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10/15/2009 01:08 PM

long term effects of ttp??

ttpfog
Posts: 4
New Member

Hi All,

I can't beleive i just found this support group. Didn't know there was such a thing. I first had ttp in the fall of 06. I haven't felt well since. I am just wondering if this is normal?? I ache everywhere, exhausted most of the time. if i go good for a day it seems i am exhausted for 2-3 after. I have episodes, that I sound like I am drunk, short term memory loss, please someone, tell me if this is normal.. platlets are perfect today..

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10/18/2009 07:37 PM
Judy27
Judy27  
Posts: 54
Member

Hello TTPfog,

I will try not to dwell because I TRY to look at the positive side ---I had TTP/HUS last year at this time ---since then I have gone back to work---I am fatigued to the bone , headaches, bad vision, ache all over , vertigo, memory loss at times, high blood pressure, bowel problems--- I just don't feel "normal" since this hit but I keep trying to tell myself "that time heals" --- I see you haven't had TTP for 3 years ----Do you work at physical labor like I do? I get so tired sometimes that I feel like I can't take another step but I push on! I TRY not to talk about this stuff and just deal with it but I saw your letter and I was like "WOW" I am not the only one! My platlets are good as are all my other levels but my poor old body cries out "pain, help me, sore sore ,sore! " Anyway I am plodding on and just thankful I am not in the ICU like I was last year having platelet exchange and blood transfusions!

In the spirit, Judy


10/19/2009 06:01 AM
ttpfog
Posts: 4
New Member

Judy27, Thank u so much for replying, I try not to dwell on things either, but, after 3 years of being paranoid, I really would love to feel the way i used to, At times my eyes are so blurry I can't see right, and I get double, triple vision, Many times I am driving and realize I shouldn't be on the road, as I space out, and can't concentrate on driving, I recently have been finding little purple bruises they say are ok, time will tell I guess. I also have a condition called RSD. Chronic pain! TTp at least isn't painful, or at least in my case it wasn't compared to the RSD. I am just really frustrated with the major fatigue and all the other things that seem to come with this. as every time I have a real bad spell with this, I am scared the ttp has come back. How does a person ever get over the paranoid state?? cuz, as we all know, that if u miss the symptoms, the outcome isn't good. thanks again, anymore info on your lingering effects would be very much appreciated. TTp fog

10/20/2009 11:21 AM
Judy27
Judy27  
Posts: 54
Member

Hello TTPfog,

I am not sure what RSD is? You sound alot like me ---- I worry ALITTLE about the TTP coming back someday but I joke and say "I want to be the one that says " I HAD that ONCE!" It was horrible to have ---stayed in the hospital wayyyyyyyyyy to long and felt "out of body" for many months! I still "haven't totally touched Earth but I am working on it! " My thumbs get really sore --strange --- I am stiff in the mornings and alittle itchy here and there ---headache always under the surface and vertigo when I lay down and stand up and many other things ! Gees----- DO you work? What age group are you in? I am 54 years OLD and feel like a ancient Warrior most days! Have a pain free day! In the spirit, Judy


10/20/2009 06:44 PM
totoks
Posts: 59
Member

Hello Judy27,

You are my inspiration many days. On bad days I check this site and see an encouraging post from you--and life is better. We may never be totaly cured but the muscle aches, headaches, foggy brain, and fatigue seem easier to deal with when we know others are having the same struggles. We are living this a day at a time together, miles apart. Thank you for your posts.


10/21/2009 12:30 AM
Judy27
Judy27  
Posts: 54
Member

Hello Totoks,

Wow I have the BIG head now! GRIN! ( Just what I needed SOMETHING else! ) HAHA

How are you feeling? It is pretty iteresting to see you deal with the same "left over" things from the TTP too! Ain't it grand! Buttttttttttttttt ---at least we are out of the hospital and enjoying life ! I had some hot chocolate the other day and a chocolate cookie and was thinking ---" augh the simple things of life !" Sheer bliss! Smile

Thanks for your kind words! When you have a bad day give me a personal message if you would like---I love seeing mail in the message box! ( always makes me smile to know someone is thinking of me! ) See --I DO have the BIG head! GRIN! Take care and have a grand Fall day! In the spirit, Judy


10/21/2009 04:27 AM
ttpfog
Posts: 4
New Member

I am totally amazed that other people have the same "left over" feelings as I, My hematologist is wonderful, however, really didn't seem to know what I was talking about when i tell him how i have been feeling, I keep telling him I feel as though I have had a stroke, and I suppose it is highly possible that I did. All I know is, it is so comforting knowing I am NOT crazy, and Judy27, RSD is a chronic pain syndrome I have had for 13 years, and no i do not work, I haven't been able to work for 13 years. unfortunately, and I am 43, just turned. I look at every birthday as a huge blessing with all I have been through.. thanks again, any more information would be greatly appreciated. ttpfog

10/28/2009 12:54 AM
geekmonkey
geekmonkey  
Posts: 15
New Member

Sick

Hey all... I am finally happy to find other people who post-TTP suffer from similar ailments as me.

Quick Background: Diagnosed with TTP July 30th, 2009. Stats at time of admission to ICU:

Platelets - 32k

kidneys - imminent kidney failure; 5% functional

high blood pressure / hypertension: 210/110

Released August 18th, 2009 after 15 plasmapharesis treatments, and countless blood work. Having a quint catheter is no walk in the park either.

Anyhow, been about 2 months out, suffering from severe, and I mean SEVERE joint pain. When I go outside, my eyes feel as if they are pressurized, and every so often, I see shadows, and see things "move" in my peripheral vision. My hematologist is telling me that I am in remission based on the recent blood work, but that doesn't resolve the after-effects.

Glad to have found this group, and hope to learn more from others.


10/28/2009 05:19 AM
ttpfog
Posts: 4
New Member

Do u sometimes have where u get double, triple vision? man, i can't beleive how the after effects of this, are almost worse than having it, my platlets were 24k had all the usual treatments, had a relapse, and more of the usual, have been "good" for almost 3 years, but still feel like dirt. so tired all the time i feel like i could just sit and cry, but it takes way too much energy. lol. I just can't beleive that there are others that feel the same as i do. what other residule effects do u have?? curious and happy i am not alone. ttpfog

10/28/2009 09:42 PM
totoks
Posts: 59
Member

Has anyone had any luck with eye doctors? I don't know if there is anything they can do to help but I realy hate not having clear vision. I told my eye doctor about the HUS/TTP but I don't think he really paid any attention. How do we educate them so we can learn more to help ourselves?

My dentist seemed to take note when I told him.

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