I met with Dr. Know It All my PNH doctor last week. I informed him about my insurance changes coming up and also expressed to him my concern about this fall. As many of you may know Chrysler was recently bought by a company called Cerberus. My husband works for Chrysler... and while it was once known for it's great benefits and pay there is to be a new contract drawn up this September with the new owners and there is talk about decreasing pay by 30% and also messing with our healthcare. Whole alot of this is hear-say the problem is that we just DONT KNOW what's in store for us in the future. One thing that is causing US automakers to lose money is the fact that our pay and benefits are far far better than foreign car company's. So we are preparing for the worst. Dr. Know It All told me that he was very excited to see how my blood counts are responding to the new drug treatment Soliris. The only side effect I have had from this new drug are headaches. When asked when he is thinking about doing the bone marrow transplant he told me that it's up to the donor, depending on when he is available. (side note... since I had 4 potential donors the doctors told me that he chose the youngest male donor.. I thought that was interesting) But he did say that it could be done next month!! That came as a bit of a shock. I tend to be one who likes to plan in advance and prepare myself for things, so to hear that in a few weeks I could be undergoing chemo and a bone marrow transplant was a bit much. But as scary as it is I am even more excited to move on. have felt like the past year I haven't been able to be me... I was only as good as my illness let me be. So... I guess I am just waiting for the call to see if things will be progressing as quickly as he said.
Z is doing great... I have an appointment to get some 1 year pictures taken here in the next few weeks. I will try to post then once I get them.
"Hi" to any new friends who may be stopping by my page. You are welcome here. :)
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3 comments:
Hi There,
I'm from / in the UK (lived in Chicago for a while before returning here; most of my family is still in the US).
I scanned your blog with great interest. How's the Soliris working for you? You are very brave, I hope that people are good to you and God fills your days with strength, hope, and happiness.
BTW - lovely baby, my partner & I just had our son a little over six months ago.
Wishing you the very best.
Thanks for the warm welcome!
I tend to be a planner too, and wow, next month. It sounds like you're excited and ready ... awesome! I'll be here waiting to hear all about it and offer my support.
Your baby looks so happy in his pics. I think the song you posted really captures the emotions of anyone struggling to deal with an uncertain or unknown situation. Wishing good things for you.
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