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Long term dialysis

PostPosted: Sun Feb 10, 2019 1:16 am
by Duker5
Hi,

I've not been on here for a long time but I've been on dialysis for 5 years and 6 months now and I'm really really fed up of it and get no support off anybody except one person that I know, my family is useless and not one of them is supportive they are the most selfish people I have ever known...

And my ex left me 3 years 5 months ago and took my kids and I barely get to see them either, I've numerous calcified tumours on my leg, bottom of my back and my right shoulder.

Frankly I've had enough of dialysis and nothing anybody could say to me about anything would help how I feel, I'm constantly angry and I want to just tell EVERYONE to f*ck off and just leave me alone.

For example I eat on dialysis and it seems that everytime I pick up my food to eat it someone comes walking over to disturb me and ask what I've got and I just want to say, will you just f*ck off and let me eat!!! And whatever I've got is none of your damn business!!!!

As I said I am very angry pretty much 24/7 and nothing anyone can say to me will change that or so it seems.

Perhaps the real only way out is to end it all but I don't have the guts!!! And despite me saying it to others (family members that don't give a sh*t) they don't take it seriously or they just don't give a f*ck....

Anyone any clue what I can do as I've had enough.

Re: Long term dialysis

PostPosted: Sun Feb 10, 2019 3:26 pm
by wagolynn
Hi Ducker5,
I have been dialysing for 6+ years, and would agree with you that dialysis is hard to describe it as fun but it doe's help to keep us alive.

One of the problems we have as kidney failure patients is, it's not like having a broken arm or leg, this shows but to the inexperienced eye we look normal or maybe sun tanned, so people assume we feel the way we look.

Kidney failure also pushes us towards depression causing us to look on the downside of life, which doe's not makes us good company unless we try to make an effort to resist the depression.

I have invested in an Amazon Kindle as I found reading a normal book hard work with just one hand available, so now dialysis is reading time for me, unless there something interesting on TV.

People asking what you are eating, if it is the nursing staff or the dietician, will be trying to workout why you have the calcification problems, the usual advise is to reduce the amount of Calcium rich foods (mostly dairy products), down to almost zero in an effort to prevent calcification.
Fully functional kidneys are involved in the control of Calcium levels but of course ours are not doing this.
Phosphates is involved in the control of Calcium, before we had kidney trouble eating the normal range of foods our phosphate levels were controlled by our kidneys but now our kidneys are unable to do this, and dialysis doe's not remove Phosphates so we have to adjust our food intake to reduce our Phosphate intake.

Have you got a copy of 'Eating well with Kidney failure by Helena Jackson, Annie Cassidy, and Gavin James' it is very good at explaining why we have to restrict our diet as well as offering some good recipes that are OK for us to eat?

OK, I think at first many people feel angry when they find they have a major health problem, why me?
However, being angry doe's not help in anyway, in fact it get's in the way of our treatment, and any help.
So when you can arrange to be alone, have a good moan to yourself about your condition but then shut that down, finish with it, no more being angry, it's just a waste of time, and energy, and solves nothing.

In practice, counting to 10 may come in handy now and again but this will go, and life will be better because people will not be trying to avoid you because of your anger.

In the mean time, come on here, and let your hair down if that helps or if you have questions if its possible I am sure some one will have the answer.

Best wishes

Re: Long term dialysis

PostPosted: Tue Feb 12, 2019 8:30 am
by JMan
Hi Duker..

Sounds like you do need some external help. Dialysis is shit.. I'm back on dialysis after a failed transplant in 2005.. I'm not even going to say there are people better/worse off than you cos that's no help, a fact, but no help.

Have you tried counselling.. KidneyCareUK offers a phone counselling service if you don't want to deal with your unit/or they don't have a counsellor.. Its difficult to have to deal with the same old same old again and again just to stay alive... I've used them a few times.. And you can self refer I think.


https://www.kidneycareuk.org/get-suppor ... t-service/

Just give em a ring or email today.

I have to say family are often the ones that let you down.. Either because they don't think your that ill, or don't know HOW to help..


I'm coping at the mo, relationship, and just living is stressful.. I seem to be throwing energy that I do have into doing (it avoids the thinking) when I can, and I still get phases of depression, frustration, anger..


Hope you can find a way forward.

Best of luck

J





Duker5 wrote:Hi,

I've not been on here for a long time but I've been on dialysis for 5 years and 6 months now and I'm really really fed up of it and get no support off anybody except one person that I know, my family is useless and not one of them is supportive they are the most selfish people I have ever known...

And my ex left me 3 years 5 months ago and took my kids and I barely get to see them either, I've numerous calcified tumours on my leg, bottom of my back and my right shoulder.

Frankly I've had enough of dialysis and nothing anybody could say to me about anything would help how I feel, I'm constantly angry and I want to just tell EVERYONE to f*ck off and just leave me alone.

For example I eat on dialysis and it seems that everytime I pick up my food to eat it someone comes walking over to disturb me and ask what I've got and I just want to say, will you just f*ck off and let me eat!!! And whatever I've got is none of your damn business!!!!

As I said I am very angry pretty much 24/7 and nothing anyone can say to me will change that or so it seems.

Perhaps the real only way out is to end it all but I don't have the guts!!! And despite me saying it to others (family members that don't give a sh*t) they don't take it seriously or they just don't give a f*ck....

Anyone any clue what I can do as I've had enough.

Re: Long term dialysis

PostPosted: Wed Feb 13, 2019 8:23 pm
by rheaybou
Hi Ducker,

Dropped you a message and think I remember you are at Doncaster. Maybe it won’t help, but if you need another face to vent at and maybe someone who understands dialysis to talk to then let me know and I can try and call past.

Dialysis is bollock. But there is always a glimmer of hope of transplant.

Re: Long term dialysis

PostPosted: Fri Feb 22, 2019 6:25 pm
by per156
Hi Duker !

Sorry to hear about your bad situation but hope they´ll soon be able to offer you a transplant. It seems like you have an excess of calcium in your blood which is very common among patients with kidney failure. You can talk to your doctor about medication to help with this as cinacalcet and etelcalcetide and of course phosphate binder is necessary as well. Kidney failure gives overactivity in the parathyrea glands leading to raised calcium- and pth-levels. The best cure is a parathyrea operation (also something for a discussion with your doctor), I had this last autumn with good results, now I only take a small amount of calcium supplement but before it was high doses of etelcalcetide and phosphate binder. Hope you´ll be able to sort this out and that you´ll feel a lot better !

Best regards
Per