A life changing kidney transplant

Ali and me, up a mountain.
Ali and me, up a mountain.

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.

Phosphorus-Foods

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!

High Potassium Foods

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.

me day after
I was able to eat breakfast with gusto the morning after.

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!

Me on the Saturday, pulling silly face.
Me on the Saturday, pulling silly face.

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.

dave
Me and lovely Dave – OUTSIDE!

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!)

bloods

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.

demented
Me, with previously forbidden milkshake, looking absolutely demented, with my lovely mum.

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.

me and ali
Me and Ali, home and happy.

 

** 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.

Me, cafe!

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!

Comments: 65

  1. Fantastic story great to hear all is well and your wife is recovering. I still find it amazing how much I am able to do since having my transplant almost 25 years ago! Like yourself in found the LGH transplant team and nursing staff amazing and care is 5 star.
    Good luck for the future and stay strong, live life to the full. ?

    • Dan says:

      Awesome – 25 years. I hope to match you!

  2. Adam Rodgers says:

    Nice read and so glad you guys and gals are doing well.

  3. Kathryn Abraham says:

    What an amazing read, I really enjoyed reading your story and it all rang so true for me. I too had a living donor transplant at LGH from my Dad nearly 4 years ago and the staff are amazing! I still go back now every 3 months for my check ups (as I didn’t want to return to my local hospital). I’m so glad that everything has gone well 🙂

    • Dan says:

      Lovely – it’s great to hear about other people’s experiences too. I really hadn’t realised how different life after transplantation was – my dad had two, but both cadaver transplants and he was more ill going into them than I was, having been on dialysis for years.

  4. Sally Parsons says:

    Super…it’s excellent you did this.. will help others going through similar things. You must feel very proud of Ali and what a wonderful world we live in that these transplants can happen so successfully! All the best x

  5. George says:

    A fantastic read – thanks for sharing this story, so glad you are both doing well. Especially pleasing to read about your returned energy.

  6. Alison Hargreaves says:

    Dan and Ali – really so happy to read this story!
    Much love, Alison

  7. So pleased to read of the good outcome from the operation. I have PKD and have regrettably passed it to our daughter who is
    now at stage 16 and in need of live donor if possible. My husband who is 85 offered but his kidneys were not in a good state and
    he has been rejected. A friend, who is 80, has also offered but she has not had any tests for suitability. It was heartening to
    read of the positive reaction in your case and we wish you and your kind wife a speedy recoverery.

    • Dan says:

      I worry about having passed it to our son too. Glad to hear no guilt in your words though, it’s just life and we have to deal with it. I always took the view that I’m way happier to be alive and with this disease than never having existed at all. I enjoy life!

      I hope you find someone, or one pops up on the list. There seems to be an issue with cadaver transplants not waking up properly and so delaying a bit, but the results are still pretty good, so there’s hope either way! Love to your daughter.

  8. Steve Aldwinckle says:

    Dan, I’m so happy for all of you, keep on keeping on man.

  9. Julia says:

    Thank you so much for sharing your story, I’m current at GFR 21 so not quite at the dialysis/transplant stage yet but just reading your story has taken some of the terror out of the ‘unknown’ for me.
    I wish you both a speedy recovery xx

    • Dan says:

      Excellent, I was hoping to help people in precisely that way. If it helps any further, I cycled to paris at GFR 13/14 and didn’t die! Keeping fit at the point you are at and after seems to be an excellent way of slowing progression. Not foolproof but fitter is always better when it comes to the endgame, whether dialysis or transplant, and if it takes you longer to get there as a result, all the better! Best of luck. Feel free to ask me if you ever have any questions.

      • Julia says:

        I wish I had half your energy Dan, not sure how much of that I can put down to the PKD or whether it’s just because I’m a lazy mare! x

        • Dan says:

          Electric bikes are good – I got one of those last year (expensive but I got one on interest free credit) – you get some exercise but they take the hell out of the hills.

  10. Sharon says:

    A wonderful story enjoy life and much love to both of you x

  11. alan davies says:

    loving that your both fit and well, ive been living with only 1 kidney now for 4 years and havent missed it at all!

    wish you both the best and see you soon!

    alan

  12. Hello Daniel and Ali it was so heartwarming to read your story as I have been with your mum through her treatment as she is my very best friend. I was amazed by how quickly you have both recovered and you both continue to build in strengh your story has been an inspiration to many people love you guys. Veronica.xxxxxx

    • Dan says:

      Hah, thanks Ronnie! I know you of course 🙂

  13. Nancy says:

    Wonderful story,I feel hope,thank you for sharing. God bless you both.

