Thursday, February 21, 2008

New Priorities

It has been nearly five months since my last blog entry and things are only beginning to settle down a bit. I nearly died on October 3, 2007 and spent 15 days in intensive care at the Baptist Medical Center in Jacksonville. It turns out I have had multiple myeloma (bone marrow) cancer for some time. It destroyed my kidneys which nearly became fatal before I realized I was really ill. While I still passed water my kidneys had ceased to function and my blood was filled with toxins and old chemical markers that gave my brain bad information about my body. I thought I was hot then cold but my actual temperature never changed. I was halucinating.

I've been on kidney dialysis ever since and will be for the rest of my life. Since I have cancer as well, I'm not a candidate for a transplant. The immunosurpressive drugs needed to prevent rejection of the foreign organ would stimulate my cancer. There is no cure for my type of cancer, but it can be surpressed by very expensive drugs ($5,000 a month). So I'm in no immediate danger of dying. It's the little things that get you. Each of these medical conditions has only a 50% five year survival rate overall. I've learned a lot about hemo-dialysis and what the kidneys do (or don't do anymore in my case).

I must take phosphorus binders with any food I eat and avoid most of the food I like because it is high in phosphorus or potassium or both. Healthy stuff like whole grains is actually higher in phosphorus and calcium than plain old white bread, but I still can't eat that stuff. Once again, the medicine to keep me going is quite expensive ($365 a month for Fosrenol). Without the medication and watching my diet, plaque would build up inside my arteries and blood vessels eventually causing a heart attack, stroke, or deep vein thrombosis.

Ironically, I was better off having no insurance at all. America's medical system is absurd and upside down. The indigent get everything paid 100% including drugs. The rest of us will become indigent in a few years paying outrageous sums for patented drugs that should have become generic many decades ago. I'm only just now getting basic Medicare so I don't know how all this is going to work out, but I do expect it to deplete my remaining assets very quickly.

I plan to post monthly blogs about issues concerning kidney dialysis or cancer patients from now on. I cannot work and hope to eventually collect some disability money, but it won't be nearly enough to pay for my dialysis co-pays and Epogen let alone my other medications. Epogen(R) stimulates the development of red blood cells in my bone marrow extending the time between blood transfusions and relieving the severe anemia but it costs a lot. MediCare pays 80% of the cost of hemodialysis including Epogen and Heparin (to prevent clotting in the catheters) for those like me with End Stage Renal Disease (ESRD) regardless of age, but it took four months to qualify.

With over 50 million subscribers Social Security is a circus. I'm amazed it functions at all. Even the simplest most straight forward process takes a long time because of the constant backlog and crush of people needing assistance. To make matters worse, the Feds have farmed out the disability and Medicaid portions to the states making these services slower, more complicated and even more difficult to obtain.

My view of the world and my expectations for the future have changed dramatically in the past few months along with my waist line. I've lost 65 pounds so far. I'm slowly disappearing. Food is no longer something I can enjoy. Nothing tastes the way it should. I can't really taste most of it at all, the rest has a bizarre chemical taste to me, unrelated to it's actual taste. I really miss the taste of my favorite foods but I'm lucky I no longer have to carry around all that excess weight. My heart and few remaining muscles just couldn't do it. But overall I'm in a lot better shape than many others. I can stand and walk and take care of myself. I'm no longer in pain and can expect to live for years if I'm dilligent and can continue to obtain the medications.
I'll write more about my experiences next month.

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