Friday, June 01, 2007

Some optimism...

I had my appointment at the free clinic at 6pm this evening. 4 1/2 hours later, I finally saw the doctor. But, I'm not complaining. I am very grateful for every one of those fine people there who are all volunteer. God bless them.

Best of all, the doctor was a retired pediatric oncologist who actually has had a systemic mastocytosis patient!! Unfortunately, it was a little child and my heart immediately went out to him. I was afraid to ask if he had survived, as the way the doctor spoke of him I got the impression that he may have not. Bless that child. I cannot imagine suffering like this as a child.

I had gone all prepared with info sheets about masto and the diagnosis of masto, plus my medical records from my internist and info about the NIH study (which I haven't heard from yet). While it was helpful, it wasn't even actually necessary as the doc knew all about mastocytosis! He examined my rashes, poked me here and there...I think he was checking my lymph nodes, liver and kidneys, and said that I had all the classic indications of mastocytosis. He has ordered a blood test and is going to try to find a lab qualified to do some of the other tests, like checking the tryptase level. He even mentioned that they may do a bone marrow biopsy.

For free!

God bless the good people at Taylors First Baptist Church who underwrite all these good works. I know I say that for myself and all of the other people at the clinic. Bless their hearts, also. You might think that you would see only the bottom of society at a free clinic, but you would be wrong. 95% of the people there were people just like me. Born and bred middle class, just caught with chronic conditions and found themselves uninsurable, and driven to poverty by the cost of healthcare and the deplorable situation we in the richest nation on earth have come to be in. I don't get political on this blog, but I just want to point out that every Democratic candidate for president has some form of a universal healthcare plan while the Republicans do not.

The doc was also able to give me free prescriptions for most all of my meds. I now am freshly replenished with hydroxyzine, Cymbalta, a proton pump inhibitor, loratadine, doxypin (which he uped to 25 mg), Singulair, and ranitidine. He checked my downward turning nails and I told him about the cramp like spasms I've been having in my liver area and he says that most likely I have an overabundance of mast cells in both my liver and kidneys, especially since I have wheal and flare rashes over the areas of those organs which are an indication of their involvement.

I thought that was interesting since I also have rashes in most of the areas where lymph nodes are in their most abundance, like around my navel, sides of my neck, inner elbows, inner knees, abdomen, etc.

Of course, I've thought of dozens of questions I should have asked since, but that is not unusual considering my brain dead status. Hopefully, with all the new meds, that might improve at least a little. The worse my symptoms are, the worse my brain functions.

Please continue to keep your fingers crossed for me, say a prayer, or keep me in your thoughts. I appreciate all the good wishes and they help tremendously.

I'd like to give a special shout out to Piia in Norway and Tiago in Portugal. I hope things are going well for you both and will continue to do so. Keep me posted and I will continue to keep you both in my thoughts. Let's hear from you, Tiago!

Take care, y'all.