Crappy kidneys thread 2

[SandysMam]

Welcome to thread 2 for all those lucky enough to have kidney problems 😆

Kind, supportive thread for kidney related chat and the physical and mental toll living with kidney disease and general chronic ill health takes. Link to previous thread www.mumsnet.com/talk/general_health/3964834-Rubbish-Kidneys-Support-Thread?page=40&reply=117738679
which documents my personal journey from late stages CKD to peritoneal dialysis. Hoping for a transplant before this new thread is full!

Big hello to all existing members and welcome to anyone new!

DH had tube put in 3 years ago. Then things unexpectedly plateaued for a while. Having it externalised at a later date only requires a local and about 30 minutes of pulling.

Whereabouts are you based @queenofwobbles? (PM me if you prefer). DH was given the choice of 3 days at a clinic, staying over, or waiting an extra week or two when there was a trainer free to come to our house. As he much preferred the latter option, he decided to wait – trainer was here last week and was awesome.

I took 2 of those days off so I could see what needed to be done too, though DH is generally competent 😂

Yes but my Dh is self employed and, pre pandemic, works from home and also in different places, different hours etc.

Of course I say it's all been relatively easy but it was Dh doing it not me! He takes all the stuff he has to do - diet, meds, exercise, hygiene extremely seriously.

The only things I really remember with peritoneal was a couple of times he had a tiny crack in his tube; the bit that comes out of the body. It was pretty easy to deal with though. One time he noticed he had a wet patch on his shirt while out at the pub. He went straight to the hospital caring for him, they took bloods, and gave him precautionary antibiotics and he just stayed for a few hours to get results I think. They trimmed the tube. All fine. No time for infection to kick in. We're incredibly lucky to live 15 minutes from the hospital.

Also, maybe 4 or 5 times the machine wouldn't stop peeping (it alarms if you lie on the tube but usually stops when you move) and he had to phone a number in Florida iirc for advice! Another time the machine wouldn't turn on and had to be replaced the next day. I think he was told to do a manual exchange and until the machine came. They give patients a few manual bags for back up I seem to remember.

He actually quite enjoys in centre dialysis atm. His transplant failed just before the pandemic and he started back on dialysis just about lockdown 1. Since he was shielding it gave him somewhere to go 4 hours 3 x a week! Do a bit of work, watch Netflix etc etc.

"DH had tube put in 3 years ago. Then things unexpectedly plateaued for a while. Having it externalised at a later date only requires a local and about 30 minutes of pulling."

Yeah the pulling was fun to hear about 😬

@welshmum3 Hi there, IGA nephrology friend - we're in the same boat, and I'm sorry if it's not the news you were hoping for.

If you ever have any questions, please ask and I'll do my best to answer. I know you are going through a really difficult time right now, and it took me a long time to come to terms with my diagnosis. Denial, Anger, Bargaining.... I ran through the whole lot. I hope you can find support and kindness, and I send you both over the internet.

It is so scary, but I want to do my best to assure you that it can be fine, better than fine, happy. I'm now six months post transplant, on holiday with my family and yesterday I completed a very challenging Go Ape course, with two massive zip lines.

I never thought I'd be here again, energetic, light, smiling, laughing, but I am - and you will get to this point too, whatever that looks like for you.

Sorry if this all seems a bit soppy from a stranger online. I just wanted to shine a light for you, because I've been where you are right now. And I would have needed this.

Sending love and light.

x

@MissKittyFantastico84 thank you for your message. I'm sure I'll have loads of questions at some point - at the moment trying not to think about it at all, I guess it will all become more real once the dialysis people get in touch.
Excellent news about your transplant. How long did you wait for that?

@welshmum3 No worries at all, I hope you're coping as well as you can. In answer to your question, I was very lucky to be gifted my kidney from my brother.

I know I'm one of the few, and I'll always be grateful.

Hi to new posters

@welshmum3 my DH has IgA too and is currently on home overnight peritoneal dialysis (2.5 yrs). How old are your children? Getting up in the night would be challenging if hooked up to a machine but not impossible with the right set up.

We went to the transplant games in Leeds. We all did the open to all fun run, my 7&9 year olds collected sponsorship for kidney care.

Nothing much new to report. The wait for transplant continues. The July live donor matching run for incompatible pairs failed to find a match despite DH having 2 live donors going into the scheme. That's the 3rd failure now so not sure it's very likely at all to work now.

Hope everyone is ok

There is a way to turn the brightness down, and to make the display turn off after the initial set up.

Also for the noise try putting it on some thick towels, that muffles the vibrations a lot

My nephew, who we tragically lost a few months ago, donated a kidney and we have since heard it was a successful transplant.
We are obviously devastated at his loss but glad that he has changed someone’s life for the better.

Hi@renallychallenged nice to hear from you but sorry to hear that, it must be tough. Is he on the national list too? How is the PD going for him?

