A life changing kidney transplant
Last Thursday, I had a kidney transplant. My wife, the wonderful Alison Moore, donated one of her kidneys to me. Amongst other things, this means I can now say “One of my kidneys was shortlisted for the Booker prize” on my twitter bio.
I thought it might be worthwhile to explain in detail the effects of kidney failure and the impact of a transplant. Information makes dealing with and understanding a condition much easier. If you feel like it, please share around – it’s hopefully helpful to people in similar situations and they are abundant.
I was diagnosed with Polycystic Kidney Disease when I was 21. I inherited it from my father, and it has impacted our whole family significantly. It’s a progressive disease involving cysts on the kidneys which gradually grow and disrupt kidney function, ending in kidney failure which means dialysis, transplant or death.
Kidney function is measured by eGFR – estimated glomerular filtration rate. It can be roughly thought of as a percentage of normal kidney function. Mine gradually crept downward from normal to a low of 10 just before the transplant. The worst symptoms started to kick in below 20. People become active on the transplant list at 15, and dialysis/transplant is recommended anywhere below there, ideally 10 or above.
My disease progressed similarly to my dad’s, who died from related complications aged 59 in 2004 – which meant I got to the crunch point around 42. What having the disease has meant for me in the last 20 years is that I’ve had to go see a nephrologist (kidney doctor) every few months and have my blood monitored for kidney function, and have been prescribed a raft of blood pressure medication to keep it low. High blood pressure speeds the progress of the disease.
Those medications were largely fine, but the beta blocker puts a ceiling on how fast your heart will beat, which means exercise gets harder – it was the chief reason I was the slow one on the Paris ride. For the last 5 years other symptoms have been kicking in more. I find it hard to stand still for long as my enlarged kidneys press against my spine, and I am increasingly tired. For the last two years I’ve been going to bed between half eight and ten, and sleeping until eight. Still tired on waking, and often needing an hour’s nap in the afternoon. I stopped helping with housework and sat around in a rocking chair most of the evening while Ali did everything. It made me feel a little pathetic – I still carried on doing the cooking and shopping but definitely wasn’t pulling my weight around the house. Fortunately she’s a diamond and was grateful for what I did do rather than resentful about what I couldn’t.
Another thing is diet – you have to have a low potassium and phosphorus diet, which means all sorts of restrictions on fruits, vegetables, potatoes, milk, cheese – almost all nice things really. This makes eating a bit of a puzzle. I cheated when I could and tried to keep my blood results the right side of maximum, and mostly muddled through OK. But God, there were things I missed. Baked potatoes are the biggest thing – potassium is water soluble so any potassium rich food that isn’t soaked or boiled retains all its potassium. A big baked potato would be about 2.5 times my daily allowance. Too much potassium can lead to a heart attack, and too much phosphate can lead to your bones dissolving!
If you look at the comic strip I had my friend Terry Wiley make for the fundraising ride, you’ll see that the original plan was for my mum to donate her kidney to me. We’d known this was coming for 20 years. She was worked up and all was well, and then there was a two year delay because my function was declining pretty slowly. This may or may not have been connected to my good level of fitness, which was bolstered by all the cycling I did in preparation for the Paris ride. Her tests expired and had to be re-done last year, and as part of them they found she had lymphoma, which meant chemo and her being weakened, ruling her out as a donor. She seems OK now, the lymphoma has gone!
This left us wondering what to do – I had been on the transplant waiting list for about a year at this point, and we thought one might come up before too long. In October Ali offered to have herself tested – we had been saving her kidney just in case our son Arthur needed it (there’s a 50% chance he will inherit PKD, he’ll find out when he’s a young adult – he’s 8 now), but it seemed likely after discussions with my nephrologist that she’d be around 80 when/if he did, and it wouldn’t be much use. So we got her worked up, and luckily she was a match.
My condition took a steep downward turn around the middle of March – I was trying to work out where to go out for a walk and just sat there looking gormless for about an hour, unable to really think properly, and fully exhausted after a 12 hour sleep. Bouts of this became more regular, and we decided to schedule the transplant for April 20th, having been told that the healthier you are going into a transplant, the better the outcome is likely to be.
