A Kidney Journey

Dr. Stu Himmelstein, MD

        Hi.  My name is Stuart Himmelstein and as a General Internal Medicine physician my personal experience of the past few years has been what I would call an enlightening journey.  As a physician, I am used to treating patients with serious medical problems, but when diagnosed with kidney disease leading to end stage kidney disease and dialysis, I assumed the role of the patient as well. Along with adjusting to my new role of patient, this has made me aware of the work yet to be done to bring all of us on the similar journey to reaching a rewarding life saving goal of a kidney transplant. It is a journey filled with a lot of disbelief and frustration and sometimes great promise and hopefully ultimately the rewards of the lifesaving donation of an organ and in this case a kidney.  It is also a journey that many in this country are as of yet unaware and leaving us to deal with in our own personal ways.   

       As for those of us in need, there are two not mutually exclusive avenues.    There is the deceased donor list that comes from people who are deceased with yet good organs who have previously chosen to be organ donors having it marked on their licenses among other ways.   I became aware that roughly 95,000 people are on the deceased donor kidney list and sometimes a long wait as I have experienced waiting more than 6 years.  The United Network of Organ Sharing(UNOS) manages this list nationally divided into regions with a computer algorithm that helps keep allotment fair and ethical.  Getting on the list for these is the first step.

        Once one is on the above lists, the next step is finding an altruistic live donor.  Some say that these have a better post-transplant survival and there is no waitlist for these.  Usually after one qualifies at one or more transplant centers and they are placed on the list they can have relatives, close friends, and sometimes complete strangers volunteer to be tested to donate a kidney if the prospective donor is healthy enough.  The donor work-up to qualify is very rigorous to make sure they are healthy enough as “first do no harm to the donor.”    Since it can be a very long wait as it has been for me, and, as stated, post-transplant kidney survival can be better, it is good to try for an altruistic live donor.  I know 4 people who altruistically donated and have gone on to live healthy, productive, and successful lives.

        Although many people and organizations in this country are working selflessly to help with navigating this bumpy road for those of us in need, we can do better.   This journey I refer to is that of navigating the sometimes-frustrating system of finding a kidney from an altruistic living donor while waiting on what can seem like the endless wait on the deceased donor list while, all the time, staying positive.  To help relieve this burden, we need to do better. We need to make the population in general more aware to register as a deceased donor and state it on their driver license in case, they themselves come to a tragic end with preserved organs that can go on to help others live a healthy life.  On the other hand we move in the direction of making the same population aware that if they are otherwise healthy, they can live a healthy life with one kidney…yes, as the corny saying goes, they can “share the spare.”  In other words, when a person in need of the lifesaving kidney exhausts the possible live donors in relatives and close friends, there are folks out there who will altruistically give a kidney.  I call them “walking angels.”  As I search and wait for my kidney, I am committed to helping make a system work better to make the population as a whole more aware of this need and how they can help by helping to create these programs either independently or with organizations such as the Florida Chapter of the National Kidney Foundation.  You are invited to help.

        I was diagnosed with my kidney disease that ultimately led to kidney failure about 8 years ago and have been waiting 6 years on the list.  My underlying disease is a congenital abnormality, Tuberous Sclerosis Complex, that won’t threaten the new kidney when I am blessed with one.  As a primary care physician, I still care for my patients although my medical practice is now not Grand-Central Station-at- rush-hour busy.  A new kidney will help me persist and be there for my patients and giving back while living a healthier life. By the way, I’m listed at University of Miami/Jackson Hospital, the Miami Transplant Institute and anyone who wishes to look into being my “walking angel” start by going to MTILivingdonor.org.

Thanks,   Stuart Himmelstein