Organ donation

I had problems really from birth because I was born with a congenital heart condition. And it wasn’t picked up until I was five because I was born in the fifties and there was no cardiac tests other than very basic ones.

So brought up with the sense that there was something wrong with my heart but not sure exactly what it was. Diagnosed properly at five and told that I was likely to have a very poor prognosis. But in fact I did much better. But I developed, over my life I developed pulmonary hypertension, which caused problems in my lungs.

And one of the main problems I was living with was getting very cyanosed, blue on exercise and breathlessness. So for all my life I’ve been very, very breathless. But I was, I think I was quite lucky in the sense I had a reasonably normal childhood and a reasonably normal adulthood up until about the age of 35. But I’d always had the sense of my life not being very long, and I kind of peaked in my, I’d say end of my twenties. My health peaked. And then started really deteriorating from early thirties.

And at that stage I knew time, the tock was clicking, no the clock was ticking [laughs] at that point, so I knew that my time was getting more limited. And through my thirties I started having quite major arrhythmias and I was much more blue and breathless on exercise. And by the time I reached forty, I couldn’t walk very far. I needed a, I had a disabled parking disc at that point. I couldn’t manage stairs very well. I couldn’t walk any great distance.

And then when I was about, I suppose early forties, everything started falling to bits because I had a virus, a dose of flu, and at that point the pulmonary hypertension got a lot worse and I could hardly breathe most of the time. I’d get very breathless just making a cup of tea or trying to do anything. And at that point I took medical retirement from work. And I was then told, well I think the possibility of a transplant had been around for a very long time.
 

The two years before [transplant], I lived in an armchair. I couldn’t feed myself. I couldn’t brush my own teeth, brush my hair, go to the bathroom. I couldn’t do anything. I had to be fed. It wasn’t a nice time for me because I’m very independent and it was one of them times where sometimes I wished the call would come that I would actually have the transplant, because I wanted to get back to normal, what you call normal. But I also knew, like I said, they were waiting for the right ones [organs].

I think not being able to brush my own teeth was one of the hardest things because I brush my teeth three or four times a day. And that was hard but the hardest of all, for me being ill really was easy, the hardest of all was watching my family and watching the looks on their faces.

And you’ve heard that saying when you’re crying inside and yelling and screaming, that was me, because I wanted to tell it, you know, there was a smile on my face 24/7 because I wanted them to know that I was alright, and I was dealing with what I was dealing with, because it made me feel better and I know it made them feel better. Some days they had pitiful looks. I said, “I don’t want that. I’m fine. The transplant will come. While I can sit here talking to you as best I can and breathing, then I’m fine.”

I had 24-hour oxygen so there was no problem of me stopping breathing or anything, because I’d got that support. And I still tried to do things with my daughter; obviously a lot went by the way. She did dancing and my Dad was taking her to dancing classes which, it does upset you because you want to be a part of your daughter’s life. So them two years was very hard.
 

They just said it could be a week, it could be months or it could be years. That was all I was told. So I had a bag packed ready, and then the call came. We zoomed off up to [hospital name].

Yes. What had you been able to do before the transplant? I mean at this point you were quite breathless and you had a pacemaker, but day to day what were you able to manage doing?

Well I could function fairly well. I was getting quite close to the stage where I was stopping and starting a lot. I couldn’t walk up hills without really, and the stairs were like Mount Everest and it was like a vice like feeling in my chest.

Were you able to carry on working at this point?

I worked until about six months before my transplant. And then I had to, yeah I didn’t.
 

I was diagnosed with this very rare disease called Lymphangioleiomyomatosis, which is called LAM for short. And I was actually told that I was at the end stage of my disease. I had maybe twelve, eighteen months to live, and I needed a double lung transplant to survive.

Words, emotions, it’s so hard to say. I just felt everything crumble around me. I was a young woman in my prime. When you get told devastating news that you’re going to die, or, you know with transplants it’s a 50'50 chance, some people do, some people don’t. And I knew now I was in this category.

