Since literally ummm, 5 of you have asked for an update of what’s going on inside me, I thought I’d better do a half year update of what’s happened since I got my kidney transplant in October 2013. I’ve noticed people still visit this blog, and if you’re not following me on social media, you’ve probably thought ‘that brave, brave bastard has pegged it’. Referring back to an often used phrase of mine – only the good die young, and I’m still here!
My last update was on Xmas Eve last year, and it has been a slightly rocky road since then. I’ve had a couple of serious cases of rejection, and a few viruses, one of which is extremely rare. I’ve deliberately not gone on-and-on about it, just because I don’t want to be that guy who keeps on belly-aching about my ailments. I’d also feel disingenuous complaining about something that has completely changed my life. But, problems create more problems. At the end of the day, when people think you’re ‘fixed’, I don’t want to correct them.
The combination of rejection and virus means that my transplant hasn’t been as successful as the surgeons would hope for. It also means that the transplant in all likelihood won’t last as long as it should do. Not quite the happy ending heh! The bouts of rejection resulted in me being hospitalised a few times unexpectedly, for biopsies (regular readers will know how much fun they are!) and ultrasounds. Sometimes, I’d be admitted into a ward, where I’d have to have regular blood tests and monitor all fluid inputs and outputs. I got flushed with enough steroids to make Hulk Hogan blush, and put on nearly two stone in a 72 hour period a couple of times. That hasn’t happened for a while now though.
The viruses are an altogether more complex matter. After a transplant, you’re given medication to run down your immune system to the point that it doesn’t fall out with the foreign body in your body. This makes you more susceptible to all manner of other beasties. One that I had was the BK virus, which is really rare. It only occurs in kidney transplant patients, and effects only a handful worldwide every year. It’s not economically viable for the drug companies to develop a treatment for it, because it would cost at least (and this is no exaggeration!) £500,000+ for a single dose. Instead, what the quacks do is reduce your immune system suppressors, so hopefully your own body can fight them of. This of course means that your defences will also target the new kidney too. Which increases the likelihood of rejection.
Every appointment at transplant clinic involves blood tests (which now have to be taken from my hands, as they want good veins in the arm if ever I have to have haemo dialysis!) and various changes in doses and frequencies of medications to try and strike a healthy balance.
Unfortunately, around the same time I was admitted to hospital for rejection related issues, my beautiful Nanna (the accompanying photo is the last picture we took together at Christmas – I’d said to her “pull a mean face”, and she did!) also got pretty sick with infections of her own. Ultimately, these would end her life on the 13th March 2014. As she was infectious, and I was/am on immuno suppressors, I wasn’t able to be there for her very much. This is something that I’m not entirely sure I’ll every truly come to terms with. It’s real circle of life shit. Would it have been worth risking getting sick myself to make her less fearful of her own situation? Would the physical sickness be easier to deal with than the mental anguish and guilt this is causing me? As my Mum would say, “it’s one of them ain’t it?!” before looking off into the middle-distance. I think she thinks this makes her appear to be a deep-thinker, whereas I think it makes her appear confused.
Since we’re throwing ice-cold water onto a fat fire right now, and everything is kinda maudlin, I’ll end on this cheery note. As a consequence of running down your immune system, you are pretty much guaranteed to contract skin cancer. It’s not a case of if, it’s when. Being a blue-eyed honky has certainly opened a number of doors for me over the years, especially the ‘At Serious Risk’ entry-level door for skin cancer. So these days, if you see me about and I’m slightly glossy and smell a little bit funny, don’t worry, it’s just the Factor 50 sunblock that I have to wear if ever it’s a bit bright out. But you’re unlikely to see me out, as I’ll be darting around the shadows like a portly Victorian villain!
As always, no subject is taboo, so if you have a question or comment, please ‘ask’ above^^
So, I’ll start with the nice stuff first, before getting all dark and evil. Call me the festive vibe killer failure fans.
Happily, I appear to have all but defeated the BK virus that could well have caused to some serious problems, if the hospital hadn’t spotted it in good time. I had levels of about 975 when it was first seen, but now I’m down to about 35, which is a massive relief. As you will have noted from my last update, if I hadn’t got rid of that, there was a very real chance of losing the ‘new kid’.
