Hello Lisa, this is Gill's Mum - I thought I'd give you an update.
Gill seems to be doing fine and has been off steroids for almost a
week. She's hoping the Dr. will tell her Tuesday to get the catheter
removed. There's been no pheresis for 7 weeks and the last CBC 2
weeks ago had her count at 426k. We are so very relieved and just
maybe for her first wedding anniversary (October 24) life can return
to some form of normal.
We are very glad to be in the Atlanta area and cannot speak highly
enough of the treatment she's received. We seem to think that there
are two other women (one pregnant other just delivered) receiving
pheresis at Kennestone hospital but haven't ventured to speak with
them. I don't want to intrude, maybe I'll leave the Support Groups
website in dialysis and ask one of the angels there to pass it on.
Thanks for thinking of us. High Platelets to all. Bless you all
Joy (Mum to Gill, diagnosed 8 May 2004)




--- In thrombocytopenia@yahoogroups.com, Lisa Schmitz
<catsgreen777@y...> wrote:
> Hi there---Welcome to the group! You aren't Gill, are you? This
sounds so similar to another story we heard where a woman had
recently been married and then had TTP.
> On the scars, they will go down....or they should. I had my
cathetor in for a year and a half and my scar was pretty bad. It's
gotten a lot better.
> You will find lots of great support and information here!
> Glad to hear you are doing so well!
> Take care,
> Lisa
>
> mcarr2 <mcarr2@y...> wrote:
> Hi, I just joined. I would like to tell you a little about myself.
>
> I was diagnosed with TTP June 04, 2004. I had gone to the doctor's
> and was dignosed with a UTI (even with the purpura and vomiting,
> numbness, etc.) and a few days later I was literally hours from
> death when my husband came home for lunch and called the ambulance.
>
> On the ride to the hospital, I couldn't tell the ambulance driver
> what my phone number was and I was drifting in out of conciousness.
>
> When I arrived in the emergency room, I had only 1/4 of the blood
> you're supposed to have, I was so johndassed I was pumpkin orange,
> and my platelet count was 7. Yes, that's 7,000. They told my
husband
> (we had been married less than 3 months at the time) that if I had
> gone to the small local hospital instead of Dartmouth Medical
> Center, I would have died.
>
> I spent 6 weeks in the hospital receiving daily plasma exchanges
and
> undergoing surgeries. During this time, they tried to wein me off
of
> the plasma exchanges 3 times. Each time, my platelet count
> plummetted.
>
> When I asked for a second opinion, one of my doctor's called down
to
> U Mass General in Boston (where they are doing most of the research
> on TTP). It was then that he found out about Rituxan. It's a drug
> that's used mostly for Leukemia patients.
>
> I started having infusions of Rituxan, once a week (5 hour
infusion)
> for 4 weeks, along with my plasma exchanges. Almost immediately, we
> started to see a change. I was slowly weined off of the plasma
> exchanges and by the time 4 weeks was up, I was completely off of
> the plasma exchanges and had spent 2 weeks at home, finally.
>
> Boy, did it feel good to not have a catheder in my chest. My skin
> was finally able to breath again and started healing from the
damage
> the tegaderms did to it.
>
> Since then, I have had blood tests every day, then every other day,
> etc. Now, I only go every other week. All my blood levels are
normal
> and there are (so far) no lasting effects of the TTP - well, except
> for the scars (looks like I've been shot).
>
> Well, I didn't mean to go on like this, sorry. But, if any of you
> have any questions, feel free to e-mail me at khunt@v... or if
> you have AIM, my screen name is VTCowgirlAppy. And, of course, I'll
> be online checking up on this message board.
>
>
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