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

Hi Bal,
I am in the process of starting a non profit group for TTP. I have a list of people in the US with this disorder who I contact through email. Since your patient does not have email, it makes it a little difficult but not impossible. I would love to hear from her. You can contact me at daizy625@hotmail.com.

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

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

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

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

Bal,

Sorry - I failed to mention what treatment was used for me.

We did Plasmapheresis (total of 54 times over 4 months)and Dipyridamle (platelet inhibitor), started out at 50mg down to 25mg. This along w/potassium, iron (actually Chromagen). They were about ready to take my spleen out when I miraculously and as quickly as it came, it all just went away and my platelets decided to stay at a healthy, safe level.

Chris

Hi, Bal. You're unusual for a physician... to actually look to patients for insights is quite unusual in the medical profession... I know this not only as a TTP patient, but as a daughter, because my mother was the first woman thyroid and thoracic surgeon in the country, and a more arrogant creature seldom walked the earth, although the hematologists I saw in NYC were her equals in that department. I was hospitalized with TTP for two months Aug.-Oct. 1999 at the age of 46. WBC rose to 14K, LDH to about 700, plates sank to 5K, (I know different labs use different standards, but these numbers should tell a story anyway), never had kidney failure (those functions were barely elevated) or stroke. More than 50 pe's failed to permanently raise my plates, but vincristine sure did the trick. However, without quoting every med journal I ever read, I came to believe that my TTP was an initial response caused by an ONGOING infection, although I'll never be able to prove it, and Feb. 2001 I was finally diagnosed with late stage Lyme Disease, have been treated with three mos. of doxycycline (which has been used successfully in several hospitals to treat TTP... how's that for a coincidence), and am now in a double blind trial to see whether people who have been treated with doxy for Lyme Disease (LD) but have relapses can be treated with amoxycillin. In retrospect, I believe I was infected with Lyme Disease a few months before I came down with the TTP -- I was walking around covered with black and blue spots for about a month and a half before I finally dragged myself off to a doctor, who promptly hospitalized me. Who knows, it could have been an E coli, and unfortunately, there's no test to show it now, and when I was hospitalized, they refused to look for ANY infectious source. At the fiercest point of the TTP, the symptoms that plagued me the most in addition to the TTP symptoms were what I then called migratory joint pains but which I know call lancinating muscle pains and synovitis, because they were the link that led me to believe I had a tick borne illness and on to an infectious disease specialist. At the height of the TTP, my whole body, in particular my hips and knees, were feeling about ten little lancinating pains per second per area, and when my plates were falling again, I could always tell because the frequency of the lancinating pains would pick up. Even after the vincristine rocketed my plate count up to 450K, and during the subsequent year and a half, I had some of those pains, although much less frequent, even going up to a minute between pains, and it was the fact that the TTP went away, but the lancinating pains stayed, that finally prompted me to look further. Okay, so maybe the Lyme and the TTP were coincidental. Maybe. Maybe not. Borrelia, bartonella, babesiosis, mild ehrlichiosis are all emerging diseases whose symptoms are unknown to many physicians. They're all linked with TTP, some more tenuously than others. All i know is that up until the age of 46 i was strong as a horse, stayed in the hospital all of 10 hours when I gave birth, had only the occasional flu, and then suddenly they're sending a priest round to give me last rites while at the same time they're telling me i've developed an autoimmune disease for which there's no known cause. They talked about performing a splenectomy, but I picked up a med journal article detailing relapse rates in patients with splenectomies, and they didn't look all that encouraging, so that was going to be a last resort for me. In my case, vincristine brought my plates up to circa 450K within a day. I had two treatments, and they've been in normal range since. I wonder what would have happened had I been treated with doxycycline. As for fears, well, I doubt I'm going to come down with it again, because I think that next time, if there is a next time, I'll be taking antibiotics, assuming any precipitating infection is amenable to antibiotics. Please understand, I am not an antibiotic junkie; for 20-odd years, I barely took a handful of aspirins a year at the most. I also keep promising myself to take better care of my teeth because of the unproven anecdotal links between tooth abscesses and TTP. As far as East Coast specialists, there's a lot of research at Montefiore/Albert Einstein in the Bronx. Those people are friends with Joel Moake, whose name was mentioned in a previous post, and who I believe is in Texas. At Mt. Sinai, in Manhattan, at least one doctor believes in high steroids (yecchh!!!) and at New York Cornell Presbyterian they believe in splenectomies (also yecchh!!). I don't know what they favor at New York University Hospital or at Columbia Presbyterian. Do I blab about my experience? Absolutely, to anybody who'll listen, because what I went through is a stain on the integrity and reputation of the medical profession. I've come to the conclusion that each of us must be his/her own advocate, in medicine, in law, in any area in life, that complete trust in a doctor, a lawyer, anybody, is misplaced, and it was the TTP experience that led to this sea change in my beliefs. Thank God for abstracts available on the internet, for hematology textbooks, the New England Journal of Medicine, Blood, etc. etc. which I read and re-read a hundred times over until I finally understood what they meant. I know not everybody is interested in this kind of study, but hey, when you're stuck in a hospital bed for two months, there's not much else to do. Best to you and your patient.

To all of you you who were so kind and supportive to my patient --
I had been on vacation for the past 9 days, and I returned today to find out that Wanda had died suddenly on June 18. I still do not have any final reports, or ER notes. I can tell you all that she came to the office and read your messages. We were both so encouraged by what you all had to say.
Wanda's platelets had started dropping ever so slowly just before I left, and she decided to re-start cyclosporin while waiting for the hematologist appointment.
We both appreciated your insights -- I will post more information as it becomes available. Once again -- thank you. Beth L.

