Post SCT update: I'm now +58 days and 3 weeks out... - MPN Voice

MPN Voice

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Post SCT update

Flyingsteamer profile image
20 Replies

I'm now +58 days and 3 weeks out of hospital. So far (touch wood, fingers crossed) I'm not showing any signs of GVHD or other abnormal symptoms but I know this can all still happen as my recovery progresses. Consultant has reduced the Mycophenolate (in place of Cyclosporin which didn't agree with me) from 750 to 500mg twice daily and stopped the Ondansetron, Colecalciferol and Furosimide so in my eyes that is progress. I should get first BMB at 3 months so that will be next month and will give a good idea of how things are really going. As expected still weak and get fatigued but managing 1 1/2 mile brisk walk every day and started some upper body exercise to build up some muscle mass. I need to focus on eating more healthily (just love the puddings and cakes too much) as I'm putting on about 1 kg each week which in some ways is a good thing but I know my current weight is too high. All the best to everyone.

Chris

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Flyingsteamer
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20 Replies
hunter5582 profile image
hunter5582

Congratulations! That is very good news.

Regarding diet, healthy eating can be very tasty. Many fruits makes a delicious dessert. Using Stevia as a sweetener can help satisfy the sweet tooth without triggering an insulin reaction the way that artificial sweeteners do. Since you like puddings, a healthier alternative is nonfat plain yoghurt + vanilla + Stevia sweetener + berries of your choice. This is one of my go-to sweet treats. It even helps your GI microbiome.

Wishing you all the best.

Solyesh profile image
Solyesh

Congrats - great progress. I second Hunter's suggestion on the yoghurt + berries (although I prefer Greek yoghurt)....

Spanelmad profile image
Spanelmad

Glad to hear everything is going the right way! Agree with Solyesh Greek yoghurt and berries,plenty of leafy greens.I've just gone all organic. And agree with Hunter eating healthy can be very tasty

Minify profile image
Minify

Wonderful report! And great attitude!

Hatchie profile image
Hatchie

Hi Chris thats great news.

I'm getting closer to the point where I need to seriously consider transplant. My biggest hesitation is the lack of a fully match donor. After searching both the Australian and international registry the best match is a 9/10. Statistical the doctors think the chances of finding a better match are pretty low.

Did you have a fully matched donor?

Flyingsteamer profile image
Flyingsteamer in reply toHatchie

Hi Hatchie, yes I was lucky my non identical twin brother was a 10/10 match. However prior to him being tested my consultant said they had found some 9/10 matches which they would be happy to accept.

Hatchie profile image
Hatchie in reply toFlyingsteamer

That's great news! I hope your recovery continues to go smoothly.

Simon96 profile image
Simon96

Wonderful news! Congratulations!

ETinNYC profile image
ETinNYC

Wonderful to hear you're doing so well. Keep us all posted and I hope your journey continues to go smoothly! Sending hugs from NYC.

LFCLove profile image
LFCLove

Excellent news! Long may it continue.🤓

Carol0925 profile image
Carol0925

Congratulations 🙌 Wonderful news and wishing you all the very best.

Maurabawn profile image
Maurabawn

Great news and a big thankyou for sharing!

DiveGoddess profile image
DiveGoddess

Flying Steamer,

Glad to hear of your progress. Sounds like you are headed in the right direction. Fingers crossed 🤞🏼 Thanks for sharing update. Best of Luck, Christy

azaelea profile image
azaelea

Great news. Best wishes for your journey!

KC63 profile image
KC63

Good news! Wishing you all the very best

MFBMT2011 profile image
MFBMT2011

good to hear. Keep it up. Chris

CanadaG profile image
CanadaG

amazing news Chris! Great to hear your recovery is going well. Thank you for sharing

Poppy6060 profile image
Poppy6060

Great to hear your good news xx

tracey13 profile image
tracey13

Great news well done you for getting out and walking .

Good luck to you with your recovery fingers crossed you don't have any issues

Tracey

Bullace profile image
Bullace

All the best to you and a continuing recovery. Thank you for sharing your experience. It is so interesting and helpful for the rest of us! Hilary

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