However, as a preventative measure, because the toxicity levels in my blood have taken quite an abrupt turn for the worse in the past few weeks, it was decided that I’d have a biopsy, to try and find out what’s going on inside me.
A kidney biopsy on a transplanted one works thusly - first they numb the area with a local anaesthetic, then make a little slice in your guts. Now the fun part - a long (about 6”), thin, hollow needle is shot into you super quickly, to break off a bit of the kidney for scientific examination. This time they took two pieces, as it is very moreish.
Now, I’ve had a biopsy or two before, so I know the procedure fairly well. After they’ve stabbed you up, you have to lie perfectly still, and completely flat for six hours. Why? Because they’ve perforated an internal organ, the weight of your other bits and pieces could cause the hole they’ve made to widen, causing a nasty bout of massive internal bleeding. I’ve chosen to playfully illustrate this with the squashed doughnut imagery.
I’ve been caught on the hop by these previously, so I figured I’d beat the system this time around by sleep depriving myself for a couple of days, so after they’d finished needling me, I’d use this time to get caught up on some much needed sleep. But I got it all wrong. As an in-patient, you get a standard issue hospital bed to play with, which I actually quite like. Whereas, as an out-patient, they put me on a 4ft 6” child’s bed for the procedure. I’m 6ft 2” tall, so my feet were practically touching the floor. I was also marginally too wide for the bed, so had to have my arms crossed over my chest to be comfortable. One of the conditions before they allow you up, is that you go a piddle for them. Have you ever tried to piss into a jug whilst lying flat? If you happen to have a spare 10 minutes, and the rubber sheets are already on the bed, try it! Thankfully there was no blood in my urine (but plenty of urine on the sheets as it turns out!), and they let me go just a few hours later than I was supposed to be freed.
The findings were a bit of a shame though…
By the looks of it, the connecting pipes between the ‘new kid’ and my bladder are all badly swollen. This could be caused by the BK virus, but as previously mentioned that’s all but gone from my system, so instead it looks like the early stages of rejection.
The hospital, to their credit, immediately actioned an attack plan. I’m being flushed through with a series of drips laced with industrial strength levels of steroids. About 20x my normal daily dose. This should halt the swelling from getting any worse, and allow my body to correct these problems itself. That’s the idea anyway.
Christmas has actually proved to be a hindrance to this treatment though. I had to go in today (Xmas Eve) and I also have to be at the hospital for 8am on Boxing Day. The upside is, I should still be able to keep up with all my seasonal commitments with a minimum of fuss, and it should hopefully do the job and correct the problems I’m currently facing.
The downside is, the way I react to steroids is two-fold - I’ve got a dose of backne so bad, it’d make a 90’s pro-wrestler blush. And also, with my ‘meagre’ amount currently, my hair is growing at an alarming rate. So just imagine what it’ll be like after a few jolts of the mega dose?!
Put it this way, from a shaven head today, when I finally get back to work in a few weeks, I’ll probably look like Meatloaf circa Bat Out Of Hell. If that doesn’t put you off your mince pies… Then ‘thanks’.
I’d just like to say I really appreciate all the support I’ve got from everyone during this ‘big’ year, and also to each and every reader of this as well. You’ve made an old, miserable, and now hairy ogre of a man marginally less misanthropic.
…And there I was thinking my latest missive was going to be some overly sentimental piece about saying goodbye to my dialysis machine and my stomach catheter (that I used to connect to the machine at night).
Instead, it has come to light that I am currently experiencing a rare virus associated with kidney transplantation that may result in my body rejecting my new kidney.
It’s called the BK virus, and only effects 1-100 kidney transplant recipients. The virus itself is present in around 80% of people, but only becomes harmful to people who have had a kidney transplant. It becomes activated by the complex array of anti-rejection drugs that people like me have to take.
As it is also such happening, no drugs have ever been made to combat it. Sadface.
In a nutshell, anti-rejection drugs run down my immune system, so it won’t go against our new friend. Where my immune system is shot to hell right now, this BK virus has seen an opportunity to become radicalised and attack the new kidney.
