is the National Kidney Registry, with whom NYP-Weill Cornell has worked."

The handout goes on to also mention a Kidney Paired Donation Pilot Program of UNOS which they are also a part of.

From what I am reading, I am inferring that the transplant center itself will coordinate a lot of this for me, but I will check to be certain. What I should also ask about is whether or not it makes sense to pursue other paired donation registries that perhaps the transplant center does not work directly with (assuming there are others, that is).