Wednesday, October 23, 2013

Waiting Angry

Yesterday, Dr. D walked into my infusion room. After the unnecessary nice chit-chat, she dropped a bomb. "We're having a hard time finding you a matched donor. Could we test your parents and siblings again?" My heart fell and my hopes to be cured began to wither.

Truly, life has a way of throwing curve balls. I feel like I've been dodging them ever since. Waiting for a donor is a painful process. During the preliminary search, my doctors at NIH said I have possible 132 donors in the US alone and an additional 130 in the international registry. So what happened? Is Dr. D saying that none of these donors match me fully?

I was so angry yesterday. Having a bone-marrow failure really is a test of mind and body, and I feel like I am being pushed to my limit. My patience is so short I could snap at anybody or anyone. I feel that my disease is changing me.

Kepi did offer a calmer perspective that "Dr. D is just making sure there's a plan B in placed in case a fully matched unrelated donor is not found." Perhaps but I didn't want to hear a plan B. I want a non-experimental approach to my cure. I want to be cured period.

Anyway, I am back to being frantic and worried again.  I seriously need some good news today or in the next few days.

Friday, October 4, 2013

A Friday Thought

I seem to be getting my blogging spirit back but that's probably because I need an outlet or a place to vent. I am yearning for a place - a safe place that no illness can reach.

Preparations for the bone marrow transplant is rolling as we speak. The hospital sent me a message that HLA testing results should be in by next week. After that, they'd be able to identify my 10/10 match.  I am praying they'd find him/her soon, and I hope he/she will say, "Yes".

Timing is a bit off because if my calculation is right, I'll be admitted at the hospital by late November or early December. I dread spending Christmas at the hospital. It won't be easy not being home during the holidays especially that I'll be spending at least four to six weeks in there.

On another thought, I wanted to write about my transplant experience on this blog, but since my husband's company wants to set up bone marrow drives in the area, I had to start a new blog for them to use for their campaign. (I didn't like the idea of my husband's coworkers reading about our personal stuff so I'm keeping this blog just for us.)

So if you'd be interested to follow my bone marrow journey, please follow me here - kayni's bone marrow. I also started a Facebook page to create awareness on rare diseases and the urgent need for minority bone marrow donors, please help me disseminate information by liking this Facebook Page. This is the least I can do for now. This page will also publish current bone marrow drives going on in the area.

I wish everyone a happy Friday and a great weekend. Thank you for all the encouraging comments, please keep them coming.