So, the plan of attack is to lower the amount of immune system medication I’m on, so my body can try and vanquish this bastard of a virus.
The next stage will be to increase the amount of steroids I’m on, which will not only make my mane even more shiny, but also try to isolate the virus and stop it from spreading.
Either way, I’m pretty sure I’ll be having another biopsy, which is when a long needle is inserted into my stomach, and then I have to lie flat for 6 hours, to minimise the chance of internal bleeding. This should ascertain how much of the kidney has been ‘got’ by the BK.
Basically, I have a month to try and return peace and harmony to Planet Ives.
Believe it or not, I’m not worried yet. I’ve been through worse, and I’m sure I’m yet to face worse. So I say ‘come at me bro’!
If you we aren’t ‘friends’ on social media, and are just a casual observer, you probably thought I’d pegged it. It’s true what they say -‘only the good die young’ - and I’m still here.
Been discharged from hospital for a little over two weeks now (3 1/2 weeks post transplant). Being at home has been tremendous, under the care of loved ones, and with a little furry nurse to tend to my every whim. Physically, I feel stronger every day, and at time of writing, I’d say I’m a solid 65%.
I have to visit the renal unit every other day, as they’re closely monitoring me, as apparently the scope for rejection is especially high in the early stages of transplant. So far, there has been a couple of times where they’ve been worried about my progress. The toxicity of my blood is dropping, but there have been a couple of time where it has faltered and in some cases actually increased, rather than decline steadily like it should. I’m not sure if I’m supposed to be concerned about this, but when the doctor’s say it’s easily treatable, I believe them. Just call me Mr Gullible.
My stomach is staple free, and only aches a little bit. People that have seen ‘it’ say it looks like a shark bite. That’ll probably be the tall tale I employ if ever I go to a topless beach.
Last week, I was a guest speaker at a seminar at the hospital for people who are about to start undergoing dialysis. I was slightly daunted when they told me my allotted time was 25 minutes, and that I can “do what I want” - so I did just that. I told them a little bit about myself and my condition, then opened up the floor to a 15 minute long, unflinching Q&A session. I told them that I’m happy to answer anything, no matter how silly or trivial they think it might sound, as I’m not one of the establishment, I’m ‘one of them’. That seemed to go over well, and the time was fully occupied with lively debate. Only one old chap fell asleep while I was talking. 1/20 ain’t bad. One question threw me - a lady asked “How do you feel morally/spiritually knowing you have a dead person’s organ inside you?” - what do you say to that? I said ‘I’m just concentrating on getting better for now. I’ll start being philosophical in time I’m sure…’ - it was strange to be around these people, as they knew what was about to happen to them, so they had a bit of time to ruminate and make plans for their care accordingly. In my case, I had a 48 hour window to decide my treatment. I actually think it worked out well for me, as I had to be sure and decisive. The look of fear that most of them had was more than a little unsettling. I take for granted how turbo hard/tough I am sometimes.
Probably be a good time to mention, if you have any questions, happy to answer them, using the tab in the header above.
There has also been a lot of firsts - I had a beer for the first time in 20 months last week. Had a pint of Red Stripe and a cigar with my lady. It was weird drinking with her for the very first time. It might take some getting used to. The ‘magic moment’ is saved for posterity in an earlier post.
One of the things that is expected amongst medical professionals among post transplant patients is rapid weight gain, due to people being allowed to eat normally again. Not me I’m afraid. I’m actually losing weight. Whilst most people choose to gorge on chocolates and what not, my dishes of choice were things like fresh vegetables, and granary bread. It feels so good to be eating ‘healthy’ again.
Having said that, I did make a spectacle of myself the other night. As long-time readers will know, my ‘endgame’ if you will, was a curry at my local curryhouse and a pint. Well that finally happened. And I cleared the table. I just couldn’t stop eating! I had a chicken tikka vindaloo, mushroom rice, garlic naan, tarka daal, spinach bhaji, cauliflower bhaji, mushroom bhaji and Bombay potatoes. I just couldn’t face the prospect of leaving anything. I was in genuine fear of my stomach splitting open. It didn’t. And I don’t intend to debase myself like that again, but I do feel I achieved closure.
