Rubbish Kidneys Support Thread

[SandysMam]

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!!

Given the shambles that has been my journey so far, I dont think my hospital would get its act together to get them to me in time anyway ! Glad to see your DH got it mildly too @thing47 but sorry to hear you got laid up with it - all feels a bit unpredictable!

To be fair, the process worked very efficiently around here. DH had a home PCR which he fired off and a doctor rang the next day to have a detailed discussion about the anti-virals – it seemed to be the intravenous option rather than tablets, and he could have gone to the hospital the next day (which was a Sunday) for it if he had wanted. It was one of the more efficient dealings we have had with the NHS 😂

@SandysMam Ah no problem (sometimes I reply a little late due to work!) but it's nice to chat to people that have some understanding! Thank you so much we're both over the moon. I did mention to OH about hopefully getting an autumn booster before the wedding. I'm great to hear you are doing well on PD, as I have heard mixed views. It must really help you mentally too that you can carry on doing most of what you did before, although I have no doubt the tough days are bad. PD will be my partners preference too when he eventually needs dialysis. My partner did initially have a fistula in his arm fitted for HD and it failed. OH was told he couldn't do PD initially as he gets a lot of constipation (sooo sorry about the detail!) however then after this fistula failed consultant changed their mind and said he could have PD and they could prescribe stronger laxatives. He also gets a lot of stomach pain too which got worse and worse as his function declined however his consultants deny it is related to IGA and put it down to IBS however my partner is prescribed Oxycodone for the gut pain. When he asks consultant 'how many people do you know that take Oxycodone for IBS?' They say 'oh erm none' ... exactly! He isn't on the list due to his anxiety with Covid however he wants to get activated on there at his next appointment. He did have a live donor however they need to stop smoking and lower their BMI before dontation! Lovely to chatting to you Sandy. I realise I might of gone on abit here! Apologies in advance! Hope today is a 'good' day for you and not an tough one x

@thing47 Thank you for sharing your experience sorry to hear you weren't well with it, I'm pleased you both got through it though.

I had never heard about what you mention re the anti virals so this is very useful to be aware of. So basically if someone in our OH's situation doesn't require hospitalisation, it's better to try and do without anti virals.

Thank you again, hope you and OH are doing alright. I know end stages of kidney failure can be a challenge for the OH's aswel as the poor person having to go through it, on top of life itself x

Sending love @queenofwobbles I hope your okay! It can be very frustrating at times when your given the runaround with hospitals! X

So basically if someone in our OH's situation doesn't require hospitalisation, it's better to try and do without anti virals.

Well that was DH's consultant's opinion, yes. Just one opinion of course, but he's quite famous (consultant that is, not DH 😂).

Diam0ndsareagirlsbestfriend it seems you guys have had a tough time of it too. It’s hard enough going through the pre dialysis stage and then having covid times on top. Can he ask his unit for some reassurance on his own covid risk? Hopefully with milder variants things will get easier. Let us know how it goes - the PD and the wedding!

Hope everyone is doing well. Welcome @Diam0ndsareagirlsbestfriend @Lolacat1234 and @thing47

My BP continues to be an arse, hanging around 140/90 despite being on higher BP meds. Not sure what else I can do to lower it. I don't overuse salt, don't drink caffeine, try walk where I can, so frustrating.

@SandysMam
We need a new thread. Would you do us the honour please?

www.mumsnet.com/talk/general_health/4564714-crappy-kidneys-thread-2

New thread!!! In case we lose anyone, thank you to all of you for your support since this thread started…it really has made me feel so much less alone. Hopefully see you on the other thread!
@AdditionalCharacter @Diam0ndsareagirlsbestfriend @FuzzyPuffling @HairyPotter @HoneyBeeGood @MissKittyFantastico84 @OrganTransplant123 @ShinyHatStand @queenofwobbles @renallychallenged @thing47 @tobee

Have tagged in the most regular posters but obviously all welcome (sorry if I missed anyone off!).

Hi @AdditionalCharacter

Aww thats sooo frustrating!! I hope your meds start to work better for you soon, have you tried many different meds for your BP? My OH has been on Ramipril (I think that's the spelling!) for a few years which seems to work. Hope your okay

@queenofwobbles Aww thank you! It's definitely been tough, hopefully with it being summer things will calm down in relation to covid. I think my OH is wanting to try and get a little normality without being too risky and summer is great for that, being able to meet outside etc. He seems to have good days and bad days which seem to incl mainly sickness, tiredness or pain but you have to take the good with the bad with this disease. How are you doing? We booked our wedding in for later this year, over the moon! Keep strong

Ooh I do not think I've been a "regular" anywhere before !

In kidney related news we have a new prospective live donor going into the matching run in July. I've been in it twice but no match, hopefully a new candidate will help. Absolutely no guarantee though as we know it's DH who is difficult to match. He's really hoping to get a match before the PD fails and he has to switch to HD. Blood tests haven't been great lately.

In non-kidney news I have a new job offer which is more money & closer to home. Ive also stretched the truth regarding notice period to enable me to have 6-7 weeks off between roles. I am very happy about this, I really need a few weeks breathing space. Happily half will be before schools break up for summer and then I'll have first 4 weeks of hols off too which will be great for DCs.

Hope everyone is having a good week

Great news on the wedding! Yes it's good to make the most of the good weather.

How does your 9yo manage with the situation? I have 7&9yos. They're reasonably good about it all but can get frustrated sometimes if DH is tired & grumpy.

Woo hoo..a wedding a new job. Well done threadmates! And what a way to bumble over to the new thread. See you there!

Hello, Sorry to jump on this thread and change the subject completely but I'm not sure who else to ask as my GP knows very little about CkD (feels that way anyway). Anyway, I am on holiday next week and I am terrified of flying. Usually I would take a few diazepam but since being diagnosed with CKD 2 I'm wary of what meds I take. Anyone know if these are especially bad for the kidneys (like, in the same way ibuprofen is)? I've Googled it and found little info.

Hoping someone can help 🙏🏻 xxx

@bookworm1982 I can't help, but we are on a new thread now, so try reposting there
www.mumsnet.com/talk/general_health/4564714-crappy-kidneys-thread-2

Ok thank you, I will xx

Hey guys, I'm back :( I very naively thought once I had my pyeloplasty that would be the end of my problems but I just had my latest round of bloods and it appears my gfr is still falling, it's 64 now. It was 72 pre pyloplasty. Other thing I noticed on my bloods was my TSH level creeping up. I've been feeling pretty shitty the last month or so, exhausted, low mood, can't shift the extra stone I put on whilst I was recovering from my op despite a good diet and exercise regime and sorry about TMI but my libido has packed up and left which is causing problems in my relationship. I guess my question is do any of you have trouble with thyroid as well? TSH is not massively high, it's 4.15 which is basically on the cut off for normal, but I've read loads about optimal levels being under 2.5 and anything over 4 being subclinical hypothyroidism as well as studies that link a higher TSH with a negative impact on gfr. I see my consultant next week so will raise this with him but he's a urologist not a thyroid specialist. Anyone here with thyroid problems as well?xx

I think this thread has moved on, another linked below. Not an expert but @Lolacat1234 I would request an endocrinology referral asap and get their view. A urologist will be excellent at what they do but frankly unlikely to have a clue. You defo need an endocrinologist to take the expert view, they need to work closely with nephrologists too.

Thank you - found the next thread and posted there too, I will push for a referral x