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

  • FormerMember
    FormerMember in reply to moomy

    Hello Moomy, just as an aside what car does she drive as they can have a negative input with the pollution. I am investigating an electric car as we don't drive huge mileages now

    Anyway fingers crossed here for a quick recovery.

  • Hi Peter,

    in answer, a VW campervan.....it’s her ‘home on wheels’ and was very well converted by a legitimate conversion company. 

    And she’s in St Petersburg at present, presenting for Medici tv for the brass rounds (the first year brass has been included) for the Tchaikovsky competition. It’s the classical music equivalent of the Olympics. (Proud Mum here!) and is really doing very well even though the hours are long and challenging. She’s had a long morning off to sleep today but sound checks and scripts this afternoon for tomorrow (in the Mariinsky Theatre, the new venue for the finals) and has another couple of days still to do. Thank goodness for resting when she can, she’s an expert at power naps! 

    Hugs xxx

    Moomy

  • So in the middle of having all my bloods ready for my Late Stem Cell Transplant Effects Appointment (Video Conference) 4 years 4 months and 18 days post my second Allo SCT.

    Got a letter from GP informing me that I have Impaired Glucose Tolerance or in other words Pre-diabetes!!....... Follow up blood test and review in a year.

    Causes:

    Being overweight or obese - Very slightly overweight.

    Not eating a health or unbalanced diet - Not this one.

    Doing little physical activity - Not bad - but it is winter.

    Having a family history of diabetes - No

    High blood pressure - No

    High cholesterol - No

    You developed diabetes during pregnancy.................Joy

    The gift that keeps on giving.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Dear Highlander, yup me too after 5 years. Gave up white bread and potatoes for three months lost 5kg and blood sugar is back to normal. Put on 3 kg since then but blood sugar is now normal. It probably happens to normal people too but we have blood taken more often so its going to show up variances. Good luck.

    jackie

  • Hi Jackie ,

    I see that you are in the same age range as me so and yes, I have been told that it could well be due to my 64 years.

    Going to have a look at what we can cut to see if it can help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike

    I got pulled on cholesterol a year back but consultant made me retest as I had eaten a steak sandwich not long before bloods done which can affect the result.. Better second time but apparently we don't sit in the normal range.. ours in lower due to increased risk of heart disease post transplant from the chemo!  Perhaps it was just a one off reading that was high so I would request another..

    I did have a stint as a type 1 diabetic when i was on steroids for GVHD but gave that gift back once the steroids stopped. Real nuisance trying to match the diet to the insulin as it was a pen with a fixed dose. Became worse when I was coming off the steroids and measured my blood before driving and finding I was too low and then having to eat a couple of chocolate chocolate biscuits!!

    I had my first late effect clinic a couple of years ago. First year I got a DEXA bone density scan and this year I got  an ECHO heart scan.. awaiting results but lady let me leave the hospital after so couldn't have been all bad!

    Currently becoming an obsessive hand washer and making sure the immunoglobulins are in right on time to keep the immune system topped up.. 

    As you say the gift that keeps on giving but I would have signed on the dotted line for the inconvenience of my current health and meds at the beginning of the treatment if it was offered as an option so I wont grumble about it.

    Keep smiling

    Paul

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  • Good to hear from you Paul and yes not complaining as I am still around doing well.

    But as you say - keeping good hygiene is always part of the SCT life but I think we will all be talking extra care.

    All my other counts are good so it’s all about keeping away from bugs and being lucky Blush

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Highlander, yes worth a look at diet first, we don't have bread or potatoes at all during the week other than fish and chips. Nothing to do with age Stuck out tongue winking eye

  • Hi Paul,

    handwashing? Oh yes! (Mind you we have daughters dog at present so doing so more than ever!) 

    Daughter is away on the banks of the Red Sea in a quiet but beautiful resort, busy drying up her sinuses and benefitting from some sun! And hand washing lots too, she kept a scarf over face while flying.....she had IGs before going and is booked for more on return. 

    We just hope for the best and wash our hands!

    Hugs xxx

    Moomy