Awaiting or considering or had a stem cell transplant, a place to share here

Going through treatment
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1041

Ok thanks for that Lyn. :+1:

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1042

I am glad the wig fitting went well @Ashob and that everyone has had a go at it.
At least you can laugh about it, as did everyone else !!!
Yes, please keep posting on your time scale as you know it.
Look after yourself.

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1043

Dear All

still bleeds coming and going, apart from that everything good. Just praying the steroids start to do their job soon. I doubt they will let me home while I’m still having bleeds.
Just when we thought we had food sorted now hubs can’t visit. He said he will drive over every other other day to top me up with ready meals and snacks, hr each way, bless him. Hopefully my daughters will help out too.

My friend came and gave me a short cut before I came for transplant but it still drove me mad on my pillow each morning and all over my clothes. When I came in one of the nurses shaved it off for me. I decided it was all part of the journey and actually it was so easy, that was in Oct last yr. I now have a nice covering, really dark with bit of grey. Its mostly straight with a few curly strands :joy:. The worst thing is my hairy face and chin​:see_no_evil:.

I miss everyone so much, can’t wait to get home.

Hope your back improves @Lyn99 , pain is so tiring. Is it the meds your on? xxx

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1044

You’re being so chipper, considering the circumstances, @Summertime. I hope you get that steady supply of meals, especially as the steroids may make you hungrier. Willing you to be out on Monday. X

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1045

I have tested pos for covid :tired_face:

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1046

Oh my goodness, @Summertime, I can’t believe it. You’re having extremely bad luck. I’m so sorry. I presume this means you can’t go home today. : (

Are you feeling ok? I sincerely hope so. Please take it very easy.

Really, really gutted for you. : (

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1047

I feel, no symptoms as yet. They gave me infusion of Sotovimav last night, which is supposed to help.nurse said most people on covid ward have no symptoms xx

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1048

Oh great that you’ve had the Sotovimav already, and I"m so glad you haven’t got symptoms - long may that continue. Could they send you home then?

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1049

The only thing I can say, as others have, I just don’t believe it @Summertime.
You will have to write a book about your stem cell transplant, although no one will realise that it is a true story.
I am so, so sorry but pleased that you got your meds speedily and have not got any symptoms.
Please keep posting as you know we are all here for you, I just feel so helpless, virtual hugs. xxxx

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1050

I just can’t believe this!!! Hopefully the anti virals will do their job! I agree with @Erica, you could definitely write a book. Please take care X

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1051

Well that’s just crap :persevere::persevere:
Sending huge hugs and love. Hope the antiviral med works well xxxx

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1052

How are you doing @Summertime? X

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1053

Still no symptoms. Consultant suggested yesterday that maybe I could isolate at home, which sounded good. But then of course, I’ve had bleeds on and off all day.

He said I seem to have good days and bad. Possibly could go home but if I have a bleed I would have to come into Addenbrookes outpatients for them to check my haemoglobin.

Think I’m happy with that as I really can’t stay here forever, been here since 5 Feb!

Will see what happens tomorrow. I feel pretty good otherwise. Really all they are doing is giving me meds, obs which are all stable for past week and monitoring the blood loss, it’s not much just when I open my bowels .

xxx

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1054

Oh @Summertime we await, still got fingers and toes crossed for you.
xxxx

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1055

So glad you don’t have covid symptoms, @Summertime. And really hope you get to go home tomorrow to isolate.

Sorry you keep bleeding. I did too until the infection cleared up (presumably.) Being just over a year post-transplant at that time, my bloods had been fairly stable, but my consultant did say recently that my haemoglobin dipped quite a bit when hospitalised for this infection (which I didn’t know at the time.) But I imagine that was more the impact of the infection, rather than significant blood loss, as that was only a small amount each time.

Did you ever get a diagnosis beyond colitis? A suggestion as to what was causing it? Graft-versus-host-disease? A specific infection? I hope they’ve got some clarity now.

I cant believe you’ve been in there so long. You must be desperate for fresh air, decent food, your own bed - and no bleeping obs in the middle of the night!!!

Please, please, please let Summertime get home tomorrow, oh God of Hospital Discharge Papers! X

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1056

I think all of us are wishing you home tomorrow - there will be a big cheer from Ali’s all. Fingers crossed! I bet you’re missing those cream cakes! Sending extra special wishes your way! X

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1057

Hi @ Fullofbeans and all

They are working on Graft-versus-host-disease now so on steroids for last week, still having bleeds when I go to the loo. They are monitoring my haemoglobin and think I might need blood today as feel a bit wobbly. I guess this is the prob me going home.

They have ruled out infections now as obs all fine, no temp.

I have suggested if I were allowed home, we come in everyday for a blood check until things settle. At least I would be home. It’s a bit of a journey but not like we are doing anything else and we used to do this after transplant.

It’s Mother’s Day sun and hubs birthday week on Sunday, be nice to be home.

xxx

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1058

Hi @ChrisCKW how are you getting on with nasty meds? Are you still coming into clinic for bloods etc? xxx

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1059

I hope you are feeling less wobbly, keep setting the seed and giving the strong hints about your plan for going home !!!
The clocks spring forward at the weekend too.
xxxxxxx

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1060

That sounds like a good plan you have there, @Summertime - very reasonable. And I’m sure they’d prefer you to be at home. I hope someone gets the ball rolling very soon.

Ah, it’s a shame it’s suspected Graft-versus-host-disease, but I understand it’s very common, can be a good sign, and it’s treatable. I sometimes worry that I haven’t had Graft-versus-host-disease! I really hope the steroids control it. At least you’ll have a good excuse to triple the cream cakes ; )

Yes, with Mother’s Day and your husband’s birthday, you’ve got very good reason to get home. I know they do breakfast in bed in hospital, but…!

I so want to hear you are home. Maybe next time. Xx

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