Kidneys Support

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NikyAndro

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Relationship to Diabetes
Type 2
Just looking for some support / advice on Kidneys. I have been told that dialysis is in my future and that transplant will be discussed at my Renal appointment in April. My kidney function is 14. Just feeling lost really as I have really good control and my Hba1c's are between 40 and 45 (on insulin) but the complications keep coming.
 
I'm not sure anybody is in a position to advise you as we are not allowed to give medical advice though somebody may have personal experience.
 
I was hoping that others on the same journey would be able to advise on general things. What's it like on dialysis, how it effects your life etc I'm sure I'm not the only only one with Kidneys problems. Thank you for taking the time to reply. .
 
So sorry to read that you are suffering another complication. How is your foot healing from the surgery? Hope you got the ulcer on the other one healed.
It must be incredibly worrying for you and I know from your previous posts you have been doing your utmost to manage your diabetes as well as you can, so I can imagine you must feel kicked in the teeth! Is it possible that the damage to your kidneys predates your diagnosis and good management. I think sometimes just knowing that it isn't your fault or that you are doing everything possible to keep healthy now can help with the mental aspect of it. If this is historical damage that has just taken time to surface, your current good regime is at least helping to prevent it getting too much worse, but perhaps a transplant may be the hope you need for a new start. I don't know how high the chances of that are but I wish you lots of luck with it. I can't think of anyone on the forum who has reported significant kidney problems to tag them to perhaps share experiences. I can really understand wanting to touch base with others in the same situation or down the line from it. I know there was a lady at my diabetes clinic one day who had had a liver transplant which really amazed me as she seemed to be doing great. I wonder if there are any specific forums for kidney transplant patients where you could find people in a similar situation.
Wishing you all the luck in the world with the challenges you face and if you are ready to go into more detail about your diabetes journey, either publicly on the forum or via Private message I am happy to listen or perhaps talking to the advisors on the Diabetes UK helpline....

Tel 0345 123 2399​

might give you some reassurance and support.
 
Thank you for your kindness and understanding. .And you have an amazing memory. My ulcer is healed, my amputation is healed and I would of said Im doing well until this latest set back.i think the damage age was done in my 10 years of denial and now it's all catching up with me. Staying positive is key. Thanks for your considerate reply. Nicky
 
That is tough! I went through lots of emotions including guilt and regret when I was diagnosed. I firmly believe that my sugar addiction lead to my diabetes diagnosis and I can look back and think of occasions when I may even have joked about getting diabetes with friends and colleagues which just seems so totally shocking now, but hindsight is a wonderful thing. 🙄 We all make poor decisions or find that we can't or don't want to face up to a challenge until it becomes so big that we can no longer ignore it. The important thing is that we use those negative feelings and consequences to help us do better in the future rather than dwell on them, because we can't change the past. You are doing your best now and that is all that counts and if you eventually need and are hopefully lucky enough to get a transplant, the new one will have a much better outcome and turns things around for you.

Great to hear that your feet have both healed well and lets hope you get a positive outcome for your kidneys too.
Sending (((HUGS)))
 
Hi. My wife had a transplant almost 2 years ago and 14 is a critical decision point for dialysis/transplant. Be aware that if you are older (my wife is in her 70s) the chance of a transplant is high once you on the list and 'activated' as there are many old kidneys and they don't like putting them into the young. My wife managed to avoid dialysis by convincing her lovely NHS consultant to produce a trend graph which showed she would reach the critical point within 6 months and she was invited to the selection process by a bit of good luck. At that interview you have to be very positive about the future. She finally had her 3rd kidney within 4 months of going 'active', the first two being no good. PM me if you want to know more.
 
@DaveB When you say her 3rd kidney, do you mean 2 transplants failed before the final one was a success or that her own 2 kidneys were goosed and therefore the first transplant was her 3rd kidney?
 
Wow! That's what I was talking about. I am 54 so don't if that's considered old or young. I got the impression I could be waiting a very long time. Are there any self help things you can do i.e. with diet or lifestyle? Thank you so so much for this. Nicky
 
rebrascora said:
@DaveB When you say her 3rd kidney, do you mean 2 transplants failed before the final one was a success or that her own 2 kidneys were goosed and therefore the first transplant was her 3rd kidney?
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She was offered a first kidney after just 1 week being activated but after she got to Addenbrookes and was prepared they said the kidney was no good so back home. Three months later she was offered another one. Back to Addenbrookes and same thing. A week after that she had the 3rd offer and all went well. It's not a perfect match but good enough and is working perfectly. I must praise both the National Transplant service and Addenbrookes considering this was during the Covid crisis and the care and organisation was super - the NHS at it's best.
 
NikyAndro said:
I was hoping that others on the same journey would be able to advise on general things. What's it like on dialysis, how it effects your life etc I'm sure I'm not the only only one with Kidneys problems. Thank you for taking the time to reply. .
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I can only speak from 2nd hand knowledge. My very best friend was on dialysis for about a year. My comments below might help you manage your expectations.

The actual process was painless, but after he got home he was extremely cold and would frequently go to bed and recover under the winter duvet (even in summer). He was going 3x weekly and inevitably the time commitment was extremely intrusive. Pretty regularly the hospital would change the day and time at very short notice, because priority was given to patients already in hospital and dialysis spaces were in short supply. So he and his wife could never commit to going away - in case the scheduled appointment was altered. They were extremely grateful for the medical support, but his wife was really strained about it all: on the one hand she was desperate for her husband to receive the dialysis; on the other hand he was not well enough to drive himself and she was giving up 6 hrs for each 4 hr dialysis slot, to deliver him, assist with getting a wheelchair to get him to the ward and for the return trip. His 4 hr slot was not really long enough for her to go home and she simply ran out of other things to do. It was very challenging for both of them.

Sorry this is not great info, but if you can avoid getting onto that treadmill I would say do that; otherwise at least be aware it is a process that needs great patience and understanding.
 
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