SCT update: I just wanted to give you an update... - MPN Voice

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SCT update

SRH55 profile image
31 Replies

I just wanted to give you an update following my SCT.

I am now on day +202, it is a slow recovery, which I knew it would be, but I am definitely having more good days when I don’t feel so tired & manage to go for a walk most days for about a mile. My hospital visits are now every 2 weeks, my ciclosporin (anti rejection tablets) have now been stoped. I was due to have a BMB this month but now it will be in May to give the fibrosis more time to recover. The last one I had said it had improved, but it will take time. I had my first baby jabs on the 5th Feb & I have had 1 covid jab.

sending you all best wishes,

Shirley

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SRH55
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31 Replies
Cja1956 profile image
Cja1956

Glad things are going in the right direction for you.

Scaredy_cat profile image
Scaredy_cat

Lovely to hear. I'll be interested to hear how you get on with getting a 2nd covid jab. It was quite a round the houses journey although I had paperwork saying I should have it I'm due my 3rd shortly and I hope it'll be less hard work

SRH55 profile image
SRH55 in reply to Scaredy_cat

I went to a pharmacy for my first, but they’re not doing it any more. One of the nurses at the hospital says if I’m struggling she would try & arrange for me to have one at our hospital. I’ll let you know how I get on.

Scaredy_cat profile image
Scaredy_cat in reply to SRH55

Re getting covid jab : Tom.Bishop@anthonynolan.org helped and got me an integrated email address for Gloucestershire. He may be able to get one for your county

SRH55 profile image
SRH55 in reply to Scaredy_cat

Just to let you know, the nurse at the hospital has arranged for me to have the Covid jab at the vaccination hub at our hospital. I hope you manage to get yours when it’s due.

Spanelmad profile image
Spanelmad

Positive news!! Glad your starting to return to a new normal.

Smdg profile image
Smdg

well done. That’s excellent news x

ciye profile image
ciye

That's so good to hear

Tintins profile image
Tintins

Good to hear such positive progress. Best wishes .

MFBMT2011 profile image
MFBMT2011

we done. Nice to hear. Chris

Bluetop profile image
Bluetop

Good to hear progress! Best wishes for positive progress on your journey.

champ30 profile image
champ30

Really pleased everything is going on the right direction.Best wishes Lynn

ainslie profile image
ainslie

Congratulations Shirley, it sounds as if it’s going well, I wish you good wind to your sails

Dodders profile image
Dodders

I'm glad to hear that recovery is sounding positive for you. I was very intrigued at your mention of 'baby jabs'. Are you referring to MMR? I ask because since my SCT coming up 5 years ago I've not had any such jabs and have asked about this a number of times and not really got any clear answer other than something about 'live' jabs. Thanks in advance. Tim

Scaredy_cat profile image
Scaredy_cat in reply to Dodders

There are a whole host to have like meningitis, pneumonia, tetanus etc. A full list can be found on the Anthony nolan pages.

SRH55 profile image
SRH55 in reply to Dodders

Hi Tim,

The vaccinations I’ve had are vaxelis (which is diptheria, hep b, hib, polio, tetanus, whooping cough), prevenar (pneumonia), meningococcal B & shingrix, that was 4 jabs. I have some more 4 weeks after that, then some more 4 weeks after that & then still more. I don’t have the MMR till 2 years after my transplant. I’ve also had 1 Covid jab, but will need another 4 - if I can get them. I was told I had no immunity to these illnesses after my transplant. I think you should push for these unless there is a clear reason for you not having them, but then you need to know this. Good luck, let me know how things go.

Good luck, Shirley

Dodders profile image
Dodders in reply to SRH55

Thanks again Shirley. Thinking about it I had a number of jabs a while ago. There seems to be some question over the MMR being given a be and I still don't fully understand the reason why.

Scaredy_cat profile image
Scaredy_cat in reply to Dodders

You would have been eligible for the MMR 2 years after your transplant as it is a live vaccine

Dodders profile image
Dodders in reply to Scaredy_cat

Thank you. I have asked about this several times but never get what I feel is a clear unequivocal answer.

Meatloaf9 profile image
Meatloaf9

Good for you. It sounds like things are getting better day by day. Hang in there, only wishing the best for you.

saltmarsh profile image
saltmarsh

Congrats Shirley. My thoughts are with you and glad things are progressing well.

hunter5582 profile image
hunter5582

Glad to hear you are continuing to recover. Please do let us know how you get on.

CanadaG profile image
CanadaG

great news Shirley! I'm very happy to hear it's gone well.

Bullace profile image
Bullace

Good news! Glad to hear you are making progress. All good wishes for more excellent recovery.

ETinNYC profile image
ETinNYC

Shirley - so happy to hear the updates and glad you're continuing to make good progress. Wishing you all the best in this stage of your SCT journey and beyond. Do keep us all posted! Xx

Wyebird profile image
Wyebird

amazing news. So pleased for you xx

marlenablue profile image
marlenablue

Great news! Thanks for the update!

Jull2002 profile image
Jull2002

Great news. Keep up the positive attitude :)

Flyingsteamer profile image
Flyingsteamer

Hi Shirley, sorry my reply is a bit late but I am so glad to hear you are progressing in a very positive way. It is so reassuring to hear of others success in SCT's as I am on the brink of having my own. I sign consent forms tomorrow and I get admitted on 10th March.

SRH55 profile image
SRH55 in reply to Flyingsteamer

Sending best wishes to you. Let us know how things go.

PhysAssist profile image
PhysAssist

Hi Ms. Shirley,

It's so good to hear that things are proceeding well for you.

Slow is good- my Da always said slow but certain wins the race.

It's a tenet that has stood me well for the past 6+ decades, as I slowly realized that the intelligence he had when I was a tike, that he seemed to lose as I grew into my teens was there all along.

😀

Best wishes always,

PA

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