Raw And Unfiltered
(photo courtesy of CFHP)
When I write my posts, really when I write anything, I try to write as professionally as I can. Which means that I do not normally publish anything immediately, so that I can proof read for errors and mispells, or perhaps tone down the temperature of a topic if needed. I want to come across unbiased, informed, and if necessary, looking for or offering a solution.
This post is not going to be one of those posts. As I write this, I am not going back and reading over it, double-checking anything. I am certainly not going to turn the temperature down on this post. I’m fucking pissed!
To preface, anyone who has followed my blog, knows I have a long and complicated health history. Also well known is my reliance on the caregivers that I have established over my both my lifetime and my survivorship. If there has been any issue ever, it has been when I was left to my own device due to an emergency where I had no choice in the caregivers assigned to me. But if a doctor was involved in my care, it was not just because they were that good, that knowledgeable, but because I have trust in them.
This year has been a difficult year in my care, not because of conditions or status of my health, but I have lost direct care of three of the most important caregivers in my care. Some due to time, and I could not be selfish to expect them to stick around. Some due to corporatization and interference taking away not only their ability to practice, but also their passion for what they are truly blessed at.
A phone call I just received a little over an hour ago (I have spent the previous hour before sitting at my keyboard putting contacts out to figure out what the Hell to do next), explaining to me, that I was going to need to find a new cardiolgist. I tried to explain to the penpusher that I did find the new cardiologist, in fact he came recommended to me, I had already been referred to him by two of my former doctors including former cardiologist.
This penpusher went on to explain I lacked a proper diagnosis to see this cardiologist which had I had a drink in my mouth would have been spit up all across my windshield as I was driving. I asked her what diagnosis would that have been. She responded “amyloidosis.” I had heard of it before, likely on television, but definitely not something in my records, which with my heart alone has an extensive list of issues along with the other late side effects with my body that I deal with. It turns out, “amyloidosis” has something to do with abnormal proteins with the body, and since I am dealing with cardiology, I am guessing it has something to do with impacting the heart. Well, the one thing I know I do not have an issue with my heart, is abnormal proteins. A blockage to the LAD and RCA main arteries to the heart, aortic and mitral valves, a left bundle branch block, and some electrical thing I don’t really understand, but abnormal proteins, no.
So one of the advocates I have working on this has gotten back to me, that this particular doctor I was referred to, who coincidentally does see other long term survivors with cardiac issues, is simply not seeing new patients, only if they have an amyloidosis diagnosis. It almost seems as if “corporate” has said “enough of those serious patients, you have enough.” And for those of you against universal health care because “you won’t be able to see the doctors you want,” I PAY FOR FUCKING INSURANCE TO SEE WHOEVER I WANT AND NEED TO SEE! and I am being denied by corporate for the level of care I need, whether it be by the provider or possible directed by the insurance company #luigi .
To be clear, I do not fault the doctor. I am losing them for a reason. Medicine is not what it used to be. Now privatized, medicine is all about profit over patient, even if you are paying through the nose for insurance to cover what is needed to keep you alive. As of right now, his “areas of expertise” still list in his top two skills, “cardio-oncology” and “cardiomyopathy and heart failure,” both of which pertain to my situation. But while I was referred to him, had an appointment scheduled because he was the best fit for my heart’s history, something happened corporate over the last month, and now I must find someone else.
Yes, I am more emotional right now about this than usual. I did not ask to have these health issues, and it isn’t like I did anything or have a family history. The issues I have with my heart and other body parts were done to me! This was the trade-off for beating my Hodgkin’s Lymphoma. Medicine did not know that all these bad things could happen 35 years ago. They do now. But the hard part is finding doctors who have some idea of understanding how much more intricate a patient, survivors like me are.
Last week, a fellow survivor passed, due to complications from her heart surgery, something many of my fellow survivors and I have gone through. I need a doctor that understands the needs of a Hodgkin’s Lymphoma survivor who underwent extreme radiation (4x the lifetime maximum exposure limit) and some of the most toxic chemotherapy drugs. I had one, and has now access has been taken away from me.
I’m pissed! I’ve survived 35 years because I have been able to find the care that I need which has not been easy. And now corporate says “no more.”
Paul's Heart 