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Moving too fast
Hi , I’m new to this but it was recommended to me to try so I thought I would explore
I had my BMT in late May 2019 in a centre about 2 hours away from where I live so I had a house for me and my mum to stay at whilst I recovered expecting to be there until late August- early September however they let me home on July 5th which has worried me that’s too early to be certain everything is okay I haven’t even hit 100 days yet and everyone I spoke to beforehand said I’d be there until then.
I don’t really know how anyone would be able to help but maybe just tell me about your experience after being discharged from isolation:)
thank you in advance
Comments
Hi there,
Welcome to the forum, I'm one of the online community champions and a transplant patient myself for ALL in January 2013.
It's actually surprising how quickly you can come home if things are going well. I was let home only three weeks after my transplant as my counts were starting to climb. I guess you've had 6-8 weeks in hospital since transplant which will hopefully give your body a good resistance when you get home.
The hospital will still monitor you closely and this will involve regular checks as an outpatient, but it's possible they may have kept you in longer given the distance from home to reduce your travelling. The hospital will no doubt have gone through the precautions you need to take when you bet home as your immune system will still be in its infancy, but you will hopefully recover quicker in familiar surroundings. Being away from the sterile environment of hospital also helps your body build up the immunities to the daily environments we're exposed to, provided we don't overdo it at first. So being around home will be good for you.
It's also good to get away from hospital after being in there so long and whilst it may feel a little unnerving, it's good to have that safety net of the hospital check ups to keep an eye on you. And of course, if anything feels strange to you, or you feel unwell, call the transplant team straight away so that they can either reassure you, or check things out further.
Your recovery will still take a long time unfortunately as a stem cell transplant is a huge impact for your body to take, but build up gradually, don't try to overstretch yourself and take your time. Recovery will happen and fitness will return in good time.
How are you feeling generally? I hope you've had a straightforward experience without complications and that it continues. Hopefully your appetite is coming back and you are eating well to regain weight, as we all lose so much.
I hope this gives you some assurance that you will be OK at home and I'm sure others will share their experiences of coming home. Please keep us updated with progress and let us know if you have any questions, we are all here to help.
All the best,
Steve
Thank you so much Steve
My experience was (I believe) one of the better ones I had read seeing as I didn’t loose any weight and had an appetite back on pretty much day +14 after minimal mucositis unfortunately did get struck with a bit of low level CMV
Since then they have take me off cyclosporine on day +48 which also was quite stressful as I thought that didn’t happen til after day +100 too so everything felt so fast obviously I know to not expect be able be in crowds for a while or go back to normal life.
Thanks also for responding and welcoming me I’ll be sure to help out others when I’m in a better physical position further down the line