On January, 1994 I was diagnosed with Type 1 Diabetes while serving on active duty with the US Army. As a result, I was discharged with a 30% disability rating that September. I am currently rated as 100% Permanently and Totally Disabled by the Department of Veterans Affairs and receive all of my medical care through them at the Durham VA Medical Center. This increased rating is a result of an increase in the severity of the diabetes symptoms I've experienced, coupled with numerous complications.
On Jan. 31, 2017 my nephrologist stated in her notes, “Per Aug endocrinologist note, patient should be considered for a kidney-pancreas transplant. Not yet CKD (Chronic Kidney Disease) Stage IV (where dialysis/transplant is appropriate) but will send this note to (Transplant Coordinator) for review. Please note that patient has numerous debilitating conditions from his Type 1 DM (Diabetes Mellitus) including life-threatening, silent hypoglycemia and would greatly benefit from a pancreas transplant. Will see if kidney-pancreas transplant evaluation can be started as soon as possible, within VA policies.”
Nothing substantive happened until Sep. 8, 2017 I met with the Durham VAMC Transplant Coordinator to discuss VA policies and procedures for a kidney-pancreas transplant. She forwarded my information to the VA Transplant Center in the Iowa City, IA VAMC – the only VA facility that performs simultaneous kidney/pancreas transplants. In the last 29 years, they have done just three of these procedures – one each in 2002, 2007 and 2015. During the same period, there were 22,645 of these procedures done nationwide.
On Sep. 11, the VA transplant center said they will not do it. On the one hand they said I am too old and sick for a pancreas. On the other, I am not sick enough for a kidney.
Options for having this done outside of the VA appear to be unavailable to me. The “Veterans Choice Program” – which pays for care that the VA cannot readily provide - does not pay for transplants.
Another option is to use discretionary funding authority available to the Durham VAMC. Before I could get the ball rolling on that, somebody did it for me and a request was made on my behalf. That was denied.
I am not eligible to use Medicare since I am too young (by 12 years) nor am I yet on dialysis.
I am also ineligible to get it done via Social Security Disability which would have made it possible for me to use Medicare to get this done.
My family income is too high to use Medicaid.
With diabetes, failing kidneys, several heart attacks and numerous other health problems, both Obamacare or joining my wife’s health insurance would be prohibitively expensive.
For now, the best available option is to invite my Congressman to 'encourage' the Durham VAMC to use their discretionary funding authority. I've also asked them to ask the VA Central Office in Washington why it is that while veterans constitute 6.1% of the US population, the VA only does 0.013% of the simultaneous kidney/pancreas transplants in this country. Given that low percentage, why are veterans effectively blocked from being able to get them elsewhere if the VA is unwilling/unable to do them?
The next option - and certainly not a good one - is to wait until my kidneys deteriorate further and I meet the criteria for a kidney transplant. All it takes is one visit to a dialysis ward and to see the folks who are having that done to realize that is not a road I want to be on.
For now, all I can do is take care of myself the best I can, and wait to hear what magic my Congressman was able to perform. Realistically, I am not expecting to hear anything encouraging.