Maybe this blog post should have been titled "Here we go again"? If you know me personally, be it as a friend or colleague, you will no doubt be aware that I am a transplant patient.
The backstory
The story begins way back in 2001 when I discovered that I had very high blood pressure and was admitted to hospital. I spent a few days there under medication, observation and despite feeling like I shouldn't have been in the medical assessment unit, I felt fine, I didn't feel sick, rather slightly disturbed that something somewhere was indeed dangerously wrong. I was discharged at the end of that week but then attended a series of checkups with other specialists, my blood pressure was causing them more concern than it was I. I felt fit and healthy, ok maybe a bit tired at times.... fast forward to post transplant in 2008, I felt waaaaaay better in a way I couldn't quite believe, I'll tell you about that later.
The first thing they wanted to check was the condition of my heart and found nothing wrong there. I had a variety of tests to check, various scans, 24 hour blood pressure monitoring, echo cardiograms, you name it. The tests all failed to reach a conclusion. My blood pressure was still high even after being on medication by this point for a number of months. It was no longer dangerously high but still above what it should be by a long shot.
The Cardiologist then referred me back to the GP with a note to say that he was happy my heart was in tip-top shape but worried there might be something else playing up, would it be worth investigating my renal function because they had spotted one thing, small traces of blood in my urine, it may be nothing but it could just as much be a clue as to what was going on.
I had many more tests over a period of a few years, went on a diet, revised my blood pressure medication with the guidance of the GP and in the end a biopsy revealed the answer to the problems. I had (and may even still have to this very day) a condition called Focal Segmental Glomerischlerosis (FSGS) which amazingly I can still pronounce after a few drinks (in modderation). It is a chronic, very serious thing to have because it causes scarring of the kidney tissue, the cells, the Glomeri break down, become less efficient and gradually maybe in some cases rapidly, the kidney starts to falter and if left untreated, can be fatal. Luckily for me this was diagnosed in good time. I would never have known had I not visited the Doctor for a routine checkup in 2001, I strongly suspect that I would have suddenly died at some point between 2001 and a few years ago, if not more.
No longer did I feel so flippant about my high blood pressure, though you can just have high BP of course, it is often the effect of another condition, a red flag that thankfully our NHS are very good at spotting if you give them the opportunity to do so.
I then started a renal diet, which would eliminate potassium, phospates, sodium and some other elements from my daily intake. I lost a drastic amount of weight in the process, I had to in order to proceed with the operation and strangely, it was very easy to do. The medical team were with me every step of the way and we needed to source a donor, which after various people being tested, perhaps 3 or 4, my Dad donated me one of his.
The prospect of dialysis was never far away but Dr Andrews, our Nephrologist was adamant that we could bypass the need to put me through two operations, two courses of treatment and keep me fairly fit for the transplant.
On September the 17th 2008, my Dad and I underwent surgery in adjacent theatres at St George's Hospital, Tooting. The operation went on for around 8 hours, as there were some complications along the way. However all went well of course. Dad was discharged within 5 days and I was just after 1 week in hospital. Dad took 1 month off I think and has a tiny scar, thanks to keyhole surgery. I had to to take 3 months off of work and spent a lot of time going in and out of hospital in the initial weeks.
2024, 17 years later - why I need a second transplant
Every 3 months I see Dr Andrews the Renal Consultant and have a blood test around two weeks prior. Everything has been find for many years with no real concern to discuss but the last two appointments, we have discussed the slow decline of the kidney function via a measurement called EGFr (Estimated Glomerular filtration rate). In healthy patients this value will be 100 or near that end of the scale, for people like myself it has been good but the concern is it's now down to a lower level. How long can it keep plodding on for? There are ways of calculating this or having a good guess. The important thing is to raise the alarm early enough, which is what has happened in my case.
We are looking at another year and that can only be approximate, so the next step is to, find another donor.
Finding a donor, dialysis or there is no "or"
I avoided dialysis previously, it is a question I am often asked by other transplant patients when we used to meet for social events, compare battle stories and indeed scars! They would ask how long I was on dialysis for and the reason is, most people do need it for awhile, especially if the kidney function is shot to bits, for want for better words. It is a case of do or yes, you've got it, die. Kidney disease needs more publicity as it causes more deaths than breast or prostate cancer in the UK according to the NKF (National Kidney Foundation) which is a staggering fact. So I avoided dialysis last time because time was on our side. So many people are taken ill, discover the cause as kidney failure and are put on emergency dialysis, which totally turns their lives upside down but is a necessity. I've met some people who've faced this situation and it must have been terrifying but they are the lucky ones, as they pull through, are lucky enough to find a donor and live normal lives.
I'll never coerce anyone in to stepping forward as a donor for myself nor anyone else. When my Dad donated his all of those years ago, he was just turning 67 and had just retired. He underwent tissue typing tests, known as "cross matching" where they take bloods from myself and the donor, merge them together in the lab to fully test for compatibility.
So there you have it. I am doing ok, we are scared but remaining resolute here in the Lewis household that it will all come together.
Have to stay positive, there is no "or" as I said above, I am only 51 and want to live into old age.
Earlier in the post I said I felt way better after the transplant and didn't explain why. We always say, "I am feeling fine thanks", when people ask and pre-transplant I honestly believed that to be the case. It wasn't until after I recovered and was back to normal that I realised, I definitely wasn't, because what felt alright to me was the result of a long period of deteriotation in health, that I ddn't feel unwell because I didn't feel drastically worse at any point. It's not until afterwards, the difference was noticeable. So many people say this who've been through the same course of treatment and surgery. It was quite the revelation.