Me and My Transplant by Trudi Baines-Hill
Hi I'm Trudy, a 47 yr old woman with CF transplanted with Heart & Lungs in 1991 when I was 31. As a child I was extremely lucky and health wise was very well. I did a lot of outdoor activities - I ran Cross Country (mostly it seemed in winter) for my school and county, played Hockey up to Schoolgirls International level - though I didn't actually get to play for the Welsh Team - but I got on the reserves bench !! I also did Tramplelening,..again up to school county level. I was also a member of the local pony club going to pony club games, cross country team events (at least this was not me having to do the running!) jumping and fun days - treasure hunts across country with obstacles to get over or thru - jumps, brooks and small rivers, gates etc
With hindsight all these events were my physio. I didn't get a definitive diagnosis of CF until I was 28, and very poorly, and eventually got to Heartlands at my GP's efforts. I was told in November 1989 I had CF, and was transplanted in July 1991. It was a huge learning curve of physio techniques, drugs, doing my own I'V's and having to deal with not being able to breathe...I lost a huge amount of lung function in the space of 6 months. It was like hitting a brick wall - literally. I used to drive myself to clinic from Mid Wales on a very regular basis, I kept my job although I was away more than I was there, but I could do work from home..so that was a bonus - and way before working from home became fashionable.
I walked into Papworth for my transplant, they couldn't believe it - no wheelchair no oxygen - it was only sheer bloody mindedness I guess as Dr Stableforth had tried to persuade me to go on oxygen and I kept saying no as I would become dependant on it .. the hardest part was having my 3 buddies die, 2 waiting for transplantation - Simon and Pete...and 1 just after his assessment for transplant - Terry. That did knock me sideways and I ended up having counseling (my GP got it sorted super quick) for Survivors Guilt which manifested itself in massive rages of anger and violence - though not may people know this !!!and I had been told that I had to keep working on my legs and general fitness so that I was well for transplant...as my time of waiting was so short I luckily managed to keep the muscle tone in my legs with the use of ankle weights. It paid off in the recovery time after my trannie in being able to get up and about...although it seems to run in CF genes that bloody-minded ness...determination that comes from who knows where and a massive amount of internal resources and an innate sense of optimism...propel you forward in a way "normal" people really cant fathom.
It hasn't all been plain n sailing - 9 years after my transplant I hit a brick wall....kidney failure and heart attacks from the super duper suppression drug Neoral - it was thought to be the best thing since sliced bread when I had my transplant - only it wasn't known then of its long term side-effect of destroying kidney tissue, and causing a funny type of cholesterol build up in the arteries...
I had my first heart attack in late October 1999, only problem was I didn't realise that I had actually had a heart attack , I only had a really really bad bout of heartburn !! . Then I was asked if I would consider trialling new superdrug ‘Rapamycin' as I was allergic to other immunosuppression drug..well I had nothing to loose !! I was the first female Heart & Lung tranni to go on this drug.. and boy did it have some side effects... Severe depletion of my platelets, acne covering my body !!! One day I was toddling off the to loo when one of the Dr's came running down the corridor shouting at me to stand still, and what was I doing walking about..my blood and platelets were so low he was amazed I was vertical let alone mobile !!!
The initial dose they had me on was 7mg a day....no wonder I had such terrible side effects, my dose is now 1 mg every 4th day - can you believe it - one consultant said I have a "whiff" of rap !!!! My claim to fame is on the information sheet that accompanies Rapamicyn/Sirolimus..."can deplete platelets"...
As for changing drugs...I have had to, on a few occasions due to side effects, its not as bad as you think its going to be, and they - being the specialists- don't take things like this lightly. Progress is made all the time, and new and better drugs become available. It is difficult to have to step outside your comfort zone, and change from regular known meds you've maybe had for years....but there is usually a very very good reason for the change....your consultant wont change it for change's sake.
Its hard work, routine, physio drugs food drugs physio - it's punishing - and to top it all you want a life outside all that...but doing all that gives you the wellness to get on with the things you want to do, and ultimately takes you towards transplantation with you hopefully, at your optimum, as well as possible, as fit as possible and with the head space to deal with a transplant. Not everyone can deal with a trannie after the event...which is really sad, as they don't get up and go, I think that I HAVE to get up and go, because some one, very, very generously donated their organs, I owe it to them and their family and relatives to make the most of that gift - which I have done J and been grateful all the way, I am on the Organ Donor Register. though it's very limited what they can have. so long as it's ok, my liver, corneas and skin. And somehow along the way I seem to have guinea pig'ed a few drugs for various Consultants....my attitude is someone has to go first coz someone went first for me....
Other things you're wondering ..- yes I work - part time now - as and when required, I'm very lucky on that one, I drive, I have a car and an XJ750 motorbike, which is my passion - I had my first motorbike at 17 - that was a lonnnggg time ago and it was a Honda CM200 Cruiser...since then I've had a few bikes ,assorted cars, a couple of horses, ran a couple of companies, worked for the government, was a presenter at a radio station where I was the weekend breakfast jock for 5 years. I still ride out occasionally on a friends horse, still do some freelance work for radio and somehow managed to get myself a substantial garden which needs maintaining ..doh !!! I also have a small business making handmade cards, with a couple of outlets ..so on the whole I don't have much down time .....infact I'm busier now than I was when I worked "full time"....something wrong there I'm sure ????
