I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: peleroja on August 05, 2008, 07:13:35 PM
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To the mods or anyone else who might know. My friend and I will be speaking at a PD only seminar (a similar hemo seminar has already been given), and one of the things my friend wants to talk about is PD: the forgotten modality. We were talking today and wondered if anyone has any approximate figures of how many patients, preferably worldwide, are on hemo and how many are on PD? I would rather not place this in PD as that might skew the figures (I assume). Luckily we're ahead of the game as the seminar isn't until September 16. Thanks in advance for any help you can give!
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Peleroja I don't know what the figures are but I would imagine that the percentage of patients on PD would be less than 20%. The problem is that PD fails for many patients from the start or starts to fail after a number of years.
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Have you checked with the American Association of Kidney Patients?
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The problem is that PD fails for many patients from the start or starts to fail after a number of years.
I'm wondering where this information came from. My friend's sister was on PD for 11 years, someone else I know has been on it 22 years. Every person is different, and what works for one will not work for another. Take drugs for instance. My friend swears by Vicodin. I tried it and it didn't even touch my arthritis pain.
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Not sure if this will help you, but it discusses both modalities -- Patient Modality Education: Transitioning From CKD to Dialysis -- http://www.medscape.com/viewarticle/552126_print
Does patient education influence modality choice? Again, this is from Golper, published in JASN in 2000. This was the national pre-ESRD education initiative in which 2850 patients were enrolled. And notice what happened. Patients were given choices, informed unbiased education -- 55% chose hemo, 45% chose PD. Now interestingly enough, if you look at what happened afterwards, of those who chose hemo, 98% actually went on that therapy. But of those who chose PD, only 75% went on that therapy. Now they listed the reasons as: change in health status, physician-driven change, and patient changed their mind. So this is an interesting point that even though patients choose, we don't seem to be able to fulfill their choices in all cases with PD. And I suspect this is because we don't move at an even pace to get their access placed.
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The predominance of PD or hemodialysis varies greatly by country. In Britain they really push to get patients to sign up for PD, but in the United States it really is the 'forgotten' dialysis modality.
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PD stopped working for hubby after 2.5 years and for some people it never works other people it works for many years. It was great that it worked for hubby first when he started dialysis because the closest hemo unit to us was over a 3 hr drive away!!!
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The problem is that PD fails for many patients from the start or starts to fail after a number of years.
I'm wondering where this information came from. My friend's sister was on PD for 11 years, someone else I know has been on it 22 years. Every person is different, and what works for one will not work for another. Take drugs for instance. My friend swears by Vicodin. I tried it and it didn't even touch my arthritis pain.
Peleroja I have estimated just purely on the basis of IHD posts about PD. For the two years that I've been a member of this forum I've read many threads about new PD patients and most seem to encounter insurmountable problems. resulting in finally having to do haemo. I've not actually done an audit of the posts, it's just a speculative conclusion from the impression I get tfrom reading them so it could be innacurate.
I myself became a dialysis patient two years ago and successfully went onto Cycler PD and I just hope it lasts as long as possible.
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Thanks everyone for the input, especially okarol. This will give Debbie a good starting place. As for me, I'm going to talk about the flexibility and portability of PD.
Oh, yeah, and about AAKP, after what they did to us, they are at the very tippy top of my "don't trust a single word they say" list. I don't know how many here were "members" of AAKP, but their actions recently were reprehensible.
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What did AAKP do?
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AAKP arbitrarily disbanded all their local chapters, without getting any input from their volunteers or those of us who were actually officers. They demanded that all money be forwarded to them, even though they had already received their standard 10% up front, and we had worked long and hard to get that money for the three support groups of our particular chapter. Upon being questioned by Debbie, Kris Robinson said that there was no such thing as "membership" in AAKP; it is merely a fund raising device. I'm still trying to get back my $1,000 lifetime "membership" fee. Although 2/3 of the board has to be a kidney patient, none of the people in the office have kidney failure or even know anything about kidney failure. When one calls with questions all they do is refer you to the website or offer to send you information. Support groups are desperately needed, especially for those who don't have access to the internet and IHD. That's why Debbie and I took over our section of the chapter and became the Kidney Beings.
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I never joined AAKP because I couldn't justify the $55 to join. I think IHD will become a very powerful voice in this crazy game.
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AAKP arbitrarily disbanded all their local chapters, without getting any input from their volunteers or those of us who were actually officers. They demanded that all money be forwarded to them, even though they had already received their standard 10% up front, and we had worked long and hard to get that money for the three support groups of our particular chapter. Upon being questioned by Debbie, Kris Robinson said that there was no such thing as "membership" in AAKP; it is merely a fund raising device. I'm still trying to get back my $1,000 lifetime "membership" fee. Although 2/3 of the board has to be a kidney patient, none of the people in the office have kidney failure or even know anything about kidney failure. When one calls with questions all they do is refer you to the website or offer to send you information. Support groups are desperately needed, especially for those who don't have access to the internet and IHD. That's why Debbie and I took over our section of the chapter and became the Kidney Beings.
This is the first I heard about this.
From a 2004 press release http://www.aakp.org/print-version/dsp_article.cfm?cat=7&subCat=20&topic=44&art=65
"AAKP Welcomes Two New Chapters
TAMPA, Fla. June 9, 2004 –The American Association of Kidney Patients (AAKP) is pleased to announce the formation of two new chapters, the AAKP Space City Chapter, located in Houston, Texas and the AAKP Lehigh Valley Chapter, located in northern Pennsylvania.
“The addition of two new chapters will greatly enhance AAKP’s ability to improve the lives of fellow kidney patients and their families. Local chapters allow our organization to provide community resources for kidney patients throughout the United States,” said Kris Robinson, executive director of AAKP.
AAKP Chapters are an integral part of AAKP. The Chapters reach out to patients in their local areas on a patient-to-patient basis and provide them with educational resources, which include chronic kidney disease (CKD), dialysis, transplantation and much more.
For more information, please contact the AAKP National Office at (800) 749-2257 or click here.
AAKP is the voluntary, patient organization, which for 35 years, has been dedicated to improving the lives of fellow kidney patients and their families by helping them deal with the physical, emotional and social impact of kidney disease. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances and assume more normal, productive lives in their communities.
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Bill, this all happened around March of this year. We were ordered to close our checking account by the end of April and forward all funds to national,. They even demanded that we send them all our stationery, which we paid for! There's no doubt in my mind that the stress of all this crap hastened Rita's death (she was president of our chapter).