Nick Lewis

February 09 2022

Transplant Diary

In the year 2002 I ended up in hospital for 3 days and it was a total shock. One minute I considered myself to be healthy and normal, the next I was on my way to hospital. What on earth was going on? I wasn’t even ill.

It all came about when I went to see my GP for a health check. Our family had all been as requested by our new GP who had joined the practice. I was busy at the time looking for a new job, as I had been made redundant a month or so before this particular time. I wasn’t unwell and didn’t see the need to take them up on their offer.

Reluctantly I booked an appointment and they booked me in for the last session of the day, just before 6pm. Ironically this “pointless” appointment in fact saved my life. Had I not gone, I would have, how can I put this… not been alive today.

I can remember that evening well. The GP took my blood pressure and was baffled by how high it was. He initially suspected the electronic BP monitor (also known as a sphygmomanometer) and tried a manual meter instead. Nope, same issue, sky high blood pressure. “Are you feeling ok Mr Lewis? Any health concerns, light headedness, anything at all?”, he asked. I was puzzled by the question and I must confess at the time blood pressure meant very little to me. I’d never had it checked before.

He hastily wrote a note, detailing his findings, popped it into an envelope and handed it to me. “You are going to need to go to hospital, here is a note with your details and my findings this evening, please hand this over to the duty nurse when you get there. I will let them know.” I asked if I could go the following day, sounds daft now but I had no idea how much danger I actually was in, which was reinforced by the GP when he replied, “You need to go now, go home and gather some clothes for the night, toiletries etc and get someone to take you”.

That was that - I ended up in hospital for 3 days whilst my blood pressure was stabilised but it begged the question. What was causing this problem? Was my heart the issue? Was I going to, you know, errm, die? Thankfully the staff at the hospital were great and put my mind aat rest, keeping me in the medical assessment ward until they were satisfied things were more under control. I was not going to peg it, it could be fixed!

6 years after those 3 days, I ended up having a transplant as it took a long time to get to the bottom of my hidden problem, the illness with no major symptoms.

I had a variety of tests over about 2-3 years, including chest x-rays, endiograms, MRI scan and biopsies. I saw a cardiologist initially who ruled out all possibility of my blood pressure being caused by any form of heart defect. So where next? There was just one possibility, high blood pressure can be triggered by kidneys, especially if there was evidence of a “protein leak” which was evident in a urine test. I was referred for further investigation.

I underwent more tests, this time with a renal focus, one of which was a biopsy, perhaps the most gruelling experience I’ve ever endured in my life. I will spare you the details but this test nailed it. I really had a serious problem, the biopsy revealed scarring of my kidney tissue, a condition known as Focal Segmental Glomerusclerosis or better known in medical circles as FSGS.

We then needed to plan ahead, my Creatinine (the protein I mentioned earlier) was climbing slowly upwards. Would I need to go on dialysis?

I had by this point in time come under the care of Dr Andrews, who remains my Nephrologist to this very day. A change of diet kept things under control for a number of years but in the end, my kidney function deterioated significantly almost overnight.

Dr Andrews recommended that a transplant would be the only option.

A lot happened but I am going to jump to the diaries I wrote in 2008… This is just an extract from them. I’ve not read them much since I wrote them, so this is the first time I’ve done that in all of these years. So starting with one long blog article with extracts from the diary. I may break it down better when I get time. If this is of interest to you, email me or follow me on Twitter, address on the site.

