Latest results after SCT

Perfect place to post as we all understand.

Consultants can be off hand and tend not to explain things which would help turn the stress down.

“....... severe headaches, pain in legs, various infections etc” totally normal post SCT....... it took me a good two years before I would say I was through all these.

I was on Aciclovir for a good 18 months post my second SCT so this will protect you until your re-vaccinations kick in. I was actually having my vaccinations at the same time as our youngest granddaughter :) 

I actually have an emergency stock of Aciclovir at the first signs of Shingles.

You are doing good.

Many thanks for your reply. I see my GP next week so will get Aciclovir then. I'll discuss vaccinations too as I don't expect her to have letter by then.

Thank you again

Jane

Hi Jane,

these things like headaches and pains hit you and make you worry but your team should reassure you as they truly have seen it all before. I’m sure it’s all a part of doing a bit more, now that you’re home, and realising you’ve been very weak, getting stronger is hard work, and your body will be saying ‘hey, steady on!’ 

good to have some meds ‘in case’ till all those vaccinations get sorted. Daughter’s practise were very organised and she had emails/texts to remind her when to fix up appointments, not easy as she’s often away from home for work. (As I type she’s driving home to Henley on Thames from Exeter!) 

im sure you’ll get stronger and also more confident in your body, it’s taken a beating but still doing much of what you expect! After all, a SCT (I assume it was an allo?) is actually a bigger procedure than a major operation. 

hugs xxx

Hi

Many thanks for replying. I was treated between my local hospital and UCLH. I feel more supported by UCLH than I do local hospital and I told consultant that. Because I was very ill and in Critical care on ventilation its left me with right sided facial palsy, deaf in one ear and partially sighted in right eye. I don't like going out and unable to on my own, but I feel useless and a burden to my friends and family. 

I'm sure I'll get there eventually. 

Jane xxx

Oh Jane, 

you’ve really been through it! I think it’s fine to let consultants know how you feel about their care, how else would they get to know?

take it slow and steady, but do just try and stretch yourself a tiny bit each day/week. You’ll look back in a month or two and realise you really are improving.

hugs xxx