Late effects and problems

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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

  • So sorry to hear this , the post SCT journey can throw up so many very unexpected....... I was going to say ‘bumps’ but more unwanted mountains to have to climb.

    Warm ((hugs)) to all xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Reading all the comments and I feel how lucky I am to have found such positive people on the Macmillan site, I hope that everyone gets as well as they can, but don't forget try and find a laugh a day, its helped me so far. Mine today was while out for a short walk, bumped into a lamppost and this woman shouts out, drunk at this time, disgusting,it was about 11am. I had to hold onto the lamppost while I laughed, if only they knew.

  • Oh Custard, so very sorry to read this, what an absolute pain! Your poor hubs! And yes, people can be so insensitive! 

    Hugs to you both xxx

    Moomy

  • Daughter still has the tail end of the nasty ‘tight’ cough, but is feeling well enough to do the Monday to Friday tutoring she was booked for in Snape/Aldburgh, I suggested she still inhale steam when able as it will help that tightness. 

    I suspect by acting fast and her GP taking it so seriously, she has avoided pneumonia again. Hope she can take it a bit easy and benefit from the sea air too.

    hugs xxx

    Moomy

  • And she has had to pull out and go home again, last night her temp was back up to 37.8, she was struggling to keep her body even, legs were boiling but hands and feet so cold, so sleeping was really hard. And it’s sleep and rest she needs right now, but with a bit of steady gentle exercise. The cough is still bad, oddly her team at her local hospital phoned her today and asked how she was, said if her temp gets to 38 or over to go straight in. So going home after cancelling this work seems the right thing; health comes first even if you end up eating bread and cheese for a week as a result. (Job was £1.3k for 5 days, and of course she is freelance....) 

    the worries (all the way from 2004) continue.....

    hugs xxx

    Moomy

  • Ah moomy, I do hope that things settle down for her quickly and she can move on.

    ((hugs)) all round.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Today’s news; daughter was called into her local cottage hospital (how brilliant are they?!) who have given her a different antibiotic again I/V, and are asking Oxford what best to proceed with, I/G’s or whatever. They have sent her home after lots of obs, but concerned about her low blood pressure (she should be so lucky, it’s always been on the low side!) but with a cannula in place (her veins are shot, when they get a cannula in, its useful to keep it handy in case of the next need!) so she’s been at home sleeping and trying to rest, not necessarily together! 

    I suspect it may be a viral bug but as it got her so fast and so severely it does need sorting. Not least because next month she has a good chance at becoming a successful tv presenter in Moscow.....so possibly building a different aspect to her freelance career. 

    Hugs xxx

    Moomy

  • Thanks for the update and I do hope she is getting some rest........a presenter on Moscow TV!!!! how is her Russian? 

    Flushed

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thankfully it will be in English, Mike, it’s an internet tv channel. There is a Russian presenter too, (what worries her a bit is that they are already a presenter and producer, she is coming from the brass world with that knowledge!) and she will also have to cope with an ear piece instructions.....

    hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Moomy,

    I hope you daughter recovers well, but sad to think that she is at home with  cannula in, has she ever had the option of a port?

    Fingers X'd here for all of you.