Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi Paul, YES, that was she! Only had a few notes in the Beethoven......unusual for them to be positioned in front of the soloists.....
heard back from her consultant, he feels it may be a number of things and will start up tests when she is next in.... Bless him!
ps, he is ok with the immodium 4x weekly as it is roughly now, she said it still is pretty bad (though slightly improving bit by bit) even on the change of diet, hope testing can rule out stuff like chronic infections and will also show up probable solutions, think it's quite a large battery of tests just on samples! (Sorry, again tmi!)
Latest update, things are gradually improving, she said yesterday when I dropped her at Heathrow (yes, she's now in Banff, Canada) that the (tmi!) poos are improving steadily but she wishes she could juice still, but understands that juicing breaks down fibre and therefore speeds up digestion.
But generally, she really is doing well after all the worrying times we've all had! She's quite glad they are going to do tests soon though, she wants to really know what's going on and how to help.
On return from Canada, she said all was well.......didn't need Imodium once!
I wonder if her gut is just very sensitive? I hope they will test her out, it would be good to know if there are any malabsorption issues, but think any invasive testing is not indicated now.
hugs to you all xxx
Thats good to hear… a lot of people seem to report sensitivity to foods in the years after transplant so maybe its all part of her body adjusting… also you wonder the food intolerance's her donor may have had and maybe that could affect things?!?!? not sure just an idea!! Glad to hear she is flying high and doing so well xxxx
I too have often wondered about her donor and any food problems he might have! I just hope things will settle and she will be able to very gradually introduce a few more fruits and veggies! (Especially as I've promised her a blackberry and apple crumble when she comes to stay for a few days! We've a thornless blackberry that is doing really well this year!) ......hugs xxx
I wonder if they have ever done research on this but that would be interesting to know … i am sure as things advance they may look into this with research into GVHD? yes maybe worth just slowly doing it… i once did food allergy blood test as i have always had stomach problems and am very sensitive with dairy .. they sent me the result telling me i had intollerences but to find out what i think it cost about £300 and at the time i was a poor student and not willing to part with that money! haha think it was called the york test….
oooo that sounds yum … well i am sure if anything organic is the way to go! so hopefully she manages to enjoy xxxx
I suspect that folk here are doing the ground work for long term survivorship from an allo, to be honest!
Food sensitivity is a tricky subject and is a longish term study. Daughter has been seen by a nutritionist a good few years back, and that was when she decided to substantially lower the large amount of dairy she had in her diet at the time. It has meant that she did eat and drink really healthily too, so much so that it will be interesting to be able to track her recovery, in the gradual introduction of foods she has reduced, i.e. fruit and veg! Again, I think juicing, though it is good and she really enjoys a healthy juice, may well be the last thing she should re-introduce.
Still 'up and down' a bit, she has little energy at present, but that might be partly due to the hard week straight after jet lag from her return from Canada! And a cough plus a bit of a cold isn't helping......
The girl needs some R&R! Has a few days, but has stuff to do even then.......and then another Prom concert with BBC Chamber orchestra this time.
Hugs to all xxx
Again, still very variable......told her to make sure she pops in to do a sample, we joked about sample pots, but think it's a little easier than a wee sample pot for us ladies......
she will at last, I think, get some R&R, has nothing much in her diary for the rest of this month, so drove back home late last night ( irate tweets to highway authority about motorway closures!) and I think she plans a bit of camping with a pal........
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