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.
My consultant also gave me this 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.
She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT
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)
It was only time before this happened moomy. Up North we are still required to wear masks in most places but the talk is that most restrictions will be lifted by the end of this months but I will still ware my mask for a good period of time yet.
The big problem out there for us who are post SCT is in the reduction in children having the MMR vaccine so measles are coming back with a vengeance
Bumping the thread for those on the post SCT journey.
Hope she is feeling OK Moomy.
I tested positive on Saturday, had no symptoms so imagine I got it week before when I was abroad or on flight home last Sunday. NHS called me as I was on their at risk list, and said as no symptoms no treatment needed. They did say if I got symptoms to call them back and they would then revaluate. Tested negative on Monday and thankfully all fine.
So for me it appears that the jabs did the trick.
Paul
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Hi moomy and Paul1969 sorry to hear this.
I tested covid positive on the 15th March 22 and within 24hrs of testing positive I was having a LONG conference call with my Consultant and an Infectious Diseases Consultant and the consensus if the discussions was that I would not have the antivirals as the symptoms I was presenting with would be like taking a sledgehammer to a nut…… and there is a ‘gray area’ as to what side effects the antivirals ‘could’ kick off with some rare conditions - best leave sleeping-dogs sleep. We agreed that how I am feeling is a very good sign that the vaccine program and me being so far out from treatment means my immune system is doing its job.
If things changed significantly over the next few days I could have called and got the antivirals but I honestly have had worse colds.
Happy 3rd birthday Mark. The SCT journey does tend to effect how we move forward with life but the important thing we all have to do is take control as best as we can (within the limitations of late effects) and define how we live life rather than life being totally defined by our SCT experiences.
I am always surprised that someone would choose Bone Marrow donation over Stem Cell but the main thing he or she did it and you are alive because of their sacrifice.
