Bill took notes, Liz and I were the question askers. We didn't have to ask many because he talked for an hour. After that hour he had already answered most of them.
Dr. Gershner thinks I've probably had this for a number of years. They have blood tests from me going back to 2006 for something and I was anemic then. Until the disease actually starts causing issues, it lives silently. The only way you would know you had it is if you went to give blood like I did and they tell you to go home and take Flintstone vitamins and come back and try again in 6 months. That was the beginning, then the heart palpitations and exhaustion lead to an array of tests and then after thousands of dollars wa-la...a diagnosis.
Sounds like this has nothing to do with my genetic disorder but he doesn't know for sure, sounds like it may be more environmental which is scary in itself.
I'm being referred to a transplant person at Barnes in St. Louis. This is merely to discuss the option of a stem cell transplant should I make the decision to have one. I guess it's better to have one at my age than when you're older, makes sense. Bill will be tested for a donor since he's the only brother I have and children are not matches. The appointment there will most likely be within the next couple of months.
They started me on a shot today that I have to get every 2 weeks. It's called ARANESP (Darbopoiten alfa) yeah, whatever...
It's suppose to boost my red blood cell count. I go tomorrow to be cross-matched at the hospital and then Sunday get to spend 8 hours there getting blood. Wonder why they can take it from you so fast but it takes so long to get it. Hmmm
I feel so lucky to have people who care about me. I saw so many today that were there alone and were so sick.
This isn't so much a blog as an update I guess. I just want to wish you all a wonderful 4th of July with your families, have a great time!!! Florida for me on Monday and return the following Monday late. POOLSIDE and sunshine, that's what I'm talkin' about.
Smiles always.....
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