Well, at last I’ve created my blog. It’s been a while coming.
Whilst this post sits in the past (so it’s the first one you see) it was written on the 4th September 2014.
What do you need to know as a lead up to this? In 2002, or thereabouts I was hospitalised with what my GP thought was appendicitis. When I got better, they thought they’d better investigate. Despite the NHS’s best efforts, I disappeared off the map for a year. I popped back up after a medical for a new job. It showed significant proteinuria (protein in your urine, not a sign of good general health) and I was packed off to the local hospital post haste. One biopsy later, I was diagnosed with IgA Nephropathy.
Naturally, at 24, this came as a bit of a shock. Whilst they wouldn’t directly give me a timeline, when pushed hard, they estimated that because of the severity of my version of the disease, I had between 5 and 10 years before my kidneys failed. I dealt with it ok – after all, aside from high blood pressure, there were no symptoms. I lived my life as I would have done anyway, going back to hospital every 6 to 12 months for them to say “You’re fine, come back next year”.
4 years later and a new job took me from a sleepy market town on the South Coast, to the big city. I was lucky enough to be transferred to Hammersmith Hospital, which turned out to be one of the best Renal Hospitals in the world. They immediately stepped up my treatment, being much more aggressive than my old hospital. I thought I was trolling along just fine, when they told me that I was starting to decline faster. I went from annual visits to fortnightly visits as the put me on new drugs to try to stem the decline. This worked, and despite now being on a cocktail of drugs, I felt pretty good.
The slow decline got me in the end, and on the 6th December 2011, I was told that my kidney function had finally dropped low enough for me to be put on the transplant list. Based on my prior decline, I was warned that dialysis was likely in the next 6 months or so. At this time, I was feeling pretty dreadful. One of the key symptoms of renal failure is chronic tiredness, and my standard day was – Got to work, come home, go to sleep, rinse, repeat. Weekends was sleeping and playing video games. I could manage one evening out a week, if I was lucky
When I first told my parents I had kidney disease, the first thing my dad said was “you can have one of mine”. Now I didn’t take this seriously at the time, but the renal consultant was pretty definite that a live donation was the way forward. Turns out that I’m a rare blood type (B+) and also rare tissue groups to boot. The average time spent on the transplant list in the UK is 3 years, but can vary wildly depending on your compatibility. So I told my parents I needed a kidney, and both of them volunteered immediately. My sister did too, even though I deliberately didn’t mention it to her…
So this is where my story starts. Most of the stuff at the beginning is an account of the run up to my transplant.
Most of the stuff marked history is adapted from my thread on theKidney Patient Forum a place I heartily recommend you go if you’re a person with renal disease or a family member of the same. They did a great job of keeping me sane and grounded during some tough times.
The stuff after History is to chronicle my life after transplant. I really lived a half-life for 3 years or so pre-transplant. Some of it self-inflicted, some of it as a result of the symptoms of renal failure. Now that I’m over the initial obstacles of the first couple of years post-transplant, I’m looking to make the most of the second chance of life I have.
A common side-effect of my main anti-rejection drug (tacrolimus) is poor memory. Mine has never been good, but now it’s beyond awful. I’m really writing this blog to serve as a journal of all the places I go, people I meet and experiences I have, to serve as a reminder for when I forget.
Please be aware that I have included some pictures of me right after the transplant – if you don’t like wires, blood or needles, you may want to be careful opening them!