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Mini transplant with non related donor. Lots of questions.

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HarshmanHarshman Total Reaction Points: 1
I have MDS & MF I need mini transplant which the VA is currently contacting donors. Worried about isolation & infection.

Best Answers

  • greg777 Total Reaction Points: 57
    Answer ✓
    Hi Harshman,
    Welcome to the forum although sorry you had to find it.
    I think isolation and infection are two of the things a lot of people worry about, so that is natural. The medical teams in my experience are very good at managing the infection side of things whilst you are in hospital so try not to worry about that. When you are at home, I found it much harder. I have 3 young children so it was really hard to avoid infection as they are always picking things up. My wife is a primary school teacher so that didn't help either. For me, it is a balance. You want to protect yourself but you have got to live life as well. I am one year post-transplant and I am still much more aware of things like washing hands, avoiding people who are obviously ill, that sort of thing. But there is very little that I don't do now compared to before the illness. So I live life and don't really worry about it.
    And that links to isolation as well. There are times you will have to be isolated - e.g., early on post-transplant. It is tough mentally but something you have just got to do to get yourself better. My suggestion would be to take something into hospital that will keep you occupied - books, films, music that sort of thing. And now is the time to do that thing you've always wanted to do - so for me it was to write a book. For me, I didn't feel majorly ill very much (I think I was lucky though) so a lot of the battle was keeping my head occupied.
    Please feel free to ask any questions about the process. I have had a full auto and a mini allo transplant so happy to help. My donor was my brother but I know lots of people on here have had a unrelated donor transplant so could help there too.
    Wishing you all the very best,
    Greg
  • SuePSueP Total Reaction Points: 39
    Answer ✓
    Hi Harshman,
    I do hope a donor can be found for you fairly quickly. I had a reduced intensity (is this mini?) cord blood transplant three years ago as a matched donor couldn't be found for me. I had previously had an autologous stem cell transplant so I've had two long spells in isolation. I didn't find it too bad as my family could still visit and the staff are in and out of your room all the time and can often make time for a brief chat. And there's the phone, text and email and your own tv. Like Greg, I took books, audiobooks, films, crafts (though I doubt if you knit) in with me but once I'd actually had the transplant, I just slept most of the time.

    I didn't have much of a problem with infections but my husband is retired and there are no young children in the family so I wasn't exposed to many coughs and sneezes.

    Do feel free to continue to use the forum either for support from other transplant patients or for advice from the Anthony Nolan professionals.

    Wishing you all the very best,
    Sue
  • greg777 Total Reaction Points: 57
    Answer ✓
    Hi Harshman,
    I am glad the post was of some help. I was lucky that I only live about 10 miles away from a transplant centre so I was allowed home after a couple of weeks. I know if I would have lived further away I would have been required to stay near the hospital for a similar period of time. The first 100 days post transplant are when infection risk is highest and when acute GvHD can surface which can be quite serious so you need to be close to the hospital. My hospital has apartments for people in this situation which whilst not home I believe are better than being in a hospital for that length of time. Hopefully that will be the same for you. As it happened I ended up with acute GvHD and spent about 70 days of the first 100 in hospital anyway. I am not going to lie - it was horrible - but I am now a year post-transplant and it is a distant memory. It is tough but with of the tips I talked about in my other post, you can definitely get through it absolutely fine.
    Wishing you the very best,
    Greg
  • SuePSueP Total Reaction Points: 39
    Answer ✓
    Hi Harshman,

    Gosh, do you live a long way from your transplant hospital?
    Sue
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 51
    Answer ✓
    Hi Harshman,

    Thank you for posting on the forum, I am the specialist nurse in Anthony Nolan patient services. Greg, Sue and Steve have given great advice having been through it themselves. I fully support everything they have said having worked with transplant patients and families for many years.

    Isolation and infection are often the 2 biggest concerns that patients have pre transplant and that is very understandable. As well as using the forum you should have a transplant co-ordinator or nurse keyworker who can talk you through the process of finding a donor, how to prepare for the transplant and what to expect after the transplant. We can sometimes overwhelm you with information so my advice would be to take it slowly, think about what is important to you right now and take it a step at a time.

