Anyone with CKD or on dialysis?

[Bornafreak]

I was wondering if anyone wanted to have a moan or share their experiences with either CKD or kidney failure?
I have now been on dialysis for just under a year and I started off on 3 hours but I’m now on 3.5 hours and lately I’m finding it a wee bit rough.
I seem to be even more exhausted and my appetite has decreased so I’m starting to lose weight again which is a bit of a disappointment as I only came off my feeding tube a few months ago.
I’m writing this as I can’t seem to sleep again and I’m due to be up early for my session in the morning.

My DH is on dialysis and his session this morning has totally wiped him out this afternoon . He is usually ok the day after and we can pretty much have a decent day . The problem is you then think “ oh another session “the day after that and it can sometimes get you down. . He has been on dialysis for 5 months . The hardest bit is trying to think about what to eat for variety . I think he gets bored with the fact he had to omit things from his diet but I know he sneaks in things he shouldn’t eat and I don’t like getting annoyed with him when he does this Sometimes he looks fab and others he looks so tired 😔
Hope you are feeling ok today @Bornafreak

Hi my Dh was back on dialysis since the start of lockdown (). He had a failed transplant. He waited for his transplant for 7 years (I think that's an unusually long time?)

Anyway, he had acute renal failure due to malignant hypertension. When he left hospital he did in centre dialysis for a few months; the early morning session, he was always incredibly tired afterwards. Then he was trained up to do home peritoneal dialysis which he did every night until the transplant. It was much more gentle and he used the machine overnight rather than manual exchanges. It had a few drawbacks and not everyone is suited.

Since being back on dialysis, haemo, in centre the doctors were very keen on him doing home haemo which could be less hours but every day or whatever regimen. So far he's put it off because he's a bit nervous and they say he can hopefully have another transplant at some point.

Currently, he goes to in centre haemo dialysis 3 x a week for 4 hour sessions. In a way it worked out well that he went at the start of lockdown as it gave him somewhere to go. He watches a lot of things on his iPad. He also now goes in the evening and can sleep afterwards as normal.

Unfortunately, we've found there's not a massive amount of support groups etc for the U.K. There's much more of a presence in the US but they have different systems and ways of doing things of course.

There is a thread on here called something like "crappy kidneys" or something. It's seems very friendly.

I just wanted to share this with you in case it's of any help. I think it's a pretty isolating situation.

Best wishes op.

Crappy kidneys thread 2

www.mumsnet.com/talk/general_health/4564714-crappy-kidneys-thread-2?page=8

Sorry first link didn't work

@tobee It is very isolating and I have noticed that there isn’t much info , groups etc in the U. K . The Facebook group I follow is mainly filled with patients from the U.S and the health care system is so different there . I am quite new to this as my husband went to stage 5 quite quickly and then onto dialysis recently . The whole concept of food choices is mind boggling and I am trying so hard to do the best I can . I feel like he is eating the same things all the time and then wondering if we are making the right choices 😱

Yes my Dh has had to change what he eats quite a lot at different times throughout this. Also, when he had his transplant he had to drink a lot of water. Then it failed and back on haemo it was drastically reduced. Plus his meds mean he can't eat at certain times. Sometimes I think friends and family can forget that this is every day and it's awkward when we get invited out and food is involved. Also I think people don't really take on board that you can't take time off from dialysis. Dh doesn't go to dialysis on Christmas Day but he does on Christmas Eve and Boxing Day!! And going on holiday is a whole other level of organisation.

I had to come off a facebook group I was on. Not only was it US based but also a lot of older people with many other health problems which made me feel quite down in the early days when I was looking for reassurance.

I have to say though re the food choices that you're still early days and you'll get used to it. Things will become more clear and you'll realise there's more than first appeared.

Sorry, I didn’t think anyone had replied, so thanks to everyone who did. I’m lucky in a way as I haven’t had to restrict anything from my diet and I am not on phosphate binders and I don’t suffer from excess fluids either.
I do find it rough as suddenly started to suffer from nausea and vomiting and I don’t know whether that’s a side effect.
tobee I had a look at the crappy kidney threads and unfortunately it doesn’t seem to have any posts made in the last few months but thank you.
I find it hard with family members expecting me to be like I was before dialysis and don’t realise how hard it is at times having the energy.
lovemybooks I hope your husband can get a transplant sooner rather than later and I do understand how demoralising it can be with the constant sessions as sometimes I get so fed up with going.

@tobee After a session of dialysis my husband goes to bed , I can tell in his face when he comes home . On the rare occasion he comes home and feels ok but I still say to him to go and rest . I know what you mean about the F/B group and some of the negative things. My husband had one kidney which deteriorated probably due to taking NSAD’ s for gout . The consultant didn’t want to do a biopsy as it could’ve been dangerous at the time due to the fact he only had the one kidney . I look at the F/B group for good ideas on food recipes and I know the people who are knowledgeable and always write up that all have different needs . Some people don’t have to restrict their diet and some have other illnesses , usually diabetes . My husband isn’t a diabetic .
How long did your husband wait for a transplant?

@Bornafreak My husband didn’t take any medication, except for blood pressure tablets . It was only towards the end that he felt ill , nausea in the morning and tired all the time . I didn’t realise , until I joined a group , that it is usual for people with CKD to get anaemia and the nausea comes from too much phosphate .

