TTP - Rare Disorders Message Board

SHIRLEYINVA · 03-02-2001, 10:02 PM

WILL ANYONE WHO HAS SURVIVED TTP AFTER 1 EPISODE,PLEASE ANSWER ME,I NEED TO KNOW IF EVERY ONE IS ABLE TO WORK,AND HOW LONG IT TOOK TO GET BACK TO WORK.

Chris777 · 03-07-2001, 11:47 AM

Shirleyinva - I was diagnosed in July '99, lowest platelets at 13,000, had mild stroke, spent ~5 months in/out of hospital, had 54 plasmapheresis treatments, spent 2 months @ home (w/no IV's, no central line, no nothing) just getting back to being able to withstand living my normal life. Went back to work full-time late January 2000 and have been at it ever since. To this day I am not back to exactly the way I was before, still have some very very minor "aggravations" from the TTP, (i.e. occasional dizziness, the rare headached from ____!!!) but I'm just happy to be alive and living life again. Best of luck to you, my prayers are with you.

Chris

Quote:

Originally posted by SHIRLEYINVA:
WILL ANYONE WHO HAS SURVIVED TTP AFTER 1 EPISODE,PLEASE ANSWER ME,I NEED TO KNOW IF EVERY ONE IS ABLE TO WORK,AND HOW LONG IT TOOK TO GET BACK TO WORK.

Christine VR · 03-09-2001, 03:39 PM

hey there,
Well even though it may seem like you will never get back to your normal life, eventually you do. I have had TTP on and off for 11 years and each time has been different in the recovery time. After me last episode I went out in April of last year and returned to work in August. My latest episode started back in Dec but I still haven't returned to work yet. Hopefully soon. Good luck with your TTP. Hopefully you are one of the lucky ones that never gets it back a second time. You ar in my prayers.
Christine

SHIRLEYINVA · 03-09-2001, 08:36 PM

Christine, So glad you are doing better.I don't know how you have survived this nasty disease for 11 years,but I guess you do what you have to.I also got sick in Dec.and was doing pretty good til today.My lower back(across top of buttocks)is giving me a fit,been taking strong pain killers today,don't know what is going on.I sure hope it's not related to illness,am supposed to get my last pheresis treatment Tues. and then 3 arm drips to taper me off.I'm sure looking forward to being off the pheresis treatments.I will pray for you to stay out of the hospital a long time!!keep in touch

phylly · 05-07-2001, 08:15 PM

Hi there Shirleyinva! I've been dealing with TTP for about two years now and had a lot of difficulty admitting to myself that my body wasn't physically ready to go back.
Brief (!?!?) history:

Was initially admitted in 1999 at 4k. 3 or 4 relapses where I was admitted at 23, 50 and 13k. Had over 70 plasmapheresis treatments, several VERY BAD allergic reactions (the first one was an anaphylactic reaction) a total of four central lines at different times (neck and chest), had to also deal with a chest tube because of a collapsed lung and a severe blood clot in my arm while in hospital for TTP, plus the usual neurological stuff, medication etc.

I wanted to go back to work as soon as I started feeling a bit better, but was urged by my family and doctor to give my body some time to heal. This was a good idea because I realized that although I THOUGHT I was okay, I wasn't 100% (trouble focusing, fatigue, etc). Anyway, even though I took time off (4 months), I went back to work too soon (I think) and had a relapse within a couple months. Finally (RELUCTANTLY) had a spleenectomy done in October 2000 after my third (fourth?) relapse and have been A1 since (keep your fingers crossed!!)I can definitely sense a difference in the way I feel now and when I THOUGHT I was okay.
I've been told that stress and body trauma can cause a relapse. Judging by my own experience, I suggest you give your body time to heal.
Best of luck with this nasty disorder. You're in my thoughts!