Paul Lockyer
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Early days post Bone Marrow Transplant

Paul Lockyer
Posted by
21 Dec 2015

Its a week or so after my bone marrow transplant & my body feels completely wiped out l am still sleeping most of the time. The eating/food remains a problem something l need to sort out quickly if l want things to improve.
The next step is getting out of bed & moving around.

I was spending most of time asleep only waking when the nurses came in, eventually l came to enough to drop myself out of bed, this was a massive effort at times & my legs would only support me for short periods. The physio visited & gave me a list of very simple exercises to help me back on my feet. I persisted with these & managed to walk around the room to begin with & progressed to up & down the corridor.

Sunday 16th March 2014 Frances & Sammie visited, it was Marsden March Day (the annual fund raising walk) & it was decided l should venture OUTSIDE!. A mask was donned & we proceeded in a wheelchair to watch people crossing the finish line. After this l contracted Para-flu & was confined to barracks for several days with nebulizer treatment, it was hell four hours a go & no contact with the outside world three times a day. 

It was about now that l had my first taste of Graft v Host Disease, my skin turned a little red & l brought this to the doctors attention during his morning visit. He was with me a couple minutes & he left the room, Frances had to call him back because in those few seconds my arms, back & legs had turned purple ! More tablets... some GvHD is not a bad thing it shows that the transplant has taken, the new cells are fighting with your body.

By the end of the month the nurses were telling me that l should be getting back on my feet again, the physio would visit & con me out of bed to exercise my legs (very important to do this as early as possible), the burning sensation in what was left of my leg muscles was excruciating to say the least. It took a while to get back to up & down the corridor, something l had to do before l could be considered well enough to get my discharge papers.

One more thing on my schedule was a D+28 bone marrow biopsy to see how well the transplant had taken, results were good & l was showing 99% donor cells already this was fantastic news.

The day the doctor actually broke the news l was going home l was so overcome with joy/relief that cried my eyes out ! The time in solitary had taken its toll, I pulled myself together to listen as the nurse instructed me on the medication l was taking home & dietary do's & don'ts, then she said if you have pet ie dog that l should limit the contact & it shouldn't sleep on the bed ! ......SEE BELOW



Top blog Paul which brings back a lot of personal memories.

The recovery process as you know only too well is a long and difficult one and not something that I think that I was as prepared for mentally as I thought I'd be. that was 11 years ago and I know that information and support has moved on a lot since then and I would have really benefited from resources like Anthony Nolan's 7 Steps to Recovery post transplant which is well worth a read:

I can't remember much at all about the dietary do's and don'ts or anything like that but I do remember being released to go home. That was a glorious day that I'll never forget.

Thanks so much for these updates. They really are incredibly useful for others who are currently going through treatment and provide real hope and inspiration.

Sounds like your muscle wastage was bad, too. I was more a skeleton when I came out than anything else but I treated it as a challenge like being a blank canvas to start again.

I hope you're now well and had a fantastic Christmas.



hi Andy l follow Anthony Nolan on FB & have used their resources, l also have a US web site they have similar, a good one is "living with the after effects of bm/stem cell transplant" I was lucky enough to get a free download sadly now you have to pay for it, its over 100 pages l even provided the Doctor at the Marsden with a copy & almost got a "gold star". Paul



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