My medication regime has become more complicated as the years have gone by. When I left Harefield in March 1989 I was on Cyclosporin. This was the only drug I took for two years. Yes, just that. This was my immune-suppressant drugs. If you have a transplant you have to take these drugs for life.
- Yes, for life.
- No, your body doesn't adapt to the donor organs.
- Yes, my heart and lungs will always be foreign bodies that my immune system will try to obliterate.
- Yes, the drugs are horrific, but they are better than the alternative. Dying.
My Current Immune-Suppressant
This drug is called Prograf (alternatively Tacrolimus). I tend to call this Tac; I think a lot of us do! I take 1mg in the morning and 1mg in the evening. The tablet is about the size of a Tic-Tac. This is the drug that stops my system killing off my donor organs and I have to say, I was rather skeptical that something so small was the thing that stood between me and some sort of coronary apocalypse, but it seems to do its job.
The thing is (there's always a thing), I was advised not to eat for two hours before hand, and for an hour after taking it. If you take your tablet at 10 am/pm, then that means no food, no orange juice, no big glasses of milk, no coke; they are all too calorific. I get away with tea and coffee, with a dash of milk and no sugar. Oh yes, and no alcohol in these hours either.
Then there are the blood tests, which are done by 10am - usually. You can't take your medication before the blood test. If you take your tablet at 10am and 10pm, it really means you can never have an early night. I cheat. I take it at 6am and 6pm (and have adopted a complicated method of wiggling my medication round to the correct time, for blood tests when I dock in at Harefield). Unfortunately this 6am/6pm regime means I never have a lie in that is not interrupted.
Side effects of this drug are absolutely charming and for the sake of brevity, I have included only the ones with which I suffer on and off:
- Blurred vision
- Constipation
- Cataracts
- Chest Tightness
- Cough
- Depression
- Diarrhoea
- Distension of the stomach
- Falls
- Feeling full (stomach)
- Gastrointestinal problems
- Hair overgrowth
- Hair loss
- High cholesterol
- Itching
- Joint pain
- Loss of appetite
- Mental Health problems
- Mood changes
- Muscle cramps
- Oedema
- Over-sensitvity to light
- Temperature intolerance
- Thirst
- Tinnitus
- Unexplained bruising
- Weakness
- Weight gain
- Weight loss
A lot of transplants seem to be on two immune suppressant drugs at a time. I have only ever managed one at a time, because of horrific reactions. When I took Azathioprine (Imuran) I developed welts and I became Neutropenic. The Cyclosporin (Sandimunn and Neoral) wrecked my kidneys and Myfortic/MMF left me suicidal - not particularly clever, considering I fought so long to stay alive!
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