Thread: Newbie
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Old Sun Oct 9, 2016, 08:14 PM
Windhorse1 Windhorse1 is offline
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Join Date: Oct 2016
Location: Boulder, CO USA
Posts: 6
Helpful!

Hi Kevin,

Thank you for your thorough reply. I suppose that, given the rarity of this disease, were there to be a “local” support group, we’re probably it! So, I very much appreciate you reaching out.

I am being treated at the Longmont Methodist Hospital, and my initial doc has been Robinson. I’ve also seen Fox this weekend, I do believe they’re both with CBCI. So, that’s good news. I am only learning the acronyms and their significance, so will be able to give you my own soon. All very low, of course.

I will be keeping a close eye on the transfusions. I have had three so far, and as this is the second to last day of my ATG injections, they wanted my platelet level to be up more than they were.

It is so encouraging to hear you speak of your life improving. The first couple of days that I was here, before they took and interpreted the bone-marrow biopsy, the only thing they spoke of was Leukemia. This hit my wife and I very hard, of course, as I have always been healthy and full of life energy. It felt like a death sentence. So, serious as it is, SAA actually sounded like good news. You seem to attest to the fact that an active and healthy life can be re-captured, and I look forward to that!

Yes, I have heard of Eltrombopag (sp?) but only just today. There is a great talk by a NIH researcher on Youtube, and she spoke of it.

Again, I so appreciate the time you took to offer words of encouragement and support.

I’ll keep in touch, if you’re willing.

Thanks,
Matt
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