It’s quite an odd thing to approach for donor and recipient. The recipient is looking forward to a new lease of life, and at the same time nervous about the operation and feeling guilty about harming the donor. The donor is looking forward to the recipient being well, but dreading a traumatic operation which will do nothing good for their own body. Fortunately our marriage is very strong and we love each other very much, and it seems we were able to navigate this without exploding in a tangle of conflicting emotions.
We had to go into hospital the day before, partly for blood tests and partly to get a bed. We were on ward 17 of Leicester General Hospital, which is a smallish ward with three rooms off a corridor, separated into male and female rooms. My room had a lovely guy in it who had a cadaver transplant (of 2 kidneys!) 4 days before, and he was anxiously waiting for them to “wake up”. The blood was flowing through them, but the nephrons weren’t opening, which meant they weren’t yet doing their job. They should do but it can take weeks, and he’ll be in there until they do. He was still waiting when I left. This is a thing that’s not as common with live donor transplatation, making it the A grade treatment.
The hospital experience was wonderful – we had comfy electric beds which you could raise the back and feet of to sit up and adjust your posture and help you get out. The food was good and varied, there was a tea and biscuits lady, and the nursing staff were almost supernaturally good. Funny, dedicated, incredibly gentle and patient men and women who absolutely blew me away with the quality of their care.
The plan for the transplant day was for Ali to go down to surgery around 8.30am, and be back up by 12.30pm. Then I’d go down and be back around 4.30pm. As it happened there was a bizarre crisis in the hospital and all their water stopped working, so there was a delay of about two hours while that was sorted out. Ali went down to the op, and I became very nervous. Around noon I heard that the kidney was out and the operation had gone well and she was being sewn up. The relief was palpable. I went down around 2pm I think, and was somewhat nervous in the anaesthetist’s room, as I have always thought of a transplant as my first big roll of the dice, mortality wise. I have had a general anaesthetic before though, and I remember the complete oblivion and waking in the recovery room, so I wasn’t too bad.
I awoke full of drugs and relief, and the following hours are a bit of a blur because I was effectively off my face on a cocktail of opiates and other stuff. In the morning when I woke up I could tell my belly was sore, and I noticed I had a catheter in – about a 6mm wide tube down the penis into the bladder – and a drip in my arm. The purpose of this is to have fluid constantly flowing through the kidneys to keep them working, but to ensure the bladder doesn’t get too full and rupture the newly attached ureter which connects the transplanted kidney to your bladder. The old enlarged kidneys stay in, and the new kidney goes further down, near the top of the thigh.
I felt GREAT. A cloud had been lifted – my mind felt ridiculously sharp and I realised how tired and dull witted I had been feeling for years. Even though I was still groggy from the op I was so invigorated, it was obvious the new kidney was working and doing great things for me. I went through and saw Ali and she seemed OK too – battered by the operation obviously but not heart rendingly ill looking. Our son and Ali’s sister and brother came to visit us on the Friday and we both handled the visit fine, talking and being cheerful with them all. I’m glad they came on the Friday though!
The next day, the Saturday, I saw Ali again and she looked terrible. She was walking incredibly slowly and was awfully pale and sickly looking – I tried to talk to her and she couldn’t answer me, and had to crouch down in the corridor and I called one of the wonderful nurses. They got her onto a cool gadget like a sort of standing wheelchair and took her back to her bed. We had been told by the doctors that day two for the donor is the worst one, though they recover quickly – but still the state she was in made me feel incredibly guilty. I felt like a vampire – here I was more full of life than I had been for years, and I’d reduced the healthiest woman I know to this parlous state.
I kept popping over over the course of Saturday and was extremely happy to see she was visibly improving around lunchtime. My mum visited, but Ali was feeling too grotty to want to see anyone really, and in the evening my friend Andy Stafford, one of my companions on the Paris ride, came over to see me with his girlfriend (who I was meeting for the first time), and I was sufficiently garrulous and rude to entertain them both I think.
By the evening Ali was smiling and reading a book, rather than just lying down looking awful, which lifted my heart to see. The next day she had improved even more and was back to her usual chirpy self, although still very slow moving. Her blood test results were good, the other kidney had raised its output to compensate for the loss, and they let her go home. She was over the moon about that, as this has been the first time we’ve been away from our son. My mum was kind enough to give her a lift back, she has been a massive help throughout. Ali came into hospital on the Wednesday, had the operation on the Thursday, and was happy at home on Sunday afternoon.
