fed up with dialysis

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Postby JMan » Tue Jan 22, 2008 11:38 pm

I recently joined a support group that isn't kidney related. More of a self help life choice/decisions charity organisation. I mentioned it in another post. Outsiders.. & being outside is something I think we get familiar with at times.

I always think of the song from Songs in the Key of X (on the Outside by Sheryl Crow if you interested.)

It's a refreshing start. Not for everyone maybe, but their publication, "Practical Suggestions" is inspiring.

http://www.outsiders.org.uk/practical-suggestions

It's really moved me forward over the past year... I have had help from the Renal Counsellor & my consultant. But there's some things they just can't..

I'm OK at the moment. How long will it last....
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Re: fed up with dialysis

Postby Bear » Wed Jan 23, 2008 4:46 am

tommc wrote:This is probably gonna be a rant. IM sick feed up of dialysis , pills and the hospital.

NO!!! surely NOT!...I find that hard to believe!! :lol: sorry :oops:
BUt yeah, aren't we all!??? Well those of us above moron level anyway.
Ya know, I can't even _dream_ without it impinging on me!! I put an item on my blog about it - I dream about going surfing with old mates. In the dream we're all only about 30ish, so that part of the fantasy is fine.. :D ...but then I go to do something like wax the board or put on a wettie...& I look down & there's the bloody trans-lumbar bloody catheter!!!
The disappointment in the dream is continued on the awakening. Doh!
ANyway, I'm sure a lot of us get "fed off & cheesed up" (as a mate used to say) with it very regularly. SOme days it's just as well the gun laws are what they are...and my gun-owning mates have dutifully handed theirs in! :lol:
waves...Bear
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Postby squiggles » Thu Jan 24, 2008 8:46 pm

Sending you love and hugs and hope things are a little better for you this week xxx :)
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Postby nicola » Thu Jan 31, 2008 5:04 pm

Hey tom

Know exactly what you mean, its c..p and like you say on the days where you feel so awful and people say what you look great i so want to punch them and that is when this crummy disaease really naffs me off, the fact that your insides are tearing you apart and on the outside hey whats the big fuss, damm it.
You kick off if you need to why should we hold back for everyone else, there not going through it are they, they dont know the half of it and like you say if people want to join the txp list do it, dont dilly dally................!!

My dad was going to be a donor for me last yr but 2wks before the op they stopped it cos they found a cyst type thing on one of dads sidneys, so they repeated an mri scan in dec and are now going to do a biopsy to see what it is, they are 99.9% certain its nto cancerous, yeah whatever do the test then tell us that, in my eyes im happy its not happening found it difficult to take that off dad, but i will be honest with you after 10mths on the blasted machine desperation is kicking in big time, been on the txp list since june last yr, have already had kidney txp in april 83, so did very well, but hey why shouldnt i, enjoyed my life to the full with the txp thats what its there for, look i really hope you get that call very soon and get the life back you so deserve
take care
nicky
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Postby eliznew412 » Thu Jan 31, 2008 7:09 pm

I haven't even got to dialysis yet but I've already felt 'under the system' for most of my life, though perhaps in subtle and unspoken ways. It doesn't help to feel a sense of self worth and acceptance in society if doctors have beem so rushed with patients at predialysis stage that as a young person I felt very isolated. I never met doctors in ordinary situations/ socially as a young person and was scared of them. I had to smash a few barriers through but its required a lot of courage and has been very tiring. It looks like Outsiders has really filled a desperately needed gap. I was not physically very ill as a young person but the diagnosis and doctors was quite enough to make feel repressed and different to a degree that really wasn't necessary. I'm sure I'll find dialysis a shock but at least medics and some others have had to get to know the real Liz not just the presentational or 'prone to depression' one. I reckon a lot can be done to cut down on the type of stress and isolation I suffered. I wouldn't wish it on my worst enemy.
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Postby Angel » Thu Jan 31, 2008 10:41 pm

One of the things that is getting to me is the sheer amount of time it takes up. I find on the whole I can't plan to do much on a dialysis afternoon as I often feel pretty rough, therefore I plan my life on the other spare days. The rub comes when I am trying to fit in other hospital appointments, degree work and oh yes having fun as well as the usual mundane chores of life. :)

