For most of my adult life I didn’t have consistent health insurance. I wasn’t poor. I was in the tech industry and worked for a series of small start ups. While benefits were always something that was “being worked on” or “coming soon” I was usually simply doing the job I truly enjoyed for very long hours to spend much time bothering some HR person about insurance when I felt perfectly healthy.
The problem was what was killing me has no symptoms until it is far too late. I had high blood pressure. By the time I did get it diagnosed and get on proper medication the doctor estimated I had had out of control levels for more than a decade.
One of the things HBP can do is destroy the function of your kidneys which it was doing to me, possibly furthering along damage done by a car accident I had been in as a teen. At the time of my diagnosis my kidney function was 15% of normal and an ultrasound revealed that one kidney was atrophied already.
I immediately changed my lifestyle. I started exercising and eating better. I rigidly followed the medication regime laid out by the nephrologist. Even with my BP in the normal range my kidney function continued to slowly decline. The one functioning kidney was simply too damaged to sustain me.
After almost 3 years of struggling against the inevitable, and getting increasingly sick in the process, in September 2010 I finally started dialysis. For 4 hours 3 days a week a machine like the one shown above filters my blood to keep me alive. But that is about all it does. Being on dialysis is marking time for most people, it consumes their lives.
Now finally after 6 ½ years I should be nearing the top of the kidney transplant list. Besides the things associated with kidney failure and HBP I’m healthy enough to receive the kidney and do well, at least that’s what all the doctors who have evaluated me to clear me for the transplant say.
However I have been out of the workforce most of the time I’ve been on dialysis. The SSA says you are no longer disabled some period after receiving the transplant. When that ends so does my eligibility for Medicare and Medicaid.
Organ transplant is on the list of conditions that will be considered a pre-existing condition that insurance does not have to cover under DrumpfCare (I know it is supposedly a state by state decision). Between the HBP meds I’ll be on and the anti rejection meds my Rx bill alone could be over $1000 a month. Then there are the regular checkups with both primary care docs and specialists to monitor my overall health and whether I’m rejecting the organ. While I’m eager to get back into the workforce full time I doubt as a 50+ tech worker with a more than 5 year gap in his resume I’m going to get a job paying enough to cover those sorts of medical bills even if I decide to live under a bridge.
So when you’re calling your senator or attending a town hall or writing him/her a letter think about the thousands of people in my shoes and the many others waiting for organs without which they will die. We’ve all just been told we do not deserve this second chance simply because we’re not rich.