My Discovery-The Unbelievable Depth Of Love
Neil is a Long Island TRIO member, and one of our volunteers who is very active with our LI TRIO Facebook outreach efforts and he comments on our posts while posting important articles of interest with respect to transplantation and organ donation.
I asked Neil to write his interesting story sharing with us just how his life was changed with a living donor liver transplant. He came through with a candid, wonderful story and shares it as follows:
Epiphany: an illuminating discovery, realization, or disclosure. Fourteen years ago I had an Epiphany; I discovered the unbelievable depth of LOVE.
Like many, if not most men in their 40s and 50s, I had not been to a doctor for quite a while. I was busy flying all around the world as an engineer for a major company. However, little by little, I was feeling more fatigued, started losing a lot of weight, developed severe itching, and became jaundiced. In 1999 I finally went to see my family doctor and started getting a series of referrals to different specialists and took many different tests. Eventually I was diagnosed with Primary Sclerosing Cholangitis (PSC). I was told that the PSC had done a lot of damage to my liver and that someday I may need a liver transplant. I was given medication and vitamins and told to get monitored by a Liver Transplant Center. I selected Mount Sinai’s Transplant Center and was thoroughly evaluated just before Labor Day 1999 and told to come back in one year. I made it 3 days.
My gall bladder decided it would be a good time to cause problems. I was taken by the local Ambulance Corp to South Nassau Communities Hospital with high fever and abdominal complications. Once SNHC determined I also had liver problems they recommended I be transferred to Mt. Sinai. I was placed in the back of a patient transfer vehicle, basically a van, on a stretcher wearing just a hospital gown and sent to Mt Sinai. It would have helped if the driver knew how to get to Mt Sinai, instead he asked the guy on the stretcher with 103° fever, abdominal pain and no view to the exterior, how to get there. I got us there but there was no space in the emergency entrance for the van, so they parked on the street and put me on a mobile stretcher to roll me into the emergency room.
It would have worked better if it weren’t pouring with rain. We get to the emergency room entrance with me soaked in my hospital gown when the admitting people ask for my insurance card. I don’t have it;; SNCH gave all my personal effects to my wife, who was driving to Mt Sinai in our car. I was finally admitted and began what turned out to be a long series of stays. The doctors were able to calm things down eventually and my fever and pain were controlled for a while. They could not remove my gall bladder due to my spleen, which was now causing my blood not to clot. Over the next three months I was encephalopathy, which causes confusion and forgetfulness.
The doctors said they needed to do a Transjugular Intrahepatic Portosystemic Shunt or TIPS. It was supposed to be a very simple procedure taking less than an hour, so I told my wife to stay home and I would call her after it was over. It turned out to be anything but simple. With my very low white blood cell count the doctors could not stop my bleeding and I used every pint of compatible blood in the hospital. Sixteen hours later I awoke in a recovery room and borrowed a phone from one of the nurses to call my wife, who was having a difficult time finding out exactly what had happened.
My weight continued to drop. I weighed less than 100 pounds and was very jaundiced. Then I developed pancreatitis. I remember vividly when, right after Thanksgiving, three Mt. Sinai doctors walked into my hospital room to tell me that, without an immediate liver transplant, I would shortly die. There was not time for a cadaveric liver they said, I needed a living donor transplant and I needed it NOW. I thanked the doctors for their efforts to save me and prepared to die. No one was going to donate half their liver and I could never ask them to. Unknown to me, my brother Dan was on the phone looking for a liver donor. My sister Sue immediately volunteered and went through the rigorous donor testing in Florida and it looked like she was a candidate.
In December, Sue and her husband came up for the operation and we checked into the hospital. Mt Sinai needed to do their own independent verification that it would be safe for Sue to donate. As we waited for the transplant surgery, one of the doctors came to tell me that Sue would not be able to donate and we should all go home. I was prepared for this and was looking forward to one last Christmas. However, unknown to me, Dan was once again looking for donors, this time it was my nephew Mike. I did not want Mike to donate; he had just gotten out of the Navy and he and his wife had a very young baby boy. Mike and his wife Patty made it clear that I did not get a vote. He was rushed through the donor qualification testing at lightning speed and on January 6, 2000 (the feast of the Epiphany) we were back at Mt. Sinai. I received new life. My nephew Mike Gilmartin donated a large portion of his liver to me.
Even though it was not standard, Mt. Sinai put both of us in the same room after surgery and the ICU. Mike was in his mid-twenties and lifted weights for a hobby. I was in my fifties and looked like a survivor of a forced march. Guess who got all the attention from the nurses. Mike was also a volunteer fireman. The first weekend we were in our room the department brought a busload of firemen to see Mike. The rules were two visitors at a time but the nurses did not stand a chance against the entire village fire department.
After that we each had our own rooms.
They tell you before surgery that during the initial stages of recovery to expect to take one step back for every two steps forward. That is about what I experienced. My liver took a long time to kick in, but finally it began to work and my health started to return little by little. Since I had only half a liver the doctors had to create bile ducts. For the first two years I would get infections in these bile ducts called ascending cholangitis, which manifests as a very rapid high fever and uncontrollable shaking. This returned me to Mt. Sinai seven times over two years. The good news is that it was easily controlled with fluids and intravenous antibiotics; the bad news was it took two years to control. Finally my meds were adjusted so that I no longer have that side effect. Fourteen years later I have no medical issues, my blood tests are totally normal and I am leading a full life.
None of this would have been possible without the extraordinary gift of life from Mike. That donation allows me to be here today. That was major surgery that he did not need for himself. He put his life in jeopardy to give me the hope of life. That was a decision that he and his wife Patty made for which I will always be immeasurably grateful. They, along with my brother Dan, sister Sue and wife Barbara define the words “LOVE” and I will never be able to thank them all enough.