platelets

[kellym]

hello, when my daughter has a platelet transfusion she gets very bad tummy aches that last about half hour, just wondering if anyone else experiences these?

[Ryan Jay]

Hi there,

I remember being woozy after Plt transfusions. Do they give her anything before hand? Some places do and some don't. Does she feel the same way during PRBC transfusions?

How about the hospital food? Sometimes the soggy pizza that they serve can have that effect. And then there's being nervous because you're new to all of this.

In any case, make sure you tell your infusion nurse about any changes ASAP!
I'm sure they've gone over that with you.

Ryan

[kellym]

the nurses are not sure why she gets the tummy aches, so i gave her some paracetomal and it did the trick, no tummy aches.

[Ryan Jay]

Sounds like it did the trick!

When I had full-blown AA this summer, I felt all kinds of weirdness. I was dizzy with hot flashes and just a general "yuck" feeling in my stomach.

She should be getting ready for treatment soon...ATG allergy test etc...
I felt a lot better once they admitted me and we started treatment.

Also, make sure you push for horse ATG and not rabbit. Horse has been shown to be twice as effective as rabbit in recent studies. I don't know what the standard is in England, but continental Europe is almost all rabbit ATG from what I've heard.

Keep us updated once she goes into treatment.

Our thoughts are with you,

Ryan

[kellym]

hello, im glad your feeling better now, we saw the consultant this week and he did another bone marrow aspirate on her to see if she has worsened, we will have the resullts in a couple of weeks then we will decide on treatment.

he talked about starting atg in about for weeks he said they use either rabbit or horse, so i will ask him aboiut it next time i go.
He talked about side effects ect which sound a bit of a worry, i hope she deals with it ok, he also mentioned the risk of developing lukemia later on, but there is risks i suppose with whatever you do.

ella seems to be coping remarkably well, she still runs around all day eats lots and is not tired lol.
It is a relieve to finally be talking about treatment as the diagnosis has taken so long.

How are you now? are you in remmision?

[Ryan Jay]

Hi again,

Here is the article on Horse vs. Rabbit. http://www.hemonctoday.com/article.aspx?rid=78418

This just came out about two months ago. If your doctors look like they are considering rabbit, you should ask for a good explanation as to why.

Don't worry about a disease until you have it. Progression to leukaemia is pretty rare with aplastic anaemia, and the "what ifs" can drive you crazy.

At the five month mark, I am in remission with my counts continuing to climb.
At my worst: my HGB was "4," my ANCs "300," my Plts "3." Now I am hovering around: HGB "11," ANCs "2000," Plt "70."

My cyclosporine trough had fallen from 300 to 138 and my counts started to plateau. Since my kidney and liver function were normal, they boosted up the dose to 400 mg to see if my counts could get a little higher by the six month
mark.

This has been my experience, but everyone's AA is a little different, so it's important that your doctor get to know your daughter and how she responds to all the treatments.

Good luck.

Ryan