Recently wrote this for Kidneyviews Blog on Home Dialysis Central
August 23, 2016
Mr. Andy Slavitt
Centers for Medicare & Medicaid Services
Department of Health and Human Services
P.O. Box 8010
Baltimore, Maryland 21244-8010
Dear Mr. Slavitt
I am a 3 year home dialyzer. I would not be here, if it were not for home dialysis. Although I lived with failing kidneys for over 20 years, it was never my intention to start dialysis. At 65, I had achieved most of my bucket list, and was content to go in peace. I refused to live a life hooked up to a machine. However, when I finally crashed, I had so many obligations, including my 93 year old mother with dementia, that I could not afford the luxury of dying. So be it. Continue reading
2015, however, was not to end on the best of terms for me and my clinic. My nurse for the past year left for greener pastures. As I waited patiently for a new nurse to take over, I realized how important, almost symbiotic, my relationship with my clinic had become. Next to my fistula, this was an important lifeline, and when, after almost two months, no new had nurse appeared, I felt at sea. Continue reading
It seems only fitting that as 2015 draws to a close, I should pause and reflect on all that I experienced throughout the year, and ponder about what 2016 might hold in store. But first, I must apologize for ignoring my blog. I had every intention of faithfully recording my journey on dialysis. But the best laid plans got sidelined when, early last year, I was invited to join the board of the only patient run advocacy organization that supports home dialysis. I hopped a plane and headed to New Orleans, to the Annual Dialysis Conference, and the rest, as they say, is history. I have never worked so hard, for so little money, and received so many intangible rewards, in my entire life. Continue reading
I’m into week 2 of my first vacation since starting dialysis, and I am happy to report that I am totally relaxed, at peace, and enjoying life. I’ve settled in to the routine of treatments, making up for the few I missed while driving cross country. I even did labs without incident, and they were stellar! So vacation surely agrees with me! Continue reading
I apologize. I’ve been remiss keeping up with my blog these last few months, but at least with good reason. After being nominated to the board of Home Dialyzors United, I once again indulged in my lifelong passion of advocacy work. I had also been volunteering at my grandkid’s school, and now found myself really devoting time to helping them through some difficult transitions. And just to see if I could physically handle it, at 63, I went back to work, albeit part time! That was a tough one! Even just 10-15 hours a week seemed like a monster challenge at first, although now, after a few months, I am happy to say I’ve adjusted.
There is a phenomenon that occurs when an organization has a highly significant power over those it is there to serve. I have observed it for some time in the form of Dialysis and Transplant Centers. When the product is seen as necessary for a good life by the customer i.e. kidney, liver, dialysis etc. that person has a certain involvement and need that seems to spark this in the providers. The providers become demanding beyond rational limits asking the customer (patient) to jump through often irrelevant and extraneous hoops, to commit to compliance without question – blind obedience if you will, and assume an authoritative role over the customer, while setting to blame the customer for any difficulties in the outcome.
I have witnessed this at three centers I consulted about a transplant for myself, as well as a dozen dialysis clinics in which I have been a guest or client. I have no respect for the program, their protocol or “rules for the patient” or their hurry up do what they demand but then sit back and wait while they take their time and make their mistakes approach to their customers.
I recently was honored by being elected to the Board of Directors of Home Dialyzors United, formerly NxStage Users Inc. and had the privilege of attending the American Dialysis Conference in New Orleans.
This was my first opportunity to travel with the NxStage System One, and I admit to being a bit anxious. The thought of being saddled with a 100 lb. albatross while travelling was pretty daunting. Armed with plenty of five and ten dollar bills, I managed to load everything in my van, unload it at the hotel where I parked, load it into the shuttle, grab a skycap at the airport, wait an hour at the ticket counter while United Airlines tried to deny me a ticket due to the weight of my “medically assistive device” (which is allowed by law, and which law I provided them a copy of, to no avail). I then proceeded the process all over again on arrival. This is what travelling dialyzers looks like:
Now what, you might ask, does this have to do with being enabled to be disabled? Remember in one of my earlier posts when I described first seeing a dialysis center, and a sea of comatose bodies hooked up to machines, blaring out alarms? Now that I have ventured out into the world, as a dialyzer, I feel compelled to comment on the dependent culture that most of these clinics encourage. Continue reading
It’s time to talk about kidney brain and all the other weird side effects of kidney disease. Renal failure can be like a chameleon, constantly changing colors, or symptoms. Until you get that first elevated creatinine, it can disguise itself as any number of diseases. It also likes to pair up with other diseases such as diabetes, high blood pressure, thyroid, and many cancers.
In my twenty years of being diagnosed with renal disease, I never once felt any burning sensation or pain in the area of the kidneys. I slowly lost my sense of smell, but never got the metallic taste in my mouth until after I started dialysis. There were never any visible signs of fluid retention in my hands or feet, but I carried it secretly, intra-cellularly, in the lungs and other organs, making it impossible to lose weight. Many people report severe itching, which is the parathyroid contribution to kidney disease. At my worst, I had a fine red rash over half my body, which burned like acid! Some people describe it as itching from the inside out. Another dialyzor recalls smelling cigarette smoke for the six months prior to starting dialysis. Continue reading