Hey there I am new to this group my partner is 112 days post matched unrelated donor stem cell transplant for Melodysplasia currently in hospital for over 3 weeks and I am worried, confused and little tired. Up until day +76 his counts were great and he was going for 30-60min walks putting weight back on and doing extremely well for the stage of transplant as even stated by his consultant in the letter.
Few weeks latter he got readmitted with pneumonia for 8 days and then 2 weeks latter back in the hospital again with neutrophils low again with EBV virus and skin infection.. Luckily counts again returned he was treated with retuximab for EBV which is apparently gone now treated further with different antibiotics for chest/skin which got better and was due to go home yesterday but of course out of nowhere temperature spikes to 38.1 that morning that we though we will finally be back home together... he is frustrated and tired I am trying to calm him down and comfort with deep inside myself feeling same.
Is this normal? up until day 88 or so he was doing so extremely well chimerism is 99% counts are up too but he cant seem to stop getting something.
Thehighlander Thank you a lot for your reply! They had to take sample from his lungs and now growing it in lab before the can treat it. Of course once again some atypical infection. They suspect it’s PCP on antibiotics now just to control it but lab needs to come up with best drug.
He seems to be coping better than me I am really not taking it on so easy not being able to be there 
I know he is not eating much at all so scary. Oh well at least going back to hospital is normal. He is now just turned year post transplant. I’ll try and look for a book or something to help with stress and anxiety I really need to get strength somewhere to be able to go to back to work tomorrow and deal with people 
I was off most of the week couldn’t face world and had Covid scare... by the way I hope you are ok 
️ thank you for always getting back.
I do hope they find the best fix for him quickly.
One of my post SCT infections had me in for a week on NHS DB&B. It turned out to be the RSV Virus which turns out to be very contagious so I was put in a lockdown room for a week and apart from staff in COVID type PPE, no one was allowed into see me for the week so I sort of get the challenges.
Funny thing was, I was in a bad way so had been taken by ambiance to hospital and put into a 6 bed assessment ward.... 6 hours later my respiratory consultant (who is a very good friend) came up to see me.
He and his hangers on closed the curtains round me stuck a ‘Do not enter - full PPE to be used’ sign on the curtain and he said you are now in quarantine....... with great big spaces above and under the curtains 
Haha good story...Good to laugh at the stories once it’s in the past.
He is alone in the room and only staff can come in but of course that’s Covid infection control. It just seems to be always longer for him 
It’s already been a week because he is still waiting for drug to be matched and we don’t know how long until they know....probably will know next week and another 2 weeks minimum to be there :/ I just hope they soon start treating him with the right drug i check his CRP and other counts daily on patient knows best app and sometimes maybe I shouldn’t as that scares me. :(
Thanks so much ️ And he is in good hands I must control my feelings before I get sick I think.