I was worrying over getting up in the night for my kids and to use the loo. My nurse said it’s no problem they will just give me a tube that reaches so I can do it all without disconnecting. They made it all sound really easy. I’m still having huge wobbles over it all but it’s more things like will I have the energy to carry on working and clean the house! And will I ever sleep again with the noise - Glad of these light and noise tips!

Hi @Foxymoxy68 I'm sorry to hear about your nephew. Its an amazing thing to do for someone. I don’t think I have the words to explain it really! I’m waiting for a transplant and am so thankful for people like your nephew

Thanks very much @renallychallenged ! We've found the dimmer switch and he covers up the modem. He doesn't mind the noise.

Had a few teething issues with very very slow drain times (over an hour and a half for initial drain) and constant alarms (12 one night). But renal team have tinkered with settings and the last 2 nights have returned better figures and no alarms so fingers crossed.

@queenofwobbles DH has an extension on his patient line which enables him to get to the loo (we don't have an en suite here). He says it's fine. FWIW he is still working, though he has the advantage of working from home as he's self-employed, and he is cleaning the bathroom while I am on MN 😀

It is really reassuring to hear its working out @thing47. Sounds like a tricky few days (12 alarms must of done his head in!!) but I am glad he can get it all adjusted. Glad he went straight onto the machine - that is my plan too since I dont know how I would fit in the manual exchanges.

@renallychallenged Two of my children are adults in their twenties. One still lives at home. Both have said they want to look in to donating when we get to that point.
My youngest is 17 and has additional needs. During term time she is away at a specialist school. I need to travel there fairly frequently (200 miles each way) and be able to juggle this, and work and dialysis.

Hi all,

Just catching up on the thread after a few weeks on holiday.

Hi @tobee I did home HD until I had my transplant. It only took 3 weeks to train and although on the first day I felt I’d bitten off more than I could chew, a few weeks later I was at home. I worked three days a week, often while on the machine- luckily I worked from home. If you have any questions fire away.

@Foxymoxy68 I’m so sorry to hear about your nephew. It must be comforting to hear that the transplant was successful. I had my transplant last year and it was life changing. Love to you and your family.

Thanks @OrganTransplant123 !

Sorry to hear about your nephew too @Foxymoxy68

@thing47 make sure he takes the laxatives regularly too - getting bunged up can cause low / slow drain alarms

Hi everyone, sorry I got locked out then lost track 🤪 * *
Glad you’re all doing ok, too many old posts to refer to but @Foxymoxy68 so sorry to hear about your nephew. I cannot tell you what an amazing thing it is he did for someone, not only that person but their whole family. I know when I get my transplant (hopefully!) my donor will be with me always and I will never forget them.

Meanwhile, things are still good for me. Sadly @queenofwobbles you will absolutely have the energy to do the housework and work and looking after the kids!! So don’t be getting any ideas about getting out of any of that 🤣 Dialysis is a drag, not going to pretend otherwise but it is keeping us alive and for that I am so grateful. I do dialysis to live, it is another chore like brushing teeth etc. It has to be done. I have had many happy times since starting it, I am happy and you guys about to start will be ok too. I very much look forward to not having to do it and I will absolutely cherish that new found freedom if it ever comes but I promise, you will be ok! Positive thinking is really important though or you can easily spiral into feelings of how unfair it is. It is unfair but it’s happening, and it’s better than the alternative.

I so wish this thread had been around before I started (with a future me on it!!). It would have made me feel so much better and I hope I can do the same for someone else.

Just wanted to give you another shout out @SandysMam for starting this thread in the first place AND for sharing your experience in such an honest but positive way. Of course no one wants dialysis, but I really admire how you are moving forward with it, and trying to help those who are facing it and are understandably terrified.

I'm well aware that it may still be in my future - as CKD patients, it's always a possibility. But the way you are living with it as just an annoying part of life right now, it helps people like me get past the fear of the unknown.

Monday snaps for @SandysMam!! Hope you all have great weeks...

x

I do dialysis to live, it is another chore like brushing teeth etc. It has to be done. I have had many happy times since starting it, I am happy and you guys about to start will be ok too

Thanks for this @SandysMam, this is absolutely how DH is approaching it too, treating set up and dialysis itself as one (among many) chores he has to do. He says he'd welcome fewer alarms and more sleep, but otherwise isn't letting it impact on his life any more than it has to. And for those of you who enjoy positive stories, we went to a gig at the weekend, to see his favourite band. He wasn't sure he'd have the energy for it, particularly as we were standing throughout, but though he was tired afterwards he says it was definitely worth the effort.

I had an iron transfusion a the end of July and over the last few days I am suddenly feeling as if I have (a bit) more energy. It is a lovely feeling! I didn't realise it would take so long to take effect.

Hi @SandysMam glad you are keeping ok. Love hearing how you are getting on. I wish this was around years ago too it would of helped me so much. I read this thread over and over whenever I have a wobble!

Is it a bad sign that I feel nauseous / have been vomiting in the mornings?
Have the most disgusting taste in my mouth almost constantly which doesn't help.
Still waiting to hear from the dialysis team after my recent IgA diagnosis. Should I chase them up?