But being the person I am, I wanted to be positive and the disease, I did some research with my family, we found out it affects one in a million women only. There is no cure. It’s not genetic, it not hereditary, and I wanted to set up a website to give inspiration and educate people in this disease.

Unfortunately, it didn’t stop there. My lungs kept collapsing and I was rushed into so many hospitals. When I said to doctors I had this disease called LAM, they laughed at me. They never knew what it was, never heard of it. And I was so glad I’ve set up my website because doctors would then hover around and read my illness, and then come back and take me more seriously.

My right lung I was told at this stage no longer worked. I was only surviving on my left lung, which had less than 30% function. The illness actually causes cysts to grow inside the lungs and so the pain I understand now I was feeling, over these seven to ten years, were cysts growing inside my lungs, filling up my airways, making it difficult for me to breathe. The cysts would pop, which would also explain the pain that I would feel, and at this stage I had hundreds and hundreds of cysts.

My left lung then collapsed thirteen times, so overall I had fifteen lung collapses. I was left fighting for my life so many times and one time my left lung had collapsed three times within a week.
 

I was about 23, 24, my health was starting to deteriorate. I started feeling tired, hadn’t really had chest infections up until that point, but I started getting them. And the guys at [name] Hospital in [place name] decided that I needed to have intravenous antibiotics, which was a big shock to the system because it was needles and I didn’t really like needles. But I started having those. And they were kind of seen as an MOT. They would tide me over and I’d be fine, and I’d just get on with work and doing whatever else again.

I was very interested in amateur dramatics and I started working with a group. And I guess it was when I was about 30 that, just kept on getting more and more chest infections. The antibiotics weren’t really doing their job.

Transplantation had been hinted at when I’d gone to my clinical visits, but it was in the back of my mind. And they said, “Look,” but I think they gave me a DVD to watch or a VHS at the time. And just said, “Have a look, see what you think.” Of course I was like, “Oh no, I don’t need that.” Because really I hadn’t been effected in ways that other people had so I thought no, that won’t be me.

And then just generally it went, my health went downhill very, very rapidly. I was having the IVs, I was going to school [place of work]. I was working with them [IVs] because I’d do them from home myself. They taught me how to administer them myself. I’d mix up the mixtures and the concoctions and put them through my arm and that was fine.  But as soon as that course had finished, I’d have about two weeks and I’d be fine, and then it would all start again.

I lost so much weight. I actually had to put weight on before they would do the op. Because they said in this condition, you wouldn’t survive. So I did overnight feeds. I had a tube put in through my stomach and I used to have this horrible thick milk shaky drink which is about 1000 calories per bottle, go through every night. And that’s the only, because it’s kind of like force feeding really, but that was the only way I could put the weight on.
 

I was very active, so the doctors wouldn’t have thought there was anything wrong with me.

Yes. And after the transplant, was there a difference because ,

Not really, I don’t think so. Well certainly before the first kidney I was doing everything. I was really quite fit. And then towards the end, say before the second kidney, I had to go on dialysis. And the dialysis made you feel pretty rotten because it was peritoneal dialysis. And I actually had to go into the hospital at the weekends and stay there for three days whilst they dialysed me through the abdomen, via the peritoneum, and it depressed you certainly.

Physically, I don’t think I was any worse, but I was really quite depressed with the fact that my mother’s kidney had completely failed. And I had to contemplate a life on dialysis. So I think it was more a mental thing, it wasn’t really a physical thing.
 

No, I was fine. I was fine. I didn’t have any problem at that time. I was fine. But I used to go to the clinic, I think every month or so, sometimes after a couple of months for them to collect my water. So that part was started, you taking your waters and they take the blood and they check the performance of the kidney. And they started deteriorating, coming down and down and down. But even then, even when it was 10%, sorry 13%, when he said you’ll have to go for dialysis, until then I was fine.

Really. So you didn’t have anything like tiredness or,

No, nothing. I was in fact actually very busy all the time.

Yes. So you were still quite active right up until,

That’s right.

Yeah.

Yes, stayed very active.