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)
Good to hear she is on the up again..
I had a "post transplant late effects clinic" today at Barts which they have recently introduced in conjunction with Antony Nolan. Probably a bit late for me but it is for patients from 6 months post transplant.. they will find it very useful.
Whenever I get into the inner courtyard of Barts with the fountain I always have an incredible calm come over me and I feel totally secure and safe. I had to go into one of the old buildings.. up the ramp and through the double doors.. the same doors that the ambulance crew wanted to push me in a wheelchair on the 5th of September 2012.. I told them "I will walk in and I will walk out when I am cured".. I haven't been in that building for many years as they opened the "new" wards whilst I was there. Today I walked out of those doors and I fulfilled my promise to myself..
Paul
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Hi moomy no swelling but lots of times when my hands go stiff like all my muscles have contracted so lots of stretching........ but cod liver oil???
Its so frustrating as my hand can get clamped round the neck of my guitar and I have to peel it off.
((hugs))
Ah bless her It can be rather sore at times, like holding a pen..... or the slid of a Trumbone :(
Yes bloods are great but as you say I have been working through PN for a few years now and the more active I get the more it is fighting back at me but i will win. But I think I will get some Cod Liver Oil Caps...... I have increased my oily fish like herring and sardines.
Hi it can be such a hard journey and I do totally understand ALL the issues you both have been facing...... it just can take time and it is a battle of attrition....... and its a massive battle between the ears.
We are in Inverness and my SCT unit was in The Beatson in Glasgow so an 8 - 10 hrs round trip every time for all the treatments, clinics.... I think we did the journey 30 times over my two Allos.
Infection is the bad boy in the camp. I am now up to 4 stays in our local hospital (over the past wo winters) for a total of about 25 days with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis and two months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin. I was left with Peripheral Neuropathy in my hands and muscle pain in my neck and legs but am working on these and finding continual improvement ....... but the memories of this is becoming very fuzzy at the edges and if I was not helping on the forum I think some of the memories would have gone by now.
I am now 20 months in remission and in September last year I eventually got my Whole Blood Lymphoid and Myeloid Lineages to 100% Donor for the first time :)
I was the same with our 4 Granddaughters but they were very good at being Doc Mcstuffing and fussing around me but my two daughter and my wife were running after them with anti-mac wipes...... it became obsessive ;)
The food thing is hard but little and often with high protein foods. I lived on home made soups, rice, custards, scrambled eggs and cheesy mash for 3 - 4 months then one day I woke up and asked for a bacon roll ;)
Highlander ((hugs))
