Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Jan 23, 2023, 12:39 AM
GoodDay5150 GoodDay5150 is offline
Member
 
Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
11 Yrs Post Transplant For Pnh And Covid Ques

I assume that many bone marrow failure patients are on FB or maybe some other social media sites, but I am not. I just had my 11 yr anniversary post transplant, and other than some lingering GVHD, I am mostly in good health. I do need to lose weight and exercise more, like so many others. I am taking Jakafi for GVHD, but I do not have any worsening post transplant issues. As far as Covid goes, I did an antibody test in late 2021 and the results showed that I had never had Covid up to that point. I work for a large company and in 2020 there were a few Covid deaths among co-workers families as well as a few employees. The woman who did the antibody blood draw said that Covid would still be around for another 5 years or so, and she may be right. Hopefully everyone is staying safe and that 2023 is better that the last few years have been. Mario
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
Reply With Quote
  #2  
Old Mon Jan 23, 2023, 04:26 PM
Ruth Cuadra Ruth Cuadra is offline
Administrator
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Mario, congratulations on reaching the 11th anniversary of your transplant! If you don't mind my asking, what kind of GVHD symptoms are your still experiencing? I had some digestive issues for the first few years after my transplant nearly 25 years ago and the lining of my mouth occasionally flares up even now.

That you have managed to avoid COVID in the last couple of years tells me that you are taking all the necessary precautions. Keep up the good work!

Regards,
Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
Reply With Quote
  #3  
Old Tue Jan 24, 2023, 12:39 AM
GoodDay5150 GoodDay5150 is offline
Member
 
Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Ruth, and thanks for the kind words. I think that my only digestive issues were from other GVHD meds that I was taking about 5-6 yrs ago. My primary GVHD symptoms are skin rash and dryness, swelling in my feet and ankles, and my transplant dr. has noticed my mouth showing some signs of GVHD a few times, but it has nvr been painful or very irritating. I also had very dry eyes for a few years post transplant, but they seem to be better lately. Jakafi does seem to be abt the most effective GVHD med so far. I have been lucky to avoid Covid. I have had a few bouts of the flu and prob another 2 sinus infections since Covid started, but no Covid according to the antibody test. I have not traveled out of state or been on any form of mass transit, so maybe that has something to do w/ it also since it's so common to pick up a respiratory illness on an airplane or in an airport.
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
Reply With Quote
  #4  
Old Thu Jan 26, 2023, 04:38 PM
Ruth Cuadra Ruth Cuadra is offline
Administrator
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Thanks for sharing these details. I forgot to mention dry eyes, which still plague me. I keep OTC drops in every corner of my house as well as my purse and my car! There are certainly more trying side effects of GVHD that this, but I'm glad to be able to manage my eyes easily. It's good to know Jakafi works well for you.

Regards,
Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
Reply With Quote
  #5  
Old Fri Jan 27, 2023, 12:43 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Post

Congratulations Mario on your anniversary. I am glad you are doing well. I think COVID added a layer of worry for everyone dealing with BM disease. As far as we know, we have been able to avoid it also. We pretty much followed the vaccination guidelines and since we are no strangers to masking, taking precautions to mitigate exposure was very familiar to us.

Wishing you continued good health.

Marlene
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
10 Yrs Post Transplant GoodDay5150 Transplants 6 Fri Dec 31, 2021 11:36 AM
9 Years Post Transplant! GoodDay5150 Transplants 5 Tue Dec 15, 2020 03:48 PM


All times are GMT -4. The time now is 08:42 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org