Of course, now that I have pocketed the pot of gold at the end of the rainbow, where do I go from here? I think my next lot of dispatches from the frontline will be about the mental effects of having a kidney transplant, rather than being weighed-down with the physical aspects.
As a writer, it’s nice to know that people actually pay attention to your prose, but also it can be the noose that hangs you. So let me acknowledge the elephant in the room first and confirm that I have successfully excreted.
Moving swiftly on, Thursday was supposed to be biopsy day - basically I get stabbed by a needle and see what happens. But my blood pressure was so high, that it couldn’t take place. Which created a bit of a conundrum for the team. They decided to let me home for the evening with a strict midnight curfew. So I sat on a sofa, cuddled a pussy cat, cuddled my girlfriend, eat some pasta, drank some tea and enjoyed carpetted floor for few hours. It was bliss.
So here we are on Friday morning, and I’m currently wired up to a drip to lower my blood pressure. Too much and it’ll stop my heart - what are you doing with your day? I feel like a shit James Bond.
The reason why I’m having to have a biopsy is because my xenophobic body is showing early signs of rejecting my new kidney. I’ll break it down to brass tacks for you all - and I do love an analogy.
My new kidney is a young Asian family that has recently moved into Ives street. When they first moved in, they ingratiated themselves to the neighbours by cooking samosas for everyone, and the residents liked that. But, probably my heart (we’re all secretly even a tiny bit racist at heart), starts whinging about their pets and the smell when they’re cooking dinner, and the mood of the whole street has turned against them. They’re just trying to get on with things and not cause offence, but at the minute there’s some friction. So - Mr Biopsy, the community support officer is popping in this afternoon to find out what the problem is, before reporting back to the bosses what can be done to make everyone friends again. It’ll probably just need a street party of sorts, induced by the addition of some drugs into the mix, to bring harmony and balance back to my ‘hood.
So yeah, I’m not making friends with my new addition as well as I should, so I’ll probably be kept in for another few days. Still, it’s not a race. Those idyllic few hours at home opened my eyes to what the possibilities of being healthy again can be, and I don’t want to rush it. Heaven can wait.
The time is a little after 2am on 10/10/13 - I am currently sat in the corridor of my renal ward, and I’m not sure if I’ll be going back to bed tonight.
Let’s rewind a few hours, a day even, and let’s tease out where everything went wrong.
At 6am, the early morning blood collections take place. I actually woke up at 5.30 today, so I figured I’d wait up, do my bloods, and then have a nap before breakfast. Except I was the only person in our room of four whose blood they didn’t want… Strange…
Remember the guy who kept on throwing himself out of bed in the HDU? He’s been moved to my ward - and he’s crazy as a shithouse rat. There’s an old incontinent man in the same room, and the amateur stuntman is convinced that the NHS food people are trying to poison us. They offer him a cheese sandwich for lunch, which he says would interfere with his dialysis, as cheese is high in phosphates, which is fair enough. Though I’m pretty sure you’re also not supposed to be downing cans of Relentless on the sly either.
On the doctor walkaround, I’m told unless something exceptional happens with my pending blood test, I’ll be going home, and I dutifully pack my belongings and await the word. The quack, keen to get me out, even walks the samples up to the laboratory, so as not to keep me waiting unduly.
And then I wait for about 5 hours, and am told I’m not going home after all. This surprised the nursing team too, who had prepared all the requisite paperwork and very many medications that I’ll need to take.for the remainder of my days.
Apparently my blood showed a tiny falter in my kidney function, it had gone from 650 to 658. To contextualise, when I was at the height of my illness, I was regularly rocking 1200+. They say it’s better to be safe than sorry, and one extra night won’t hurt. I’d disagree. Also looking likely that I’ll face a biopsy tomorrow. This involves a long, hollow tube being pushed into my new kidney, to see if it’s working properly.
