One year stem cell transplant anniversary - MPN Voice

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One year stem cell transplant anniversary

Scaredy_cat profile image
33 Replies

This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover and at 97 are their highest for several years. Neutrophils OK at 2.6, rbc 4.0, haem 134 but white cells and Lymphocytes rather low. I had my spleen radio zapped so will be on life long antibiotics. I'm still on daily acyclovir for shingles protection and pentamidine inhaler once a month for something. In 3 months they will look in more detail at my white calls to see if T cell levels are OK to fight these infections without medication. I'm now in the middle of having a load of vaccinations but am keeping them 2 weeks apart. For those of you considering a transplant, I had mine when I was 70 and physically I coped well.

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Scaredy_cat profile image
Scaredy_cat
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33 Replies
GardNerd profile image
GardNerd

Thank you so much for this update. It sounds like you're doing well -- and having a great mindset about everything. :)

saltmarsh profile image
saltmarsh

Thanks for the update. Congrats on the recovery to date. Best wishes going forward.

Spanelmad profile image
Spanelmad

Glad to here your doing well and I look forward to further journey updates.

Meatloaf9 profile image
Meatloaf9

Congratulations on your one year anniversary! Wishing you many many more. Best always.

hunter5582 profile image
hunter5582

Congratulations on your anniversary. Glad to hear things are going well.

Anag profile image
Anag

Happy first birthday to you and your stem cells, Courageous_cat! You’ve been through a lot and you are holding through, getting stronger! All blessings for continued recovery. 🙂

MFBMT2011 profile image
MFBMT2011

Well done. You are good example for others to follow. Chris H

Ebot profile image
Ebot

Good to hear from you. Congratulations on your SCT anniversary! Thanks for the update. Glad things are moving in the right direction. Stay positive. Wishing you well.

lizzziep profile image
lizzziep

Good to hear you doing well, long may it continue!

RazB profile image
RazB

Awesome - you and your stem cells! 💪💪👏👏🥇🥇❤️❤️💪💪

Leighcox85 profile image
Leighcox85

it’s so nice to read this I get my date to begin treatment this Monday 5/2 I have been told my sct will be the most high risk they have ever done but I have a 12/12 match so they have made things as perfect as can be but even so it’s going be hard but I said I would rather go out fighting than the alternative I turned 38 last week I have been ill since I was 24 14 years I have had mf and every complication possible has happened sepsis of the bones was one I hope to never have again you take for granted how much your legs do for you I remember reading your posts when you first joined it seems I have watched quietly while you have all been diagnosed had scts silently cheering you on iam absolutely thrilled that it went so well for you I remember how scared you were in the beginning and I hope you get your life back and the future you deserve

Mazcd profile image
MazcdPartnerMPNVoice in reply toLeighcox85

Hi Leighcox85, wishing you all the best for next week, I hope it all goes well for you. Best wishes, Maz

Scaredy_cat profile image
Scaredy_cat in reply toLeighcox85

Gosh you've had a bad time! I really hope your sct goes well. The first few months are hard but I felt quite well in myself before hand so it was a down turn for a while. It may well be different for you. Please keep us updated when you can

ETinNYC profile image
ETinNYC in reply toLeighcox85

Your positive attitude will certainly stand you in good stead. Wishing you all the best as you begin your SCT journey. Sending hugs from NYC.

Mazcd profile image
MazcdPartnerMPNVoice

congratulations, great to hear that you are ok, best wishes going forward, Maz

Sherpa8 profile image
Sherpa8

Thankyou for your update . Glad things are improving for you & I guess the hope is to be less dependent on daily medication as time goes on & your body is ready!

It is interesting to know . I find the whole concept of SCT overwhelming. Also it is absolutely fascinating & amazing. This whole MPN scenario ( our lives!) just seems to be a numbers game. As with life it’s all about balance I guess.

Wish you & all those who have shared their SCT journey , the best & send strength , hope & positivity to you ALL ✨🕊️

Flyingsteamer profile image
Flyingsteamer

Thank you Scaredy_cat for the update and I am so pleased you seem to be on the up after such a difficult start to your journey. It gives me some hope for my own SCT, still booked for 26th March. I wish you all the very best for the future.

Cja1956 profile image
Cja1956

Happy Re-Birthday! It sounds like you’re doing well. May you continue to improve and get stronger every day.

SRH55 profile image
SRH55

Hi, it’s good to hear how you’ve been getting on, I’ve been following your progress as I am a few months behind you. I’m on day +179. I agree it is a tough journey, but after discussion with my MPN specialist & my family, I feel it was the best option for me.

Sending best wishes to you,

Shirley

Janis12 profile image
Janis12

Very best wishes to you, an amazing journey and gives hope to the rest of us who at some point may have to go through the same thing. Please keep us up to date.

Otterfield profile image
Otterfield

Happy Re-birthday!

Poppy6060 profile image
Poppy6060

congratulations may you keep improving look after yourself best wishes Poppy

merlisa profile image
merlisa

I believe this is a difficult process. Congratulations, you have been reborn now. You are my hope!

ETinNYC profile image
ETinNYC

Congratulations on reaching this wonderful milestone. Here's hoping you feel stronger and better with each passing day. Sending hugs from NYC.

Lyndjs profile image
Lyndjs

It sounds like you've been on a rollercoaster of a journey x Thank you for sharing your experience with us. I am so happy to hear things are improving for you x I think this will remind us all to stay positive as it truly helps xx I will look forward to your future updates and hope all goes well with your vaccinations.

Take care xx

Jull2002 profile image
Jull2002

Happy anniversary, glad to hear things are working out for you.

Bullace profile image
Bullace

So glad you are recovering from your SCT. Best wishes for the future.

Lilypen profile image
Lilypen

Congratulations!

Where do you live? I’m in Australia & was told 71 is too old for a SCT.

What did you have? MF?

I hope all goes well.

Scaredy_cat profile image
Scaredy_cat in reply toLilypen

I'm in the UK. I had MF. Before the transplant I had to have a lot of checks of heart, lungs etc to make sure I was up to it

Simon96 profile image
Simon96

Happy Re-birthday!

It is interesting how peoples blood counts rebound at different speeds following SCT.

When I read your counts I immediately thought of the Goldilocks story. Not too fast, not too slow, just right! Congratulations

JustKeepSw1mming profile image
JustKeepSw1mming

So glad to hear! Thank you very much for sharing. Take care of yourself

LFCLove profile image
LFCLove

Congratulations! It is so good to hear your story as I am just going through the initial stages of tests prior to chemo and stem cell transplant. As a fairly fit and normally healthy 68 year old, I’m obviously worried about progressing through the chemo etc.

All power to you going forward🙂

Scaredy_cat profile image
Scaredy_cat in reply toLFCLove

If you have any questions do ask Good luck

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