Just as she was leaving, one of my best friends, Dave Slater, came to see me, and had the great idea of going outside. I popped on my dressing gown, asked the nurses if it was OK, and we went to the main cafe area and had a coffee in the beautiful sunshine. I was in very high spirits.
Ali and I kept in touch with frequent texts and each one made me happier as she could feel herself growing stronger all the time. That has continued and she is now able to do the school pickup, a walk of about half a mile. She’ll be back to normal in a month or two.
My own situation on the Saturday was that I still felt great, and was getting faster and more able to walk longer distances. I was starting to really hate the catheter though – whenever I moved it flexed inside the tip of my penis and I could tell it was bruising it. I also often felt like I had a painfully full bladder – I tried going to the toilet a few times and straining to wee, and it actually shot out of the sides of the catheter. I spoke to the nurses about it and they said it might be blocked, and they tried to get a doctor to come and flush it. That ended up taking four hours, which led to an uncomfortable experience to say the least. In the end they called in a registrar, who flushed it – this involved pushing some saline fluid up the tube with a big syringe, which filled my bladder even more, but cleared the blockage and then all the urine shot out into the bag. The relief was incredible.
It happened again in the morning but the doctors were around and they cleared it quickly. It worked fine after that, but became increasingly sore. It was eventually removed at six Monday morning (they told me the night before) and the removal was painless and so welcome I would happily see the nurse who did it beatified. The pain was much reduced, but I still have some sore bruising, which is reducing all the time – also on the plus side, it’s more agreeable for the other members of a cafe queue if one of them doesn’t have a big perspex box of bloody urine hanging off their dressing gown.
Here are my blood tests for the time before the transplant – reading up. eGFR is the headline column – 10s and 11s before, then 20, 30, 37 and 43. It’s still climbing – I’ll get another result today (Friday, 8 days post-op) [edit – it came in, 48]. Other notable figures are “Crea” which is creatinine, the higher it is the worse your kidneys are doing. K is potassium – anything above 5.3 is bad, anything below is fine. And CaPhos is phosphates, which were just about OK before and now if anything slightly too low (I’m on supplements now – this also means I get to drink lots of milk and eat cheese to help!)
On the Tuesday, they said I was well enough to come home. I horrified and amazed the nurses by briefly jogging around the ward and jumping from foot to foot to demonstrate how good I was feeling. One of the registrars saw me walking down the hall in a sprightly manner and noted “Now there’s someone who’s going home today”. I had recovered amazingly well – I think in large part to having remained as fit as I could before the operation, but also because I received a live donor kidney from an extremely healthy person.
My mum came and got me, and we went to Tesco on the way back so I could load up on things that I haven’t been able to eat for years. Real milk, coco pops, milkshakes, yoghurts, fruit and veg, and the makings of macaroni cheese. Eating the things that have been previously forbidden to me has been a massive source of pleasure, as has drinking tea and coffee with no restriction.
Once home, I found that Ali was still very slow moving, although she is visibly better day by day. The walk to school took 15 minutes on Tuesday, and by Thursday that was down to 8. She’s her old happy self mentally, and can feel herself getting better all the time. I, however, am transformed. No longer sitting around, I’m doing the dishwasher and cooking and cleaning up the kitchen, doing the hoovering, sorting the washing. All the things I’ve shirked for years. I was never entirely sure to what extent my laxity here was the disease and what was being a lazy 42 year old man. Thankfully it seems it was the disease, and it feels great to be of use again.
I’ve been sleeping normally too – previously I’d go to bed between half eight and ten, normally nearer the former, and read a few pages of a book and then be asleep until 8am. Now I go about ten, and read three or four chapter completely alertly, and I have been getting up around six bright as a button. I’m writing this on Friday morning, it’s now about 7am and I’ve had tea and coco pops.
I have to go to hospital three times a week for blood tests and clinic, to tweak the levels of my medication – usually downwards. I’m using hospital transport for the first time today, which seems great – you have to be ready 2hrs before your appointment, and they come pick you up, then you go to a holding area after your appointment and they filter you home. It sounds great, and is free. Normally I would drive but it’s about three weeks before I can do that, I think – the doctors have to OK it.