I hope you have a good day today , I’m presuming you don’t have dialysis today . My hubby has it on Tuesday, Thursday and Saturday .

you’re right I don’t have dialysis till tomorrow and how does your husband find how he is on the extra day off? I find on Mondays I’m more exhausted and not fit for anything and the nausea and vomiting is now getting worse whether it wasn’t really a problem before. I didn’t know that phosphate levels can cause nausea. I do get injections into the dialysis machine for anaemia, i unfortunately don’t think I’m eligible to go on the transplant list as I have various co morbities but I will admit I’ve never asked.

@Bornafreak sorry about my info , I think it’s high phosphate that causes the nausea but it could also be the toxins . The itchy skin is high phosphate levels do my husband stays away from a lot of cheeses . He does have ricotta and cottage cheese .
By the Monday he is feeling tired again and I worth about him so much . Sometimes he looks great and other times you can see that he looks a bit pale . He also has the EPO injections into the dialysis and he has extra vitamin d . My husband is tall and large framed and I think that also determines the way dialysis works . A lady who sits next to my husband has less time on dialysis as she has a tiny frame .

That should be worry not worth 😂

Thanks for the thread @Bornafreak though sorry for what you are having to go through. My DH experienced much of what PPs have said re dialysis – he has Type I diabetes so the additional food restrictions and phosphate binders did make life a little tricky diet-wise as he normally has lots of nuts, seeds and pulses instead of carbs and wasn't allowed any of those, but he was fortunate never to be on fluid restrictions so could drink a lot and even when his eGFR was in single figures that remained the case.

Interested in your DH's experiences @tobee as DH also did PD dialysis at home after training – our front room was full of all the different types pf dialysis fluids he had to have! But he found the overnight sessions via machine excruciatingly painful (to the extent of telling me he would rather call it a day than continue with them). He had a couple of procedures to try adjusting the PD tube but they didn't help. Luckily he found the manual 4 x daily regime much more palatable. Of course it's quite restrictive in terms of work and social life, but it kept him going for a while.

He got a transplant about 18 months ago, and so far it has been a success, he is back working, exercising and if you didn't know what he had been through, you wouldn't be able to tell. He was on the waiting list just over 3 years, had one false start (where he was in the operating theatre when they found an issue with the donor kidney) before a suitable kidney came up – I think those stats are pretty much bang on average. 7 years sounds awful.

My Dh got his transplant after 7 years @lovemybooks.

Yes I remember my Dh had a few times that he had pain from doing the overnight pd @thing47. I can't remember what he did to alleviate the pain now. Sort of forgotten what tricks we learned as we moved to the next stage. I do remember him having to call a number in California or Florida or wherever, to find out why the machine was madly beeping in the night; that was where the manufacturer was.

Lovemybooks I can imagine you do worry about your husband as it cant be easy watching a loved one struggle but it’s good he has you for support.
I also get the EPO injections and another iron one called Venofer I think.
My dietitian says I have the small kidney filter as I notice people are all on different size filters although I’m not sure why.
thing47 and tobee I have noticed a lot of patients are on dialysis either due to type 1 diabetes or high blood pressure but I’m glad your husband got his transplant eventually and that it has given him a new lease of life and I hope it is successful for many years yet for you both.
I have the urine going back into my kidneys so I have a Nephrostomy and I have 2 stomas and before I started dialysis I was iv fluid dependent but I now get extra fluids while on dialysis.
Thanks for the information as it’s helpful to know how others cope and I guess not to feel so alone .

@tobee according to DH he rolled around on the floor a lot and tried to chew his arm off 😀 Afraid I was sleeping in another room by then as the PD dialysis machine was so bloody noisy.

@Bornafreak ironically DH's kidney disease was completely unrelated to his T1 diabetes and pre-dated it by many years. But yes I'm sure in the majority of cases it is linked. Often with long-term T1 diabetics they do a joint kidney/pancreas transplant but in DH's case they were worried that because an off-pump heart bypass a few years earlier had left him with a slight heart murmur that it would be too high risk.

It sounds like you have been particularly unlucky with your combination of problems, I do wish you well, and thannk you very much for your good wishes to DH.

Apologies for gate crashing, I just wanted to recommend the website Kidney Care UK for support and advice. I’ve found them really helpful.
They also have a section of the website called Kidney Kitchen which can be helpful for adjusting recipes or for new ideas.
Hope this helps and apologies again for butting in!

Hi
I have been a contributor to the crappy kidneys support thread in the past. It was always helpful - feel free to bump it back up into active!

My DH has kidney disease. He's now had 2 transplants & 2 stints on PD. There is a PD support uk Facebook pace which is quite active & friendly.

It sucks ! It's a hidden disease at the moment but more & more people will suffer over the next 10-20 yrs. I work in med tech & the predicted incidence growth is startling.

I have ckd 3a
My kidneys are permanently damaged due to sepsis, necrotising facshitis and multi organ failure.
EFGR last year was 24 at the lowest - was on diyalsis 24 HR per day for 7 weeks solid.
Was predicted to be on dialysis for the rest of my life.
Has tesio in situ - now removed, no AKI but still in ckd 3 with efgr being 53.
Sick of the constant itching though 😬