TTP - Rare Disorders Message Board

BAL · 05-18-2001, 05:51 PM

I am a physician. I have apatient with TTP. She was diagnosed 10 years ago, had no relapses until 1998, and has three since -- includeing a stroke. She desperately wants to get on with her life -- she is young (late 30's) -- wants to return to work -- but is very anxious about how her condition might affect prospective employeers, and her ability to work. She's appreciate any input from those of you living with TTP and how you cope with the fear from day to day.

Thank you -- She does not have internet access, so I'll pass all messages on to her, and pass her responses back to you. BAL

Chris777 · 05-30-2001, 11:28 AM

Hi Bal,
What a great thing you are doing for your patient in passing this info. along to her (all we want when suffering through TTP is to know that there's someone out there w/the same disease who IS living a "normal" life). To your patient: I was dianosed w/TTP in July 1999, spent 6 months in/out of hospital, 54 plasmapheresis treatment, also had a stroke....etc. etc., finally in Jan. 2000 my Dr. actually said the word "remission", whewwww! I took it easy for a couple months (no treatment, no tubes, no iv's etc.), just weekly platelet counts (cbc's) until I went back to work through a temp. service, they knew of my illness only because a friend worked there. After 3 months of working temp. I found permanent employment, my employer does not know of my past illess (or of my past period) nor do I intend to share it with them. I am not embarrassed by it at all but just don't feel that it has any significance on my work performance and besides that, work is the only place I can be where TTP is not a part of my life, I can kind of forget about TTP while I'm here. My co-workers don't completely freak-out if I"m ill one day like my family and friends might and thats kind nice sometimes.

Wish you had access to e-mail, will be happy to communicate w/you somehow. One of my closest friends now (even though we've never met) and is very special to me, in that we were and still are, there for each other through this dreaded disease (& after) - we met on this message board (i think it was this one), point being - you need a friend who understands exactly what you're going through.

My prayers are with you.
Chris

BAL · 06-01-2001, 08:55 PM

Thank you for your replies -- I saw my patient in the office today --- she is increasingly anxious and depressed -- unfortunately I did not pick up your messages until this evening -- I will pass them on to her on Monday. I am trying to establish some E-mail acess for her through my office computer -- she feels so alone and doesn't feel her family/friends understand the fear she has -- especially of another stroke. She had been getting headaches more frequently, so her hematologist has taken her off of the cyclosporin -- which has heightened anxiety even more.

What modalities are your hematologists using?? Who isconsidered the "best" on the East Coast??

Thanks again. BAL

Christine VR · 06-02-2001, 01:17 AM

Hi there Bal, well I can't speak for the east coast because I am here in california. My doctor is Raji Ayyar, and she great. i know that there is a doctor in Texas who does a lot of research on TTP. His name is Joel Moake, I think. My doctor gave me his name. Anyways I have chronic migraines and see a neurologist in addition to my hemotologist. they work together in my case. Currently I am taking elavil for my headaches and problems sleeping. It has helped as I do not get migraines as much as I used to or as bad as I used to. A lot of us with TTP do have headaches in our "remission" periods. Please let her know that she is not alone and there are a lot of us out there who are keeping her in our prayers. If you don't mind answering, how old is your patient? When was she diagnosed? how long did her TTP last? Was this her only episode? Was there anything that brought about the disorder? Sorry there are so many questions. You can posts about others with TTP on this message board. Good luck to you and your patient.
Christine

Chris777 · 06-08-2001, 01:18 PM

Bal

I certainly understand her anxieties about all of this. I had several Drs. while in the hospital, my main Dr. is a Nephrologist and worked w/my (2) Hemotologists. As for the headaches, we tried just about everything imaginable including some pretty strong pain killers and finally came up w/using Fioricet, they have and still do work like a charm for me. I know they're for stress headaches, but hey I guess I was pretty stressed! Point is they work for me. I still get the occasional headache, usually a tylenol will help and if it lasts several hrs. I'll take a fioricet - headache gone.

Still have some minor diziness as well, but nothing I can't live with (do I have a choice?). I still worry about TTP but not nearly as much as I did, I'm just thankful to be alive and living life.

Take Care!
Chris