Hi Brogan. I experienced a different level of energy as soon as I came to from my surgery. No more feeling like I’m walking through treacle. The constant itch has practically gone. No more renal fog! Fluid retention much improved. BP stable. But I feel there are few important things to remember - a kidney transplant is a treatment, not a cure. It is vitally important to take your meds, especially your immunosuppressants, consistently, on time and as advised (before/after/with food). Raise any concerns with your renal team. Attend appointments. I never got a egfr above 50. I’m currently around 37, but stable. My consultant is content. If she’s happy, I’m happy .
Sometimes, having had CKD for many years, or due to the meds you have to take, you may develop other conditions. I have peripheral neuropathy, plus lipo/lymphedema. So my mobility is affected. But I am trying to address that and not let it take from the amazing experience of a successful transplant.
It’s so positive to hear about the difference in energy and the improvements you’ve experienced since your transplant! That “walking through treacle” feeling lifting will really resonate with a lot of people here in Kidney Community.
I’m sure your lived experience will really help others who may be earlier in their journey or aren’t quite sure what to expect, so thank you again for sharing it so openly .
A few years ago after complaining to my GP that I was feeling rn down for the umpteenth time, I was referred to hospital, initially the nephropathy department, which was just as well, because they noticed excess protein in my urine.
Following tests, kidney biopsy, I was diagnosed with CKD Stage II.
Over the last year I have had a few Rituximab infusions, and although there has been no deteoration there has been no improvement either.
Currently, it has been decided to put me on a 3 month course of Adoport (tacrolimus) in addition to a top up Rituximab infusion. I know that tacrolimus is mostly used after a transplant so it was a bit of a surprise to be put on it.
Currently, my biggest issue is how exhausted I am, this is to the point that I just have to go to sleep, tired all the time, and even when it is not too bad, doing a few little things puts me back onto the ‘I’m exhausted again’
(Also, with all the looking at my internals, the have found that I have a bicuspid aortic valve, and they have just discovered a shadow on my lung, probably scarring caused by a possible infection due to a reduced immune system.)
Hello Tim and welcome. Well that sounds like lot to put up with. I think all with CKD have sleep issues. Personally, I can only go to sleep around 2am. If I try any earlier then I just lie there awake. When I nod off around 2-30 ish, I sleep until 9am. I also nod off during the afternoon for an hour. I tried avoiding this in order to sort out my main sleeping pattern , but it had no effect. So I have just accepted it as being what it is and work around it . Being 80 probably does not help either. Best wishes B
My kidneys have gone from 26% to 13% type 1 and very upset.dr put me on antibiotics for a week went up to 20 % they thought maybe infection 2 weeks later they are down again and Dr’s are baffled what do I do ?
You sound very positive. That’s great. I am stage 4 sometimes stage 5. My doctor says all good at the moment but I keep losing weight. I don’t know what to do as I can only eat so much. Any ideas please?
Yes I am stage 4 too.I eat largely what I feel like at the time.but in moderation. I avoid the very high potassium foods like Bananas and Tomatoes. My plan is to enjoy myself and concentrate on quality and not quantity. Reaching !00 would be good, but right now I will settle for 81. Best wishes B
Hi shazzer I’m sorry to hear your having problems with your kidney function it’s a scary time but we’re all here to support you . All you can do is be guided by your renal doctors Ask them to scan you and have all the relevant tests that are needed to get to the bottom of the problem but keep the pressure on your doctors to find out what’s causing the reduction in your function. I hope they can stabilise you soon but if you need to chat or offload your concerns I’m always here to listen take care
Ciao Stefano, welcome to our community, thank you for sharing your story. I hope you find the support and any information you’re after in the forum. All the best from the UK, Beccy
Hi,I’m Lyn,a parent of two wonderful children who both have unfortunately got PKD from their dads genes.My husband died six years ago with PKD which his mum had.My children are coping with it by eating sensibly,keeping as fit as possible,no added salt and plenty of hydration.I am now starting fundraising to support PKD gene research .
My son has just been told that his 2year old baby daughter has the disease and as you can imagine is full of guilt as my husband and me were ,but hopefully with support this disease can be medicated successfully and eventually eliminated..
I am so glad that you have joined this space and I truly hope it makes you feel less alone. There are many others here who will have similar feelings and shared experiences as yourself. Please feel free to ask any questions, create topics and share as much or as little as you’d like.
I am so sorry for your loss too Lyn . It sounds like PKD has certainly had a big impact on your family. It’s amazing to hear how proactive you and your children are being, and that you’re fundraising too (well done!). There are others here who understand PKD, so I hope you’ll find support and advice.
Hi All, I am Akash turned 38 this month, I have been diagnosed CKD last May 2025 and on hemodialysis since then, it’s difficult to cope with dialysis and regular life, 3 days a week with full time working professional make it a bit more difficult, I would like to have suggestions from the community to ease anxiety about transplant and after recovery, Thanks!
Sounds like you’ve got a lot to manage at the moment - balancing dialysis with work isn’t easy. You’re definitely not alone here, and I’m sure others will have tips to share about transplant anxiety too. Take things one step at a time and feel free to ask anything
My name is Kirsty im here because my family seems cursed with Kidney issues.
My husband has VUR and is currently stage 5 starting dialysis. Our 2 daughters also have this.
I have been through a years testing to donate to him and all looked perfect until a genetic test revealed I have Xlas which our 2 sons are now being tested for.
With Dialysis for my husband only a few weeks away I find myself suddenly over whelmed by the uncertainty of it all after thinking for 2 years we had a definite plan.
Watching my husband struggle with declining health whilst also fearing this is the future for most of our children.
I hope you are able to share some more information in our other topic areas about your diagnosis. I am very interested to hear about your experience with a Bozniac4 Cyst
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