Organ donation

So you were out after three weeks. In that time every day you saw small improvements?

Yes. I mean I will admit I was very fragile. I was still very thin. I was trying to walk every day. Walking was a bit of a challenge, but I thought if I’ve walked five minutes today, then I’m going to walk six minutes tomorrow.

It’s also your own attitude. You can have this gift, but you have to help yourself to get where you, to get better. And then it was a gradual process. After about three months, I think I was able to do a bit more walking. And then I thought I wanted to start exercising again.

But it was very slow. They didn’t rush in at the deep end, took it day by day. And I started to feel myself coming back.  I lost, my appetite came back. I put on weight. I’m now a woman, I’m not a skeleton. I have all shapes and curves I never had before. And I see it as a wonderful thing.
 

I took chronic diarrhoea. However, they sent me down to my local hospital and I was in there for a week. I couldn’t eat at all. I was being sick all the time. I had chronic diarrhoea, and this went on for nearly three months. It turned out I had oesophageal thrush. Which they cured.

I had to go to the hospital every Monday, that I had my transplant in, and every Wednesday, Friday to my local hospital. But, on a trip up to my local, my transplant hospital, the consultant came out, by which time I was in a wheelchair because I couldn’t even stand up. And he said, “Walk into my surgery.” And I said, “Well, I can’t.” I said, “Stop the diarrhoea, and I’ll walk, I’ll dance into your surgery.” And the answer to that problem was, “You’re not tolerating the immuno-suppressant. We’ll change it.” They changed it. The diarrhoea stopped and I can honestly say I’ve been well ever since.
 

I remember the first few days my nephrologist [kidney specialist] said, “You have to come here every day.” And I said, “Oh that’s a bit of a bore.” And he said, “Well you don’t actually understand what’s happening here. You have received a foreign object in your body, which the body would naturally choose to kill, i.e. reject. Because it’s a foreign body and the body’s natural defences would try to remove it, like influenza or a flu.

What we’re doing is, with this medication, especially the anti-suppressant medication as well as all the steroids and everything else… interestingly before I was on a transplant, when I was ill, I was on I calculated about 28 different types of pills every day, including phosphates and calcium and everything else. After my transplant, I was hardly on five or six, which was quite a relief to be honest.

But he told me the anti-rejection drugs chemically fool the brain and basically tell the brain and the body, “This is an OK object. It’s not a foreign object. It’s okay to stay in the body.” Which is why they are extremely potent and actually toxic. Too much of the medication will cause even the kidney to fail, but also liver problems, heart problems. I know quite a number of people who have had kidney disease, who have had a transplant and then they’re on the anti-rejection drugs, previous no case of heart disease [clicks fingers], heart attack. And thankfully I’ve been spared of that.

So it’s a very fine balance between how much to give, too much can kill the other organs, too little will stop the kidney working. So it’s a very fine balance, which made me appreciate the medical profession all the more.

Long term, obviously one has to be on the medication for a long time, but as I said compared to pre-transplant, it’s nothing compared to it. It’s just a handful of medicines and that one takes depending on blood pressure, etcetera. But it’s a totally different lifestyle. The quality of life is transformational. It’s just the one word I could use.
 

In 2006, in 2005 sorry, my liver was rejecting. I didn’t know at the time and I thought, “Oh here we go, I’m going to die.” Because I didn’t really want to die because I was enjoying life so much. So in 2006 in, in July, I went into the [hospital name] to be assessed for a second liver transplant. And they told me that I would be having one.

I felt fine the second time. I weren’t nervous at all. In fact I wanted to go out and take the dogs out straightaway. But I’m not allowed out because I had to wrap up warm. And then about a week later I’d got in the car and drove it.

So for someone who’s just come out of hospital after a liver transplant, is there any message or advice you would give?

After a liver transplant, you’ve just got a normal life and you’ve got to carry on with it. And don’t look back because you’ll be alright. I’ve seen plenty of people not survive, but if you put your mind to it, you will.

And that was in 2006?

Yeah.
 

They did the transplant and they said it worked fine. It began to work as soon as it was put into my body, right on the operating table. And they said it was an excellent match and everything.

However, after a few years, the blood results were not so good. The creatinine started to go up. And they said it looks like you’re having some sort of a long term slow rejection. So they gave me various treatments and different types of drugs, methyl prednisolone, drips and things, which were really quite powerful drugs, but none of them stopped the deterioration. I even had a plasma exchange, none of that cured the problem.

And then, by 1987, my kidney actually packed up. But in that same year I had to have a triple bypass as well. So I had the triple bypass in 1987, then I had, I went back on dialysis towards the end of 1987. And I was lucky enough in 1988 to get another organ from an unknown donor. That was in ’88 at Easter time.

But even in the short period I was on dialysis, I was on something called CAPD, which means continuous ambulatory peritoneal dialysis, even then I was cycling to work. I was cycling twenty miles a day on my bicycle. I was taking my bags of dialysing fluid with me. I was dialysing in the university where I was teaching and, in general, I always felt pretty good because I’ve always kept myself very fit.