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Kidney dialysis,any experience and advice.(13 Posts)
Hi all. my ds 2 is 24 and has had chronic kidney failure since birth due to complications at birth.
He has lived an active life,works full time and is on medication.
Today he saw his consultant who has spoken about the possibility of him needing dialysis in a year or two. We are obviously a bit shocked at this and have lots of questions.
He works for Primark who practically sack him even if he has a Drs appointment so i cannot imagine they will be very helpfull. Will he get dla? and would this be payable as his health declines in the coming months? He lives with his gf in rented accomodation,we dont really have the room for him but would obviously make room but would it be possible for him to remain independent whilst having treatment or do people need lots of care?We are completely in the dark.
We are going to see our gp together next week when he has obtained all the info so we can discuss it but any tips or inside info would be welcome at this point,we are going away on Saturday and would like not to be worried all week if poss.Thanks.
I'm sure someone will come along with more relevant experience, but my DM was on dialysis for a couple of years, and with that limited experience I'd suggest that finding out how often he will need to be dialysed would be the most important thing.
From that, maybe speak to your local dialysis unit and see if they have a support group (ours does) and what time slots they do treatment on. eg do they do very early mornings, or evenings, or late nights, and how long a cycle would normally take (ours went on to insisting that everyone did 4hrs recently).
Finding out where they unit is, in relation to your DS home/work might also be important, if a long journey is involved. He'll also need picked up, either by one of you, or by ambulance/patient transport, because often people are a big woozy/knackered just after.
Good luck. If it is a couple of years off, he has time to get good plans in place.
Thanks,we always knew this was coming but its been quicker than we thought
It might be that he is a candidate for peritoneal dialysis which is done at home so that wouldn't interfere with his work at all. Theres lots of advice and support from the Uk Kidney patient association online
Thanks,we did peritoneal when he was new born,i did it at home untill he was about 3 months and his kidney function returned.They said he would be ok until in his 50's such a shame for a young man.
You sound very doom & gloom, possibly the GP may be preparing you all for what may lay ahead in the future.
If PD is a posibility then it can be done overnight and so wont interfere with work at all. You badly need to find out first hand about everything becuase really, i dont think that is all doom & gloom, its very doable and although inconvenient, it doesnt have to affect daily life too drastically.
Can you google the nearest dialysis unit to you and give them a ring to ask for advice?
Have his bloods declined sufficiently to warrant these comments from the GP then?
He sounds like a remarkable young chap who is not letting any of this get him down, a credit to you as his fab mum
It was his consultant who told him big un he has an appointment at the dialysis unit to talk about it.His function is only 15% has declined rapidly in 2 months he has lost weight and is tired.Its just a shock cos although we knew it would happen one day we thought that it would be when he was older and had enjoyed his "young years/had children/travelled etc.
Ledkr - this is a lot to take in. I work in an area associated with renal so I'll tell you what I know.
First off - dialysis is a treatment for ESRF (end stage renal failure). It will keep you going but it is not an easy treatment to have and it will impact on his life quite a bit. A better treatment is transplant. Transplants do NOT last for ever but you can get many, many years out of them and the majority of transplant recipiants have a far better quality of life than on dialysis. Is he on the list? If not he should be on it soon (assuming it is appropriate for him and it is for nearly all young people) and consideration should also be given to live donor options.
Likely haemodialysis regime - most units do three times a week and around 4 hours a time. You can do haemo at home as well if you have a person with you so that's something to think about. A lot of units are doing a lot more self care too now - where the patient takes some or all of the responsibility for their treatment.
You son should have access to support from a specialist nursing team, a social worker (ESRF is covered by the DDA so his employers need to act accordingly) and dietetic support - diet is v important.
Tbh - you're in for a crap year or two because most people feel pretty bloody awful before they start dialysis BUT it will get better and especially with a good transplant your son's prospects are very good.
Re travel - travel for haemo patients is possible but not that easy. You need space in a unit and you need a unit that doesn't dialyse Hep B patients - which quite a lot do do abroad. In the UK it's prety easy to arrange.
PD is a bit easier because you get your stuff sent to whereever you're going and you do it all yourself so no Hep B transmission risk.,
Thankyou,he did say he is seeing a dietician yes.
I was a nurse (rmn) so i could probably helphim,you are right it is loads to take in for sure,especially for him,he is a worrier at the best of times.My lovely gp is seeing us next week for a proper chat about it.
I cant donate as i have had cancer but he has 2 brothers who are willing,gosh i cant even believe im talking about it.
Sorry couple more things - yes he will be able to live independantly but he also may need a fair bit of care - no way to tell really. It depends on many, many variables! Yes he may be entitled to dla and other benefits - hence help from a hospital social worker. They can also apply for grants from The British Kidney Patient Association etc to help with specific things - holidays, washing machines, treats - there is a fair bit of help out there.
Many dialysis patients work though not many manage a full time job tbh. Transplant is a different matter - much easier to work etc.
Sorry x posted.
Sounds like home haemo may be worth thinking about then. He should ask what his centre's programme is like and get it on their radar. His girlfriend and any other realatives can also offer to be donors. Obviously it's less likely they will match but it's possible and you do not have to be related.
Hi ledkr, sorry I have just seen this post. I am very sorry to hear about your son. i would just like to backup what Basking has said re transplants. I had diabetes from the age of 12 and my kidneys started to fail when I was about 24/25. I had alot of complications from the diabetes and I was told I would need a kidney and pancreas transplant which I had in 2007. I was very lucky as I had a pre emptive transplant and I wasn't on dialysis. I did feel pretty rotten before my transplant but I still worked full time. Having the transplant was the best thing that could ever have happened to me and I feel very lucky and grateful. I went back to work 6 months after my transplant, although I could have gone back sooner. I wasn't great after the surgery but that was more because of the pancreas element of the surgery that I had complications with. I was in hospital with alot of kidney transplant alone patients and they seemed to do really well after surgery. If/when my transplant fails (hopefuly not for a long time!) I will defintely want to go on the list again as soon as possible. I know that often when there is a 'live' donation, ie. a kidney is donated by a family member/partner/friend, these are done before dialysis is needed. I have had a normal life that I never had before my transplant and I was lucky enough to get pregnant very quickly and have my son last year. It is so much to take in at first, when I was told I didn't have long left with kidney function I just couldn't believe it but I am under an amazing hospital and I think that most work alot with patients and their families long before anything extreme is needed. HTH.
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