Sunday, December 20, 2009

But I am the sick one!!

Last year, between August and October, I lay sick at the hospital next door. Pregnant with Koby, the Drs could not figure out what was wrong with me. Test after test, specialist after specialist, drug after drug ... Heart failure, liver failure, ulcerated digestive tract, carrying 40 lbs of water ... All I knew was that I was in constant pain and I wanted it to stop.

Brandon was at my side every day and every night and he was my rock. Running back and forth between work, Dana and the hospital, he held our lives together. He was the only one who kept me sane - and even that started to slip at the end.

On October 8th I was so sick that a decision was reached on my behalf - our baby would be delivered at 32 weeks, because my body could no longer handle the pregnancy and the fetus would be in danger (and I could die).

So in the operating room on October 10th, Koby was delivered, surrounded by a full team to treat me and a full team to whisk Koby to Sick Kids Hospital.

Thank God everything turned out ok. Koby was strong and was home within a month. I got stronger, and after a few more months of medical care the pain stopped.

They finally figured out that I had a genetic blood disorder called HHT. This disorder can cause problems, or people could live a full life and never even know they have it. In my case, the body changes of pregnancy had triggered it.

I have no symptoms any more, but the disorder is always there and needs to be monitored.

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I apologize for this long story. The point really, is the unbelievable irony of everything. I am the one with the blood disorder and now Brandon has Leukemia!!!!!!!!!!! How does this even happen???

Brandon is my rock. He really is the calm strong one between the 2 of us. I count on him for everything...I count on him to be there. I need him!!!!

Fight my love!!!!!
And PLEASE, let me be the "sick" one.

6 comments:

  1. This is part of your path that will eventually lead to making you even stronger!
    Keep fighting and keep reminding yourself that this short-term pain is required to lead to the long-term GAIN!
    We are all thinking about all of you!!! Hang in there guys! You are all fighters!!!!

    Marci

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  2. How about no one gets sick? I'm following the numbers, and appreciate you keeping us up to date.

    Jack Orenstein

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  3. Taly -- our thoughts and wishes are with you. Hindy & I are already in whatever registry there is for bone marrow. Alexander is 18 and can get himself registered, and Nathan is 16, but big enough so that if age is not a problem, he can put himself in as well.

    Can you tell me what specific type of Leukemia it is? We're close to NIH both physically and with friends who are docs there, so whatever we can do to help we will.

    Love and prayers,
    Bryce, Hindy, Alexander, Nathan & Zoe

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  4. Taly, not sure if you want comments but thought I would reiterate my support. I am sending positive vibes and will stay connected. Please don't hesitate to contact me for anything at anytime. CK

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  5. Justin mentioned something about him being tested to see if he could be a bone marrow donor. I'd like to be tested too -- can you give me the contact info for Brandon's physician or hospital?

    Jack

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  6. Taly - I just want to say that I'm praying for you that God would encourage your heart and give you the strength you need right now as mommy and wife. I'm also praying that God would direct the drs as they treat Brandon, and that Brandon would begin to feel better and be encouraged through this as well.
    Love and prayers,
    A friend from VA

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