SCT Journey update No.10: Hi, next update to share... - MPN Voice

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SCT Journey update No.10

LFCLove profile image
9 Replies

Hi, next update to share where I’m at. It’s now +98 days post transplant and bloods are going a little south and have picked up a virus (adenovirus) which my body can’t rid on its own. Have felt ok apart from a cough which was dry several weeks ago, but now is chesty.

Am just about to finish my immune suppression drug (Tacrolimus) so Drs have requested a course of intravenous antibiotics every 2 days!

It means a very early start in the morning, a 3 hour drive to Addenbrookes and various drugs, fluids and antibiotic infusion. Then a 3 hour drive home. Staff have been very helpful and arranged transport too.

Writing this in the Haematology day unit, one handed as am hooked up with fluids pumping!!

Although my T-cell count has risen from 7% - 19%, I suspect that if the white and red cell counts remain low, they will request another batch of blood products from my lovely donor all the way from Germany.

Just a small bump in the road, but hopefully will get back on track soon.

Love and best wishes to everyone, and thank you for your posts too, they do make a difference.

G.

🤓

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LFCLove
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9 Replies
Scaredy_cat profile image
Scaredy_cat

could you have your iv antibiotics at a local hospital to save your drive?

LFCLove profile image
LFCLove in reply toScaredy_cat

I did ask and they contacted my local haematology team and they apparently don’t! From talking to the staff here, it’s a very rare occurrence and they had to read up to remind themselves of the procedure!! Still can’t believe it couldn’t be done elsewhere, I mean, it’s just an infusion, fluids and drugs…… still, I’ve started so will finish….cheers G.

PT99 profile image
PT99

Thanks for the update. Trust you’ll get back on track soon. Best wishes

Mishie14 profile image
Mishie14

What a speed bump but your courage is again showing to overcome it. Celebrating your 98 day anniversary and sending a virtual hug from Michigan USA.

RoundTheWorld profile image
RoundTheWorld

Good to hear from you. Sorry to hear about the bump in the road, but hopefully it will stay a small one. Those round trips sound exhausting; glad you have had lots of support from the staff.

Make sure you take your winter woollies - it's quite parky out there! Wishing you all the best.

saltmarsh profile image
saltmarsh

Thanks for the update. You are a font of positivity which is invaluable to many of us. Good luck getting this under control and best wishes moving forward.

Solyesh profile image
Solyesh

Thanks for the update - good luck!

hunter5582 profile image
hunter5582

Glad to hear that you are doing well overall. Sorry to hear about the long commute. There really ought to be better way to access a simple IV antibiotic treatment. Hope you get through this part of the process soon.

All the best.

Spanelmad profile image
Spanelmad

Keep warm and safe on those round trips you'll be down the straight path again soon!!!

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