11 Yrs Post Transplant For Pnh And Covid Ques

[GoodDay5150]

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

[Ruth Cuadra]

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

[GoodDay5150]

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.

[Ruth Cuadra]

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

[Marlene]

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