Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances.
My check ups have been reduced to once a week and my blood counts are slowly improving. Hb currently at 89 and platelets at 46 so my donor cells are working hard and I haven't needed a transfusion since 10th November.
Although I still have some skin GVHD and some tummy discomfort, it has improved.
I am aware that things can still go wrong so I am just trying to take one day at a time and enjoy the fact that I am able to go for short walks. My appetite is also pretty good now.
Thank you again for all the support. This group has been really important to me.
I wish you all a very Happy Christmas!
Jennie
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That is very encouraging news. Hope things continue to improve on a even keel for a much improved 2023 and before that you can enjoy a peaceful and happy Christmas . Diana
Hopefully you can put it to the back of your mind over Christmas. Then you have a tough month ahead but it does come to an end and things do get better. I am nowhere near back to normal but I look back and realise I have come a long way in the last three months. You can get through it!
Ah thanks for the update Jennie and glad to hear you are continuing to make some progress with your recovery. Wishing you a very happy Christmas too and good luck
Hello Jennie, , , Im so pleased to read things are heading in the right direction and good news regarding transfusion support and GVHD. Due to the effects of the GVHD it took me much longer to appreciate I'd actually come a way on since getting my Donor cells so I reckon you're doing great. We both took a huge leap of faith but ultimately owe our lives to our respective donors and the skill and dedication of our health care teams before, during and after.
I would like to Thank them all personally but sadly most of mine have moved on including my top Consultant who never gave up on me. Some would be surprised to see me now I guess.
I sincerely hope you continue to gain strength but I'm sure you know it's a marathon not a sprint.
Hello Sally lovely to get your reply , , , Many Thanks, , all the very best to you and family for the Festive season . Love from a freezing icy cold Blackpool xx
So lovely our Jedi is still in the force Chris.Keeps me going to know us old MPN site pals are still fighting on. I have worn out my consultant of 12 yrs got a new one now who looks to me she should still be at school ! She’s great tho .Have a Peaceful Happy Crimbo. Love always ❤️Sally
Thanks again , , only just seen this ! I'm pleased you're happy with your new consultant it makes a huge difference to ones care when you have confidence in their ability. Have a good Christmas too , , , Love xx
I've been awaiting your update, great progress thanks for posting. I posted on a recent talk where they discussed the huge improvements in SCT over the last 10 years, nice to know.
I’m doing fine thanks, almost at 200 days post transplant. I’ve hardly had any issues so far other than my Hb count has sat quite stubbornly at or around 80 for the past couple of months. This has resulted in a good few red cell transfusions. I’ve also in the last couple of weeks started to show signs of skin gvhd, itching, rash, etc and started some steroid cream. Overall though I’m doing pretty well and the consultants are amazed at my progress.
I’ve now got wavy hair which I never had before and it’s gone totally grey too
I am frustrated that I can’t do everything I could before I developed mf, but I just need to have patience and recognise that I’m doing really well in the grand scheme of things.
How encouraging your updates are and how good it is to see just how far you have come. Wishing you a Blessed and Happy Christmas and continued steps forward into the New Year.
So pleased you are feeling better and fingers crossed onward and upward. Thank you for sharing your journey with us. Have a good Christmas and let's hope 2023 is a better year.
Very good news! Your courage is showing. Thank you for sharing your journey. It means a lot to those of us who are still seeking our way. Best wishes for continued success!
I’m very happy to hear you’re feeling much better Jennie. Stay steady on the path of recovery and you will be back to 100%. Your journey is an inspiration to me and others with MF
It's great to hear that you are progressing well. Keep fighting and before you realize it will be behind you. Best wishes always, always knew you were very tough.
Hello Jennie. Good to hear from you again. Really chuffed that it's all going well. Hope you have the best ever Christmas and continue to improve. Lots of love. Christine xx
You go girl! ❤️❤️ Everyday is a battle and another victory. So happy you are doing so well. May you continue to grow strong and healthy each day. Have an amazing holiday season this year and next year and the next and so on. 🫶🏼. OXOX
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