PETITION PROTESTING CMS RULE LIMITING AMOUNT OF FLUID REMOVED DURING DIALYSIS (13mL/kg/hr)
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My name is Gary Dorsey. I am 38 years old. I have been a hemodialysis patient since I was 15 due to end stage renal disease, also known as kidney failure since July 25, 1995. To describe hemodialysis briefly, it is a medical procedure in which toxic blood is removed from the body. It runs through an artificial kidney where waste and excess fluid are removed. Then the clean blood is returned to your body. I have to conduct dialysis three hours a day three days a week for the rest of my life, or until I get a transplant. As do more than 400,000 other Americans.
In more than 20 years of dialysis I have never had any complaints. The Centers of Medicare & Medicaid Services (CMS) have recently put a stranglehold on dialysis centers across the United States forcing them on the maximum amount of fluid that can be removed from each patient during one dialysis treatment. It is known as the 13mL/kg/hr formula. Meaning a patient's fluid removal amount can not exceed 13 X their dry weight X prescribed treatment time. That means I personally can not have more than 1.9 kilos removed during a three hour treatment since my dry weight (a person's normal weight with functioning kidneys) is only 51 kilograms. Technically only 1.4 is removed because .5 of that is saline used when they rinse my blood back at the end of the treatment. I only run three hours because that's all I need for my blood to be adequately cleaned. This is known as the Kt/v formula to determine each patient's prescribed treatment time.
The problem with this is it is extremely hard to not gain more than 1.4 kilos between treatments, especially between my Friday and Monday treatments. And even harder for someone like me who hasn't urinated in more than a decade. However, for more than 20 years I've always been able to pull off all the excess fluid in just one three hour treatment without any issues. That's because excess fluid can cause major health problems such as hypertension, hypervolemia, pericardical effusion, and congestive heart failure with side effects including but not limited to swelling, fatigue, and shortness of breath. And in some cases could result in death.
I was near death in 2004 from missing two consecutive treatments from being careless. I gained a lot of extra fluid and began coughing up the excess fluid mixed with an excessive amount of blood. I passed out on a Sunday night and woke up Thursday morning in the ICU hooked up to a ventilator with a breathing tube placed down my throat. So, I know firsthand how important fluid removal is to a dialysis patient. I am very lucky to still be alive.
The reasoning behind the CMS ruling is they claim there are a high number of cardiac arrests in dialysis patients associated with rapid fluid removal. I have done a lot of research and found nothing to back up this claim. I agree there should be a limit, but that limit should be determined by each individual patient and their doctor. A "one size fits all" mentality has no business in the medical field. I personally have always been able to remove up to 3.5 kilos in a three hour treatment without complications. I also have three years worth of run sheets from 2014-2017 to back up this claim.
It is more dangerous to leave the extra fluid on a patient than to remove all of it or most of it during the prescribed treatment time. There have been many times my dialysis center only removed the 1.4 kilos, leaving that much if not more still in my body. Dialysis patients can't go two or three days without food and water.
The "CMS" solution to this is to run the patient longer hours or extra treatments. But, most dialysis centers are limited due to staff, hours of operation, and number of patients and machines. It also makes absolutely no sense from a financial perspective to run unnecessary hours and treatments. It is also not an option for me currently when I have to work and conduct dialysis on the same day.
I have reached out to my local Senator, John Cornyn (R-TX), who in return contacted CMS with my complaint. CMS responded to Senator Cornyn by sidestepping the issue at hand. They claimed they did not understand the complaint, although it was more detailed than what I wrote in the paragraphs above.
If you, or someone you know is affected by the 13mL/kg/hr rule or you want to help someone who is, please sign this petition. The government has no business interfering with the doctor patient relationship. Nephrologists should be the only ones writing dialysis prescriptions. Even if this doesn't affect you now, please remember thousands of Americans have to begin dialysis each year. Don't let the government decide what's best for you or someone you love.
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