Series: Life on the waiting listIndex Life on the waiting list: part one
James Hipwell is waiting to find a donor for his second kidney transplant. In the first of a fortnightly column, he describes the vast quantity of medication he takes every day just to stay alive
I want this column to do a number of things: to describe what life is like for thousands of people on the waiting list for an organ transplant; to lobby for a change to our system of organ donation to one of "presumed consent"; and to encourage people to join the UK organ donor register.
As I wrote in the Observer on Sunday, I had a kidney transplant in 2002 after my brother donated one of his to me. Unfortunately, the autoimmune disease that wiped out my kidney function in the first place - IgA nephropathy - has returned. It means I now have virtually no kidney function and very soon I'll need to start some form of dialysis to survive.
So, in the next few days I will be going into hospital to have a tube placed in my abdomen. Then I will be given a dialysis machine that I can store in my bedroom at home that will pump fluid in through the tube to clear out the toxins in my blood. Hopefully this should keep me going until I can have another kidney transplant.
Something people are always surprised about is the number and quantity of drugs that organ transplant patients must take every day.
My flat is strewn with medication and whenever I travel, I have to take a big bag of drugs with me. It can surprise the odd airport security official when the X-ray machine reveals so many different boxes, eye drops, syringes and blister packs going through the scan.
Pill popping has become a daily ritual. This morning I kicked off by taking two immunosuppressant drugs called tacrolimus and mycophenolate mofetil. These are the most important drugs I take as they stop my immune system from rejecting my brother's kidney.
I also took a steroid called prednisolone, which also helps with the immunsuppression. I'm only on a small dose now, but just after the transplant I was on a very high dose, and I noticed wild mood swings: finding myself manic, excitable and upbeat one minute, and in total despair the next.
As those with kidney failure are subject to massive fluctuations in their blood pressure (BP), I added a beta blocker called atenolol and an ACE inhibitor called ramipril. I am on the maximum dose of each and without them my BP would be out of control, like it was when I first got ill. Back then, my blood pressure was 200/150. The doctor who first took it thought the machine was broken and did it again. "There's something very wrong with you," he said. "You need to go to hospital now." He was right - I didn't come out for three weeks.
Transplant patients are also vulnerable to swollen ankles and fluid retention, so I take a diuretic called furusemide to deal with this problem.
Poor kidney function can also lead to a high buildup of uric acid in the blood plasma. This is a less funny way of saying you get gout. I know that any mention of gout usually brings out a snigger - surely nobody has had gout in this country since Henry VIII, people say. Too much swan, wild boar and port, old boy, my friends would jest when I revealed I have this condition.
But I know all you secret gout sufferers out there are with me when I tell you the pain is excruciating. When I was struck down with it, the pain was so bad I actually wanted to cut my left foot off. After every meal I take something called allopurinol that keeps this agonising condition at bay.
I also have a severe vitamin D deficiency, so every other day I take alfacalcidol, which increases the amount of vitamin D, calcium and phosphate in my body.
On Mondays I inject into my thigh a pre-filled syringe of aranesp, or "epo", which helps my body to produce red blood cells. This is something my kidney would do if it worked properly. As it doesn't, I am prone to anaemia. It means I feel permanently exhausted - I can sleep for 12 hours a night and still feel shattered the next day.
Having no immune system creates its own problems too. I have had shingles for four months and without an immune system, my body can't fight off the virus. After making my head swell up so that it looked like I had gone three rounds with Mike Tyson, and covering my face in pus-filled blisters, it then found its way in to the cornea of my right eye, leaving me temporarily (I hope) blinded in that eye. I have been taking steroid eye-drops to treat this and an antiviral drug called valacyclovir, but it still hasn't cleared up.
Shingles wreaks a path of devastation through the nerve cells, leaving you in agonising pain for months. So now I am also taking something called gabapentin to relieve the intense pain.
They tell me at the Royal Free, my hospital in Hampstead, north London, that the virus probably won't go away until I stop taking the immunosuppressant drugs. I can't stop taking these until I start dialysis. So every cloud has a silver lining.
Finally, just before I go to bed I take more immunosuppressants, as well as a statin to deal with my elevated cholesterol level.
So all in, I take around 15 forms of medication a day. This costs the NHS roughly £6,000 a year.
It costs around £17,500 a year for a patient on peritoneal dialysis (the dialysis you can do at home), and £35,000 for someone on haemodialysis in hospital. Three-quarters of those on dialysis are on haemodialysis.
Over a period of 10 years, performing a transplant rather than treating someone on dialysis saves the NHS almost £250,000.
Next week my wife, Rachel, will be going to the hospital for her first blood test to see if she can be a donor for me. As readers of my piece in the Observer on Sunday will know, I am not entirely comfortable with this prospect, so I am not too sure in my mind yet which outcome I am hoping for.
If you would like to join the Organ Donation Register you can do so here: organdonation.nhs.uk.
• James will be writing fortnightly about life as a patient on the waiting list for an organ transplant