Transplant Story
May 2005
My name is Kristy and I am a 26 year old with CF. I am 5 months post double lung transplant, and here is a little bit about my experience.
I was diagnosed at 15 months of age with tummy problems, and had regular hospitalisations for chest infections (about 2 per year) until I was 24. Then things started to go downhill rather quickly. I was in hospital every 2 months, and each time I was admitted, I wasn’t expected to come home. My weight dropped to 40kg, my oxygen levels were in the 85% range, and I could barely walk or talk. I got kidney and adrenal gland problems, was diagnosed with diabetes and managed to give myself 4 hernias from all the coughing. Things just weren’t looking good, so it was suggested that I consider having a double lung transplant. At first I didn’t take too well to the idea. I didn’t think I was that sick. But then I realised I couldn’t keep going the way I was and my body wouldn’t keep going the way it was. So I resigned myself to the fact that I was sick and if I wanted to live, enjoy my new marriage and look forward to having a family, I would have to have the surgery.
I went and did the work-up, which is a series of very involved physical and psychological tests to ensure your body and mind will cope with it all. Then I went to St. Vincent’s Hospital and met the transplant team. This consists of doctors, nurses, dietitians, psychologists, social workers and, of course, the surgeons. Every aspect of the transplant was explained to my family and I, and a few more tests were done to double-check a few things. Then after this very tiring day, I was supposed to go back every 3 months so they could check to see if there were any new medications or problems. I didn’t make it to my first 3 month appointment. After 4 weeks I had my first call for transplant. It was 5pm on a weekday and I was at the vet with my dog when my mobile rang. It was such a shock I burst into tears and frightened the vet and his staff. I was half expecting a long wait because that’s what you hear: people wait for years for new organs. But this is not true for everyone.
Leaving the dog at the vet, my family and I raced to the hospital (lucky I live in Sydney) where I was to wait for 7 hours before I was taken to theatre. During that time, I had more tests done (bloods, x-ray, etc…) but the whole experience was quite surreal. It’s like a dream, not just for yourself but for your family too.
I was taken to the anaesthetic bay outside the theatre, and after saying tearful goodbyes to my family, the nurses began putting the cannulas in my arms and administering much anticipated sedation to calm me down. I drifted off to sleep only to be woken a short while later and told the surgery would not go ahead because the donor lungs had had an oedema (filled with fluid) on the plane from Adelaide and couldn’t be used. I would not have been able to take this news very well if I hadn’t been so sedated.So at 2am, I went home with my family. The day after was awful, we were all in a state of shock for what almost happened. I was still groggy from the medication they’d given me and just sat on the lounge all day. Eventually we recovered from the shock and went about our daily routine, until 14 months later (April this year) I received my second call, at 9pm. But this time I was on stand-by. I didn’t think I would get these organs, being second choice, and I was right. But I still had to go through the same routine as my first call-up, only this time I didn’t get all the way to theatre. I was told that they needed both the heart and lungs for a woman, but if the heart wasn’t any good, I would get the lungs. But as it turned out, they were all fine, she got the transplants and I went home again at 2am. I was just glad that someone got the organs this time. I wasn’t too upset.
Then, a week later, I got my third and final call, again at 9pm. I knew it would happen this time. I just had an omen. So in we all went again, and I did all the tests again, had my shower and shave and was then taken to theatre. This time as I drifted off to sleep from the sedation, I remember thinking, “Boy I’m gonna feel terrible when I wake up,” and I was right. I was operated on at 3am on the Wednesday and was taken to intensive care 7 ½ hours later. My family came to see me straight away, but I wasn’t awake until the next day. I awoke to all sorts of tubes coming out of all sorts of places. My time in intensive care is a bit hazy, I was only there for 2 days. But while I was there, the nurses got me up and had me sitting in a chair. That is a painful experience.
My lungs recovered well, no problems, but I had other hiccups. I became allergic to my anti-rejection medication and vomited for the first 6 weeks after the operation. This is a very hard and painful thing to do with a fresh cut from one side of your chest to the other. I was in a very bad way for a while, but then things got worse. I contracted a virus called CMV from my donor lungs. I had 40 degree temperatures, more vomiting and diarrhea. I couldn’t go 5 minutes without being sick. I went back to hospital (I had only been home a couple of days) and 2 weeks later I was over the CMV and the doctors had changed my anti-rejection medication. I was feeling the best I had felt since the transplant. It was also nice not to spend the day with my head in a bucket or toilet bowl.
I am really well now. I am 60kg (thinking about controlling what I eat for the first time in my life!), I can run up stairs, walk my dogs and go for long shopping trips. I’m also thinking about getting a job, which I’ve never had. My husband and I are planning a trip to Germany and Italy next year for a month, around the first anniversary of my transplant. It will be great to do sightseeing and be healthy enough to walk around. We will also consider having children in the next few years, also something we could never have done before the operation. It has just opened up a whole new world for both of us. We can’t wait to explore this new world together.
Transplant is definitely worth it, and I would do it again and again and again if I had to. Even at the worst of the sickness I experienced after, I knew it would get better and be better than before the surgery.
