Let's see if we can collect some helpful information and real life experience that we can signpost folks to after they have come home from their Stem Cell Transplant.
A couple of useful things I found were:
My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.
Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality - it took me a good 2 years and I was 60 at the start of my recuperation.
Yes some folks bounce back quickly post treatment but more than often folks take a considerable amount of time to recover. 6 months is the average recovery time…… at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…. I was not able to feed myself due to my bad Peripheral Neuropathy and even then I was not eating much……. Your body has been through far more then you imagine so be kind to yourself, give yourself a break as you are doing good and honestly this will pass.
There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years
My consultant gave me this basic percentage 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 prepare 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.
She also said on average recovery time-line is about 6 months with your recovery improving about 10-15% per month post SCT
This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..
For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity…… so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..
A web page by the Anthony Nolan Trust - The First year post SCT (link)
A web document by Dr Peter Harvey - Life after Treatment (link)
Tessa, this is frustrating.
I have to say that my GP surgery was great with my vaccination.
My vaccination schedule was sent direct to my GP, at my first appointment following it coming out to them we talked everything through. I just had to arrange all the dates to see the surgery nurse and the shots were waiting for me every time - no hassles.
Yes, no measles and mumps and with four granddaughters this could be fun. My daughters also paid for all the girls to have the Chicken pocks vaccine done to try and protect me from shingles as I have never had CP but still have a stock of Aciclovir just in case :)
Hi Tessa
I think there is a bit of a shortage but I would imagine they will sort yours out as the shortage isn't supposed to affect normal immunisations which is what you are actually getting. Once the GP gets their head around the fact you are just getting all your childhood jabs again it tends to go smoothly.
Likewise I still haven't had MMR as it is a live vaccine but I have been told maybe next year if my immune system decides to wake up in the spring when I am due yet again to try and come off immunoglobulins and see if my counts hold up after a few months. In the meantime I will continue to top myself up at home every couple of weeks which so far has kept me free of any bugs and colds etc for the last 3 years.. Have managed to keep well now that I am off penicillin as well. (touching a lot of wood as I type!
Flu jab was fine a couple of weeks ago and just had a slightly sore arm for a day or so.
Paul
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