2nd September 2008 - A new lease of life

Preparing yourself for a major operation is a big task. Not just in the sense of making various arrangements with work, family, relatives, friends, doctors, hospitals; but also with oneself. The mental preparation is something that you just do, it ticks over in your head. I am now at the time of writing this blog entry only two weeks away from undergoing some pretty amazing surgery. A live kidney transplant, our surgeon will be taking a kidney from my Dad as the donor and transplanting it into me. This incredible young surgeon has performed somewhere near 200 of these operations over the past few years. Its routine, they have already mapped the two of us patients out, like a road atlas and already know where to go in, what to aim for and how best to go about doing it. Its mind bogglingly amazing. Its miraculous science. To think that in the year I was born (1972) none of this would have been thought of, people with kidney disease had to put up with dialysis machines or worse. Then came the very early transplants where organs were donated by cadaveric means, in other words the misfortune of someone’s death led to the regeneration of someone else’s life. I truly believe many more people should carry donor cards with them, after all in the event of your death, you don’t need your organs any more. So many more lives could be saved. This led to the pioneering surgical exploration that proved that a living, healthy person could donate a kidney to somebody who was in dire need of a new one. Since then many more transplants are carried out every year, I have learnt that a staggering number of people in this country do have similar problems to me in varying degrees of severity. Why am I writing about something that’s perhaps quite personal? Why not? I hope that my scribings will be of interest to other people who are going through a similar experience and to raise awareness of what has been coined “The Silent Killer”. Kidney disease can of course be fatal, the same as any other organ failure. The problem is there are precious few warning signs. I for one didn’t wake up one morning feeling ill and in fact I still don’t feel ill now. That is because in many ways I am one of the lucky people, my condition was diagnosed early when I had my blood pressure checked during a random check-up. I had various tests including an MRI scan, chest x-rays, blood tests, urine tests and a biopsy pinpointed what they suspected. I have a condition called FSGS or to use its full name - Focal Segmental Glomeru Schlerosis (hope I spelt that right Doc!). This in simple terms means that I have a lot of scarring around my kidney tissue, the stuff that makes up the organ as a whole. This has a detrimental effect on their ability to filter blood and as a result, protein levels etc rise. Medication can for a period of time control this along with a controlled diet. So for a few years I have kept myself as lean and as fit as possible. I have made some sacrifices such as giving up some foods I love, cutting out beer and other alcoholic drinks (although I still drink wines sometimes). Weight is critical as the surgeon can quite literally postpone plans if neither patient is in a fit state to operate on. In the future, once this is all over, I shall return to writing about photography and other such things and very soon I will have 6-8 weeks off at home to recover. Which means plenty of time to write!

9th September 2008 - Blogging like mad!

Well I have been steaming along a bit on the blog recently and today’s post is going to be a briefer one. My thoughts are now focussed more on the task that lies ahead in the very near future. That is to go to hospital with my Dad, both of us will go into theatre (thankfully out for the count), Mr Surgeon does his stuff, we come around and then its down to us to get better with a little help from the medical people! Sounds quite easy when put in this perspective and hopefully it will be. I do feel nervous though but I do know and trust that the surgical team will do a fantastic job. Got to keep positive! My Dad said to me, “All we have to do is turn up and they will take care of the rest”. Indeed that is pretty much it really, we are simply passengers on an incredible ride. It will be quite strange having Dad there alongside me for the duration, what am I putting him through?! Can’t think like that though, got to just accept that this is the way its done, there is no other option other than dialysis. So far I have managed to avoid that and fingers crossed could keep it that way. My Dad and I have done our own preparation for this in our minds and we have received help and advice from various people. I must say that the whole process has been flawless and the NHS cannot be faulted at all. Our transplant nurse is an amazing, hard working woman and my Mum has become convinced she does some of the operations too! My Consultant has been open and honest, at times downright blunt too as its all too easy to become bliase about the condition I have. I don’t feel ill, therefore i can eat, drink or do what the hell I like. Wrong! I have to be careful and I have made sure that I have along the way. Thanks also to my Wife, family and friends who have all been positive about it, even joking about it from time to time, after all humour is often a very good tonic at difficult times. I would have lost the plot by now, if it wasn’t for them. Did I say today’s post was going to be brief? Well in that case I shall leave it there for now. More later…

7th October 2008 - Brief update

Now at the hospital bloods done and need to wait for results . So chilling out as much as I can in the hospital cafe. Croissant and tea! I will be twittering for most of the day and you can view there little updates on the right hand side of the blog homepage, facebook, friendfeed, plaxo or twitter itself! I an very well syndicated! It also helps kill the time as boredom is worse than any pain in my mind.

7th October 2008 - Going ok

Well I am blogging from a hospital bed and need to remain flat on my back until about 1830 which is about as exciting as watching day time telly. I am feeling ok and the earlier pain has gone. Imagine being kicked hard in the stomach by a donkey and you get the idea.

8th October 2008 - Biopsy - What is it exactly?