Our mate has decided to launch an official complaint to management, claiming the food has given him the trots. He fails to provide a sample, but as a precaution, in case he’s infectious, he’s moved to his own room with ensuite bathroom facilities, and our room’s bathroom is now out of bounds pending a deep clean in the morning. So, I’ll have to pee in a bottle next to my bed.
Not the end of the world, but the first time I attempt to do this, three young Asian women wander into my closed off cubicle and explain they are student nurses and would like to examine me. Then some saxophone music had started to be piped in, and they started examining each other’s mouths. It really was the makings of a low-rent blue movie.
Having tasted the dinner, I realised matey boy might have a point, but all the decent rooms had already been allocated, and in theory I’ll be on my own for the night, so I won’t have to go through too much rigmarole to piddle and go back to sleep.
Except around 11pm, holy hell is unleashed. All the empty beds are rapidly filled with proper ‘end of the world’ groaners. One chap complains of stomach ailments, loudly begging anyone that’ll listen the he “needs” morphine. Hot on his heels is a lad with learning difficulties whose blood sugar levels are through the roof. He’s been making a sound akin to someone having vigorous sex with an Alsatian dog. He’s doing both sets of noises, which is helpful. And finally there’s some meek looking chap that doesn’t make as much noise as the other two, but he loves a good tut and “oh dear” every few seconds.
The dayroom is closed as there is nowhere for the nursing staff to have a break, so they’ve taken it over.
So the only place left for me to go to try and get a bit of peace is a chair in the corridor, My ice-cool demeanour is finally starting to be tested. ARGH!
So after running on adrenaline and fumes for a good few days, I finally crashed on Monday. And it sucked.
As part of my ongoing treatment, the consultants experiment with immuno-suppressor medications, as they need to find the right ‘biting’ point. They need my body to not try to reject my new kidney friend, but they don’t want to collapse my central immune system. Well, for most of Monday I couldn’t actually move. I just needed sleep. And lots of it! Imagine contracting a really sudden and violent flu - yeah that.
Unfortunately, it’s put my recovery back a bit, as it’s now looking unlikely that they’ll be letting me out Wednesday, as I’ve not show the requisite level of improvement yet to show the new one is fully functioning. Instead, I might have to have a biopsy on Thursday. Basically a biopsy is a long, thin, hollow needle that they’re gonna stick in me to see what’s up. I’ve had one before, and it left me bed bound for 6 hours.
Which makes the developments of Tuesday all a bit of a shame- All the tubes are now out, and I’m wearing tracksuit bottoms. Surely that’s gotta be worth something at least?
Third full day of recovery now, and I’m starting to feel more human all the time.
I’m wearing my own clothes for the first time, so feel comfortable going for a mince around the ward, without being conscious of my bum hanging out or being faced by my shrivelled cock and balls. It’s amazing what a boost it can give you. I’ve just cleaned my teeth and used mouthwash! Feel like at least £25!
The headline is inspired by the fact I still haven’t evacuated my bowels since the op. I feel proper skanky, but it’s not something you can force. Well, having said that, if I’ve not made mud by tomorrow, then I’ll probably be getting an enema. Lucky me.
I’m off the HDU now, and in a standard ward, which feels ace. And last night I set up the laptop to watch Cage Warriors. If anything, it was even better than home, just because I still have a catheter fitted, so I don’t even have to move to pee.
I’m having more tubes removed every day. The ‘drain’ next to the new kidney is now gone, as is the catheter to directly administer pain relief. All I’ve got left is the old dialysis tube, a big one stuck to my jugular still, and a tube up my penis. The end is in sight - neck one comes out on Monday, winkie catheter on Tuesday, and not to jinx anything, but I should be allowed home on Wednesday.
The aim of the game for now is to be as mobile as possible, so I’m patrolling around like a cowboy with a sporran full of pee around the ward, and trying to drink *all* the waters. Currently, my output looks like a fruity rosé, which is an improvement from the burgundy, but not quite the pinot grigio we’d like. Kinda like when you’re cooking a chicken, when my juices run clear, I’m good to go.
Thanks everyone for your texts, messages and well wishes. I feel kinda under siege - there are literally hundreds of ‘em - trying to reply to as many as possible, but it’s a bit full on, so bear with me!