September 11, 2019 at 4:23 pm #48827Amy ClarkParticipant
Rose, I was relieved to hear from you on the GVHD thread and now this one, albeit sad he is having trouble on a daily basis from GVHD at this point. Thanks for updating all of us. We really do want to hear and will keep praying for a good outcome from this point on and relief from the GVHD. I had read too that the chimerism reports after a HSCT can fluctuate for awhile and was surprised to find that out. Hopefully day 180 will bring better news. God bless you, AmySeptember 12, 2019 at 10:16 am #48829
Rose, I’m so glad to see you updating your diary. I pray for strength for both of you. Have you and your husband returned home yet or are you still staying close to the hospital?September 12, 2019 at 10:37 pm #48842
So we are on day +160 and they did another chimerism test today. We will know in 2 weeks how the transplant is going. They also tapered the prednisone from 60 to 30 today. His counts are great and we have actually taken a train to NYC to just visit and walk around. I thank you for the prayers and encouragement.February 25, 2020 at 1:04 am #50192
Hello eveyone. My husband is getting better but he is not following a consistent uptrend. It is more like a balancing act between not so good days and bad days. It is because he hasgvhd and cannot seemed to be weaned from prednisone. Every time he is down to 15 mgs., his ankles, sometimes arms, sometimes both, start to swell and redness. His eyes too become bloodshot -as if blood vessels broke.his eyes are not painful. There is pain though when his legs or arm swell. But he was considered well enough to travel so we flew for a 7.week vacation to the Philippines. We are here now and closely monitoring the coronavirus outbreak in south korea.this is our stopover enroute to jfk on march 9 and we are scared that he may get infected. We are seriously thinking of buying new tickets for a straight flight to jfk – no stopover. We do not have enough meds to wait out the outbreak. Wish us luck!February 25, 2020 at 10:24 pm #50200
Praying for a safe trip home infection free. Keep us posted.February 26, 2020 at 8:46 am #50202
Thank you Pat. How is your husband? I continue to pray for strength for all of us touched by this bewildering MDS.February 26, 2020 at 6:10 pm #50205
He was in a trial for vidaza and venetoclax for 14 months but then he quit responding to it and started needing blood and platelet transfusions again so he just finished his first round of Decitibine to see if he responds to that.February 29, 2020 at 10:03 am #50216
Oh I hope he responds to Decitabine well. I continue to keep you both in my prayers. Chris and Paul too.March 18, 2020 at 6:34 pm #50373
Hello. We are back in the US. Arrived March 10. It is our 8th day of voluntary self quarantine, and we are just grateful that there is no sign of any CoVid infection. Stay safe everyone.March 18, 2020 at 7:39 pm #50374staceyParticipant
So very glad to hear you have both made it back o.k.
-StaceyMarch 19, 2020 at 2:33 pm #50450
Rose I’m so happy to hear you both got home safely. I’m sure that was a very stressful trip home. How is he doing? Staying in is what you both need you’ve got to be exhausted. Stay safe and God Bless you both Pat
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