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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Long Term Hospital Stays

Hi All,

Was just wondering if others on here have experienced long-term hospital stays post transplant. My fiance has now been in the hospital for ~9 months, with the exception of ~2 weeks about a month after his transplant. GVHD of the gut is what has kept him in there along with having to deal with PTLD. As I'm sure you can imagine he is going a little stir crazy being cooped up his room and is also pretty down/pessimistic about ever getting out. I have also found it very tiring given I work usually 12 hour days and then go to the hospital each night to see him for a couple of hours.

I'm just wondering if there are others out there who have experienced long-term stays like this and have any advice or just general comments on what their time was like while in the hospital.

Thank you,
Krista

Gabby

Comments

  • Hi Krista, I’m sorry to hear that your fiancé has been in hospital for so long. That must be really tough on both of you. Unfortunately I can’t really give you any constructive advice as to how to cope with the boredom he must be feeling.

    Throughout my time in hospital I used to write a blog, which at least gave me something to do for an hour or so each day, though on my worse days, particularly after my transplant I often didn’t feel like writing.

    With access to the internet I used to do genealogical research and as I’d written a draft of a factual book about my family history my time in hospital gave me time to proof read, fine tune and edit my book.

    I guess it’s about finding something that occupies the mind and at least helps pass some of the time.

    You mustn’t forget about yourself either. You sound like you might be in danger of burning yourself out if you’re working long hours and then visiting your fiancé every day. Whilst I realise you will want to see each other as much as possible you may need to think about giving yourself a break now and again. Is there anyone you can share visits with and perhaps keep in touch by phone, Skype or FaceTime? Be careful not to tire yourself out.

    Hope this helps in a small way.

    Best wishes to you both,

    Steve

    chelle_16
  • Hello Krista

    I'm a new online Community Champion here along side Steve and others.

    I'm wondering how your partner is now and where you are both at in this journey?

    I relate entirely to yours and your fiances long hospital stay.

    It is challenging especially on both of your mental health and fatigue.

    I was also in hospital far longer than expected due to part of my SCT failing. We only discovered that was the issue after 4 months of being acutely unwell after my Day 0. I wasn't in hospital quite as long as your partner however 7 months before discharge and I can imagine the frustration he is experiencing.

    The first 4 months I don't remember due to the failing marrow however I had ways to occupy myself in between the times I was asleep. I tried to keep focused on a routine. I found that the daily routine was enough to keep me occupied in the early days. But once I gained more energy I tried to do little and often; spending time watching the Ipad, listening to music, I tried to read but found my eye GvHD didn't really agree with it. I tried to draw as it is something I have always enjoyed.

    If there is anything that your partner enjoys i.e. a particular sport or topic sometimes having magazines with lots of picture sin can help focus on something else rather than words. Images can prove to help stimulate thinking and engagement without too much effort.

    I also borrowed a games console off a friend that passed an hour or so every now and again. Also going for very short walks or sitting in a different area if he is able too.

    I get the sense that you, yourself are reaching a point of exhaustion too. It is important that anyone on this journey with a loved one takes time for themselves too because if you are unwell you can't be there for your partner. Take some time for yourself if that means having one evening off visiting, which can cause some guilt but I'm sure your partner will understand you needing a rest. Trying to find time for relaxation or rest. This can be achieved in setting a side 10 minutes or so to 'check out' some calming music, a short story or podcast. All these can be helpful to encourage 'taking a break'

    All the best,

    Michelle

    Dieseldrinker62
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