  14. Emma says:

    What a truly positive account of what you are dealing with. Tremendously written. Superb! Good luck for the future. It shows we all need to embrace life and live it the max.

  15. Wendy says:

    Thank you. I got diagnosed with IGA Nephropathy in December and have been told my kidneys will fail at some point in my lifetime and I’ll need a transplant so this was really informative and helpful as to what I may face in the future. At the moment my kidney function is 42 so hopefully I’ll have plenty of time before I get to the stage you were. But still good to know apart from the dietary limitations ?. Thanks again for sharing and best wishes to you both for the future

    • Dan says:

      Hi Wendy! Yes it’s an odd low key sort of stress knowing it’s coming at some point in the future isn’t it. I think I had about 15 years in my descent from 42 to transplant, if that helps. Everyone is different though. My best advice is to keep as fit as you can (I did a lot of work with the Kidney Care Appeal’s exercise unit, and will be doing more this year) – it helps slow the progress of the degradation, and keeps you generally healthier and happier too. And enjoy your life and try not to obsess on the disease!

    • Dave Epstein says:

      Hi, I too got diagnosed with IGA about 5 years ago (aged 51). I have been extremely fortunate, like Dan, that my partner (Diane) was brave & strong enough to donate her kidney to me, even though she has 2 young girls. We had the operation in October 2016. Initially Diane was in lots of pain (which made me feel terribly guilty). Thankfully the pain faded after a few weeks. It’s now 7 months since our operation & we both feel absolutely fine. I personally feel the best I’ve felt for years,& it’s all thanks to Diane (& the fantastic staff at Manchester Royal Infirmary). Good luck to you in the future & have total faith in your renal unit. They’re bloody fantastic

      • Dan says:

        Hah! Great to hear Dave. I think we are on the same road, as long as I don’t mess it all up by eating too much 🙂 Good luck for the future!

  16. Audrey says:

    I hope you both continue to improve and are soon back to normal. My liver transplant was 13 years ago. I didn’t know my donor and can never hug her and thank her personally. You can, and that’s awesome!

    • Dan says:

      Glad to hear you’re still doing well! Thanks for the kind words.

  17. Sara douty says:

    Dan, I am quite overwhelmed with emotion by your story. You have such an extraordinary family. I am thrilled to hear that you are feeling so much better. Wishing Ali a speedy recovery and hoping your mum is back on the road to wellfordshire.
    All the best to you all. X

  18. mark gedney says:

    Great story Dan, glad it seems to have worked out. My wife has PKD, so we have this to deal with in the future. I’d love to be able to help as your wife has, fingers crossed. We have a daughter 14 years old who we hope skips the disease. My wife was asked yesterday ‘when the babys due?’ She answered with her usual wit ‘It’s my kidney-baby’ but joking aside it has ground her self-confidence down over the last few years.
    All the best for your future.

    Mark

    • Dan says:

      I’m lucky there in that I am slightly fat as well so it is not so noticeable. Straightforward humour like that is probably the best way of dealing with it. Any sensible human should realise that asking women if they are pregnant is risky territory though! Good luck to you in the future. And keep fit!

  19. Megha Jariwala says:

    Congratulations both of you.
    Be brave ,be positive.
    I am also a kidney donar since 27 years.
    I donated my kidney to my husband now he is 57 and I am 52 years old.

    • Dan says:

      Wow – well done to you both! I love hearing stories of long lasting transplants, and happy marriages!

  20. Dee says:

    I loved reading your story! Made me emotional as it hits home… not for me but for my 1 year old son who has PUV and CKD stage 5. Not in the kidney transplant stage yet but your story gives me hope. What a wonderful wife you have! Wishing nothing but health and happiness.

    • Dan says:

      Oh wow – I can only imagine how stressful that is. All I can really offer there is confidence that if he does get a transplant the effect is fantastic. Wishing you both all the best in return!

  21. Graham says:

    I really enjoyed this read and had some very similar experiences, now 3 years post transplant in June. I was very lucky to receive mine from my ex girlfriend (my daughter’s mum) so I know what it means to be grateful. Oh, we’re still good friends, I didn’t just take it ))))) Good luck to you and yours and thank you for sharing this.

    • Dan says:

      Glad you enjoyed it Graham. Thanks. Hope things carry on going well for you for decades to come!

