Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days at home my liver function deranged significantly again so I was readmitted to Westmead Public Hospital. Today is day 22 of my stay back at hospital
I am being treated for Graft Versus Host Disease to my liver and small intestines time will tell if its an acute attack or chronic. The good news is that at my last bone marrow biopsy all my marrow cells were donar cells whilst previous biopsies showed that despite the myeloblative chemo my old marrow represented about a quarter of the cells. That situation is called mixed chimerism. So keeping positive, over the last 2 months a war is happening in my marrow and its no surprise the liver and gut have been hit by some friendly fire ie Graft v Host Disease. Only time will tell the longer term effects but one thing is for sure in this process its important to focus on the now because tomorrow could have a whole number of differrent outcomes and variables which wastes time and energy if you take the time to dwell.
Myelofibrosis patients have one of the slowest recoveries from stem cell transplants as the new marrow has to grow through the scar tissue in the marrow space and some of the Luekeamia patients who had their transplants at the same time as me are recovering very well which is really encouraging.
Interstingly I am back on the Ruxolitinib as it has been found to reduce the inflammation generated by Graft v Host Disease. They have been increasing the dose slowly as they wean of the steroids. Hopefully by Wednesday I will be off Intravenous drugs and on oral drugs with good liver function which will be my ticket home.
My hospital ward has gone into lockdown complete visitor ban which is tough but thank The Lord for modern communications. Ive been streaming Euros Copa America F1 travelling the world on the internet and face timing family and friends. We live in good times.
Thanks for your interest
Best wishes Warwick
(posted by Steve)
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Hi there Warwick All the very best mate take it easy one day at a time sounds like a good plan !Good luck and hope you get to head home really soon and all goes well my fellow MPNer friend 😊
Thank you for sharing this, it's so helpful to hear about Warwick"s SCT journey. Could you pass on the best wishes and thanks of a fellow Myelofibrosis patient. Thanks, Jennie
Hi Warwick, thank you for posting an update on your sct. I will be thinking the most positive thoughts on your recovery. I hope you get to go home soon too but maybe it is no bad thing to be somewhere that will give u a level of protection against covid right now. So good to hear too and the donor cells in your bone marrow are taking over. Brilliant. Take Care B X
But I am just the messenger on behalf of Warwick... However, he did write the Update for all & sundry so that others everywhere could share in this part of his MF & ASCT journey...
Thanks for replying on behalf of Warwick. I did realise that you are the messenger. Just thought you might pass on the good wishes from all of us. Thanks. Maggie
Great to hear an update from you Warwick! Your body really is fighting a good fight and I’m sending the most positive thoughts for a strong recovery. It sounds like you’re being kept safe as houses in the best place with a great game plan, no doubt you’ll be out the other side telling your war stories from home soon! In the meantime enjoy the racing and do stay in touch. We’re all rooting for you 💚
I’m staying far away from the TV as we’re having an incredibly rare day of sunshine here in what’s usually a very rainy Dublin 😎 Will check the highlights this evening for any sign-holding-idiot related drama 😂
Excellent that you are able to enjoy the sunshine. We haven't had too much of that here in Sydney either of late... Hoping to be out for a ride tomorrow myself...
Yes, that was a really nasty fall created by someone looking to Post on Social Media... There are some really Crazy people out there...
Thanks for the update Warwick. Keep positive and take one day at a time, as you say. It is certainly a challenging journey and I guess you learn something new each day about it. All the best.
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SCT journey update No.4
