Search found 1735 matches

by amanda in CA
Mon Oct 07, 2013 12:16 am
Forum: The KPG Forum
Topic: Kidney Charities & educating Joe Public
Replies: 11
Views: 16626

Re: Kidney Charities & educating Joe Public

For those who say they have lost friends. No, you haven't. They were never your friends anyway. Getting ill just proved something that was already a fact.
by amanda in CA
Sun Sep 15, 2013 2:29 pm
Forum: The KPG Forum
Topic: Adult with Prune Belly Syndrome
Replies: 4
Views: 9571

Re: Adult with Prune Belly Syndrome

Not sure why joining a group with people from US would be a problem. A medical condition is a medical condition.
by amanda in CA
Sun Sep 15, 2013 2:27 pm
Forum: The KPG Forum
Topic: Sign of getting worse?
Replies: 29
Views: 41508

Re: Sign of getting worse?

Wholemeal bread is high in phosphorous. The general advice is to eat products with refined grains.
by amanda in CA
Mon Apr 22, 2013 10:29 pm
Forum: The KPG Forum
Topic: Can you suvive on dialysis indefinately
Replies: 24
Views: 62775

Re: Can you suvive on dialysis indefinately

are you genuinely interested or are you just trolling given your user name is trollking? :) I have had kidney failure for twenty plus years. for 10 of those, I had a transplant. dialysis keeps a person alive but only gives about 10% kidney function equivalent and cannot do all the hormonal actions o...
by amanda in CA
Mon Apr 22, 2013 10:23 pm
Forum: The KPG Forum
Topic: Life at any price? Good idea?
Replies: 25
Views: 27514

Re: Life at any price? Good idea?

No free-loading for me when I visit the UK in June, a British citizen, currently living in the US, who has paid into the system in the past. I have just shelled out over £500 to pay for my dialysis supplies when I visit. Now the moment I say that I am resident, it would all be free. I expect that lo...
by amanda in CA
Mon Apr 22, 2013 10:18 pm
Forum: The KPG Forum
Topic: Life at any price? Good idea?
Replies: 25
Views: 27514

Re: Life at any price? Good idea?

Look, it is not greed for life. you didn't ask for any of this. if you don't exist, how wonderful you have been in saving money, will be considered by no-one. I cost a lot of money, have done so for twenty plus years but I have no desire to be a moral martyr. Enjoy the fact that you are here, and do...
by amanda in CA
Mon Apr 22, 2013 10:14 pm
Forum: The KPG Forum
Topic: Starting HD soon
Replies: 4
Views: 4973

Re: Starting HD soon

my strong recommendation is to do home hemo if possible. you have control of your life, dialysis is more frequent and gentle, and the longer you do, the better long-term outcomes are being demonstrated. so, if you have a chance to do nocturnal using preferably NxStage machine (which is portable so i...
by amanda in CA
Mon Apr 01, 2013 1:19 pm
Forum: The KPG Forum
Topic: new kidney failed
Replies: 12
Views: 15511

Re: new kidney failed

PD is a good option, for ease of use, but depending on whether she will be a candidate for another kidney, home hemo could be a good alternative. it had been shown that in some cases, home hemo, can give survivability comparable to a deceased donor kidney transplant, whereas PD gives no better than ...
by amanda in CA
Sat Mar 30, 2013 2:10 pm
Forum: The KPG Forum
Topic: Trusted Tradesman
Replies: 12
Views: 14330

Re: Trusted Tradesman

I imagine there is little interest because the stumbling block with transplantation is short term, i.e. in the early days of transplantation and the focus is getting people beyond that. Longer term issues are chronic rejection and I know that this is studied. The need and benefit is to look at why t...
by amanda in CA
Fri Mar 15, 2013 12:24 pm
Forum: The KPG Forum
Topic: hope someone has an answer
Replies: 10
Views: 13308

Re: hope someone has an answer

one more thought. Given that you are new to dialysis and take furosemide, I gather that you still have residual renal function and still pass urine? If so, there is a degree of flexibility with fitting the exchanges into your life. I wouldn't stick rigidly to times particularly at night. It is about...
by amanda in CA
Fri Mar 15, 2013 12:14 pm
Forum: The KPG Forum
Topic: hope someone has an answer
Replies: 10
Views: 13308

Re: hope someone has an answer

Mandy V is right. What is the reason for mot doing a longer,dwell at night? do you absorb too much? If so, maybe you could ask your nephrologist to prescribe icodextrin (Extraneal), a long-dwell PD solution for use at night. I do not sleep well either and have do e CAPD and used the cycler. I would ...
by amanda in CA
Thu Mar 14, 2013 12:23 pm
Forum: The KPG Forum
Topic: Neph visit 11th March 2013
Replies: 20
Views: 25464

Re: Neph visit 11th March 2013

to me, the waiting game for to kidneys fail is worse. In a lot of ways ,it was a relief to start dialysis, both to feel better and actually encounter the unknown that I had had been worrying about. the anticiapation was worse than the reality, but I was doing PD andI don't think that this,chamge wou...
by amanda in CA
Wed Feb 27, 2013 2:06 pm
Forum: The KPG Forum
Topic: trying to get a handle on this
Replies: 1
Views: 3343

Re: trying to get a handle on this

Unfortunately, yes. the question is, are you getting adequate dialysis? how is your kt/v? do you otherwise feel well, since the issues that you are getting, eg RLS, sleep apnea are very common in dialysis patients. people who have done longer treatments using home hemo have reported resolution of th...
by amanda in CA
Sun Feb 24, 2013 10:35 pm
Forum: The KPG Forum
Topic: Symptoms of CKD your experiences
Replies: 17
Views: 50957

Re: Symptoms of CKD your experiences

I have not hear of these symptoms being related to CRKD at 30% function. Yes, CRKD does cause bone and joint problems, but it takes a good few years to do so at ESRD stage 5. 30% function from the point of regulating factors which provoke symtptoms in ESRD is not that low since in a healthy individu...
by amanda in CA
Sun Feb 24, 2013 10:19 pm
Forum: The KPG Forum
Topic: Severe back pain/collapse
Replies: 17
Views: 23506

Re: Severe back pain/collapse

I really think that you need to stop attributing every ache and pain to kidney disease. I do not know how old you are, but what you are describing sounds like a muscle spasm. Problems from degneration of intervertebral discs is very common in the population in general. Put simply, our spines were no...