Hi all
weekends are lovely we don’t have to think about appointments
I do that with my meds , they always knock me out a bit I’m never up early
you have all made things better for me , we have a good little group here and hope it stays like that as it helps me so much
i know talking to you all I’m not going mad thankyou for being there
keep strong
much love michelleanne
No, your not going mad Michelleanne, you made me smile. I’m writing this in the clinic.
Back on the machine tomorrow and then they’ve got me in for an appointment to talk about my flare up. .. legs, eyes. I bet they say there’s nothing they can do.
I’ll say night night to you all, sleep well,
Helen
Hi helen
hope all went well at the clinic and everything goes well with everything else
thats what I get told , don’t be so hard on yourselve try light exercise but nothing works some days are better than others
night night god bless
xx
Hi all,
So they told me they’re reducing my ecp. I have argued as well as I can for a phase of stability first before they start reducing it. I’ll be really disappointed if they do. I’ve really benefitted from the ecp. I can chat and engage and am not so low again, it’slike an upper. I really need it.
But one good thing was that my new doctor, mid to late 20s seems like a good listener. I’d like to say good communicator but I’ll have to wait a bit to pass judgement there. At least he listened to me going through my list of questions and said he’d talk about my questions with colleagues. Watch this space:)
I hope you’re doing ok Dave. I’ve got a bit of an understanding for your perspective on not getting the jakavi. I can’t allow myself to get angry yet, I need my energy to stay on the case. Maybe it’ll never happen.
Anyway, I’m back home and on the sofa. Life goes on.
Love to you all,
Helen
Hi all
helen I do hope they listen to you and you get sorted
I don’t think they really understand they do the medical side but that’s all or that’s how I feel
please don’t get angry keep you’re energy for yourself I know it’s easier said than done
I was in hospital yesterday for my 5 week appointment for my venesection sick of it now my arms are a mess covered in painful bruises of the needles
hope you are ok Dave & audrey
take care much love
michelleanne
Hi all,
I understand what it is like to have such bruised arms. It happens to me each time I get Ecp one needle in one arm and one in the other and the old bruises never heal before the new ones start. Do you find your circulation of worse since having a Bmt as I often feel I am cutting off my circulation. Good news Helen you got your Ecp today but I cannot believe they are not wanting it to continue. Doom skin issues are not improved with Ecp for over a year of treatment. I find all very hard wondering if my skin tightness will ever improve without the help of Jakavi or rezurock and I don’t want to remain as I am. Even though I find it so hard my thoughts are with you all and that we will all gradually improve. Audrey I hope your daughter is improving and hope she will be home soon if she is not now.
love to you all
Hi Helen,
I can understand how frustrated you are! Let us hope they change thier decision and continue with the Ecp especially seeing that skin conditions don’t any change until about a year of Ecp treatments. I have got to admit it is the only time I get a bit of time to speak to anyone.
Hi dave
yeah I do my ankles and knees ache , mentioned it told to see gp , they say restless legs they ache so much
i memory is so poor some days I feel like I’m loosing the plot
I just take each day as it comes
always here to chat if needed
take care
xx
Hello everyone . I’m so sorry that you’re all having such a tough time but I’m in awe of you all - talking about how you feel and being so supportive to each other ( including myself) .
Helen, I really hope that they listen to you and will continue with the ecp. Keep at them until they see it from your side of the picture.
Michelle - I can imagine how fed up you are with all the needles and bruises. I find it very hard when I watch my daughter going through all of this .
And Dave - we all know how difficult things are for you at the moment. You are a special part of this group and we are here for you as much as you are here for us.
im happy to say that my daughter seems to be doing a bit better at the moment. She’s home with her wee boys . She looks so tired but doesn’t complain. I suppose a 3 and 5 year would tire out a healthy person!
I so wish I could wave a magic wand and lift all the side effects from this illness away from you all. However, with all your strength of character and determination, you will get there .
Thank you for including me in this group. You have all kept me grounded when sheer panic was about to take over .
Look after yourselves and enjoy a peaceful Sunday . Xx
Hi all
audrey I’m so pleased for you and you’re daughter and her family that things are going well it’s lovely to hear , we have 3 grandchildren 9 , 4 and 18 months they are always on the go and tire me but we enjoy them so much .
helen hope things are going ok and they are listening to you
Dave how are you ? Always here for you
I was at a celebration of Life yesterday it was 40 years of transplants at the hospital I had mine it was lovely to see all the people who looked after me and speak to other patients.
take care lots of love xx
Hello all,
I’m really pleased to hear your daughter’s in a better phase Auds. That’s very special news. Thank you.
