From KidneyStoriesBlog
KIDNEY STORIES: DINNER WITH MY SON AND CMS CUTS TO DIALYSISThis is my son Jim and I having dinner earlier this week. He lives in Phoenix now so I value the time I get to spend with him. As many of you know, I am a ESRD/PKD/dialysis patient that relies on dialysis to stay alive. Polycystic Kidney Disease is an hereditary disease. In my family, I have lost a cousin, an uncle, 2 aunts and my father to PKD. PKD is the most life threatening of all of the most common life threatening genetic diseases. 600,000 of us in America are effected. There are 12.5 million children and adults world-wide affected with cysts on their kidneys that inevitably lead to kidney failure. The number of people who have PKD is greater that the combined number of people with cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, Down’s Syndrome and Huntington’s Disease. It is twice as common as MS and 20 times more common than CF.
When your kidneys fail because of PKD, you have 3 choices: dialysis, transplant or death. Transplants are hard to come by and take time. I am on 3 waiting lists and the shortest time I have been quoted is 3 years and the longest is 6+. Death is what I am trying to avoid. I want to see my son grow up, progress in his career, (he works for the AZ Diamond backs in their PR department) get married, have children. I’d like to meet my grandchildren. I have to take dialysis 3x/week 4 hours a shot. I have to do this just to live. Without dialysis, I could die in as short as 3-5 days; at the outside maybe a month or two.
Recently, the Center for Medical Services that runs Medicare and Medicaid in response to the cuts passed during the Fiscal Cliff, proposed cuts to dialysis centers, their services and to Medicare patients who rely on dialysis just like me to live. A 2% cut was expected. A 9.4% cut was proposed, amounting to a $970 million dollar cut. The Dialysis Patient Citizens, The National Kidney Foundation and the PKD Foundation all strongly objected. These devastating cuts would have a drastic effect on the medical care we receive at dialysis centers. These effects could include a loss of access to quality care, lead to lowering of the standard of care provided, layoffs of vital dialysis personnel like techs and nurses, cause of closure and consolidation of dialysis centers, and worse yet the rejection of Medicare dialysis patients, who make up 82% of all dialysis patients. Imagine driving several hundred miles a week to obtain life saving dialysis because the center 5 minutes from your home closed.
The CMS knows these cuts are radical and dangerous. They have given members of the public until August 30th to object. All of the organizations that I belong to are urging you to contact your Congresspersons and Senators to register your objections. If we don’t object the CMS will assume we don’t care or the cuts are not harmful and after January 1, 2014, they will be implemented. You can use this link to send a letter: http://tinyurl.com/qet4zj2 . You can use this link to make a phone call: http://tinyurl.com/n46cfrp. You can write a letter. You can sign a petition: https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients. I am personally meeting with my local reps of my pols on this issue in the next two weeks. I have written a letter to the editor to my local and most large national newspapers and TV stations. I’m hitting the bloggers next (Daily Kos, Salon, Politico). I do this for my clinic mates that come in and leave everyday by ambulance, have diabetes, have lost mental acuity, are amputees, walk with walkers and canes, and just are not able to fight back or truly understand what is occurring. I do this for my son, my father, and my unborn grandchildren. Please use the links, write a letter, make a call or sign the petition. My son and I would like to keep having dinner together.
Diet Guidelines
From PKDHealthNotes.org, The PKD Foundation
General Diet Guidelines for the Peritoneal Dialysis Patient
For the most part, extensive dietary restrictions are not necessary for people on peritoneal dialysis. It generally depends upon, how often you do exchanges, volume of exchanges and type of solution used. Your peritoneal dialysis diet will most likely consist of: [Read more]
Living With PKD
From PKDWillNotBeatMe, a blog by Valen Keefer
I hopped in the car, turned the key, and the radio blared with the sound of Bruce Springsteen. “Born in the U.S.A.” I quickly looked over to the passenger seat at Dennis McCloskey, my now biographer, in complete astonishment. [Read more]
From AllAboutKidneys.com
A video presentation by Ronald D Perrone, MD – Professor of Medicine at Tufts Medical Center.
From CBC Hamilton, Canada
Arie and Joy Pekar are like any young couple with a new baby.
