I thought it might be an idea to start a new thread for the late effects and any problems folk get post auto and allo, particularly those which appear a year or so down the line.
After an allo then infections are common, particularly within the first year, the average for readmissions for this is three.
But after that some folk continue to get problems. Daughter has had immunoglobulin on and off to try to prevent infection. She went a complete year without and had an awful lot of problems, lots of antibiotics; they measured her immune levels at less than 1. Average ‘low’ is 6. So this last winter they tried hard to build it up, having I/G’s around 2-3 week intervals. She had her allo in September 2011.
today she has suddenly begun a nasty, painful, productive cough and raised temp. Fortunately she has an excellent GP who sees her fast and is interested in her history. Hope it gets sorted!
hugs xxx
Hi all
i am also suffering from a chest infection. I will be 6 years post transplant on Friday. It has been hanging around now for 4 weeks.
I have tried a course of penicillin I had at home and I have been loading up on immunoglobulins (yes still 6 years out!). Everyday I hope I will feel better but getting to the point that I may have try the GP! May need a little bit of help
Drives me mad as I just normally just Carry On! Frustrating as while I feel bad it isn’t bad like I have known it to be!
Just because you get years out. doesn’t mean you stop getting ill. But hey.. perhaps I am just normal I’ll? Everyone gets a bad cold now and then right???
Paul
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Hi Paul, it is frustrating when these things come along and is it is it not something to get concerned about.
We are over staying at my 90 year old mum’s in the very cold N/E of Scotland (wife’s mum died at the weekend so down longer than normal doing all the arrangements) and my mum insists on having her gas fire on ALL the time and I feel that my head is totally chocked up, I also have an emergency box of antibiotics but I keep holding back as once I get fresh air my head clears a lot.
Hi Paul,
yes I know, it’s an odd situation; how do you know if you’re not just ‘normal ill’? I think you just do know.
And certainly daughter does ‘just know’ when she’s really unwell and running a temp. regularly.
Hugs xxx
Moomy
I used to get far more frequent colds and sore throats before AML/SCT than I do now. Maybe it's because I am on preventative drugs, but I'm more careful of keeping hands clean. I'll anti-bac them (gel or wipe) after touching hand rails, cash machines, petrol pumps - anything lots of other people have touched. And again before I eat. I also avoid being in the middle of crowds, but I have always had a bit of a phobia about that. Now I have a legitimate excuse instead of an irrational fear.
Oddly I feel I may be harbouring a throat bug at the moment - but I've kept up the fluid intake, gargled with salt water, and so far it hasn't raised my temperature. I've been out today as I had plans I didn't want to cancel, but will take it easy the next couple of days.
Hope everyone feels better soon
Tessa
Oddly, since the Bombe machine moved to the other side of the Park (to TMNOC rather than the BPT) I’ve had loads less colds! Plus I decided with the breast cancer that I would add a multivitamin mineral capsule to my daily meds. So maybe it’s simply crowds? We were doing demos to crowds of 100 a lot of times a day.....(and folk think nothing of coughing and sneezing in your face these days, where have manners gone?)
daughter has found her immunoglobulins have helped this last winter, it will be interesting to see what her levels are at present, and whether they drop a lot during the summer.
Hugs xxx
Moomy
PHEW!
Thank you so much to daughter’s new team in Henley on Thames! They have really sorted her out and she’s back practising, which means her lungs and breathing are fine! Last treatment was this morning, and she has the cannula out now too.
She felt so much better yesterday she baked them a cake! Bless.
Hugs xxx
Moomy
I suspect if left it would rapidly have become pneumonia with her, so in just over a week it’s been sorted and she feels on top (almost!) of the world again, at least properly well. CRP has come well down too, her team are pleased at that. I remember one time we drove her north with a nasty flu type cold her CRP was over 150 and they refused to let her go anywhere, (that was indeed pneumonia) but found a bed for her. This time it was almost 50 and climbing rapidly, so now that it’s well down but not in single figures yet, (19, but much better than almost 50) all seems well.
Hugs xxx
Moomy
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