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Early experiences after STC and discharge?

hello I am currently on day +7 after my unrelated allogenic Transplant on a low intensity regime.

so far I am doing well all though constantly reminded that I will soon feel poorly by the medical staff….but bloods should start kicking in and start moving in the right direction by Day +11-12.

I would be really interested to hear others early transplant experiences as I can’t find much online.

?? how long did it take for your bloods to start to improve HB / WBC etc?

?? How long after day zero until you were discharged?

?? We’re you relatively well as I have been so far (fingers crossed this continues!)

any other early experiences you would like to share would really be appreciated.

Best Answer

  • Accepted Answer

    Hello BL8

    My name is Michelle, I am a stem cell recipient and online community champion.

    My journey was complex post day 0 due to a genetic fault I had meaning my recovery was complicated and required a second transplant. However, when I got the second transplant I started grafting between days 14 and 16. This presented with my neutrophils being 0.1 and every day they went up a little. There where some fluctuations and my body needed support from GCSF injections and transfusions.

    I had my first SCT in January where I stayed in hospital until my second in the May. By June I was out and at home recovering. So the second went as it should have done at the start. Which was a relief.

    My Red blood cell count increased gradually too.

    Everyone responds very differently, so this is a good conversation to have. It will be helpful to alot of other patients and families to hear others experiences of the early stages post SCT.

    Please keep intouch if it help would be great to hear how your doing.

    Best wishes

    Michelle

    (Online Community champion)

    BL8

Answers

  • Hi
    It’s great to hear that things are going well so far.
    I had a relatively easy time of it compared to many other patients when I had my transplant in March 2014 and apart from fatigue didn’t have any significant side effects.
    To answer your specific questions I was allowed home sixteen days after my transplant. I was doing ok and as I live very close to the hospital they agreed to let me go on the grounds I could get back very quickly if I needed to..They also probably got tired of me nagging to get out!
    I really struggled with sleeping and eating whilst in hospital. Once home I could sleep for twelve hours at a time but the appetite took a bit longer to come back.
    I did have to have two rounds of donor lymphocyte infusions the following Autumn and these did the trick in pushing my chimerism to 100%.
    Eight years on I’m fit and healthy so whilst not everyone is so fortunate I hope my experience shows you that things can work out very well for you.

    chelle_16Tom_AnthonyNolan
  • Hi BL8, I'm Steve and like Michelle am an online community champion and had a stem cell transplant in January 2013.

    I had sickness and diahorrhea which kicked in a few days after the transplant as a side effect of the final chemotherapy before my transplant. That lasted probably about a week at its worst but I continued to struggle with eating and sickness for some time afterwards and lost a lot of weight and strength.

    Similar to Martin, I was allowed home about 3 weeks after transplant as my counts had started to increase enough to have a little freedom. I went home on a Friday but over the weekend I developed an infection in my mouth which made it incredibly sore. When I returned for a checkup the following Monday I was readmitted for another week until the infection had been treated (with a series of mutliple mouthwashes and antibiotics). I was then allowed to return home again and thankfully the infection didn't return.

    After that my recovery was very gradual but slow. I was readmitted a couple of times more for a few days during my recovery, largely due to weakness due to an intolerance of food, so I struggled to gain weight and fitness. I went through a phase of passing out, but after a multitude of tests including MRI's, ECG's, blood tests and X-rays there was no explanation other than total fatigue.

    In my case it took probably over a year to start to feel more normal, though after around 6 months I was able to go about daily life reasonably normally, albeit cautiously. I suffered from GvHD on my skin which prolonged my recovery and meant I was on Ciclosoprin for a long time post transplant. It was the steroids used to treat my GvHD about three months after my transplant that kick started my recovery as they finally gave me some appetite and I got some strength and fitness back quickly.

    I'm now approaching 10 years from diagnosis and am 9 and a half years post transplant and I can look back on it all as a bad dream. My fitness has more or less returned to pre-transplant conditions, though I do get tired more easily (perhaps thats also me getting older) and I feel normal in myself. The only lasting effect for me is some chemobrain, which means I have some difficulty remembering names or struggling to find words. That's something I've learned to live with.

    It's good that things appear to be going OK in your case and hopefully in the days since you initially posted nothing has gone wayward. If it has, keep going. We will all have blips along the way for one reason or another but keep battling through and focus on your recovery and the end goal of getting back to normal.

    Everyones experience of transplant is different as we are all unique. Some will have relatively smooth experiences, whilst others will have complicated ones. Take it one day at a time and deal with things if and when they crop up and try not to think of the things that might happen as they might not arise. Be aware of anything unusual or changes in your body or feelings and discuss them with your medical team. It may be nothing, but making your medical team aware means they can react to anything if they need to.

    I hope this and the previous responses from Martin and Michelle help, but please do ask more questions if you have them and keep us up to date with how you are progressing.

    Best wishes,

    Steve

    Tom_AnthonyNolanchelle_16Unknown
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