On Wednesday, two days ago, I noticed my left foot was getting sore – I thought it might be because I’d been lying down for a week and suddenly started exercising more, but in the middle of the night I woke up and it was throbbing like buggery. I got out of bed and rang the hospital 24 hour advice line, and they put me through to one of the nicest nurses on ward 17, who said it was probably best to ring at half eight when the doctors were in. I’d googled a bit and found some results mentioning Adaport, the main anti-rejection medication, sometimes causing foot pain, so thought it was likely to be a reaction to that. She told me to take some paracetamol, which helped, and I went back to bed. The next day a transplant patient I know on Twitter told me that he had the same thing, and it went away when Adaport was reduced. This made me feel a lot better.
I rang at half eight and they told me to come in, so I asked my mum to give me a lift in and she did. The doctor examined me and agreed it was likely to be Adaport, and reduce the dose a little. The pain is slightly reduced, but then so is the worry. My levels will have come down to the new dose baseline by my Monday appointment he says, at which point they may reduce it again. Another side effect is that I am slightly shaky and get a little out of breath, but it’s more than compensated for my the sharpness and vigour. I’m told that those two things are med symptoms as well, and will pass.
So – that’s where I am now. We are home and happy and I feel like a fully functioning human being again. My main take-homes from the whole experience is that kidney disease is debilitating, keeping fit when you are ill is massively helpful, and transplantation, when it works well, borders on the magical. I can’t express how grateful I am to live in a country with the NHS, and to have a wife as fantastic as mine who was willing to undergo this with me.
** Update, 5th May, 15 days after transplant **
My eGFR has climbed constantly – it’s now up to 62, which is amazing! I have had a fun week of eating all sorts of things I couldn’t eat much of before, like baked potatoes and brown bread, lots of cheese, chocolate and crisps. Marvellous!
One downside to this though is that when I came for a blood test on Wednesday, my blood glucose level was up to 11.3, which is crazy high – diabetic territory. Comically, that morning, I had had two fried eggs on marmite on toast, half a pack of extra strong mints, about 6 Moam Chews, a huge burrito and a whole bag of chocolate brazils. Mmmmmm-onstrous.
I’ve been eating more sensibly since then though, so I’ll see what my test result is today. I’m writing this in the hospital cafe waiting for my mum to pick me up (thanks mum!)
I saw the guy I mentioned in the post, who had two kidneys in and was waiting for them to wake up. Good news! They’ve woken up. His eGFR is up to 48 now and he’s feeling great. He’s still climbing too, and very happy.
Last night, I had a small bleed from my wound which freaked me out a bit (not lots of blood, just a dribble, but I didn’t want my insides falling out) – so I rang the hospital and they said to just put a dressing on it and come up to the ward in the morning. The doctor checked me out and explained that the suture (I had to ask what this was, just to be sure – the stitch) was a little under the flesh, so the bleed was just surface, above the suture, so nothing to worry about – it seems my insides are safe.
My heart was beating very fast for the last few days, like 100-115bpm at rest, which made me feel a bit like a hummingbird (and contributed to the hunger), so they’ve reintroduced my beta blockers – first at 25mg – a quarter what I was on before – which took it down to 80ish, and just now they’ve doubled it again to 50mg. That’s fine by me as I feel better as a result – I thought my heart was going to explode for a while there.
All in all they’re very happy with me, and I should be able to start cycling in a week! I am immensely looking forward to that.
** Update 6th may
Just got my blood results back from Friday – eGFR is stable at 62 – might have stopped climbing now. Eating less like a horse/pig combo brought my blood sugar down from scary 11.3 to perfectly normal 5.8. Yay!
** Update, 23rd October 2019
Two and a half years later! eGFR stable at 66. Became type 2 diabetic for a while but was easily controlled with a medication called Linagliptin (caused by a mixture of steroids, which I’m now off, and being too fat, which I’m now slightly-less-so). Took care of diet and exercised, and it’s gone away now. Never felt better in my life. Would highly recommend a kidney transplant if you need one 🙂
One other thing that happened is both Ali and I found out we were anemic after feeling more tired than we’d expect a few months after the transplant. Iron tablets sorted that, 200mg 3x a day at first now I’m down to 1x. Ali’s off proper ones and just uses an over the counter supplement.
So if you’re post transplant and feeling tired, get your iron checked!