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Coming Home From The Hospital

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KristaLF Total Reaction Points: 1
Hi All,
It’s my boyfriends day 0 tomorrow! I am very excited for him, although he is a bit nervous. One thing that keeps us both going is thinking ahead to when he can finally come home. I was wondering what other care givers experiences were once your loved one came home? I was planning on working from home for roughly two months so I can be at home with him and then after that try to return to work with his mom and dad popping in for visits to check up on him. How long did you provide round the clock supervision for your loved one!

Thank you!
Krista

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Krista, fingers crossed everything goes smoothly. The transplant itself felt like a bit of an anticlimax when I had mine as there is very little to it. It's not much more than a blood transfusion in terms of the procedure itself, but it's so much more exciting as you feel it is the first step to recovery.

    I can give you a patients perspective on 'aftercare' but everyone is different and your hubby may want more or less care than me or others. Personally, when I first came home I withdrew a little and apart from my wife trying to help me to eat, I pretty much wanted to be left to myself. I spent a lot of time (probably more than I should) in bed sleeping and not really wanting to do anything as I didn't feel well for a long time.

    I guess you need to be guided by your husband, but it's good if you are able to work from home for a while even if it's just a case of being there if he needs you. Hopefully within that time he will be feeling well enough to fend for himself and if you can make arrangements for his parents to call in and see if he needs anything when you go back to work that will be helpful.

    Depending how he feels the main things to encourage are to try and keep him eating, and to encourage him to get up out of bed and start to build up his strength. I founding eating difficult and had a very poor appetite but there will hopefully be things he can tolerate. Nutritional milk shakes made with a dollop of ice cream became my staple diet for quite a while!

    Hopefully someone will give you a carers perspective but I hope this helps.

    Best wishes as he starts his recovery and please keep us up to date with his progress.

    Regards,

    Steve
  • KristaLF Total Reaction Points: 1
    Thanks Steve, I appreciate it. So he officially had his transplant today and although that is very exciting, the doctor did let us know that there were less stem cells from the donor than they were targeting. Because of this they are changing his medication regime.

    Any change to the plan tends to worry me, but I do understand that rarely do things go as planned! I was wondering if there was anyone else here who experienced receiving less stem cells than the optimal amount?

    Thank you
  • SuePSueP Total Reaction Points: 60
    Hi Krista,

    I'm one of the community champions on this forum, I had a double cord blood transplant in October 2013.

    I can't comment on the low stem cell issue but I have discussed the carer's role with my husband. He had recently retired so he was able to care for me full time after my transplant. His comment is that you will need to be with him for at least the first few weeks. It all depends on his physical and mental state when he comes home. Some people sail through the transplant. I didn't but I I must stress I was 59. Like Steve, I was very withdrawn when I came home and was very weak, not eating, with vomiting and diarrhoea. My husband had to do all the cooking, only for me to reject a lot of it even with him trying to get me to eat little and often,

    The other thing we hadn't foreseen is that I had to go back to the hospital three or even four times a week at first for blood test, transfusions etc. Will this be a long journey? Could someone run him in or run you both in? Blood transfusion days can be very long - could someone else take him in so you could get a day's work in?

    Do you have family and friends who can give you support as well as him? That will be a great help. It may be worth thinking about your support team now.

    I think you're very sensible to look ahead like this.

    I'm now fit and well and we both agree it was all worth it.

    Please keep us in touch with his progress.
    Wishing you all the very best,
    Sue
  • Rachelj01 Total Reaction Points: 64
    Hello Krista

    I trust your partner is doing well.

    I was sent home about a month post transplant and i didn't have a carer, that said i had a network of friends and employed a cleaner all of which was extremely helpful.

    Each patients road to recovery is vastly different, one common trait is fatigue and the advice i would give is to ensure you partner takes regular rests, does not over do things (no matter how well they feel) and that they take a slow, short, gentle stroll every day.

    Plenty of water and nutritious food is obviously invaluable. After these suggestions, it really is about communicating with you partner about their needs.

    I warn you, that it's a tough time for a patient mentally which is why i emphasis the need to communicate. I got feed up of people babying me, i wanted to do things it was the first opportunity to have any control of myself / my day for a long time. It's also the time that the gravitas of what you have been through really hits and what you might go through (GvHD) dawns on you. I'd suggest ensuring that there are good times (good movies, food etc), getting out of the house etc.

    Good luck and don't hesitate to post on the forum we are here to support the two of you.

    Best Wishes

    Rachel
  • KristaLF Total Reaction Points: 1
    Hello All,

    Thank you so much for your responses, we are at day +20 and he is being discharged today. Fortunately he has had a fairly uneventful time in the hospital, with the exception of a fever and high heart rate one night and a rash the next day (too early for that to have been GVHD we were told) and bad mucositis throughout.
    He was allowed to come home on a day pass the past two days which I think helped put us both at ease. One again pretty uneventful, lots of napping and watching TV! But I was relieved to see that he was able to do the stairs in our place with little issue.
    My mother has moved in with us for the next two weeks which should help with the transition.
    I really can’t thank you all enough for your answers here and on other posts in this forum. The Anthony Nolan website has really kept me going through this process so far and it’s been incredible reading the successful stories of other patients.
    Thank you,
    Krista
  • SuePSueP Total Reaction Points: 60
    Hi Krista,
    Thanks for updating us.
    He's done really well to be discharged so soon - good news! I'd forgotten about going home for the day -.it does help a lot as you both get an insight into how you'll cope. It's great you've got your Mum for support.
    Please continue to keep us in touch.
    Best wishes,
    Sue
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