Anne Smyth: "I had total kidney failure and was put on life support in intensive care. I was placed on a double transplant waiting list, as I needed not just a new liver but a kidney also."
Photograph: Dara Mac Dónaill
The Irish Times - Tuesday, July 6, 2010
MY HEALTH EXPERIENCE: ANNE SMYTH: Second transplant saved my life after organ failure
IT ALL started with what appeared to be an adverse reaction to a vaccination jab back in 1991. I was working in Dublin’s Beaumont Hospital, and as my job routinely brought me in contact with blood, it was necessary to get inoculated against hepatitis B.
I suppose you could say the vaccine, which was administered in three stages, highlighted an underlying illness. By the time I’d had the third injection, it was obvious something was wrong; my skin had turned completely yellow. I remember being startled at the colour of my eyeballs in the mirror.
I went to my doctor who carried out a series of blood tests, which pointed to a problem with my liver. I was referred to a specialist in Beaumont and taken in for another series of tests, which confirmed I had a condition known as primary biliary cirrhosis, an auto-immune disease which affects the liver.
As a 38-year-old mother of five young children, I was anxious and upset to find out I had a chronic condition. However, the doctors assured me the disease had a slow rate of progression, and it would be several years before the symptoms became what they termed “unmanageable”.
They even joked I’d probably be a grandmother before I needed a transplant. Unfortunately, things didn’t quite work out that way. What should have been a routine biopsy to assess the state of my liver function caused an internal bleed. I was told it only happens to one in a million and that I was simply the unlucky one.
My health deteriorated rapidly and I was forced to spend several months in hospital while the doctors tried in vain to find the source of the bleed. I received more than 25 blood transfusions in the space of several weeks.
The doctors were finally forced to take evasive action by shutting down 75 per cent of the blood supply to my liver. Although this stopped the bleed, it caused more damage to my liver.
Instead of needing a transplant at some point in the distant future, I was facing the prospect of needing a donor organ sooner rather than later.
Meantime though, I was discharged from hospital and returned to work a few months later. I remained weak and struggled a lot with fatigue.
It wasn’t long before I began to get pains in my abdomen and lower back. I was admitted to St Vincent’s Hospital, and told the pains were coming from a severely infected gall bladder, which would have to be removed immediately.
My overall liver function was by now declining rapidly. There are many symptoms associated with liver disease, but perhaps the worst, at least for me, was the itch. You get this unbearable itch in your body caused from all the toxins which your liver is unable to process.
The funny thing is that when your liver is failing, you can look quite healthy as your skin tends to glow. I lost more than three stone in weight in a few short months.
By April 1993 I was placed, for the first time, on the liver transplant waiting list. It’s strange but you have to be sick enough for a transplant, but well enough to undergo the operation.
I found this waiting period dreadful. Every single day, I would think that somebody out there is going to have to die in order for my life to be saved.
After some five months on the waiting list, an organ became available and I underwent an eight-hour transplant operation.
During my recovery, someone suggested I should enter the World Transplant Games. I laughed at the idea at first as I had been so ill and remained so weak. But the idea stuck and as I recovered I hatched a plan to go to the games to try to win a gold medal for my donor family as a way of saying thank you.
In 1995, two days before I was to travel to Manchester, where that year’s games were taking place, another biopsy on the liver revealed I was in a state of chronic organ rejection. Although I didn’t feel particularly unwell, the doctors assured me the symptoms would soon follow.
They said I was too ill to travel, but I insisted that I needed to go. They reluctantly let me go on the proviso that if I became ill I would take the next flight home. I went and won a gold medal in my age category in badminton, a sport I had played throughout my life.
Sadly, my plan to give the medal to my donor’s family never materialised. I was told the donor had been a young boy, an only child, whose parents had separated since his death, and there was no one to give the medal to.
I suppose because I have worked in hospitals, I have witnessed both sides of the transplant equation. I know it’s a life-saving procedure for so many people, but I’ve always felt there is a profound sadness behind it. It’s hard not to think of the donors and their families.
For several years after that, I battled with chronic rejection, in and out of hospital with various liver-related infections. I was angry the transplant could fail. The thought of going through another transplant operation scared me.
The situation eventually came to a head in late 2001 when both my kidneys began to fail, partly as a result of issues related to the initial transplant.
Shortly after, I had total kidney failure and was put on life support in intensive care. I was placed on a double transplant waiting list, as I needed not just a new liver but a kidney also.
There were several times when I didn’t think I’d make it. I weighed only five stone at this stage. But in June 2002, some nine years after my first transplant, I had a double transplant. My liver and both kidneys were removed and a donor liver and kidney transplanted.
To my astonishment, I was discharged from hospital and sent home after only two weeks. I haven’t looked back since. I have had little or no rejection problems up to this point.
I would encourage anyone facing the prospect of a second transplant, not to be afraid as it’s really so different than it used to be. The first time around transplant patients were pumped full of medicine which caused innumerable side effects. Now the medicines and dosages are more refined. The doctors here are also much more experienced in treating transplant patients.
Looking back, I suppose you could say I was unlucky to be ill for so long, but I don’t feel that way. I’ve two grandchildren that I never would have seen only for these operations.