My Transplant Odyssey
I wrote this story in order to share it at LITRIO.org
My story begins in August, 2007, when my nephrologist of 17 years (I have ADPKD) told me he was retiring because of ill health, and then gave me into the care of one of the young doctors in his practice. When this doctor saw my creatinine of 4.1, he handed me a list of three vascular surgeons’ names and told me to have a fistula put in ASAP – and, goodbye.
Needless to say, I was stunned by this news and, after thinking about it for a few days, I decided to get a second opinion. I called several doctor friends for a recommendation, and two of them gave me the name of Dr. Lionel Mailloux.
At my first meeting with Dr. Mailloux, I knew that he was the right nephrologist for me. Therefore, I transferred to his practice, where he did a number of tests to see exactly what my numbers were. Then, Dr. Mailloux told me that I was a perfect candidate for a pre-emptive transplant. He proceeded to manage my medications and diet so that I could stay healthy enough to remain off dialysis while I searched for a donor. It is because of Dr. Mailloux that I was healthy enough for a good transplant.
An aside here is that, owing to the fact that my father was the first kidney dialysis patient on the first hemodialysis machine on Long Island, I had an inordinate, paralyzing fear of dialysis. I had watched him deal with the horrors of the huge, powerful machine and the various “shunts” in his left arm (which turned his arm black), along with the difficult – and unscheduled – long dialysis treatments. It was then that I decided that dialysis would never be a part of my life. And, with Dr. Mailloux’s help, it never was.”
At that time, North Shore/LIJ Kidney Transplant Program was just a name to me, and to my knowledge, had not yet done any transplants. Therefore, I signed up with a transplant center well-known for its kidney transplant program. There, I completed about a dozen preparatory tests, after which I was put on the UNOS list. However, even though I brought 6 altruistic donors to this transplant center, they were all summarily disqualified. When the last donor, a young girl of 24, in perfect health – as per all her tests – was disqualified on the very day when I was expecting a call from my Transplant Coordinator (with a date for my surgery), I knew I would never have my transplant at that transplant center. It seems, via sentiments relayed to me – twice – by my Transplant Coordinator, that the hospital was more concerned about the their reputation (i.e., “what would happen if something were to go wrong and get into the papers, then this center’s name would be in the mud,”) than they were about my health. There, it was imperative that every donor and recipient be absolutely perfect. Also, I believe that I did not look sick enough for real transplant consideration. The term “pre-emptive transplant” seems to have been missing from their data base.
It was at this time that I decided to contact Dr. Ernesto Molmenti at the North Shore/LIJ Transplant Program. I sent him an Email, asking if he would see me and consider accepting me as a patient in his kidney transplant program. At his affirmative answer, I made an appointment to meet him and his team on August 26, 2008. As I walked in that day, everything and everyone immediately felt “right.” Dr. Molmenti and Dr. Madhu Bhaskaran, the Team Nephrologist, were extremely knowledgeable, and I learned more in that one meeting than I had in a year at the other transplant center.
Everything was handled very professionally and easily, so that I didn’t have anything to do but be examined and answer the doctors’ and nurses’ questions, in order to fill in my medical history. I was told that I had to have other examinations by various specialists, with all resulting tests, which took place in no time.
When all the test results were in, including all those which I had had for the previous transplant center (which arrived at North Shore despite the other center’s having told me that my records and my sister’s had been shredded!), the team and I discussed my two donors. These consisted of my last disqualified donor and my sister, the first disqualified donor. It was determined by my new Transplant Coordinator, Kristin Barry, to start with my sister, Valerie Heslar, whom I brought to meet the team soon after.
My sister was tested, and found to be a good match for me, but for the fact that she was 35 pounds overweight. Instead of disqualifying her on the spot, as the other center had done, the new Transplant Dietician and my new Transplant Coordinator worked with Valerie so that she could lose the extra weight, which she did, with a special, healthy diet. She had some extra tests, and was then cleared for surgery.
Thus, on February 23, 2009, Valerie and I entered North Shore University Hospital together at 5:30 AM. All the doctors and nurses at the hospital were wonderfully knowledgeable and kind and, soon, Valerie and I were ready for surgery. The transplant was done at 7:30 AM that morning. Dr. Molmenti came to speak to me before I went into the operating room, to make sure I had no questions. I saw Dr. Molmenti again in the operating room (as I joyfully hopped up onto the operating table!), and many times after the surgery, in the ICU, and later, in my room on 6 Monti.”
I never could have imagined the superb care which I received in this hospital! I had a private room with private nurses, who were so wonderfully caring, kind, and helpful. The hospital dietician came to ask me what I would like to eat, the food was great! My care was so perfectly managed that I was able to leave the hospital on Wednesday, February 25, 2009, and have not had one problem since! My sister, (whose surgery was done by Dr. Louis Kavousi, the inventor of the laparoscopic nephrectomy), returned to work in only a few weeks, with just a small scar to mark the occasion of her donation to me.
To say that I will be eternally grateful and indebted to Dr. Molmenti and the North Shore/LIJ Kidney Transplant Team is a huge understatement! How do you say “Thank You” for your life and your future? Anyone who hasn’t had this miraculous gift of life given to them cannot possibly understand how profoundly it affects and changes you. I hope and pray that my changes are for the better – for the rest of my shiny, new life!