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  • The only thing that worries me about this - because most of it sounds like an improvement - is that they are going the route of trying to get everyone on peritoneal dialysis because it is cheaper.  It is NOT for everyone.  I had two p.d. catheter surgeries.  It was painful for me with either cath and when someone is already dealing with having to be on dialysis in the first place and all the changes they are going through I do not think everyone can deal with having to administer dialysis to themselves.  I think having to do it every day is more stressful than 3 times a week.  Older people shouldn't be doing it due to the fact that they are more likely to make a mistake and get peritonitis (sp) and it is harder for them to remember and take baths, etc.  Plus their immune system is lower than younger folks.  Even if you are young the fear of messing up when connecting or not being sterile enough is very stressful and then you have to spend the money to treat peritonits and that cost a hospital stay and a lot of missed work not to mention pain for the patient!  In Canada you have no choice but to do peritoneal dialysis and that is horrible.  I would really hate for the US to go this route!!!!  If I ever have to go back on it again I do  not want to have to do P.D.  I have horrible scars and scar tissue lump.  The surgery is also very difficult recovery depending on where they put your catheter and where they cut you.  This worries me very much.  Anyone is able to P.D. right now and every doctor pushes it so them talking about people not having access to it or knowing about it?  Not the case.  People aren't good candidates or don't want to in a lot of cases.  The other thing is that I worry about the standard of care when it comes to transplants.  If you speed up the process for some people that is good - you can get to them before they die waiting in line!  But if  you lower the standards for the kidneys you use that can cause a lot of trouble for the recipient as well.  I worried that with the national exchange program that I might be getting a kidney that wasn't the best match for me, because they wanted to make it work out so that more people could get a kidney through the chain, and I might be making a better decision getting someone tested that was a blood match for me to start.  They say that they don't do that, but they do try to work it out so that everyone can get a decent match.  My point is that making it easier for people to get kidneys that are on the waiting list before they die is awesome - but don't lower the standards of choosing kidneys for those who are expected to be able to survive a bit longer.  I think that the thing that would help us more than anything is living donors!  People being educated on living donor donations - that you can live with only one kidney and how many people need them.  But I am very happy that they are talking about giving more attention to kidney disease!!!!  They are talking about getting the word out there!  I have always wondered why there was hardly ever talk about kidney disease when it is one of the top causes of death in the US!  You always hear about AIDS and cancer but hardly ever about kidney failure and dialysis!  Get the word out there!  I was very happy to hear that part of the plan!  You hardly ever hear of fundraisers for kidney disease unless you know someone who has it and they tell you about it!  

    • As far as your thoughts on the push for PD, we've had reasonable success with "pushing" it here in Canada. The goal has been to get 30% of the dialysis population on it. Not sure how close they are, but the freedom of choice is there. I know where I live (in the province of Ontario where PD was invented) they have a fairly detailed step by step process for you to go through with your doc and your family to help you make the decision regarding dialysis modality. And doctors have no vested financial interest in any form. They don't run/own any clinics. And you are also free to try the other modality if you so desire. There definitely can be advantages to PD, but as you said, not for all. And up here we're all free to choose what we want. And we get decent education on all the options.

       

      • well, that makes me very happy to hear that!  i am sorry that I was given incorrect information!  it was actually my last nephrologist who told me that they don't even do hemo at clinics in canada anymore and that they put everyone on p.d.  I guess she meant they prefer people to be on p.d.?  But she really did say it like that.  I guess she was just trying to get me to want to do it.  I am not saying she is a bad doctor or person, but I did feel pressured and i wish i had not tried it either time.  I am very happy to hear that you definitely have a choice in your modality.  i was wondering though - do they prefer you to do at home hemo or do they care either way - that is if you do clinic hemo or at home?  thank you so much for your response and i apologize for offending you if I did.  I actually think Canada is pretty cool and have liked all the Canadians I have ever met!

    • And I was surprised at how many people had no idea what dialysis was and hadn't even heard of it before.  How little people knew about kidneys and kidney health or problems.  Prevention is very important.  High blood pressure is another big issue.  I never knew that it led to kidney disease, because I never had it until I finally did get it!  I thought you only got high bp if it ran in your family or if you ate horribly and never exercised.  Okay!  I will let you get back to your day now and i will try to get back to mine!

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