Now it’s over and done with, I can write about it without too much psychological trauma! Now if you are squeamish, hate readng about surgical procedures, you may best be advised to read no further than this paragraph. Well done you are still with me! I had my biopsy done at about 12pm yesterday. They inserted a Cannula into one of the veins of my left hand, in order to administer an IV drip of fluid. I believe the fluid was a blood thinning agent of some sort to help relax the blood as it passes through the kidney or something like that. Then they moved my bed to an adjoining private room to begin the procedure. I had to lie flat and straight on the bed throughout the surgical process, incidentally I had to sign a consent form beforehand and they do outline the risks involved which are unlikely to happen (and they didn’t in my case). I was attended to by a team of two, one consultant and a senior nurse whom I have got to know pretty well over the past month. The consultant didn’t waste any time and he got down to business very quickly, swabbing some cold antiseptic gel over the area upon which he was about to work on, my lower belly basically. Then he uses an ultrasound scanner which has more of the gel on its sensor to analyse the area of my abdomen and the transplanted kidney that lies beneath it. My transplant is on the right hand side, lower abdomen, just next to my stomach in a cavity where there is some space and where they can easily “plumb” it into my bladder. Having taken a good look at the kidney, he commented on how good it was looking and that it is working away very evidently. Now comes the yucky bit! They use local anesthetic to numb an area of the skin, then press the needle down further so that it penetrates through to the kidney and apply another dose of the treatment there too. This does briefly sting like a wasp’s sting but isn’t too bad. The numbness is sharp and profound though and my whole belly felt as if it was paralysed, quite a weird sensation. The consultant uses the ultrasound to find his way. Next up, he gets out a tool that looks something like you would buy from a DIY store (sort of). The device is part needle, part, errrr, “grabber” I guess is the only way I can really describe it! He then used this to got through the hole he had made in my belly, to reach for the surface of the kidney and “CLUNK”, he has a little piece of my kidney which goes into a little pot! I could hear gasps of admiration for my kidney sample from the nurse, “Wow that’s a really beautiful piece of kidney!”, she exlaimed. “How could it look nice?”, I ask in a very restrained way (it hurts to talk when your belly is very numb and there is a hole in it!). They repeated this twice more! Finally after a little bit of cleaning up around the puncture wound he had made in me! They applied some pressure to stem the bleeding, dressed it and then placed a saline pack on top to apply weight to the area and that was that. I was then wheeled back to the ward and remained flat on my back for the next 6 hours! The pain was quite accute for awhile, it felt as if I had been punched in the stomach by a hard nutter whom I had foolishly picked a fight with in a Pub brawl. However an hour later this started to ease off and I was feeling a lot more comfortable. I kept myself amused with my brace of gadgets (Ipod, phone with mobile internet) and tucked into Richard Hammonds book “As you do…” which I am really enjoying, you should get it! The result in the end was very good and I went home at the end of the day. Today I will get to find out a little more when I see a Doctor who will debrief me on everything. My Tacrolimus medication has been dropped to 5mg twice a day, as they feel this is probably too strong for me. More later…

11th September 2008 - Not long to go…

All being well we shall be off to Italy a year from today! So Italy is very much on my mind tonight as I write this. Anyway, in the meantime… Not much to report today other than the countdown till next Wednesday is rapidly ticking by. Last day of work tomorrow for the best part of two months. Its going to be odd and I am sure I will get bored at some point. Fotrtunately I have got various things in to combat this - Some new books, computer games and a few other things to do to keep me amused plus various outpatients trips after I come out of my initial stay in hospital.

12th September 2008 - Taking a break, see you in a few weeks time

I am going to be taking a break from everything for awhile, as next week I am going to be spending some time in hospital for a major operation and then after that, time to recover. So this is going to be my last post for the foreseeable future. I plan to be back later in the month. In the meantime, take care and thanks for all of your support.

20th October 2008 - Creatinine, some more good news

Brief update to today’s diary - My Creatinine has dropped 2 more “points” from 177 to 175. Brilliant! However my phosphate level has dropped!!!! Remember the other day, I referred to this course of treatment as being akin to “medical jenga”, I am now beginning to think how apt that was!

22nd October 2008 - It’s Wednesday

Today should be fine and it’s now 5 weeks since “T day” and my word time has flown by. I already know that my creatinine is down to 175, so today should just be a case of having my blood test done etc and I will learn more on Friday. Shall report on how it all goes later from the hospital. Have a good day! I also hope to fit another walk in later.

23rd October 2008 - Giving something back

I am planning to do something adventurous next year (or maybe 2010). The reason for this is to do some fundraising for SHAK and Kidney Research both of which are charities I hold very close to my heart. It is of course possible to donate money at any time through your own free will. I shall add some links to the footer of this post with details of how you may contact these charities and making donations. I want to become heavily involved in their activities, simply because they have done a monumental amount for me and so many other people, some of whom have been through a far greater ordeal than I have. Its quite staggering to hear stories about people whose kidneys have totally failed, have become entirely dependent upon Dialysis treatment and are still waiting for a matching kidney to become available. I was one of the luckiest people alive, as my story so far has been a relatively straightforward one by comparison to so many others. SHAK supports St Helier Hospital, its Renal unit and patients who go there. Its chaired by David Spensley, who is himself a donor and I shall be writing more about their activities in the future. Anyway what do I have in mind for fundraising? I am going to be deliberately vague for the moment by not giving away too much, as it would be foolish to brag about elaborate plans to climb Everest or that I would love to abseil down the North face of the Eiger. Neither of which are on my list of ideas anyway!!! The ideas I have will involve walking, hiking or cycling some long distance (and well known) routes in the UK or abroad. Heck over the years I may do various things, as I love a little adventure and I am more than happy to challenge myself… In aid of charity of course! If you have any ideas, please post them here on this blog post, please don’t do it via the feed in Facebook, please post them here, so they are all kept together and hopefully trigger off a little discussion.

