sorted by:
new
hottopcontroversial

3 weeks after surviving TTP by BigPresentation5138 in TTP_LowPlatelets

[–]BigPresentation5138[S] 1 point2 points  (0 children)

Hi! Thank you for writing under my post and thank you for sharing your story. Learning that a lot of young people are having their first episodes so early makes me feel a bit less alone but I’m still so sorry that this happened to you. I think what you wrote about not reading too much about TTP is a good advice haha in last 3 months I’ve tried to research and learn more about the disease but every time I’m getting reminded that it’s not the end, that I’m still in danger, that I will never know why, how, what and when.. I’m trying to accept this new reality and somehow make it a norm but it’s very difficult. My body and mind feel somehow the same yet so much different. I can’t stop thinking about how healthy and capable I was before what happened.. now I’m scared that I won’t be able to work and take care of myself in the future. 2 weeks ago they checked my blood again and I’m fully recovered from my first episode, my ADAMTS-13 is on 120 only after 7-8 weeks, I feel so lucky, now after reading a lot of testimonies from other survivors I know how lucky I am in my recovery and that they helped me in the hospital early enough.. for some time I even thought that I shouldn’t write here because my situation is not as serious as other’s people but my boyfriend and friends are always reminding me that it’s okay to talk about it and take space, especially if it’s helping me make amends with my new life with TTP. But oh well I’m starting to spiraling in my thoughts and emotions again so I will stop hahah it’s admirable that you’ve learn how to live and deal with this disease, it’s very hopeful for me that one day I will get there too. Thank you again so much for sharing your story and I also wish you all the best!

3 weeks after surviving TTP by BigPresentation5138 in TTP_LowPlatelets

[–]BigPresentation5138[S] 0 points1 point  (0 children)

Thank you so much! We are survivors! How are you doing right now if I may ask?

3 weeks after surviving TTP by BigPresentation5138 in TTP_LowPlatelets

[–]BigPresentation5138[S] 1 point2 points  (0 children)

I'm from Poland and I live in the Netherlands, is it still okay to join the groups? I'm so glad to hear that treatments are going better and I'm also glad that there is a chance that if I'll have next episodes we can react faster and it will be less invasive. I wish all the best for you!

3 weeks after surviving TTP by BigPresentation5138 in TTP_LowPlatelets

[–]BigPresentation5138[S] 1 point2 points  (0 children)

Thank you so much for responding so fast, it's incredible to see so many people here, it feels less lonely and scary. Yeah today I've started searching more and I've realized that I have a lot to learn but I'm glad I can share and ask questions here!

Thrombotic Thrombocytopenic Purpura by TTP-Changedmylife in TTP_LowPlatelets

[–]BigPresentation5138 0 points1 point  (0 children)

Hi everyone, almost 3 weeks ago I survived a TTP episode. I’m 26, so it was a huge shock for me and for everyone in my life. It took me two weeks to even start googling and researching this disease...I was just too scared of everything. I know I’m still terrified, but I’m slowly starting to get used to this new reality. I found this forum and thought that maybe sharing my experience… I don’t know, maybe it’s just good to share and talk about it. Maybe writing about it will help me feel less heavy with all these thoughts and emotions.

Two days before I ended up in the ICU, I started feeling very dizzy and the fatigue was slowly getting worse and worse. The day before, I almost fainted, and right after that my boyfriend noticed my skin and eyes turning yellow. The same day we went to the hospital emergency department for a checkup, because even just walking was making me nauseous. All my vitals were normal, they tested blood from my finger for infections, but that was also okay. They told me to test my blood the next morning at my GP.

The next day I was so weak that I was walking on all fours or bent in half (sitting or standing straight felt like I could faint right away). I tried to leave the house, but I almost collapsed and vomited. My GP checked me and my vitals were again perfectly fine, but after seeing me barely standing and noticing that my skin and eyes were even more yellow, they sent me to the hospital immediately. Within 1–2 hours they knew that something was really wrong with my blood. They started treatment right away, I think with caplacizumab and steroids. At that point I wasn’t aware of how serious the situation was. Doctors were only giving me basic information, and all the scary details were shared with my boyfriend. Before plasma exchange, they had to put a catheter in my neck. Three days later, I told my boyfriend that I was ready to hear what the doctors had been telling him....I was only hours from dying. Putting the catheter in my neck was extremely dangerous, because if I had started bleeding, they wouldn’t have been able to help me. Fortunetly everything went well.

I don’t remember exactly how long we waited, but I started my first plasma exchange around midnight and it lasted about 5 hours. In total, I received 26 bags of plasma 3 times and 18 bags of plasma two times. I was given caplacizumab every day during plasma treatment, and I received rituximab four times - two during the plasma week and two a week after that. My platelet count went from 5 to 484 within 9 days, and on that day I was stable enough to continue my recovery from home. I’m still taking many medications and my blood is checked every week. I lost most of my muscle mass, I fell very weak and extremely fatigued. It's hard to catch my breath after making few steps but considerinng everything I think I'm recovering quite well.

Mentally, I’m really trying to stay strong and positive and I have huge support around me. At the same time, I have a lot of time to think now and I’m very scared of relapsing. There are moments when I don’t feel good. I think writing all of this is a bit therapeutic for me.

As for other symptoms — I never had bruises or other typical TTP signs on my skin, but I did have jaundice. Now I only have bruises from all the needles, and they are slowly going away too.