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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 All. I had my transplant at the end of December. I'm now 10 weeks post transplant, much improved physically but incredibly frustrated as I try to more but still fail. I also get very short of breath. Its the breathlessness that worries me the most. Do others get breathless as well?
Welcome to the forum, although I am sorry to read about your current problems. I am wondering if the breathlessness could be due to a low RBC count (ie, anaemia?). I know that I struggled for quite a while post SCT and no matter how much I pushed myself, I still had zero energy. Sometimes with these things, it just needs time to sort itself out. Have you had your bloods done recently and could it be a low RBC count?
All the best
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Hi RV8 and a second welcome.
As Greg says, this can take some time and 10 weeks in the big picture is actually a rather short time in the post SCT marathon.
After my second Allo SCT it took a long time to get back on my feet so give yourself a break and take each day at a time. My head SCT Consultant once told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training
We do have a thread where we have tried to collect our post SCT stories SCT - A Survivor's Guide
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.
Always around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks Mike, I will do that.
Thanks Greg, haemoglobin was 110 yesterday. Low but not that low.
Hi again John, I should have said that I was at my respiratory clinic this morning for my 6 months check up as I had lung problems following my second Allo SCT.
We were looking back at my past peak flow readings and today I was up at 510....... in early 2016 three months post my second Allo SCT my peak flow was 210!
It has taken over 3 years for my peak flow to slowly climb back up......... I do have some long term asbestosis issues but my peak flow is now better than it has ever been for years, but I have had to work at this.
and another welcome....
coming in a bit late to this; did you have an auto or an allo SCT?
After an auto you may find red cells low-ish but should pick up fairly quickly, then it’s ‘just’ recovery time you need, plus demanding a bit from your body regularly, so exercise regime which pushes lung function a bit.
however after an allo then red cell counts pick up at various rates, depending on many factors, close match of donor and length of pre-treatment being two of those factors. It really depends on how fully and when the whole bone marrow decides to kick in. And your red cell number is low enough in a man to cause problems with aerobic activity! (I was an Occupational Therapist before retiring so do have some medical knowledge) Daughter was reliant on red cell transfusions for over 2 years post allo and she did notice her drop in levels quite quickly to ask for a ‘top up’ (bear in mind her lung function is vital to her job, she’s a professional brass musician!)
once your new marrow fully kicks in, then a) you’ll notice a difference and b) it’s time to demand a bit more lung function from your build up exercises.
it was an auto transplant. The breathlessness is variable and odd. Sometimes I can walk and I'm ok. Othertimes just putting a coat on can make me breathless.
i just checked your profile (thanks for filling it in, it helps loads!) and it looks as if you’ve really been through the wars, so I’m not surprised you find trouble, variable or not!
an auto SCT is similar to a major operation so the tiredness and breathlessness will still give you trouble for a while, it might help you to keep a journal or diary, and check back in a month or two, when the recovery will be more noticeable I’m sure.
Your cardiac status may also have a bearing on how well you’re functioning.....
Be patient with yourself but try very gradually increasing the aerobic activity week by week.
another little tip is yoga breathing, i have found it helps immensely ,, though my breathing is definitely not what it was, but as i mentioned before, i have put on 35lb,so that isn’t helping .. grr
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