I became diabetic in 1972 when I was 20 years old. During the next 30 years I was plagued with numerous low blood sugar episodes which left me occasionally hospitalized. I developed a number of diabetic complications. After 30 years of having diabetes and unable to get tight control of the disease, my doctors decided my only choice was a pancreas transplant. In February 2002 I received a transplant. My new pancreas worked fine but I was having trouble maintaining my red blood cell count. After one year my pancreas failed. Because of complications from the pancreas procedure, I received a total of 28 blood transfusions. Unknown to anyone, my kidneys were much weaker than originally thought.
We decided to do the evaluations for a transplant. My wife was tested and found to be a compatible donor for me. Three months after the loss of my pancreas the doctors scheduled a kidney transplant for me with my wife as the donor. Two weeks before the scheduled transplant they found out my antibodies level had gone so high that my wife was no longer compatible and the surgery was cancelled.
My wife, our son and I were devastated, as it became apparent that our only choice would be dialysis. In November 2003 I started dialysis three times a week. We were told that there was not much hope for me to find a donor with the high antibody count.
My wife and I were not going to sit and wait for my antibodies to come down. We were starting to look for other alternatives. My nephew Mark, who taught at the University of Pittsburgh at the time, researched and found out about a treatment called plasmapheresis and IVIG for the lowering of antibodies. We found out that UCSF was doing trials for this new treatment and we started the following year.
Once a month for 11 months I had plasmapheresis and IVIG treatments. These treatments became more difficult. As the months went by my antibodies were not dropping. My kidney doctor at UCSF suggested that our only hope would be Dr. Robert Montgomery, who is the Director of the Compressive Incompatible Kidney Transplant Program at Johns Hopkins University hospital in Baltimore, Maryland. My kidney doctor told us that his treatment was more aggressive and was proving effective on reducing antibodies in patients like myself.
In June 2007, after completing a battery of tests and paperwork, my wife and I traveled to Baltimore for a meeting with Dr. Montgomery and the incompatible kidney transplant team. Dr. Montgomery advised us that he could lower the antibodies and perform the transplant and allow me to get my wife's kidney by the end of the summer. After spending a few days in Baltimore and meeting with the transplant team we felt very comfortable and confident with all of them.
In early August I fell and broke my hip, that very same day John Hopkins called with our transplant date. They wanted to transplant on August 6th. It was clear they had to push the transplant back.
The end of September John Hopkins notified us that plans had changed. We were now to become part of a ground-breaking three-way swap incompatible kidney transplant with two other couples, only the seventh ever attempted at Hopkins. In this procedure three people needing transplants swap donors in order to get a matching donor or a better match. Hopkins advised us that, although Liz could donate her kidney to me, she was a perfect match for another recipient for whom they had not been able to find a donor. In return, Hopkins would be able to give me a better match with a different donor.
After four years of expecting to get my wife's kidney, I was reluctant to receive a kidney from someone else. It quickly became apparent that this was a winning situation for everyone, including myself.
With all the planning for the transplant we had other things to do, such as finding a place to stay in Baltimore before and after the transplant. The hospital had given us a name of a lodging facility who rents townhouses right next to the hospital. We had no problem renting a place. They were pros and told us we could rent by the week as they knew we could be leaving on time if everything went as planned or if we had a setback we could stay on longer.
Liz, our 17 year old son John and I arrived in Baltimore on November 12, 2007. We had pre-op appointments and doctor appointments the following week. I had to check into the hospital on Thursday November 16th, so I could start my plasmapheresis. I could not believe we were finally at Johns Hopkins and that I was getting ready to receive my new Kidney in a few days.
In the meantime that same week two more transplant recipients and their donors along with an altruistic donor had arrived in Baltimore. The three recipients were placed on Nelson 7 of Johns Hopkins Hospital. Nelson 7 is a unique transplant floor it is a place where patients come who have been told elsewhere that they have little or no chance of getting a transplant due to high antibodies counts or incompatibility. For the first time in many years we found a place of unbridled optimism. Liz and I felt for the first time I could face life without Dialysis. Nelson 7, much like the rest of Hopkins, the staff from the Kidney people to the top transplant surgeons of the world treated their patients with kindness and respect. Our rooms were comfortable and roomy, but the donors' rooms were magnificent. Hopkins respects their donors' sacrifice and even places them in the hospitals VIP rooms, which are equal to rooms in a five(5) star hotel.
I had spent the four previous days of grueling treatments of plasmapresses and IVIG, and my antibodies levels had fallen to an acceptable level and we all were ready to go. With 200 doctors, nurses, and technicians, six complete surgical staffs along with six operating rooms they preceded with transplanting the kidneys. The surgeries went on simultaneously in the six operating rooms to reduce the time the kidneys were without blood supply. After about eight hours, the surgeries were over with everything going as planned.
Five days after surgery all the Kidney and donor patients and their families along with the doctors and staff meet for the first time. It was a very emotional meeting. Not very often in anybody's life does one have the chance to look into the eyes and hearts of someone who saved your life. In this room six were experiencing a rare opportunity afforded to so few. After the introductions, the tears and hugs started to come. Three families of three races and different backgrounds at one moment became one family.
Luke Perkins was an altruistic donor who gave me a kidney and freed up Liz's kidney for someone else. My wife Liz and I would also like to thank Luke Perkins, if the world had more Luke's in it many people would not be waiting for a Kidney to become available. Luke gave me a new life and we could not be more grateful to him.
Liz's Kidney went to a very special man named Tifiro Cook. He had the worst antibody count that Hopkins had every attempted and he is truly the poster child of incompatibly transplants. Prior to our arrival Tifiro had 34 straight days of plasmapheresis and IVIG treatments with a total of over 50. There had been a couple of attempts to transplant Tifiro prior to November 19th but his antibodies did come down enough. Sometime in September, when they ran our blood typing in the master computer, they found a one in a million shot that Liz and Tifiro were a perfect match. Tifiro would not require any additional treatments prior to transplant.
In the weeks to come, I went through two anti rejection episodes which were expected due to the high risk of the transplant. Dr. Montgomery responded with extremely aggressive treatment which I came through with flying colors. I cannot tell you this was not a difficult surgery, but I left the hospital with a completely functional kidney. I had been in many transplant centers, and none of them could help me. It was quite a relief when Dr. Montgomery held my hand and told me in June that he could do the transplant for me and that it would happen this year and that I was not to worry. I had not really been living those years on dialysis. It was more like just existing. I have been told that Dr. Montgomery and his transplant team are the greatest surgeons and staff on the planet, there was no doubt after that surgery.
Johns Hopkins has been rated the best hospital in America for 18 straight years. It is for me also. From the door man at the front of the hospital to the staff, everyone made me feel I was the most important patient in the vast 29 building hospital. John Hopkins made me feel the only mission in the hospital was to get me better.
