SHIRLEYINVA
03-03-2001, 01:02 AM
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.
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Chris777
03-07-2001, 02:47 PM
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
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.
Chris
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.
SHIRLEYINVA
03-08-2001, 05:46 PM
CHRIS777,Thank you so much for answering my post. It is encouraging to hear from a survivor! Do you know what might have caused your TTP? I pray you will continue to be ok,I know what you mean about the dizziness & headaches,I guess it's just after effects of the disease.If you ever want to "talk" E-Mail me at trent@preferred.com take care.
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SHIRLEY
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SHIRLEY
Christine VR
03-09-2001, 06:39 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
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, 11:36 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, 11:15 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!
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!
Ilona
06-16-2001, 07:59 PM
Phylly: What kind of plasma did they give you? They gave me four FFP exchanges, and I had awful reactions, so they finally gave me SD plamsa, which carries a different set of risks, but at least you can't get HCV or HIV from it. I had no reactions from the SD plasma so long as I took it with Benadryl.
HaveFaith
06-19-2001, 08:59 AM
Hello to those who suffer TTP. I was diagnosied in Nov. of 1989 after treatment of a bleeding ulcer. Have had about 125 plasma exchanges in the last 12 years, with lots of reactions. The past episodes have mainly been treated with prednisone. I have had a relapse in the last week.
SHIRLEYINVA
06-19-2001, 09:57 PM
To anyone who has TTP..When you have a relapse,how fast do the platelets drop? I was curious because mine have held really good until recently (a month or so) the last 4 have been 289k,288k,233k and last week 211k,I know they are not at a dangerous level yet,just wondering if someone could tell me about how fast they usually drop.
Thanks
Thanks
Christine VR
06-30-2001, 07:12 AM
Hey Shirley,
usually once my platelets go below the 150k mark they drop rapidly, but it is not the same for everyone. Some people can live perfectly healthy lives with platelets in the normal levels. keep in mind that your platelet numbers will fluctuate so don't worry when they drop down 5-10k. The only time to worry is when they are below that 150k mark. I know it is stressful to have your blood tested and see the numbers fall but don't stress yourself out about it. If I have learned anything it is that stressful events in my life cause relapses. So even though it's hard, just relax, you won't get very far worrying. I hope that I have calmed your nerves a little bit. If you need to talk please email me. You can reach me at cvonraesfeld@home.com or daizy625@hotmail.com. Hope to hear from you soon. Also I know I have posted this a million times but I am in the process of getting together a non-profit for TTP. If you are interested in being a part of it let me know. We have a big support group of people all over the US and the UK who have been through all of this and can help you through those tough times. We are all praying for you.
Christine
usually once my platelets go below the 150k mark they drop rapidly, but it is not the same for everyone. Some people can live perfectly healthy lives with platelets in the normal levels. keep in mind that your platelet numbers will fluctuate so don't worry when they drop down 5-10k. The only time to worry is when they are below that 150k mark. I know it is stressful to have your blood tested and see the numbers fall but don't stress yourself out about it. If I have learned anything it is that stressful events in my life cause relapses. So even though it's hard, just relax, you won't get very far worrying. I hope that I have calmed your nerves a little bit. If you need to talk please email me. You can reach me at cvonraesfeld@home.com or daizy625@hotmail.com. Hope to hear from you soon. Also I know I have posted this a million times but I am in the process of getting together a non-profit for TTP. If you are interested in being a part of it let me know. We have a big support group of people all over the US and the UK who have been through all of this and can help you through those tough times. We are all praying for you.
Christine
SHIRLEYINVA
06-30-2001, 03:44 PM
Hi Christine,
Thanks for responding to my question concerning platelet drops.My last one was 203,still in a decline but not as bad.I know I shouldn't worry but I can't seem to help it,especially since I read about Wanda.There is a lot we don't understand about TTP isn't there?God Bless and thanks for caring.
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SHIRLEY
Thanks for responding to my question concerning platelet drops.My last one was 203,still in a decline but not as bad.I know I shouldn't worry but I can't seem to help it,especially since I read about Wanda.There is a lot we don't understand about TTP isn't there?God Bless and thanks for caring.
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SHIRLEY
phylly
07-04-2001, 12:25 AM
Ilona:
I'm not sure what the correct anacronyms are but..
the first week they gave me large bags which contained plasma from several different donors of the same blood type. The first reaction caused my throat to close up. Then they started with the same types of bags, only they would give me LOTS of Benedryl first. I still got hives, nausea and puffiness all over my face and body.
After having a reaction every time during the first few days, they opted for around ten smaller bags where ONE donor's blood was in each bag. They would give me a premed of min 50ml of Benedryl and more often than not, they'd have to top me up with another 25-50 during treatment. If a bag caused too much trouble, they would sometimes give me more Benedryl and a new bag. I only had a few severe reactions with the smaller bags (nausea, chills and really brutal hives)with the smaller bags. They never used those large bags on me after the first week.
ON THE SAME NOTE: Treatment always went much more smoothly if I feel asleep (which wasn't too difficult with all that Benedryl pumped directly into my veins!!) When I slept, I seemed to get fewer (or no) reactions.
I'm not sure what the correct anacronyms are but..
the first week they gave me large bags which contained plasma from several different donors of the same blood type. The first reaction caused my throat to close up. Then they started with the same types of bags, only they would give me LOTS of Benedryl first. I still got hives, nausea and puffiness all over my face and body.
After having a reaction every time during the first few days, they opted for around ten smaller bags where ONE donor's blood was in each bag. They would give me a premed of min 50ml of Benedryl and more often than not, they'd have to top me up with another 25-50 during treatment. If a bag caused too much trouble, they would sometimes give me more Benedryl and a new bag. I only had a few severe reactions with the smaller bags (nausea, chills and really brutal hives)with the smaller bags. They never used those large bags on me after the first week.
ON THE SAME NOTE: Treatment always went much more smoothly if I feel asleep (which wasn't too difficult with all that Benedryl pumped directly into my veins!!) When I slept, I seemed to get fewer (or no) reactions.