24th October 2008 - Back to school!

Or Work if you prefer! The plan is fr me to go back on the 11th November all being well. I am still waiting to cut back from 3 days per week to 2. If that happens next week, I will be going in on Monday and Friday leaving me with 3 days mid week spare. I will beseeing Dr Andrews today who will confirm what the plans are for the next week and when I can start going bak to work. I am just slightly concerned about the fact that my Creatinine hasn’t come down as fast as it would normally for people. Rumour has it I may need to do a further 3 day week which may put the schedule back slightly. Lets wait and see. More later!

24th October 2008 - 158!

Breaking News: 158? What could this be about you ask? Let me explain! Dr Andrews has just rung me, literally jut about 10 minutes ago to let me know blood test results are back from this morning. My Creatinine is down from 187 to 158 which is one hell of a drop and also fantastic news, it means that my Kidney has really started to kick in. If you were to plot these figures out on a graph, it would show a clear improvement in kidney function, slow at first, almost rejected but now we have passed that jittery phase and now there are signs, positive signs of great improvement. If this trend carries on next week - No biopsy will be required. Also sorting out my phosphate levels now, as these have dropped dramatically. Pre-transplant they were dangerously high but now it has gone the other way and too far! This does mean that the kidney is doing a stirling job at controlling them but now I will need to take some Phosphate supplements for awhile, which actually taste quite nice, they dissolve in water and they have a good flavour. Have a good weekend, think I have scheduled some posts for the next few days, going to lave the blog on autopilot for awhile, as I am going to go and have some fun!!! Fieworks tomorrow night, may try taking some photos, maybe…

24th October 2008 - Friday

Christ just had an emotional moment thinking about my Dad and what a heroic thing he has done for me recently! I have this thought frequently by the way and normally whilst waiting for my lift to the hospital as my brain warms up for the day and works out its itinerary for the day ahead. Outside its a wet Novembery day even though November is a few days away. I want to hibernate today and not venture outside. Must get some new winter clothes such as a big coat and wellies. I have been feeling the cold recently or am I getting old before my time? Dare I say it, I feel christmassy at the moment! I am bloody looking forward to it this year and I am determined to make it a goodun! I am generally feeling very good but now itching to - drive, return to normal, do some hardcore photography, get away from it all for awhile. It does take it out of you, the constant trips to hospital and occasionally I feel like I am becoming institutionalised. I am of course mega grateful for everything they have done so forgive me if you may interpret that last sentence as a whinge as it wasn’t. My wife is starting to feel the strain I think, if only I could whisk her away on holiday right now. I can’t though as I am tied at the moment. So yes it can be bloody frustrating. Blood pressure is a little high today. Must give my left arm a break from blood tests next week, it is suffering a bit. Good thing I have a right arm as some people don’t! Weight is surprising me as my appetite is fierce, if I don’t eat every 5 minutes, I fear death as an imminent possibility! Anyway today I am 75 kilos but I have been having plenty of number twos. Doctor, is that normal? Christ I now need the toilet! Phlebotemists have a great sense of humour. The other day they were talking about kids Tv characters from years back and reminiscing away to their hearts content! I was only moderately concerned that as the nurse inserted the needle into my already blitzed vein, she was impersonating a “Clanger”! Question: why are hospital scales “pessimistic”? The ones at home are “optimistic”! The outcome today is: Creatinine is still misbehaving as it dropped to 178 then 175, the best to date and then the last one leapt to 187. Another biopsy may be needed. However next week I am only coming in on Monday and Friday. Which is brilliant and a step forwards. Still got a long way to go but sod it the weekend is nearly here.

28th October 2008 - A brave young man

I have just been reading in the paper about a brave young man of 15 years who has this year received his second transplant. Even more incredible is the fact that both transplants were donated by both of his parents, his first at around 7 years of age from his Mum and recently his Dad. You can read more about his story at - http://qblue55.blogspot.com/

31st October 2008 - Friday

Next week shall be making my own way in here and will have a yellow ticket for blood tests. Well creatinine has bounced up again 20 places to 178. Not ideal and worries me. Tacro levels are fine so on changes needed on that front. Blood pressure is high and now going to add another pill to my collection. Protein levels creeping up. I pray to god this doesnt mean that the FSGS is back and she did ponder over this. I am more than a little panicky right now as you can imagine. Lets also see what blood tests are like today! When will this end? Does it end? Have I become a slave to medical science?