Hi just wondering if anyone can give me some advice. My mum is due to have an allo transplant - we are still waiting on whether she has a donor and when it will happen. (only had initial appointment with bone marrow consultant- next one is in 2 weeks) We were due to go on holiday in May and we know we will be cancelling this and are hoping to postpone it till later in the year. I still want to give her something to look forward to but i was wondering how long after the transplant is a realistic time frame for a holiday? I know everycase is indiviudal but just wondering how anyone else have found this? Thanks

Hello, they normally advise not to go abroad at least for the first year after an allo, the immune system is just like a brand new one, a baby's so it takes quite a while to develop any immunities at all, in fact she will most likely eventually need to go through all those immunisations again once that first year is well through! Honestly, it is well worth being handy for the hospital anyway, just in case any problems arise! ( not that they will! ) where would you be wanting to go to? If it is a 'clean' country and your Mum is doing really well post allo they might be willing to consider it, but please don't count on it just in case. Hope all goes well and she has a donor, do keep posting! xxx

Hi thank you that gives me some idea to pre warn her before we ask the question to the consultant .. she is a bit down as we had booked a family holiday in lanzarote for her 60th so we had said delay till later in the year till she is better so was hoping would still give her something to look forward to. You are right as will need to be careful as would be awful if she got poorly whilst abroad and at least here we can always get to the hospital. We have our next appointment on the 18th so hoping to find out if she has a donor and well it will happen... had the first scary one a couple of weeks ago where they go through all the risks. I think after leaving that appointment we had so much to take in we forgot to ask any questions! xxx

hi again,

The team should be able to answer questions, I hope you had a nurse specialist in the appointment with you? It might be possible to contact them or at least the consultant's secretary if you have a burning question that you forgot to ask then. We spent a whole hour in, that first  appointment time, too, and it is scary and difficult to remember the things you want to ask. 

Could it be possible to bring that holiday forward while you are all waiting to find out dates and donors? It might help her fitness level so she is stronger to go through this. But again I would talk to the team if this is something you might consider. 

but there is hope at the end of that tunnel, honestly.....

big hugs for you all xxx

Hi thanks again for replying its great to hear from someone who understands what we are going through!

The team is amazing, she has been at james cook for treatment but going onto the freeman in newc for transplant stage and the nurse contact is amazing we have been given 3 designated nurses dealing with her case who we can contact at any time but i have been holding off or contacting them until the next appointment as they are currently looking at finding a match so holding off on asking the post transplant questions till we know its going to happen. We have found out my uncle is not a match which i dont think is a bad thing as he is over 60 so they are currently looking at the register. She has gone in today to boro for high dose methatrexete and asparaginse (second time on intensification stage)  and they have asking her today for further blood samples (EMV?? i think thats what they said) indicating they are looking at matches and testing further. Fingers crossed! thanks for replying and for your support xxxx

Ahh, you might mean CMV, that's a virus they have to check for, if she hasn't got it they will try hard to find a donor without it too. It's a virus we can carry without harm unless it increases during the transplant process as it can make the patient quite poorly. After discharge CMV patients tend to have a lot more regular blood testing for levels, and more frequently than if without, the Christie in Manchester do that CMV testing twice a week to begin with in case any treatment is needed. Keep your chin up, keep posting and hoping xxx

Yep just found out that was the blood test she had! So many names of things it all starts getting confusing :) Thank you and next time i post i hope its to tell you she has a donor :) xx take care xx

 

Yes I too hope you are able to say there is a 10/10 matched donor! Best wishes and another hug xxx