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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
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.
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
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.
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
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 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
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.
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
Hello all, I'm relieved to hear the good news about your daughter Auds.
I'm struggling and was at the GP this morning. She's agreed for me to apply to go on a rehab for immun compromised patients. I don't look forward to being in an institution again but my quality of life is really poor so I hope they can help me somehow improve.
My doc is also referring me to a determatologist to set up a treatment plan. I'll have better days. At least I had a nice , although exhausting, weekend,
We're heros, you too Audrey, let's keep it up. You're with me.
helen I’m so sorry we are struggling at the moment I hope they can help you and you feel stronger soon
pleased you had a nice weekend , we did but also exhausting had our daughter and granddaughter staying with us at our holiday home love the dearly but I get so tired
I don’t class myself as a hero , the people who look after me and my donor I wish I could speak to him
we have to keep going together
sorry not been on here for a while but have also been finding things difficult. If I found I was genuinely making some little progress and that I would eventually improve I would be more upbeat. For this o am sorry.
I am sorry you are also finding it so difficult, but I know exactly where you are coming from. Deep down we want to improve and try to improve whilst having this terrible gvhd but we cannot really do anything to our recovery, it is just waiting for the disease to relapse and who knows when that will be. It is good to see you are trying positive steps to try and get there.
It is very good news about your daughter. I hope she continues to go from strength to strength without too many gvhd issues.
I don’t know how you do it? You seem most of the time to be getting on with things quite well. I wish I could be more like you.
However difficult it is we need to fight on. We knew it was going to be a long road and we all have to be patient. I believe that we are all about 2 years more or less out from sct and I think by stats and peoples experiences on the whole is now appx when things should hopefully start to get better.
I am nearly on a year now of Ecp and I believe maybe my skin is very very slowly improving but like Helen my quality of life is really bad. Hayho that’s life and I just have to be a bit more patient. Anyway off to bed as have to be up for 5am for my hospital transport to my Ecp tomorrow.
its so nice to hear from you , I’m so sorry you haven’t being feeling better
you will get there one day at a night , I am doing a lot better than you and Helen , things are so different than before , but I can cope in my own way
i had counselling from a lovely lady from McMillan nurses she was so lovely and helped me so much , maybe something for you to think about you can do it over the telephone
it will be 3 years in august since I had my bmt , I have more pain and sore eyes now my skin is a lot better
keep talking Dave always here for you even on bad days
keep strong and fighting
love & best wishes
can I ask you said your skin had improved? How was it before? Was it tight? Open wounds? Skin mottling ? and how is it now? I think you are lucky to be nearly three years out as I think time does possibly make the difference. Sorry you are suffering pain and sore eyes. I recently thought I had an eye flare up due to gvhd as mine got dry, sore and gritty and I tried optase eyelid wipes for blepharitis and my eyes feel a lot better..
love and best wishes
just returned from my Ecp so I am shattered so about to have a snooze
i had bad mottled skin no open wounds , my skin is dry , tight I use hydromol ointment it’s like Vaseline for washing and as a moisturiser
my eyes are dry and gritty , my legs feel like a balloon that is over stretched
they are painful from the knee down
but I am very lucky to be here , so I soldier on otherwise I’m very content , I have a lovely simple life and a wonderful husband and family
Enjoy your rest and you feel a little better
Helen and Dave, I am so sorry that you are both struggling so much with the symptoms of gvhd. I think you are amazingly brave to recognise that the rehab will help you at a time when you need additional support to help you through this phase of the illness. We are all here for you .
Dave, you too are going through so much but even although you are feeling low, you take the time to offer support and suggestions to the rest of us . As you say, time seems to be the one thing that will help your symptoms and I really hope that they start to ease off soon.
At the moment my daughter seems to be doing better physically. However , the trauma of everything that she’s been through has taken its I’ll and like you, Michelle , she has had some counselling which she has also found helpful.
You have all been through and are still going through so much, that I think you are all heroes. As you all know, I have a daughter who received a transplant from her sister and my son was an organ donor so I think everyone involved in this is a hero.
Love to you all.
I think I feel a bit more up set now as been doing a lot of chatting online via Facebook with gvhd suffered with very similar symptoms to me in my legs which is my biggest issue. I believe I may have Myositis which seems a fairly common gvhd symptom. I have a Bmt clinic luckily tomorrow and I am going to see if they will send me for mri on my legs to see if I have Myositis. If it is found I do have Myositis I will then see if they will treat me with Rituximab infusions which seems fairly successful for Myositis.
Audrey, I am glad your daughter is doing so well physically, let us hope she does not get too many gvhd issues of any at all. It is good she is getting psycological help, I think I need some but am not at right stage for me as it could make me worse presently. The whole process is so psycologically damaging so it is understandable. I am currently a psycological wreck.
well everyone look after yourselves. Off to doctor tomorrow.
love and kisses.
Have had my Bmt clinic today and saw consultant. He is trying to arrange Rituximab treatment for next week, so all fingers are crossed.
that’s good news , I hope you do 🤞🤞🤞I bet you feel better knowing that
hope all goes ok
Many thanks. It is good having something to look forward to that may help me mobilise again. I would much prefer to look forward to a proper holiday but that will have to wait. Long way to go first.
