Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Hospitalized for 7 weeks now, any advice helps.

More
3 years 2 months ago #70568 by gozorakgogo
Replied by gozorakgogo on topic Hospitalized for 7 weeks now, any advice helps.
where did you go and what did you do as soon as you escaped?

Please Log in or Create an account to join the conversation.

More
2 years 9 months ago #71648 by Zach Tarver
Replied by Zach Tarver on topic Hospitalized for 7 weeks now, any advice helps.
Been a long time since I’ve updated, I got out of the hospital after 2 months with platelets at 0 basically. 2 weeks out of the hospital and my numbers went up to 300,000. I’ve been in that range for the last 6 month now! Get weekly Nplate dose of 1 and I’m almost off cyclosporine

Please Log in or Create an account to join the conversation.

More
2 years 8 months ago #71697 by mhprice2000@msn.com
Replied by mhprice2000@msn.com on topic Hospitalized for 7 weeks now, any advice helps.
Glad you escaped! I keep having to go back in now and then when my count gets too low. Hoping yours stays up and you stay out of there!

Please Log in or Create an account to join the conversation.

  • amberyard
  • Offline
  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
More
2 years 5 months ago #71881 by amberyard
Replied by amberyard on topic Hospitalized for 7 weeks now, any advice helps.
Everyone deals with ITP differently. I was 0k-3k for a whole month, went to infusion center every morning to get a bag of platelets then went to work. I'm only hospitalized when bleeding won't stop or for my spleen removal (which didn't help). Currently I get n-plate every Tuesday with CBC.

Please Log in or Create an account to join the conversation.

  • MariLinTx
  • Offline
  • Ret. RN/attorney, wife/mom/grandma ,Dx. 2/1/22. Fear has worn off as Doptelet is working. Now just trying to be an active family member and deal with,ITP, CAD, labile BP, CKD, back pain & mobility issues; neuropathy; migraines, and more. : (
More
2 years 1 month ago #72172 by MariLinTx
Replied by MariLinTx on topic Hospitalized for 7 weeks now, any advice helps.
I am SO sorry to hear your hospitalized so long. I’m so new to this diagnosus too -3 weeks. I spent 4 days in hospital with IVig and steroids . Sent home with numbers in 70s. Then quickly dropped to 50s and 20s. More steroids outpatient  and IVig. Counts get to 50 and drop about 10,000 per day ☹️.  Scheduled for marrow biopsy next and Ritumax (sp?) infusion outpatient. No talk of Readmittance unless numbers get below 20. I’ve not had any bleeding though. Found count at 7 only through routine labs and a few ‘bruises’ of unknown origin on my arms. 
Best of luck to you. I hope things stabilize snd you get home soon. 

Please Log in or Create an account to join the conversation.

More
1 year 9 months ago #72459 by Toby-Wan-Kenoby
Replied by Toby-Wan-Kenoby on topic Hospitalized for 7 weeks now, any advice helps.
I have been down to 0 count and my base level is 2. Also thought I was invincible. Never had a nose bleed. Worst was couple of blood blister in my mouth. 
Last Monday I had a 5 minute episode where I first lost mobility in my right hand fingers and then lost the ability to speak. Drove to the nearest hospital. CT confirmed small brain bleed platelet transfusion stopped that. Still 2 day stay. Now I am scared of low levels. I just measured myself after IVIG yesterday at 11 and today it’s down to 9 again. It’s scary. 
Diagnosed 7/2019 let the fun begin...

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
1 year 9 months ago - 1 year 9 months ago #72462 by mrsb04
Replied by mrsb04 on topic Hospitalized for 7 weeks now, any advice helps.
TOBY1
Are you being cared for by haematologists who specialise in ITP?
Were you not given TXA?  
Platelet transfusion is a waste of a donation  if it is a platelet destruction ITP.
IVIg is only ever a temporary fix (if it works) and can cause Hep B +ve antibodies. 

Please Log in or Create an account to join the conversation.

Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use