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Old Mon Dec 1, 2008, 10:39 AM
squirrellypoo squirrellypoo is offline
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Join Date: Nov 2008
Location: London, UK
Posts: 458
Thank you SO much for all your support and consideration everyone! I'm finding it quite difficult to talk to people about this as it's still so fresh for me, though I'm making a point to tell others around me despite the difficulty as I think it's best to have the support there when I need it. I like to think that all of this is making me a more compassionate person, too. So perhaps some good will come out of it, which is still a difficult concept for me right now.

I'll try to answer a couple of questions here...

Oh, and my name's Melissa if you feel funny referring to me as squirrellypoo!

Quote:
Originally Posted by Neil Cuadra View Post
If they recommend ATG again, do you know if it would be horse ATG or rabbit ATG this time?
As far as I know they're looking to try what worked last time around, which was the horse ATG (and if that works for 25 years again I'd be thrilled!). But that study by Prof Marsh is very interesting, thanks for finding that!

I'll know more when I go to see Prof Marsh in a month's time, I believe.

Quote:
Originally Posted by Dan2008 View Post
Do you remember what where your counts in 84 at diagnosis?
At the time of diagnoses is 1984, my platelets were at 16,000 (whereas they're hovering around 50,000 now) and my hemoglobin was 8 (I don't know my current hemoglobin off the top of my head).

Quote:
Originally Posted by Dan2008 View Post
And did they test you for PNH back then?
I just had all of my childhood records faxed to me from the States, and I didn't see any mention anywhere of PNH, so I don't know whether that's because it wasn't tested for, or just because it wasn't relevant because it was negative.

Quote:
Originally Posted by Marlene View Post
2 - Same regarding runners. There have been some AAers in their 20's who were very sports oriented who have recovered and been able to incorporate sports back into their lives.
Thanks, this is a great hope for me. There are a few others who messaged me privately who are also finding ways to fit exercise back into their lives, which is what I really, really would desperately love right now. But at the moment my body is really telling me not to push it as much as I'm craving the running...

Quote:
Originally Posted by Marlene View Post
There is fairly new drug called Soliris that has been approved for PNH in the states.
I saw a link somewhere that it was recently made available on the NHS here so that's good to know that it is available should I need it.
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