Well here I am 21days post transplant and I’m HOME!
It’s only 3 days but it’s so good to be back in normal surroundings.
Already been back to Addenbrookes for Tacrolimus levels check and full blood counts.
So far counts are still rising and long may that continue.
I have scheduled weekly appointments for blood counts and Hickman dressing changes for about the next 6 weeks.
Yes I still have the Hickman but to be fair it’s a bonus as it limits the jabs you have and me still being needle phobic…
Have had a few instances of heartburn and indigestion and general fatigue but am slowly getting used to the drug taking regime and finding an appetite and just have to hope that sleep will get better.
I will update again.
Thanks for all your responses, they really do help❤️
Love to you all❤️
G
🤓
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LFCLove
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That was a quick turnaround. I had trouble with sleeping but I was on a steroid for a while and I think that was the cause. My sleep improved after I stopped the steroid.
Cracking news, home so soon ! , , it feels good to be in familiar surroundings and ones own bed. Your Hickman is a good ally albeit it can be a bit tedious getting it flushed through. I covered mine with a bag when bathing and stayed clear of line infection. I really missed my line when I had to go back to sharps but I had it much longer than normal (2 years plus) due to my GVHD treatment. I hope everything continues to go in the right direction for you and your appetite picks up.
That's amazing news. To only be at 21 days and back home is an outstanding achievement. I know the recovery will still be long, but it must be such a relief.
You give me hope that a SCT is not as scary as I currently think.
Hi Hatchie . Just to say I believe a fair bit rides on what frame of mind one enters the process in. I was one hundred percent committed to making it through and full of belief even when I had severe Graft Versus Host Disease. And had I not made it I wouldn't have had any regrets because I was at peace with my decision to rid myself of my MF. As for the process it's all doable but you need to be prepared to follow the regime to the letter.
Fantastic news! Hope your recovery continues well.
I must say by way of this forum, I am always delighted to hear of the many successful SCT in the UK. It must bring so much hope to anyone approaching this difficult decision.
I’m doing really well. The first 50 days was the hardest, more mentally. All the twice weekly trips to Kings were very tiring. I am now down to every 6 weeks which is relief as I have to fly from Jersey every time . Thankfully I have not experienced any set backs so far. I’m still cautious and am not counting my chickens. Stay well x
Brilliant long may it continue. I always said it was as much a mental battle as a physical one. And I thought I had it bad travelling by car from Blackpool to Manchester (55 miles) twice weekly so fair play to you. Cheers!
Great news to hear you are home. Well done.Am full of admiration for you, enduring all the procedures, poking and prodding, all the side effects, and constant tests, and no complaining or feeling sorry for yourself. You are an inspiration and I shall bring you to mind when I am about to complain about my next BMB which sounds like a walk in the park compared to your treatment. Good luck as you continue to recover.
That’s great news, it seems you’ve been discharged quite quickly, it is so good to be in your own surroundings & your own bed. The picc line certainly has its advantages when you need so many blood tests & transfusions. I brought myself a tablet docket box & sorted my tablets out once a week - I did have to have some help!! Do accept that you will probably feel quite tired, so rest when you can & accept any offers of help.
Chiming in along with everyone else. So happy for you that you're getting stronger by the day and back home. Must be really wonderful to be in your own familiar bed and surroundings. Wishing you continued improvement in how you feel with each passing day. Do keep us all posted with updates as you continue your journey!! Sending hugs from NYC.
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Haematology Appointment Update 
Update
SCT go ahead