They've spent the last few months thinking of names. They read and learned about parenthood. They have no plans for their new son, who arrived June 23, other than for him to be “happy and healthy.”
There's only one difference — little Benjamin's father is in desperate need of a kidney.
For the Dundas couple, life has reached a perfect storm of sorts. Two weeks before Joy gave birth to their first child, Arie, 35, began dialysis for a genetic kidney disease. [Read more]
They've spent the last few months thinking of names. They read and learned about parenthood. They have no plans for their new son, who arrived June 23, other than for him to be “happy and healthy.”
There's only one difference — little Benjamin's father is in desperate need of a kidney.
For the Dundas couple, life has reached a perfect storm of sorts. Two weeks before Joy gave birth to their first child, Arie, 35, began dialysis for a genetic kidney disease. [Read more]
From Lansing State Journal, Lansing, Michigan
Just a few days out of kidney transplant surgery, Roxanne Frith was feeling stronger than either she or her doctors could have expected.
“My kidney functions are normal,” Frith said Friday on the phone from Mercy Health St. Mary’s in Grand Rapids. “The doctors are using words like ‘amazing’ and ‘spectacular.’”
But things didn’t go exactly as planned for the Lansing photographer and teacher, who has polycystic kidney disease and was scheduled to receive a kidney from her brother on Aug. 12.
During his final pre-surgery tests on Thursday, her brother learned he has late onset PKD and was not a suitable donor, meaning she would have to wait for a kidney.
Then, through a friend, [Read more]
“My kidney functions are normal,” Frith said Friday on the phone from Mercy Health St. Mary’s in Grand Rapids. “The doctors are using words like ‘amazing’ and ‘spectacular.’”
But things didn’t go exactly as planned for the Lansing photographer and teacher, who has polycystic kidney disease and was scheduled to receive a kidney from her brother on Aug. 12.
During his final pre-surgery tests on Thursday, her brother learned he has late onset PKD and was not a suitable donor, meaning she would have to wait for a kidney.
Then, through a friend, [Read more]
PKD Treatments
From PKD Clinic blog
Chinese Herbs Medicine Help To Polycystic Kidney Disease
I. What is Polycystic Kidney Disease?
Polycystic Kidney Disease, namely fluid-filled cysts, develop in the kidneys, making the kidneysa honeycomb appearance. Gradually these cysts replace the normal kidney tissue, enlarging the kidneys and making them less and less able to function normally. Eventually, the kidneys fail completely.
II. How to treat PKD?
There is no such a therapy which can cure the disease totally at present, all the therapies are trying to control the disease and help the patients to live a longer life with a higher quality. [Read more]
Polycystic Kidney Disease, namely fluid-filled cysts, develop in the kidneys, making the kidneysa honeycomb appearance. Gradually these cysts replace the normal kidney tissue, enlarging the kidneys and making them less and less able to function normally. Eventually, the kidneys fail completely.
II. How to treat PKD?
There is no such a therapy which can cure the disease totally at present, all the therapies are trying to control the disease and help the patients to live a longer life with a higher quality. [Read more]
From BeatKidneyDisease.com
Book Offer from Duncan Capicchiano, N.D. Naturopath, Author, Researcher
Upwey, Melbourne,
Victoria, 3158, Australia
PKD Research
From Renal and Urology News.com
RCC Prevalence 'Surprisingly High' in ADPKD PatientsPatients with autosomal dominant polycystic kidney disease (ADPKD) have a “surprisingly high” prevalence of renal cell carcinoma (RCC), researchers reported online in Nephron Clinical Practice.
Cordula Jilg, MD, of Albert Ludwigs University in Freiburg, Germany, and colleagues conducted a retrospective analysis of patients diagnosed with renal neoplasias from 1988 to 2011 using the Else Kröner-Fresenius registry. They identified 240 ADPKD patients who had undergone 301 renal surgeries. They found malignant or benign lesions in 17 patients, of whom 10 had dialysis over a mean 43 months prior to surgery. Sixteen malignant renal lesions (15 RCCs) were found in 12 of these patients. Of the 12s, eight had undergone dialysis prior to surgery. [Read more]
