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Reaching out to a Community of Support

It's Now Or Never...My Time Has Come!

By Jeffrey Roe on 1/13/2023

Greetings Friends & All,

 

A Happy & Healthy New Year (2023) to All! It was October of 2021 when I last updated my Carelines posts. Then, I had a 10.6 hemoglobin level, but it had reached its maxium beneit from the Atgam infusion back in June 2021. My level continued to steadily drop from 10-21 through 3-22. Then, by July 2022 my hemoglobin level had dropped to 7.5 & RN Heather Buffington had me scheduled for my first RBC (red blood cell) transfusion at Moffitt. My first transfusion since May '21.

I have remained transfusion dependent since July '22. First, it was 1 RBC unit every four weeks. Then that changed to every 3-4 weeks. Then every three weeks. Then it was increased to 2 RBC units every 3 weeks & subsequently that became every 2-3 weeks. Now as we entered the 2022 holiday season it became 2 units every two weeks. As I discussed with Dr. Komrokji back in July '22, we were attempting to get me to year's end in order to have my Aflac STD policy's criteria of one year policy in effect for prior cancer diagnosis' met. Well, we made it. Now, it's Jan. 13, 2023 & I've had my pre-transplant bone marrow biopsy done. My employment with DMS came to an early ending prior to the holidays in December. A rather callous & untimely dismissal from my perspective. I would've resigned by about now anyways. I've made the arrangements to secure my health insurance from FL Blue through the Healthcare Marketplace. I've also been busy checking with Aflac & updating all my insurance info. Moffitt has preliminary approval from FL Blue to go for transplant. While we await their final approval for the BMT, I've had my first transfusions of '23 this week following my bone marrow biopsy. I continue to search through the various non-profit organizations' websites for whatever financial assistance/grants that I might be eligible for. It's difficult financially as I'm only working my part-time job for now. I have had an initial SSI disability interview & I shall be applying for unemployment within a week & short-term disability by end of January. Moffitt should have insurance final approval, donor matches & the biopsy results by month's end. Then I shall have to undergo the three days of conditioning testing & I would anticipate being admitted for central line placement & my BMT by some point in February.

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