Itching

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Hi all I've now been told I have to prepare for dialysis I'm terrified can anyone tell me what happens when you have to prepare also severe itching on neck face arms all GP has given me is e45 anti itch cream which is not doing any good I'm also trying aveenio moisturiser and a antihistamine but not working so anyone know what else I can try also one last thing what can I safely put in the bath to help with getting rid of some of the toxins I have high blood pressure so don't know if I can use dead sea salts or Epsom salts

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  • Posted

    Hi Ian. I've had haemodialysis from 2012 on and off, then every other day from 2015 up until my transplant in Feb this year. If you're in the UK, you'll be given a slot at the hospital, and will need to go 3 times a week. I won't bear around the bush with any of this...you can never have a day off. A majority of patients on dialysis are in God's waiting room, but the guys I was with were all still friendly and chatty. It becomes quite social as it is a bit like a work environment, you see each other so frequently. Fitting in helps pass the time. You either have a line put in you, or they create a fistula in your arm. (Google fistula formation). If you have a line they just connect your lines. With a fistula, you get 2 needles (considerably larger than injection / blood test nesdles). It can hurt when putting them in, but you might get used to it. If you have a fistula, ask your GP for EMLA cream. Apply an hour and 1/2 before needling to numb the area they needle. Sessions are usually around 4 hours depending on how bad your kidneys are.

    You will have dietary restrictions you need to adhere to, they should discuss it with you, but phosphates are a no no (If you like dark soda like coke / diet coke / dr. Pepper etc then cut them out. Also watch your salt.

    As I said, I'll be blunt so there are no surprises. It's can be mentally taxing if you have the wrong attitude. As I said, there are a lot of people there who are having this until they die. Try not to view them that way. If you have a fistula, the needles DO hurt when going in (see EMLA cream), but usually ok once they are in. Don't move your arm once they are in or it can break the fistula / start hitting muscle and that smarts, big time. Finally I'll say it again, you never get a day off. Sorry if some of this is a bit harsh, but you need to know what's going on.

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    • Posted

      Thanks Matt I will ask about creme if I use it will I not feel the needles then my kidney specialist has recommended the overnight dialysis lasts about 7 hours diet wise I. Struggling with what to eat as I have to watch potassium intake had dieticians advice which didn't help much I told them if I could have a weekly eating plan I could stick to that but they wouldnt give me one mostly have white rice and pasta which I don't like

      Porridge plain biscuits can't find a low potassium salt free sauce for rice or pasta anywhere so grateful for any ideas also cannot find salt free bread anywhere tried making. My own but was disaster what did you eat also a y advice on itching unfortunately I have hereditary amyloidosis which is destroying my kidneys so any transplant I get the amyloidosis is going to start attacking the new kidney but they say it would take about 5 years to destroy it my neph wants to see if he can donate a kidney to me although we're not blood related as I was adopted my specialist said you don't have to be same blood type did you receive any benefits when you were bad I lost my job recently due to my health condition and am currently on universal credit I have to go to a work capability assessment and they decide if I'm fit for work or not my universal credit coach says if they find me fit for work or unfit for work but fit to prepare for work in the future I will get no extra money at present get 317ppunds a month after paying my bills gas electricity phone etc I'm left with 15 pounds a week to buy food toiletries cleaning products clothing etc it's an absolute joke I live by myself sorry for all the questions but need help

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    • Posted

      OK. Sorry, i cant help much on the diet side, as when i was on dialysis i just didnt give a crap so ate and drunk what i liked. The only restriction i stuck to was the volume of fluid youre allowed....you cant drink unlimited amounts as the kidney will not process it. Eventually, you may stop urinating because the body gets used to the machine doing the work instead of the kidney. That is when you have to stick to drinking only a certain amount.

      While the dietician may not be able to give you a meal plan, they should give you a "diet sheet" which shows food to avoid, to have in moderation and to enjoy.

      Blood types. Obviously an exact match is the best, but not always possible. There are certain markers (I don't know the specifics) they will look for. When a donor and recipient are considered, they do a "cross match" to test donor blood with recipient blood...which blood group has antigens and antibodies, which type can donate to which other types and who can receive from who. Have a look at Wikipedia under cross matching.

      Benefits...I don't think Universal credit has started in this area yet. I get ESA and PIP. I was written off work ages ago after an accident left me with a liver transplant, an amputation of 1 leg and a few brain surgeries. I guess you have to stress to them that you will shortly be on full time dialysis with no chance of recovery OR a transplant, as if you have a new kidney it will eventually deteriorate and you'll be back on dialysis. (bend the truth with them as they never understand true conditions).

      Do you have a local food bank?? The Citizens Advice Bureau can issue vouchers for those that can prove they have extremely little cash for food .

      I never had the overnight dialysis choice. Did they say to you it's PERITONEAL DIALYSIS?? That's different from haemodialysis as you have a permanent tube in your belly and can be done a few times a day or one long overnight session. Can you remember if they said haemodialysis or peritoneal dialysis ??

      I must stress I AM NOT A MEDICAL PROFESSIONAL AT ALL, all this is from my experience.

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    • Posted

      Sorry, I forgot to say, I can't offer advice on itching. I get it all the time but it's a side effect of the anti rejection medication from 2 transplanted organs.

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    • Posted

      It's good you got a night shift offered if it suits you. The hospitals in my area don't offer that, but they did have it when I dialysed in the States. I couldn't get overnight as I only needed 3 hours in those days.

      Good luck with it, don't forget the EMLA. Any other questions feel free to ask.

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    • Posted

      BTW, I found this about dialysis and itchy skin. It can mean you are not getting enough dialysis......could be relevant to you because you're not currently having dialysis but are coming close to it being a necessity

      Not enough dialysis: Talk to your healthcare team about your symptoms and find out if you are getting the right amount of dialysis. Sometimes too much or too little dialysis can lead to symptoms like dry, itchy skin.

      Have a look at the UK kidney foundation website. It has a tonne of info you'll find helpful. From the website below, scroll down a few paragraphs and under the heading "About kidney health" click on the word "lifestyle" and there's a lot of info...renal recepie book, kidney friendly cookbook, kidney care cookbook.

      It's at www.kidneycareuk .org

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  • Posted

    Well I've had kidney disease (from MS) for years. My take on this is I'm never gonna have dialysis because I'm glad to be out of this evil arse world in fact I welcome it. So I don't understand people who fight to stay alive , I certainly don't and will not.

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    • Posted

      So sorry to hear Rachel. Sometimes it baffles me too, but many (from candid conversations ive had with fellow patients) do it for family. Lots of them say it's for their grandchildren / great grandchildren, saying they don't want the youngsters to go through the grief of losing a loved one while they (the kids) are so young....old enough to know that they never see grandad any more but don't understand why. My best mate was 82 and on dialysis, but waited til his grand-daughter's 16th birthday then just didn't go any more. Passed away in his sleep a week and a half later.

      You're right though, it's a evil arsed world out there....

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