A life festival sounds like it would do me good at the moment and help me focus on the positive Michelleanne. Pleased you approached it positively. You are so blessed with your grandchildren, I’m very very pleased for you. I’d love one myself I must admit, would never tell my children that.
Hi Dave, haven’t heard from you for a while. Hope you’re ok. Sending you best wishes,
Enjoy labour day all,
Love,
Helen
Hi Helen
you sound a bit down,hope you are ok I told my professor all about chatting with you all , he said what a good idea
it was lovely to catch up with people , they all sailed through it home within a few weeks no patients from when I went in
positivity is the only thing that keeps me going some days I enjoyed the few hours then spent yesterday very quiet as it knocked me out
you can share the love of our grandchildren
hope Dave is ok
love
michelleanne
Hello all, just to let you know… I just got the call that I’m having the ecp, leukapharese coming monday and Tuesday. I’m so relieved, wanted to share with you all. I’m thinking of you, sending energy.
Love
Helen
Hi helen
thats good news , hope all goes ok and you feel a little better , afterwards
I’ll be thinking of you
hope all is ok with you Dave & audrey
have a lovely weekend
love
michelleanne
Hello All
Helen , I am so pleased that you are getting your ecp on Monday and Tuesday and I will be thinking about you and sending lots of positive wishes.
I hope that everyone has had a reasonable weekend. Michelle, I hope that you had a quiet restful weekend after your busy catch up and Dave, I’m thinking about you and hoping that things a wee bit better.
Love Audrey
Hi all
helen I hope everything goes ok , thinking of you keep strong lots of love & best wishes
audrey hope you’re daughter is doing ok hope things are improving slowly , hope you are well too
hi Dave haven’t heard from you in a while hope you are ok don’t ever forget you are never on your own
I’m still getting over my busy few hours , I’ve been so tired but nevermind
keep strong take care
love to you all
Michelleanne
Hi all,
The ecp gave me a bit of life spirit back. I’m booked in for two week gap thank goodness.
My ecp ‘upper’ has enabled me to be a bit more active today. I went to gymnastics for seniors this morning, run by the red cross, on one morning a week in the village school. It’s great cos I can join in sitting down. Small group, very understanding, average age 75, 80.
That said, I seem to be on the same gvhd flare up, nothing to be done. I’m researching wound healing treatment. There’s a system called pico from smith&nephew, very pricey but I called them and apparently they only work with hospitals and practices so I’ll see what my GP says about it. It might help you too Dave. It’s for wounds that don’t heal. I’ve also started washing the sclerosis areas (lanolin in the water) and putting lots of cream on (not the open wounds) . I’ll keep you posted. I’d love to be able to walk.
Wishing you all the best. How’s your daughter doing Audrey? Have you made any headway with alternative treatments Dave? Thinking of you Michelleanne.
Helen
Hi all
helen so pleased you got a boost , the classes sound good we don’t have anything like that , but we are very rural, see what your gp has to say about that system , you seem very organised with you’re sclerosis we all find things that help in our own way .
my eyes have started to ache , dry and sore on trying eye drops , also my legs from my knees down over feel like they are going to burst and are swelling up
hope all is ok with you Dave & Audrey
best wishes
michelleanne
Hello Everyone
im so pleased that your ecp went well, Helen and that it’s given you a boost. Good that you’re booked in again. You are doing so well, going to your gymnastic class and being proactive in trying to help your wounds .
Im sorry that you are having bother with your eyes and such pain in your legs, Michelle. I really hope that your consultant can offer something to help with this.
Dave, we haven’t heard from you for a while but we’re all thinking about you and hope that you’ll be well enough to chat soon.
I feel very honoured for you all to accept me in this group as it’s my daughter, not me who is fighting this illness. Thank you. She is doing much better at the moment. Her counts are going up which is great. She is going to start getting her childhood vaccinations soon. The consultant has advised her not to have the covid injection as this is what started her rejection of the first SCT. I’m really relieved as I was worried that it would repeat itself. He said it was about risk assessment - the chance if another rejection or maybe covid . We will all keep doing lateral flows and protect her as much as possible .
It was lovely that she was with her youngest at his 3rd birthday. He was only a baby when she became ill so at the moment things are heading in the right direction.
it is a very up and down journey for you all and all your loved ones . Keep doing what you are doing so well- embrace the good days and rest and recover when you need to .
Love to you all.
Audrey
Hi audrey
your news about you’re daughter is great , it’s so wonderful to hear better news from everyone
Dave I hope you are ok ?
audrey this group is for patients and family so you are included , it’s a great relief for me to hear everyones progress as it helps me so much , I still lateral flow tests , and wear a mask everywhere I still don’t mix with a lot of people
keep safe & take care
love to you all
michelleanne