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How long does it take for anyone going through the SCT to be able to climb stairs (6 floors)?
My daughter, who is 25 years old, is currently having a SCT at Mont Sinai in NYC, USA. She lives with her dad on the 6th floor and there is no lift. I live in the UK and I am planning to rent a property near the hospital with a lift or on the first floor. I will be there to look after her for at least two months. Would two months be enough for her to recover and be able to climb stairs by the 3rd month? I understand that each person is unique and require his/her own time to get better...having said that would my daughter be able to be more independent by the third month? Please advise. Thank you.
Answers
Thank you for making contact through the Forum. I hope you are well!
My name is Nichola and I am 6 years post SCT and underwent this at the age of 24. I am now one of the Online Community Champions to this forum, in hope that my experiences can help others... like your daughter.
I am so sorry to hear your daughter and family are having to go through this - and it must be exceptionally difficult living away from her at a time like this. But GREAT news you're planning on living with her for the first 2 months of recovery and her 'new life' as I like to call mine
As you have already mentioned (and is important to always remember), everyone's treatment and recovery really is unique to each person, and therefore I can only speak from my own experiences and I must be honest and say the first 2-3 months were the most challenging, with both physical and mental challenges (facing the world again was more daunting that I anticipated) BUT with the help and support of friends and family, it became a walk in the park... literally!
At the time of my SCT time I lived with my parents with just 1 set of stairs, which I'll be honest, I found a real struggle the first few weeks. But for me, exercising little and often and talking walks around my local park was key! After just one month using my parents stairs, my breathlessness improved dramatically, with just a few weeks.
I always took my time and was slower than others... but after 5-6 months, I felt like I was almost back to 'normal' and was even walking around a super busy shopping centre doing Christmas shopping! I know this isn't 6 flights of stairs after 3 months, but in comparison, I feel If I was in that position and with my regular light exercising and PMA, I feel this is something I could have achieved
It is however key your daughter knows that it isn't a race and she must not put pressure on herself and take her time and listen to her body every step of her way to recovery... but having an aim/target really helped with my personal recovery, so if your daughters recovery seems to be on track post transplant and is infection and GVHD free etc, then maybe she could focus on an extra flight of stairs each week perhaps, after the first 2 months of resting? As I must also stress, REST is also key to getting her fitness back!!
I wish your daughter all the very best in her treatment and if she or you have any other questions at all, please just let us know and we'll do our best to help.
Best wishes
Nichola x
I think that would be lovely for your 11year old daughter to go along with you. Obviously, the main thing us post transplant'ers have to 'worry' about, especially over the first few months after a SCT, is germs!! So as long as you all take extra care in that respect (which I'm sure you will) then i'm sure all will be fine
As much as the company is important and a big part of the healing process (mentally and physically), I will be honest and say that there will be days when your daughter will want to hide away and 'hibernate' as i'm sure you may already be aware that fatigue is a huge side effect to the treatment, so if this is something your 11 year old will be able to understand and won't expect to her older sister to be active all the time, then I think her company would be extremely valued
Again, speaking from experience, when my younger brother visited me, I think he initially found it quite difficult to see - as no one likes to see their loved ones looking and feeling poorly... but after a few times of just laying together and watching films etc, I think he got the gist that this new 'lazy' me was just going to have to do for a while
All families are of course different, and I can only speak from experience, but as long as both daughters understand each others needs and perhaps the 11 year old can be occupied elsewhere on days when your other daughter may have those 'down' days, then i'm sure the 'good' days will always make up for them, as they always did for me
Best wishes x
My name is Rachel, I'm 2 years post my second SCT and I was 39 when I had both my transplants. You hit the nail on the head when you said everyone is individual in their response to the treatment. My recovery differs from Nicholas.
With both transplants, I was home and looking after myself 100% 1 month post transplant. I only had one flight of stairs and I will admit I wasn't running up and down them, however I was able to manage them and walk a good half hour most days.
What I recall was the overwhelming fatigue post transplant. I'd wake up around 7a.m. but by 10 a.m. I'd be on the sofa taking a cat nap. Whilst exercise is good for recovery, over doing it will result in fatigue which is a normal side effect (as it is) of a transplant. Therefore even if you daughter is able to get around easily, I would encourage you to ensure she paces herself.
As Nichola remarked, it can be very upsetting to see how fragile and weak a person becomes post transplant. Whilst very upsetting, personally I still marvel at how quickly most patients recover and in 2/3 months you should see a significant improvement in her energy, strength etc.
I wish your daughter all the best with her transplant and hope you have some enjoyable times together to help both of you through this challenging time.
Rachel
I am the nurse specialist in the team, thank you for posting. I think the responses cover this very well. I would say that everyone is different and it would be hard to say if your daughter would mange the stairs at 2 months post transplant. Fatigue is a very common side affect after transplant and it can come and go, some days will be better than others. Managing fatigue is about a balancing exercise with rest and by exercise i mean a small amount initially, maybe a 5 minute walk in the morning and evening. She can gradually build upon this at a rate that she can manage. Its important to rest in between but to incorporate some exercise in to her day from the very beginning is essential, sitting in a chair or bed for long periods will increase the levels of fatigue. We have a good booklet on fatigue which you can download or order here https://www.anthonynolan.org/sites/default/files/Managing_Fatigue_After_A_Transplant_Anthony_Nolan.pdf
It is also worth mentioning that in US you will have to ask for the consultant to refer her for physical therapy, its not something that will automatically happen like in the UK.
Wishing her the best of luck and please use the forum to keep in touch.
BW
Hayley