Of course it is a boring and unpleasant treatment which I have been doing way too long, but from all accounts it is likely to be like this for a long time to come. I am positive about it at the moment as some tweaking of drugs has made a difference, but when I am tired, down and exhausted then it becomes a very heavy burden indeed.
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Postby xotrueeloveeox » Fri Feb 01, 2008 7:03 pm

See thats what I'm afraid of too. I'm only 16, and I try to lead a normal teenage life. Which is very difficult. But when I start dialysis in a month or so, I don't know how I'm going to be able to fit everything in..I was told I probably wont be able to do PD because I'll only be on dialysis for about a month or so, so it wouldn't be neccasary. But then I have school, and friends, and family. And I think it's deffinetly going to wear me down to no end. Im just a little nervous to see how this is all going to plan out.
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Re: fed up with dialysis

Postby Mac# » Tue Jul 03, 2018 7:03 pm

Hi there everyone.
I was just searching online when I came across this site. I am totally fed up with dialysis, I have to travel 17.5 miles there and back 3 days a week. I started out doing two hours which left me feeling like superman compared to how I was feeling but they upped my time to fours and it totally left me wiped out. I would get back home (eventually. Waiting up to 3 hrs for transport) and just crash for the remainder of the day, so as a compromise, they now let me do 3 hrs but it still leaves me feeling washed out.
I got an infection in my fistula when the needle punched through, leaving me unable to move my arm. I had to take a week off until it started to heal. The staff weren't happy with that, but tough luck I said..
Now my arm is hurting again, every time they insert the needles and remove them, I've gotten to the point where I've lost the will to carry on.
I was offered to go on the transplant list for a deceased donor but had to turn it down. I was excited at first but then I couldn't get this horrible feeling out of my head that something would go wrong. This is because so far everything has gone wrong. When they did my fistula, he put it on the wrong wrist then it failed, they then operated again to tie it off. I then had to go for another op to do my fistula on my right arm and guess what, No it didn't fail but I did feel every single cut, I even felt the surgeon pulling on the vein and artery. I was screaming and still he continued until the anesthesiologist gave me something more to numb the area..
So you can see why I fear something going wrong??
|I'm at my wits end, I hate having dialysis, because of how it makes me feel, I have no life at all as I have to go to bed early as I'm up for 4am on the morning of treatment. I don't know what to do anymore, I've lost the will to go on..
Sorry for the moan, but I have no one at home, I'm on my own..
Mac#
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Re: fed up with dialysis

Postby wagolynn » Wed Jul 04, 2018 3:30 pm

Hi Mac,

I think we all have periods when we feel as you do but there aren't any other options to dialysis.

Have you enquired about home dialysis? You would have to go through a training period (do it yourself in the unit).
Have you enquired about dialysing at a different time or location?

Are they using the Button Hole method for your needling? (the needles go into the same holes every session, a bit of extra care is needed on the hygiene front)
Button Hole is much more comfortable, and the fistula will last much longer.

Presumably you had to go to four hours because you had a lot of fluid to remove, dry weight, initially, is an intelligent guess, and can be wrong.
Have you signs of fluid left after a session? (can you make dimples around your shins, and if so how far up your leg are they, have you fluid on your lungs)

Transplant - these days they test kidneys just before a transplant, and it is quite a serious operation so only experienced surgeons perform them, the risks are quite low.

One last thought, remember, as part of kidney failure, everyone tends towards depression, we just have to learn to live with it, and remind ourselves the depression will make us look on the bad side of everything.

Come back and moan some more, if it helps or if you have any questions.
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Re: fed up with dialysis

Postby AmandaClare » Wed Jul 11, 2018 3:38 pm

Hi Mac

It sounds very tough. Hang in there.

On the transplant issue, is there any harm in going on the list? The wait is long and you might as well be on it in case you change your mind. Plus in the process you'll learn a lot more about transplantation including stats etc and be able to make a fully informed choice.

Just about everything went wrong for me too. Kidney failure at 14, PD caused one bout of peritonitis and later masked the symptoms of appendicitis so that I very nearly died. PD had stopped working anyway so onto haemo, which left me really drained, anaemic, skeletal and so ill I couldn't go to school even when I wasn't on the machine and was sleeping all day.

Then I got a transplant and have had 30 years and counting of pretty good health, got an education, worked etc. 'Past performance is not a guide to the future...'

