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.


  1. don't worry you'll get that donor, many are praying for you.


  2. Oh no that is quite a setback! I understand your frustration and anger. But I hope you hang in there and continue to have faith. Everything happens for a reason, I will continue to pray for your good health.

  3. I really do hope you will hear good news and that you will find a donor soon.

  4. We're all praying for you and for the very good news that the donor will be there soon. Take care!

  5. We join you in that big hope for the perfect match soon. You'll be well!

    Hugging you here...

  6. I am one with the many others who pray for your healing! So just hang in there!

  7. i'm so sorry to hear about this. just hang in there. i hope everything will work out fine for you.

  8. Sorry to hear about that sis..big hugs for you. :)

  9. I can only imagine what you're going through... my prayers and thoughts are with you.

    "Dear Lord God, give my friend Kayni her miracle, and let her feel that she can rest in the comfort of you love and your strength in these trying times. Hide her under your wings and give wisdom to her doctors. We put our trust in You that You know what is best and You will act at the right time. Amen."

    Hugs and love to you, sis.