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)
Oh moomy, sinusitis is the pits.
Post my RSV Virus and Pneumonia post new year I was left with bad sinusitis :( must have taken 3-4 weeks for it to clear........ my GP said 'keep taking the painkillers' as I felt that my head was exploding, the pain was right over the left side and back of my head. His other hi-tech recommendation was 'boil your head three times a day'. So basin, hot water, Olbas oil and a towel over the head. It took an age for it to start to break down the gunge and it was rather disgusting for a time when everything started clearing :( :( poor Lass.
On the hair thing, my brother has black hair with some little silver strands and I thought I would hit the jackpot post Allo as I was looking for my hair to come back in black........ then one of his daughters whispered 'we dye it for him' ;) ;) ;)
Afternoon all...
Hope everyone is starting to recover Moomy
My hair grew back about the same as prior to the SCT after the effects of the cyclosporin had worn off (had loads of hair whilst on it).. Then it was a bit thin for the next few years but in the last couple of months it has really started to thicken up.. so much so my wife and my hairdresser have mentioned it.. So even almost 5 years after the SCT things continue to improve..
or perhaps it is just that new shampoo from LIDL!!!
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Keeping fingers and toes crossed for her.
That is interesting about the Rituximab as during my R-EPOCH I was on it for well over 600hrs. I survived 3 winters before I needed I/gs back in January. All my counts are doing ok but I have already been told that they will check me over before the next winter session starts and look to give me a I/g boots.
((hugs))
Hi Moomy
I am being told exactly the same thing by the immunology team at the Royal London and I also had rituximab to treat EBV 4 months after my transplant. My lymphocyte count is OK but I just cant produce IG's in any significant number.. I have been back on Immunoglobulins since December.
I do them myself at home once a week ( I have 10gms a week of Hizentra) subcut. Takes an hour with a mechanical syringe driver to get 50mls into me. touch wood though, I haven't been ill at all even when friends and family that I am with have all come down with bugs. Whilst I don't enjoy injecting myself it doesn't hurt and I can double dose if I am going away for a holiday for a couple of weeks.
I have got to the point now where I do wonder if the IG counts will come good, but they tell me sometimes it can take years!
Hope your daughter feels better soon.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