All the best, keep posting.

Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: fed up with dialysis

Postby Mac# » Thu Jul 26, 2018 4:05 pm

Hi and thank you both for the replies.
I was diagnosed with polycystic kidneys at the age of 26, I was getting severe migraines all the time which would just suddenly start and wind up with me in hospital for a week. Eventually after a scan they found the cysts on my kidneys. At first other than the head aches, I was in decent health. I had had high blood pressure since I was 18 but then the pain started in my lower back. Eventually this got so bad they had to have nurses visit 3 times a day to inject morphine to relieve the pain, now I have to do it myself 5 times a day.
It was just after Christmas 2018 when I started to look very ill and after seeing my specialist I got a call that evening saying I needed to Kendal westmorland hospital (Lancashire) for dialysis the next morning. I felt so good afterwards but once they increased my time to four hours I felt terrible..
I have a fear/phobia of needles despite having to inject myself. I just can't do it into a vein so if I decide to have it at home I would have to hire a nurse to put me on the machine which is something I am looking in to and plan on speaking with my specialist about when I see him next Aug (2018). The nurse once mentioned doing the button hold thing but nothing came of it, they just stick it where ever and now my arm is hurting again to the point I can't bend it fully without pain..
AS I mentioned, they did offer for me to go on the transplant list for a deceased donor which I was made up with. But then I just couldn't get this feeling of doom out of my head, It was overwhelming and scary, I just couldn't get past it. I mentioned it to my doctors and all they said was it was normal to feel this way.. It didn't help though so I decided to turn it down until it was really necessary then I would look at it again..
As you can imagine I've read every bit literature t I could get my hands on and with the net there is a lot..
One issue I should of mentioned is I have a very poor gag reflex or should that be overactive one, not sure but the point is when I try to take my oral meds I throw them back up as I try to swallow them so it would be a worry because of the meds needed after transplant, top that with a very bad memory after being hit on my head by falling concrete I regularly forget to take my other meds which would be very bad from a transplant point of view..
I'm not depressed as such, I've come to terms with everything years ago, it's dialysis that I'm fed up with. Since I first wrote on here, my legs now hurt after treatment. They don't have to take any fluids as yet and I'm told things will get worse when they start.. I'm now 51 (yoa) and I can't begin to imagine how you have coped since the age of 14, you must of been very brave and I am glad you got your education and manage work, I had to give in work a few years ago now and that has been the hardest thing to deal with. I loved driving my coach everywhere, even europe (Italy) but they took my license away when they changed the rules and I got caught up with it and despite letter from doctors and specialists they refused to budge on the issue and since I was in the construction trade prior to driving I couldn't do that kind of work anymore due to pain..
I feel things would improve if I was allowed to go back to two days a week instead of the current three days as then I would get a rest in between treatments which would allow my arm a chance to heal.. At the end of the day I will get past all of this but right now, I am just fed up. I saw an article a bit back that stated dialysis should be tailored to each patient as opposed to doing the same for everyone but I can't find it as I was going to show it to my doctor..
Congrats on 30 years transplant I'm hoping that more research is going into growing our own kidney which is going very well and fingers crossed they will get past the problem of getting the urine out it's all very interesting stuff and should they succeed, you wouldn't need anti rejection drugs as the body would recognise it as your own..
Anyway once again, thanks for your replies all the very best to you both..
Sincerely Mac#
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Re: fed up with dialysis

Postby wagolynn » Fri Jul 27, 2018 3:39 pm

Push the Button Hole, you will find getting on and off much better.

The three times a week is a compromise, ideally we would have dialysis every day! after all working kidneys are at it 24/7.

Pain in kidney area - I don't think this is normal for polycystic kidneys, as far as I know the pain suggests infected cysts, these are usually treated with antibiotics.

Gaging reflex - there may be some physiotherapy you can have for this but just practice should overcome it, unless there is something physically wrong. Get your GP to have a look.

The grotty feeling after dialysis is thought to be due to the big chemical changes, and anticipation of trouble.
Missing a day would make the chemical hit worse - more to be removed.

Depression - with kidney failure we all tend towards depression, to varying degrees.

On my bad days, I look it this way, without it I will be dead in about 10 days.

Are you controlling your Phosphate, and Potassium intake?
Have you got your BP down?

Best wishes.
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