  22. Lyndon says:

    Hi dan. Great story and glad to hear you’re doing well. I too have pkd and had to have a nephrectomy earlier on this year which put me onto dialysis. I’ve also got a wonderful wife who’s giving me a kidney. Referals are in and we are waiting for our date . Can’t wait to get in and get off that bloody dialysis machine. Hope your recovery continues to go well.

    • Dan says:

      Excellent news Lyndon! Should you want to ask me anything at any point feel free to either comment here or mail me at Pedallingtoparis@gmail.com!

  23. Karen says:

    Such a lovely story and so happy that you are doing well
    My mum had her transplant 22 years ago and my brother
    7 weeks ago I’m currently waiting for my second it only
    lasted 4 months but hoping the next is good so currently
    dialysing I hope you have a very healthy happy future

    • Dan says:

      Hi – wow – 22 years. That gives you hope doesn’t it! Glad to hear about your brother too, and very sorry to hear about yours. Hope one comes up for you soon. I’m doing fine I think – my heart rate was too high for a few days (like 115bpm at rest!) and I was put back on 25mg of beta blocker (1/4 of what I was on before the TX) which seems to have sorted that out. I caused myself a bit of a high blood sugar situation by eating too much junk in my celebratory days coming back from hospital, and am having to eat a bit more wisely now to get it back down. Thanks for getting in touch!

  24. Verena bullion says:

    Awesome for sharing. ..I donated altruistically in march 2014…I hope the recipient is doing as well as you! I had complications afterwards for a while but best thing I ever done xx wishing you and your family good health c

    • Dan says:

      Oh wow – you people are almost unimaginably cool. That really is the most amazing thing to have done. I can confirm that you will have made the recipient happy beyond all measure. I feel completely reborn after mine, and that’s even tied to the guilty feeling of having put my wife through it! I can’t thank you enough for what you’ve done for someone there. You’re a hero.

  25. Linda says:

    My husband received a Live Kidney last July from an altruistic donor. As you so rightly say – it is miraculous! We have met the donor – a very lively man of 77 years (my husband is 74). We keep in touch – when we can get hold of Ian – he’s always out and about at line dancing or football! We can never say THANK YOU enough.

    • Dan says:

      Awesome. It’s humbling isn’t it!

  26. Dave Epstein says:

    Hi Dan, your story is very similar to mine. My girlfriend donated her kidney to me in October last year & I too felt extremely guilty when I saw her in pain. Thankfully, all the pain has long gone & we’re both doing really well. Good luck to you both & take care

    • Dan says:

      It’s horrible isn’t it, until they start perking up! Fortunately my wife is sprightly now. Comically, after me being the fast one and her slow, she’s up to full speed and I’ve been told to slow down as I was walking so much I was making the stent rub and bleed! Good luck to you both!

      • Dan says:

        Can I ask where you found the link? My logs have exploded in the last couple of hours and I suspect some big facebook page has added my link – but I’ve no way of finding which it is!

  27. Alison Roberts says:

    OMG your story is almost a carbon copy of my husband and I. We had our operation on May 8th 2014 at Leicester too although we were both 45 and I am pleased to say we both are healthy and enjoying life. I am also an Ali – must be something in the name? Hope you both continue to make good progress xx

    • Dan says:

      Hah – I’m 42 and she’s 46, so we’re very close aren’t we. Ali’s rock! Yay.

  28. Jamie says:

    Great story Dan. Really well summed up. I had my transplant 3 years ago from my dad. I had a chuckle at the cheating on potassium where possible and keeping it the right side of maximum! My killer was chocolate and any sort of tomato based pasta!!

    • Dan says:

      Haha – I hear you there Jamie. I am by heart a very greedy man, so it was torture for me! As soon as I got out of hospital I commenced stuffing my fat face with all sorts of previously forbidden things. Too much in fact – on wednedsay I popped into the office and someone had bought sweets for me, so I had loads of Moams and loads of mints, and a huge burrito for lunch, followed by a whole bag of chocolate brazils. I then had my blood test and my glucose level was 11.3, which is diabetic territory 🙂 I’ll have to explain tomorrow that they shouldn’t worry, and I had just eaten a barrel load of stupid stuff. I’ve been eating more sensibly since then!

  29. Thank you for sharing your story, and describing exactly how CKD affects not only your life but your family’s too. I am 48, and was diagnosed with F.s.g.s and CKD just over 5 yrs ago. The last 2 years has been really tough and my egfr is roundabout 16, so I am stage 4, almost 5. I am currently on the suspended transplant list until it hits the trigger point. It is a very uncertain and scary time, and how you described how you felt before your transplant is how I am feeling now. My husband was tested but not a match, however he is thinking of doing the paired scheme…again very scary when you have a young family. It is great to hear stories like yours and know someone understands exactly what you are going tjrough, Thanks once again and wish you continued good health!

