I have ESRD, going on my third year of successfull Peritoneal Dialysis, and belong to an MA plan in Northern California. I had come to the conclusion my care was falling below the acceptable standard after a off the record, casual complaint about just finding out I'd been abandoned for almost 2 years by my vascular surgeon, whom I had the bad luck of an 'acceptable risk' stroke, suffered during a carotid revascularization with her, on our first procedure.
I hadn't been told of her departure until I got a referral for a worsening PAD condition she had refuse to correct in the past, due to it not being bad enough. My new limp said otherwise. I took the next available surgeon and voiced my displeasure during the consultation exam. Turns out he was head of the department and responsible for peer review of what I now know to be very sore point of conversation with her ex-partners and their attempts to distance themselves, with the help of the California Board of Medicines refusal to post their own formal professional misconduct action, Non charged DUI(Diversion) followed a year later with a DUI reduced to Wet Reckless, criminal misdemeanor 'no contest' plea from the professional misconduct, and finally bench warrant for being in violation of and failing to complete the terms set forth in probation of said misdemeanor conviction. This was subtle expressed to me through various adverse events that followed.
I started like I'm supposed to, with an internal greivance. I was thrown under the bus, carewise, by the next provider I saw. I elevated the complaint to our states Medicare QIO. At the next opportunity they threw me under the bus (turns out our QIO was established partly out of a Colorado State Physician Group's Quality Department that's modeled and named after my MA provider). I then phoned a complaint to the Department of Health & Human Services, Office of the Inspector General who said they'd give it priority. I believe they meant well when they forwarded it to an NBI contractor, who sent me a letter saying they'd contact me. Going to their website, they had just completed the largest medicare fraud investigation in US history and had pictures of police sirens, giving you the impression that they were serious. I reluctantly acknowledged what I had said in my complaint was true when they called. They said they'd look into it. Well, by the time the letter arrived, saying they had forwarded my complaint to a caseworker at the Regional CMS, that worker saw my earlier complaint filed with the QIO and contacted them.
It just so happens I had a hastily scheduled laparoscopy on Christmas Eve, to look into the complaints about PD cycler drain pains I had been saying for a couple of months. I was worried sick when I read the letter. There were 2 messages from the customer service department asking me about my complaint. I did not want to go to that surgery, but it went well, I thought.
Losing consciousness twice walking to the bathroom at home that night made my son try a manual exchange (we were told to take the night off of PD). Reversing flow to clear fibrin brought thick dark blood that didn't stop. A switch to fill and back to reverse, more blood and it wasn't getting thinner. Off to ER. I had a slightly elevated troponin just above 1 on arrival and a 2 when transfered to a room the first day. Also, I had a gram negative growth, seratia liquifaceans, from a PD fluid culture. Slight chest pains got worse on day 3 and apparently they stopped testing my troponin until I started complaining about worse chest pains. The first came back slightly above 90! I had my first heart attack. Residual supraventricular and tachycardia events were often now. I'd had enough. I left my MA provider but had to go to Original Medicare at 20% my cost, per Medicare ESRD rules.
I asked for an Electronic Health Record before I left, which came on a flash drive. It looked just like something that had been given to me in the Providers lobby in 2010. Digging aroung the house, I found it. So I had a copy from the end of 2010 and the end of 2012. Upon review, nothing seemed alarming. After I became bored of going over and over the 'important' sections, again and again, my eyes settled on the 'allergies' section of the current EHR. It seemed there was dates missing from two reactions that i didn't recall being missing from the 2010 EHR. Going back to the old EHR, I saw the dates. The first, a reaction of 'Renal Artery Stenosis' from 'Lisinopril' happened a week after my 'acceptable risk' stroke. The second, a reaction of 'Incr CREA due to R.A.S.' from 'Hypotensives, ACE-Inhibitors', happened 3 weeks later. I hadn't even been released from their stroke rehab center yet.
Looking up the acronym/abbreviation has really upset me. Does the second reaction mean Renal Artery Stenosis
or Renin-Angiotensin System? Does this indicate an Acute Kidney Failure from the first reaction, that was unnecessarily extended, due to being changed to a medication in the same class as the one I was already having reaction to, instead of a one in a different class. I was told my left kidney was completely dead and the right only had a quarter function about a year after my 'stroke', but no explaination, guess, diagnosis or biopsy was ever done or offered. If the ACE-Inhibitor cause the atrophy of my kidneys, as it was later described, how does that happen?
I know this is a lot to address but after I started asking questions with my MA providers, I was pretty much thrown under the bus, carewise. Not a comfortable place to be on ESRD. Barred from going to another MA plan by Medicare ESRD rules, I had to go to Original Medicare to get the necessary PAD and remaining carotid procedures done at 20% my cost. The only way I could afford that was to give away everything I owned (including savings) to get under the federal poverty limit (not advisable in the SF Bay Area), which qualified me for Medic-Aid no share of cost. I'll be eating Dog Food soon but at least I'm alive.