Life after a SCT - A Survivor's Guide

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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)

  • Elena was one of those special people who left a lasting memory, she posted a lot on the LA site and her humour and spirit really shone through and we chatted a lot over there with one or too others from HL group. More laughter than worry which was good in those days.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • At last! A few days after her 7th celebration of remission (after over 7 years of treatment!) daughter has immunoglobulins agreed! 

    What took them so long?????? If she had still been living up north it would have been no problem and many of last winter’s infections might not have happened! 

    Hope next winter won’t be as bad....

    hugs xxx

    Moomy

  • Great news moomy but let's hope that none of us needs them and we can get through a winter free from infections Slight smile

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike,

    i think they will start this up as daughter has.what they called ‘a very, very low immune system’ and hopefully it will prevent the sort of constant misery she had last winter with continual need for antibiotics, particularly ear infections (not nice for a professional musician!) and as we all know, there may come a time when they might not work well enough.

    i really hope they also come up with a decision as to her need for booster jabs, it seems the standard ones post allo might not have been enough to develop her immunity even to those illnesses! 

    Hugs xxx

    Moomy

  • With you all the way moomy xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Success! 

    At last daughter has heard that Oxford have approved immunoglobulins for her! She’s on holiday at present so I haven’t asked about the plan but hope they will allow her to take the lead on this and decide how, when, and what type, whether infusions (and the needed pre-med) or self injecting. After all, she knows her body! 

    Hugs xxx

    Moomy

  • Worth a double high 5 moomy Slight smile

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Hello all

    Just had outpatients at nearly 14 months post allo SCT. My neutrophils are normal, but my CD4 count still indicates I have only two-thirds of normal immunity. It hasn't changed much in the last 6 months. I'm told that people over 60 sometimes never recover full immunity.

    So they are going to relax some of the regime. In a month they will restart vaccinations. I am now allowed to eat salad and fruit but still have to boil my drinking water and avoid buffets, soft cheese (unless cooked) and shell fish. I am also allowed to do gardening as long as I avoid getting scratched. Also allowed alcohol, though I rarely drink it anyway.

    Also allowed to start going to meetings 'gradually' whatever that means. But like Mike said on another thread, I don't really miss some of the things I used to have in my diary. Needs a reappraisal.

    I went out and had a ham salad sandwich and strawberries to celebrate. Though I am going to be 'gradual' with the fruit until my digestion is used to it again. 

    Tessa :-)

  • Oh that must really feel a relief, Tessa, congratulations!!!

    hugs xxx

    Moomy

  • This has been a long slog for you Tessa but I do like your style with the ham salad sandwich and strawberries....... I do hope they tasted good Slight smile

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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