    • Dan says:

      Hi Paula! Yes, I can sympathise with all that. It’s a very odd time isn’t it, trying to work out what is CKD symptoms, what is getting old etc. I *think* – although I’m a sample of one so there’s no definitive proof – that I managed to slow down my final stages by being as fit as possible – I think it took me about 3 years to get down from 16 to 10. There is a fairly good body of evidence growing that fitness is really beneficial to CKD patients – and even if it didn’t really help with the progress of the disease, it can help keep your energy levels and endorphins up, which all helps to make you happier. So, do what exercise you can, to keep yourself going, an improve the outcomes of your transplant when one does come in!

      If you find it really hard to exercise, one thing I found invaluable in the last 8 months has been an electric-assist bike. I bought a Raleigh Motus, which has been fantastic (the thing cost £2k, which I really didn’t have, but they had an interest free credit thing over 2yrs for £80 ish a month – I was very glad I did it). With that I’ve had all the joy of cycling, without the crippling inability to get up hills due to my CKD weakness!

      Good luck with the list / a donor!

  30. So great to hear you got your kidney!! My mums been waiting two years with two phonecalls on the transplant list which both turned out to be unusable kidneys so reading your story injects a bit of hope into what sometimes seems an endlessly frustrating wait! Keep healthy 🙂

    • Dan says:

      Thanks! I had one of those too. Frustrating! And them you think the next one will come soon and there is no guarantee! Still – when it comes I am hopefully evidence that there can be a pot of gold at the end of that rainbow. Good luck to you both!

  31. Scott Green says:

    So pleased your both feeling well, And massive respect to your wife, my wife and I could tell a near identical story as she
    gave me one of her kidneys on 8/12/16. Your right it is a magical thing…fingers crossed for a long and happy future.
    Regards
    Scott

  32. Pauline Barrett says:

    Hi Dan so pleased all is going well for you and Ali. Your Mum has kept me in the loop (it seems now forever) so I have watched your progress with great interest and hers too. I loved your blog and it was interesting to hear the ins and outs of it all. No doubt Jenny and I will be talking very soon. So do I take it it that the next goal is another fundraising bike ride? If so count me in (not the ride unfortunately but you mum can explain why!!) Look forward to updates. Best wishes to you. Pauline Barrett

  33. Lindsey says:

    Great story, and wishing you both well. In answer to your question, your story is featured on the NHS Organ Donation Facebook feed!

    • Dan says:

      Ta! And thanks – I found it in the end!

  34. Carolyn says:

    Excellent read Dan and so glad to hear that you are doing so well. I am 9 weeks post transplant from my brother and reading this actually brought tears to my eyes as I remembered all the same feelings that I experienced as I went through the process with him. Good luck with everything and hope you soon get back on your bike.

    • Dan says:

      Thanks Carolyn! Thursday hopefully for the bike! I can’t wait. I hope you continue to be well!

  35. Louise says:

    I’m another who picked up your blog link from the NHS organ donation feed, and I’m so happy I did… this is genuinely the most jolly/honest/detailed account of PKD I’ve read (and I’ve been on some reading mission!). I’m stage 1 (age 35) with a strong family history, though it was only in pregnancy my own underlying symptoms revealed themselves. I do have wobbles about the future and wondering how close my PKD journey will be to my mum’s (who passed away at 65) but I can’t regret the utter joy that my 5 year old daughter brings daily. Thank you… and please keep posting… I’m loving following your stats progress x

    • Dan says:

      Hi Louise! Thanks, I’m glad it was useful to you! Hopefully you’ve a few decades to go before you need to worry too much about all this stuff. In the meantime, enjoy your life, stay healthy, do plenty of exercise and try not to obsess too much about the disease! One thing I found helpful was attending a PKD information day, run by the PKD charity – they post them up here when they’re scheduled in: http://pkdcharity.org.uk/support/pkd-information-support-days/adpkd-info-support-days

  36. Hi Dan,
    You visited us at The Waterloo Inn as preparation for your Paris ride & came back again for more cheese & onion pie! We are so pleased to hear that you are doing so well & your lovely wife is recovered from her donation. Best wishes to you!

    • Dan says:

      Hah, sorry Steve, this comment languished unread for months! Coincidentally I’ve just bought a new (old) car with functional roof bars, so it’ll make getting up your way a lot easier (I had to take the bikes to bits to fit them in the old car!)

      See you soon!

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