Hope you are feeling well today?
i hope so , look forward to a nice holiday , where would you go ? We haven’t had a proper holiday for years I couldn’t manage a cruise now , we bought a holiday home so we are there regular , and I’m content with that , and we are having a trip on a steam train for the day in September as it’s our 40th wedding anniversary
I’m tired today we went out for a few hours yesterday to pick up a gift of my husband legs and eyes sore
keep strong you will get there
Dave I am so happy to hear that your consultant is trying to arrange rituximab treatment ( although not sure what that is ) . I really hope that you get it and it helps with your legs and mobility.
I think that anyone going through what you have all been and are going through , would have some psychological issues . You all do amazingly well.
Michelle, it is also my 40th anniversary this year ( October ). My husband is keen to go away for a break but I don’t know if I’m ready to go very far from home . I think I’d be so worried about my daughter . We’ll give it another month or two and if she is still doing well then we might head off for a short break.
Helen, I’m thinking about you and sending hugs .
i wouldn’t want to leave my daughter , even in good hands , I know I can’t manage a holiday , so we’re having a day trip on the flying Scotsman with lunch in the Pullman carriage on our way to Edinburgh
hope you are ok helen
i meant to say what a amazing thing you’re son did for other people and your other daughter helping too ,I bet you are so very proud
Thank you, Michelle. I am very proud of all my kids .
I feel as if I’m living under a big dark cloud but seeing my daughter get stronger is keeping me going.
A day trip on the Flying Scotsman sounds fabulous . I’m sure it will be a great day and will give you lots of wonderful memories .
I hope that you are resting your legs and that you get some relief from your leg and eye pain. This illness and the effects of the treatment certainly challenges you all and I’m in awe of how you all handle your symptoms with determination, patience and strength.
Love to everyone . Xx
Thank you all for your support and wishes. You are all warriors. Audrey for being there for your daughters d trying to understand how she feels and what she is going through. Being there for her and supporting her will mean a lot to her. I don’t know if she is suffering any gvhd at the moment but luckily you are geared up for that if she does, knowing and understanding gvhd is a great benefit if you are supporting someone as most people don’t understand it. They expect if you are out of hospital you will gradually get better and you need to push yourself to get fit. With gvhd you can come out of hospital and start to go downhill, get gi problems, skin issues, mouth issues, eye issues etc which can affect mobility and flexibility and pushing yourself can actually make symptoms worse. Michelle, you are so strong managing to get on even though you have gvhd issues. Helen tried as hard as she can and respect her for the fight she has to improve her situation. I unfortunately do try to improve but find it does not seem to progress me and this then gets me quite low. All I feel I can do is is sit / lie around waiting that I may one day get improvement. I do have a little ray of hope now that next Wednesday I am having my first Rituximab infusion which has worked quite well in treating sclerotic and muscle inflammation gvhd.
Thankyou all again for your support.
dave you are a fighter too , don’t be so hard on yourself , think of what you have been through , I don’t go on Facebook or anywhere else to read about my illness I take it as it comes , I don’t want to know what can come or how things will be I just take one day at a time other wise it would frighten me and that’s how I cope
we all manage things in different ways & do what’s best for ourselves
hope all goes well next week
always here for you ❤️
Just skimmed through all your kind posts. Thank you.
Rituximab.... oh no, I'm already feeling hopeful it might help. Really good to hear from you Dave, the pain makes normal life impossible. The skin is my major issue. I'm in the clinic for the ecp tomorrow and will mention it.
I think the Reha is too soon so I won't apply yet. I have open wounds and so have heard I can't swim. That's my dream, to get in a pool. I'll just sit tight and work on closing wounds. I can't get into a feeling of "time will heal" , it hasn't helped yet.
Thank you Michelleanne, you're kindness is helpful and warming. And yet you've been through so much.
Dave thank you for being there. Sorry I didn't take your situation seriously enough. I've read in the British press what is happening in the NHS and how it's impacting patients. It's frightening. My thoughts are with you.
Audrey, keep it up, your daughter's news is still sending relief ripples here.
Thank you for this precious little team. ... Dave, even though you're not in a good place, this place has nothing to do with all the life baggage, We value you very much. That helps me to know too.
hope all goes well tomorrow and you soon get help with your skin ,
to all we will all get there together in our own way & at different times
always here for you all , no matter how bad you feel you are never alone hope you never forget that
life is so different , it takes a lot to come to terms with
I can’t complain about our nhs my experience has been very positive I never expect to much and never complain
I just get on with whatever my consultant says , my husband says it makes a change haha
love and best wishes to you all
Glad to hear from you. Sorry you too have been suffering. I know what it is like not to continue with a normal life. I have been more than two years not been able to walk much and be stuck in bed or an armchair. Most days I cannot stand for more than5 mins asthenosphere skin is so tight around my knees and I just fatigue. I am really hoping that my Rituximab gives me a little mobility back so I can mobilise a bit and not be stuck in a chair, on the other hand I worry if it does not help a little what are my options? I worry about the side effects some suffer from it but if I don’t try then I may never get out of this hole I am in. I can understand your wounds being just as frustrating for you and you cannot swim or frhab until these are healed. Hopefully this will not take too long for you.
Audrey I am glad your daughter continues to make progress, even if it is little it is good as I do not feel like I have made any for a long while so I now appreciate little steps more. I do hope she does not suffer gvhd like we have or she has better coping mechanisms.
Michelke. I still cannot believe how strong you are and how you cope with things. I guess for me it makes it morrrdifficult bring on my own, as my wife decided when I got gvhd it was too much for her Andretti live with her sister in America.
Many thanks to you by chatting and helping me through and I hope we all start soon to make more progress to get us the end of this horrible road.