Dear Mike,

Thank you for responding so quickly. I look forward to attending the upcoming meetings and volunteering in any way that is needed.

I would like to share my long journey with kidney disease with you.

My transplant took place at New York Presbyterian Hospital on June 6, 2007. My nephrologist is Dr. Lionel Mailloux who has been  monitoring my kidney functioning for the past 38 years. My kidney disease was discovered through a normal blood test when I was 35 years old.

As a teenager and young adult, I suffered from severe migraine headaches and at that time, there was no specific medication for migraines so heavy duty pain medication was prescribed. Unfortunately, that is what caused my kidneys to weaken. After a biopsy, I was informed that certain prescription medications had to be avoided  as well as some of my food choices that exacerbated my migraines. Each month I had blood tests to determine the level of kidney functioning and waiting to hear the results of the blood tests was very stressful. When was I going to get a call that a transplant was necessary?  The deterioration of my kidneys was slow so I always hoped and prayed that maybe a transplant was not in my future!

In 2006, Dr. Mailloux informed me that “it was indeed time to think about a transplant.” I remember hearing the words  but not really hearing what he said. I walked out of his office without saying a word. My husband and I drove home without saying anything to each other. After a few days of processing Dr. Mailloux’s words and what it meant for me and for my family, I researched various transplant centers trying to ascertain which was the best center for me.

I attended several meetings at the Hackensack Center, New York Presbyterian Hospital and spoke to several medical clinicians at the Pittsburgh Center. I was placed on the transplant list which was extremely traumatic. My husband, brother and my first cousin were examined as donors but various unknown medical problems surfaced at that time which eliminated them.

At 1:30am on June 6^th, I received a phone call from New York Presbyterian Hospital informing me that they had a “perfect kidney” and that I had to be in NYC by 6:30am. My husband had knee surgery recently so he was unable to drive. They told me that they would send a car for me if I had no other means of transportation. Needless to say, my husband and I were in shock, not knowing what to do, who to call but excited at the same time.

We quickly telephoned our son who drove us into NYC, arriving at 5:30am. Sitting in the waiting room is a very weird feeling- other potential recipients are there with their families, some are told, “sorry” and leaving for home feeling very forlorn. You share your kidney stories with other patients but when they are told that “today is not the day” sadness and tears are overwhelming.

A young man who worked as a doorman had been called twice and both times, the kidney was not compatible. Here was a young man with a young family who could no longer work and had to return to dialysis. I felt very guilty since I was never on dialysis and only 6 months on the list- why don’t they give this “perfect kidney” to this young man who is experiencing so much pain, physically, emotionally and financially? I could wait for another kidney. The medical team explained to me that kidneys had to be compatible and that my “perfect kidney” was not compatible with this patient.

After my transplant and 4 days in the hospital, I went home and started my regimen of anti-rejection medications. As with many kidney transplant recipients, it was difficult for my system to acclimate to the medications. However, seven years later, I am basically functioning well and feeling very lucky that my “perfect kidney” and my system were compatible.

Thank you for allowing me to share my journey – it is very  cathartic.

Sincerely,

Janice Gosule