(UNIQUE IN MEDICINE FOR HAVING A INCREASING!!!! MORTALITY RATE - HIGHEST IN THE INDUSTRIALIZED WORLD)
(Kidney dialysis is procedure for cleaning the blood of people who have kidneys that failed. There are different forms of dialysis, but most of this will be about the most prevalent form called hemodialysis. Blood is pumped through a filter called a dialyzer to remove toxins and waste.)
I'm the father of a kidney patient. I'm writing this for people who may not have a relative or friend on dialysis; but maybe as shocked, appalled, and disgusted as I was when I found out the conditions patients suffer under. How can you help? By writing some of the contacts I've provided at the bottom of the page. Kidney patients are a minority in this country. Kidney patients who are educated about their care and speak up, are a minority within a minority. They need your help. Many have spoken up, only to be harassed or ignored. Unless others become involved, the road to better care for many of these people will be a long and hard one. It is sad to say, but too many politicians in this country only seem to understand two things, votes and money. Kidney patients are few in numbers, and they surely don't have enough money to get anybody's attention. By adding your voice, maybe decent care can become a reality sooner, rather than later. (Suggested subjects to write about: Lack of Standards of Care, Lack of Choices in care, ending reuse, and passage of Bill HR1004) (Lack of standards of care include such things as patient to staff ratios and lack of training for staff; information on reuse can be found in the LINKS section) (Sample letters available under To Write Congress link)
NEW!! SUPPORT DOCUMENTATION FOR SLOW NOCTURNAL This is a collection of documentation to support the slow nocturnal form of dialysis. It is a collection of articles that has impressed me over the years. USE IT TO GET SUPPORT FOR THIS TREATMENT IN YOUR COMMUNITY!!!!! Write letters to the editor, give this to staff, other patients, and friends. slow nocturnal articles
OTHER VOICES
Patient and Psychology professor This is a shorter, but well written article by Dr. Sollod, a psychology professor and patient. It gives a great overall view of the state of dialysis in this country.
Dr. Kjellstrand speech This is a little bit longer than the article above. But it gives excellent insight into what is the number one reason for the highest mortality rate in the industrialized world. That reason is the short, fast dialysis performed in this country.
Frank Brown's story Frank Brown has been a kidney dialysis patient for approximately the last 25 years. I believe somebody on dialysis this long, deserves to have his story told. This is the longest article under OTHER VOICES, and I've broken up into 4 parts. This is a raw, unedited, and heartbreaking story. There is some paranoia, and speculation in this story. I hope that is what it is, just paranoia and speculation. But even without it, this would remain one man's eyewitness accounts and testimony of what goes on behind the scenes in dialysis.
On the night of February 27, 2003 Mr. Brown passed away. I believe he is in a peaceful place where he no longer has to suffer and endure. May his courage, fighting spirit, and words live on. more...
Brent Smith I got
to know Brent from his internet postings. He was one of the most
courageous and savy people I had the pleasure of knowing. Patients
everywhere will always owe him a debt. He had the courage to stand
in front of the U.S. Congress and give his testimony on conditions in the
dialysis industry. I had the honor of meeting some of his family
and want to thank them for giving me permission to link to their website.
HR1004 (formerly
HR1759
)
SUPPORT DOCUMENTATION
This bill does have a downside. It doesn't support more hours of
treatment, just more frequent treatments. But I believe it should
be supported because at least it is a step in the right direction.
I did ask a source I trust what she thought of more frequent dialysis and
here was her reply:
"I did go to a seminar years ago and one of the countries discussed was Italy and how their home patients run 2-3 hours a day, 5-6 days a week. From what I remember, the outcomes were pretty good as even short daily dialysis kept excess fluids and waste products from accumulating in the body. I guess it would also depend on how much acid & *bicarb, ( the baths needed) that the bill would allow the patient to buy each month. That would dictate how often and for how long the patient can run. I think more studies need to be done and maybe this will open up that area for this." I WAS REMINDED THE DISCUSSION WAS 8 YEARS AGO. WHEN WRITING ABOUT THIS BILL, IT MIGHT BE WORTH MENTIONING THERE IS A WAY TO IMPROVE IT. THAT WOULD BE TO PAY FOR OUTCOMES AND NOT JUST FREQUENCY. ONE THING HAS NOT WAVERED IN THE THREE YEARS I'VE WATCHED THIS, AND THAT IS MORE DIALYSIS EQUALS BETTER HEALTH. (it is clear to me how this could be a great bill, what is not clear is what can pass congress)
*bicarb is part of the wash around the filter or dialyzer
LINKS
CONTACTS
To write congress This link can take you to a website that will allow you to contact your federal representatives by just entering your zip code. A second link also contains a sample letter that can be copied or used for ideas when writing. And a third link has been added to a flyer that has been started.
email: DSmith2@cms.hhs.gov - Dennis G. Smith, Acting Administrator of CMS (Center for Medicare and Medicaid Services)
email: WPizzano@cms.hhs.gov - Winnie Pizzano, Acting Director of CMS Public Affairs
email: RWeinstein@cms.hhs.gov -Rachael Weinstein, RN Director, Clinical Standards Group
(APRIL 3, 2003) The Texas patient, Kathy Lewis from Texarkana, has passed on more....
CMS
meeting (August 15, 2003) The CMS (Center for
Medicare and Medicaid Services) meeting has occured. Will it be a
repeat of the 2000 Senate hearings where a lot was said, but nothing happened?
At this point we can only hope not.
(AUGUST 21, 2003) Texarkana in the news for patient
dumping (AGAIN!) latest
story..
see
more of the story.......
(JANUARY 22, 2004) Texas patient wins lawsuit
story
(FEBRUARY 6, 2004) Dr. W. Kenneth Bays, patient
advocate and Senate Witness has passed on Dr.
Bays
BESIDES THE FACT THAT THOUSANDS ARE DYING NEEDLESSLY, REMEMBER ALSO
WHAT IS GOING ON HERE COULD BE APPLIED TO WHAT IS GOING ON ELSEWHERE IN
MEDICINE. THIS IS AN EXTREME EXAMPLE OF WHAT CAN GO WRONG.
BUT LESSONS LEARNED HERE AND CHANGES MADE, MAY SOMEDAY APPLY TO OTHER AREAS
OF MEDICINE.