Had Allo SCT 8 months ago. A few initial setbacks but current gripe is fatigue. I know this is normal and to be expected but at times I don’t feel too bad and then can just feel so exhausted, which is at best demoralising and at worst, worrying, ie is something else going on? Any feedback appreciated.
Hi again , I think I am safe to say that your situation is very familiar to many on this forum.
8 months post SCT is actually not very long as in reality you have been through what is seen as being as demanding as major surgery.
My Head Consultant told me on the day I was let out of the SCT Unit "....... 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 - so the recovery time will be long so don't be impatient and take your time"
She also gave me a basic scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
I had two Allo SCTs with cells from my brother. My first I recovered well but it did not work. Post my second SCT recovery has been very long, I would safely say that it took me 2 good years to get up to 90%
We have a thread Life after a SCT - A Survivor's Guide where we have collected some thoughts about folks recover post SCT.
Your question "Is something else going on?" as long as you being monitored by your team and they are happy with progress I would say this is just the recovery process going to plan.
