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Scott had his haplo transplant today

andym

Super Moderator
That does sound brutal. But I am so glad he is starting to be able to swallow the Ensure. It is so hard to eat when it is painful. So kudos to him for pushing through. And no transfusions does sound like good news too.

My protocol was easier than his but there were still parts that were harder than I imagined beforehand. And I know how tough this is on you as the caregiver. There was so much that I wasn't allowed to do back then and that all fell on Stephanie.

But the results have been so worth it. Keep that possibility in the back of your mind while you go through all the hard work and tough times. In the meantime, just one day at time is enough. It will slowly get better.
 

Moxie

Member
What a time to had to go through this with everything going on. I know you must be double scared. I'm glad he got through it.
 

Step2

New member
What an ordeal for him! I'm glad to hear that he could drink the Ensure. (I remember blending mine with ice cream.) Thinking about both of you.
 

frankhond

Member
This is definitely a bad time. I got a calendar of sorts for my sct, with days color coded... these days you will have difficulty eating, these days you will have such and such symptoms... and these days we expect you to feel better, these days your values should be up. Maybe you got something similar, and Scott is in the red part right now. But there will be blue and green days ahead. Thinking of you.
 

limeylass

New member
Yes we got the calendar but it stated when blood counts would be expected to come up, not how he would feel. However the Drs did tell us days 5-14 after transplant are the most difficult.
Scott is still in hospital - a week now. Has barely eaten. His bilirubin was elevated so they didn't want to put him on TPN ( IV nutrition ) because of risk to his liver.
However on day 14 which was yesterday, finally his white blood counts were visible. Barely but his throat felt slightly better. Today they are up again and his bilirubin is normal. So that's good news. His throat is much better. However he still has nausea and has the most vile upset stomach ( can't even go into details....he hasn't eaten anything but manages to have diarrhea of sorts several times a day ) Not fun times you are right. But Im feeling better about it. Had a really terrible weepy day on Friday but yesterday & today I feel hopeful. Drs seem pleased that his blood counts are on the way up and said this will clear up as they continue rising. Thanks all for your support.
love Annette
 

andym

Super Moderator
Hold onto that hope even through the weepy days. This is hard and you need both emotions to get through.

And also hold onto what the doctors are saying. For us this is a unique event but they have seen it before and know how much more and more white blood cells will help.

Hoping that those better days will be here soon.
 

po18guy

Active member
It gets better - it really does

Days 5-14 certainly sound familiar. I slept a lot, curled up. I walked some but had little energy to walk. I did not like the 24/7 IV at all. Showering seemed like 10X the effort to receive 1/2 the result. Mostly, I felt institutionalized, even incarcerated. It was July and my room overlooked the Lake Union ship canal. What's worse, the blue angels were flying overhead. I wanted so badly to just take a few steps outside, but...

After two weeks, I had sufficient cells to go to our rented apartment. It went well after that and, oddly enough, I kinda miss those urban walks to the store and for a sandwich or coffee.
 
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