Hi Beth,
I just wanted you to know that we were all sad to hear about Wanda. Have you recieved any information on what had happened. Please let us know. We are all praying for her and for you as well, as I know it must have been hard to lose a patient. Keep us updated on Wanda and also how you are doing. It was a sad thing to have happened. If any of her family needs to talk please let them know that we are here for them also.
Christine
daizy625@hotmail.com

Beth -

I'm very sorry to hear about Wanda's death -- as I'm sure you know it obviously concerns us all (I think I'm safe in saying that) as to what complications she had. Please update us with as much info. as you are able to divulge.

My prayers are with her family during this difficult time.

Chris

Beth again -- I saw Wanda's daughter in the office today. I gave her site address, and hopefully she'll be able to offer some more personal insight. She told me that Wanda called her at home and told her she "just didn't feel well" and was going to the hospital. Once there, even before her daughters could get to the ER, she apparently had a massives stroke, or PULMONARY EMBOLISM. The ER doc also told he daughter that the x-rays showed a pneumonia -- I'm not positive this was the correct reading of the x-ray -- I haven't seen the report itself (news travels patetically slow in some circles) but if it was, it was rather sudden. The biggest question Wanda's children have now -- "Is this hereditary" ??

The one positive feature of a "rare disease" is that by being the unfortunate bearer of such a burden, you are also the experts. If any of you has researched the genetic aspects, please post. I'll continue to look also.

In the see one, do one, teach world of medical education -- I have seen 2 cases of TTP in 5 years -- I'm now as expert as some hematologists in practical experience. That is a frightening thought.

One last self-serving statement -- I came to medicine very late (44) in life -- I've has more experience as a patient. a parent, and a concerned daughter. My persective is a little different from "straight liners" -- sometimes a good thing , sometimes not -- but that's the way it is.

Thank you all -- Beth L

Beth,
I am so sorry about your patient,what I really can't understand is why? I know death occurs with this disease but rarely.Was she not started on apheresis?We that suffer from this disease really need some details.
You and her family are in my prayers.

------------------
SHIRLEY

Beth,
I read yyour updated post about Wanda's condition and I must say that it scared me to death. I am a 26 year old survivor of TTP and my last bout was started by a case of pnemonia (which we didn't find out about until later) and pulmaonary embolisms. Luckily we got both under control but after this episode my TTP flared up. Thankfully having had the disease for such a long time I noticed symptoms early and had my doctor admit me. I have thought about Wanda every day since I heard the news. I think it is a big hit to those of us that have the disease. I know we would all like to think of it as "curable" Obviously there is so much more that we all need to learn about this. I am still in the process of doing all the paperwork for my non-profit. If you would like to help in any way please let me know. Also for those of you new to the board please feel free to email me at daizy625@hotmail or cvonraesfeld@yahoo.com. I have been living with TTP for 12 years now, I know how difficult it can be on yourself and on your family members. If anyone needs to talk or someone to listen, please feel free to email me.

They keep a registry -- I believe in Italy, but you can access the information via Medscape -- of certain cases of familial TTP. It's only a small minority.

Beth: I posted this message before, but somehow it didn't get on. I'll try it again. One of the problems is that information on TTP is not collected in any one place that's easy for physicians and patients to access. Med textbooks and journals have different and even contradictory takes on TTP, and I don't think doctors realize that they have to wade through many different sources before they can figure out what's going on. In addition, the different populations who come down with TTP have different sets of problems and possibly respond differently to different treatments. I mean, the E coli set is going to be different that the HIV set or the stent set or the Ticlid set or collagen vascular disorder set or the idiopathic set. One bit of luck I ran across while in the hospital is that a friend managed to get a hold of and send to me statistics of a small group of patients who were treated experimentally with the column. I noticed that all of those who died had relatively high platelet counts -- some above 100K -- but also had LDH levels well up in the thousands -- yes, plural thousands. It's a small clue, but one that perhaps is relevant. It certainly interested me, because my LDH never got above 700 even when my plates were 4K and hemoglobin was around 6 or 7. It's a question that I never saw addressed. Another point that I was unable to find out much research on is the different subtypes of LDH that come into play with TTP. Another interesting point is how necessary it is to scrutinize the standards used by researchers. In some papers, a "successful treatment" was one in which the platelet count stayed above 150K for two consecutive days. Now, you don't need an advanced degree to figure out that that's hardly a cure; I knew that first hand, since I careened for two months on a roller coaster ride that would bring me up above 200K for several days and and then right on down to the teens a few days later with these insane exacerbations that ended only with the vincristine. As far as familial TTP goes, if I recall correctly the size and amount of von Willebrand factor differs between people with idiopathic TTP and people with familial TTP IN BETWEEN episodes, which indicates to me that Wanda's children could get themselves tested, although it may be that everything looks normal until after the first episode. I don't remember what article I read that in, but you can track it down on Medscape. It deals with metalloprotease cleaving factor production. I don't understand why this information isn't available to doctors on, say, computers by the bedside. A doctor should be able to look at what studies show are the best treatments for the E coli TTP patient versus a pneumonia or a stent TTP patient. They shouldn't be doing this in the dark. Computers can perform huge math operations in a second, and they can retrieve this sort of information too. So why hasn't someone stepped in with this business idea? In a related issue, when I was hospitalized I called both the Gates Foundation and Apple to ask about their starting a program to provide a laptop on loan to hospital patients. They both said no. My prayers to Wanda's family.