Inspired by chatting to a couple of other posters on different threads, I thought I would start a group for anyone struggling with kidney failure, dialysis or after a transplant.
Kidney Disease is a massive problem in the U.K, but in my experience, when you say you have it, people don’t really understand what it means.
Personally, I have kidney failure, an eGFR around 20, and am expected to need dialysis or a transplant anytime from now really, although hoping I can hang on a bit longer.
Excuse me if I am a bit vague about some of the details as some are quite identifying.
Physically, I often feel absolutely fine, but on bad days am exhausted, dizzy, and my brain feels foggy. I bruise like a peach and my eye bags are horrendous, but I generally look ok which is why it is so hard for people to understand the illness. I work, exercise, act (mostly 
) normal!
The mental side is worse though. Waiting for the thing to happen that I feel means the end of the world but might not be. Fearing every blood test being worse than before, dreading the day I have to have dialysis. Dreading what that might mean for me and my family.
I don’t have anyone suitable, or offering to give me a kidney, and I feel so deeply uncomfortable about friends thinking I might be after theirs when I mention my illness.
I also feel so sad that my only hope is someone else’s tragedy (from a desceased donor) and this pains me mentally and makes me feel like a terrible person. I also know a transplant isn’t a cure all and comes with it’s own issues.
I just wish my kidneys worked!!
I wake up in the morning and forget for a second, before remembering and my heart sinks.
BUT!!!
Kidney failure has made me appreciate life in a way I never would before. I do not sweat the small stuff which is a lovely release.
Knowing about it has allowed us to plan, so financially we should be just about ok, and it won’t come as a huge shock when it all kicks off.
I would love to hear from anyone going through this, or anyone who has and can speak from experience of dialysis or a transplant. Feel free to rant a bit but also hopefully some positive stuff.
I am rubbish at checking threads but will try to come back to this one, even if no one else joins, it might serve as a nice resource for others to know they are not alone.
So...if you are renally challenged, welcome!!
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General health
Rubbish Kidneys Support Thread
SandysMam · 11/07/2020 11:43
Hi @WhoWants2Know people don’t realise that the kidneys play a huge role in making red blood cells, so the associated anaemia which has to be treated with the hormone erythropoietin can make you exhausted. Iron tablets won’t work for this type! Treating the anaemia really helps those symptoms so make sure your ex (if you still give a shit about him ) is getting the right medication from his renal unit.
Yes Dh had a lot of doctors saying that he'd be a lot better off with a transplant. It is for most people. It just seems unfortunate that Dh was doing well on dialysis. Then the holy grail of a donated kidney comes up. The op goes well. We get used to the new way of life. Then bang! Uncertainties return . 
Hi @fairplay, sorry are going through it too. I dream of an eGFR of 54 though so fingers crossed you stay stable, that should hopefully be enough to get you to an old age! The body is amazing really, I am amazed at how I function on such low kidney function and as much as I curse the illness, I also praise the old girls for still chugging along!!
@QueenMabby you are amazing if you are considering donating to your brother, it is such a selfless thing to do. The process is so good though, you can’t be pressured into it, there are loads of chances to “get out” of it if you really feel you can’t, and you get such rigorous health checks. They will only take your kidney if you are in rude health!
I hope your brother (and all of us who need it!) get what we need.
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He's self employed so he didn't have that to worry about. Although, being self employed, he didn't have any way of getting recompense for any loss of earnings. But he's always had that.
There are a lot of boxes of the fluid, we managed to store stuff in a corridor. The delivery blokes also brought the boxes in to our house which involves climbing several flights of stairs! They were great though.
When we went on holiday you can arrange for delivery of supplies but you take your machine with you. Occasionally he stayed overnight for work and took manual exchange bags with him that he could fit in a small wheeled suitcase and a back pack and fit in his overnight clothes.
You also have to have a supply of connectors and wipes and hand gel and wash. It sounds like loads but it wasn't too much and you get used to it.
He trained for some weeks and two PD nurses came to our house to talk to both of us and see we were happy with the set up.
In all the time he was on it, he only had a handful of technical problems. He had to phone a call centre in Florida (I think) when an alarm went off on the machine about a problem with the machine. And it was sorted very fast. Also a couple of times he forgot a part when he was away and I had to google to find the nearest PD hospital to drive and pick up a spare late at night. But that says more about my forgetful Dh!
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