    There is lots of information about post transplant support on the Anthony Nolan website which you can find at https://www.anthonynolan.org/patients-and-families. There are patient stories and patient written information too. I would recommend The Seven Steps for pre transplant preparation and The Next Seven steps for post transplant recovery. We also have a podcast on infections that you might find useful you can find this again on our webpages https://www.anthonynolan.org/patients-and-families/get-support-us/listen-our-podcasts.

    Keep us updated and I am sure you will find the forum a good source of support.

    Best wishes
    Hayley
  • Mizo Total Reaction Points: 2
    Answer ✓
    Morning Harshman. Glad to hear things are moving quickly for you now, but I understand how anxious that might make you feel.
    I am 4 yrs post transplant. As others have said I won't lie and say it was fine because it wasn't. At times it was quite difficult being in isolation and I ended up in there for 6 weeks. However the staff are brilliant and make sure you're coping and look after you so well. I did have numerous infections but they were dealt with swiftly which was always reassuring.
    As the others have said, take things with you which will keep you occupied, although to be honest I too slept most of the time afterwards. Try and keep positive, at 4 yrs post transplant I am back to work and living a realatively healthy normal life. Good luck
  • greg777 Total Reaction Points: 57
    Answer ✓
    Hi Harshman,
    Wishing you all the very best with this. It's likely to be a tough road ahead but you can do this - there are loads of people who have been where you are and have come out the other side. Keep strong.
    Greg

Answers

  • HarshmanHarshman Total Reaction Points: 1
    Thank You Greg & Sue for your quick response. We have been told we have to be away from our home for approximately 120 days. We are staying positive and strong.
  • HarshmanHarshman Total Reaction Points: 1
    Yes we live about 30 miles which takes over an hour to the hospital in traffic. The VA said they will put us up in an extended stay motel closer to the hospital. Thanks Greg & Sue again for your positive answers.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi Harshman,

    Good advice above from Greg and Sue and I echo that advice.

    Infection is just something that you have to be cautious and sensible about. It's a case of making sure you don't expose yourself to unnecessary risk, so avoid being around people with coughs or colds and other nasties whilst your immune system is low. Once your system starts to pick up again you can relax a little, but even 4 years later with my system back to full strength and my immunizations complete I am still a little freaky about cleanliness and hygiene, but that's not a bad thing.

    In terms of isolation, don't think of it in terms of 'total' isolation. In reality you can still have visitors and medical staff will come and go in your room just the same. The difference is that they will gown up when your immune system is at it's lowest and any visitors with coughs or colds should stay away. We've all probably seen documentaries on television in the past where there is a child in an isolation room where the only contact their parents have is through a glass screen, but the reality these days is some way different and there is no reason why you shouldn't expect to maintain contact with your loved ones.

    The main issue with being in isolation is occupying the time, but these days with wi-fi services in hospital if you take a tablet or laptop with you, you can keep in touch with wider friends and family and access internet and TV services to keep you occupied, though as Sue says after your transplant you will feel weary and probably spend a lot of time sleeping.

    All the best with your treatment and please keep in touch with us here as and when you need support.

    Regards, Steve.
  • HarshmanHarshman Total Reaction Points: 1
    Thanks everyone for your support. 4 donors are being matched to find best donor. Moving quicker than we expected. Hayley, I have downloaded both seven steps and will review the podcast on infections. Thanks again.
  • beckybrambeckybram Total Reaction Points: 18
    Hi as said above anthony nolan website and Facebook page are a great help when preparing for transplant also looking at peoples blogs who are going through/been through transplant I found helpful. As for isolation and infection I too worried about this a great deal before transplant as I live in Cumbria and my transplant was in London which meant a 7 hour car journey or 4 hours by train and taxis. We stayed in London for my transplant approx 6 weeks in hospital and then a few months after transplant as needed to be seen at least twice a week at the hospital. Once you get into the swing of things it is possible with some organisation and careful hygiene care.best wishes for your upcoming treatment it is all very daunting at first but with a positive attitude it is all possible and it is a stepping stone to better health in the future
  • HarshmanHarshman Total Reaction Points: 1
    Thank you for all the insight which is a huge relief knowing this will be a positive change and looking forward to starting the process soon.
  • HarshmanHarshman Total Reaction Points: 1
    We will be checking into an extended stay hotel that is closer to the VA Hospital on April 5th. Tests starting on the 6th for 7 to 10 days then wait for results. BMT should be end of April or first of May with a non-related donor. Told us it will be 5 to 6 months away from home before immune system will recover. Wish us luck.
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