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2nd Transplant and my daughter is so ill

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  • Hi helen

    i don’t eat spicy food , I can’t manage dry food , I have a gel for dry mouth , doesn’t really work my mouth gets very sore and lumps in my mouth and tongue,I have I’ve been given a steroid base tablet I put in water and rinse my mouth upto 4 times a day when needed , or twice a day when not as bad , it doesn’t taste very nice , but it works I get them on prescription they are called( prednisolone)don’t know if you’ll get them over there ❤️

    Liam_at_AnthonyNolan
  • Hello everyone . I’m so sorry to hear how you are all suffering in different ways with gvhd. I think you all do so well to keep going, being so interested in others and keeping as positive as possible .

    Helen, I’m glad that you feel that the ecp is helping and I really hope that you continue to benefit from it.

    Michelle, the mouth and throat gvhd sounds so painful and I’m glad that the steroid tablets are helping.

    Dave, we haven’t heard from you for a while and we would love to hear from you, whatever is happening remember that we’re all here for you.

    My daughter’s biopsy results came back negative which was a big relief . Her consultant is pleased with her progress and says that if she can get though the winter without being hospitalise, then that will be a big step.

    She is at home with her wee boys and working full time , mainly from home with a few visits into work . I can’t believe how far she has come and so hope that she is moving in the right direction.

    The criminal trial is moving forward now . The highest people from the crown have finished their investigation and the charge is definitely death by dangerous driving. The driver is pleading not guilty so if he doesn’t change his mind, it will be a criminal charge . How I wish this was over and we can be left to grieve Paul with nothing else going on. Time isn’t making our grief any less real.

    Anyway, I don’t usually bring my life into this group but thought you might like an update .

    Sending love to my brave, resilient friends . ❤️

    Liam_at_AnthonyNolan
  • Thank you Audrey, I needed that bit of info. You're always there for us and now I can understand you better. Please let me know if you'd rather I didn't mention it. It is so exhausting and I guess it might be helpful to have space where it's not mentioned.

    I'm thrilled to hear that your daughter is moving on. That's terrific news. So wonderful. I'm wishing that she can keep free of any setbacks, but I suppose it's realistic to expect some but trust that her immune system is getting stronger every day, and she's young, so she has very good chances. Also because she had such a strong gvhd reaction she's got even better chances to not relapse. It warmed my heart to hear about her. I'm very relieved, for you all.

    I so very much hope that the whole terrible ordeal is over as soon as possible so that you can start to find the peace of mind and space to grieve. It's so important for your own wellbeing and health, mental and physical.

    Yes, Dave, you've touched base in fb but this group is so precious, I do hope you call by sometime and let us know how things are.

    I try not to use my phone too much, and give myself boundaries but just a sign of life would be lovely.

    Michelleanne I was recently given a free trial losenger pack at my dentists for dry mouth. They're not practical in the day but they seem to be really helping. I put one in at night. It sticks to my gum, cheek and dissolves over time. Theyre called xylimelts or something like that.. from oracoat.com or something like that...sorry, wrapper is ripped, can't read it. The 'volon' mouth gel , although disgusting, also really helped. I'm also find brushing with bicarb after interdental brushes and normal brushing helps. Maybe electric toothbrushing might help because it's ggentler.i do hope things pick up a bit for you... someone might have some experience on the fb site.

    Love to you all, thanks for being there.

    Helen

    Liam_at_AnthonyNolan
  • Hi all

    it’s nice to hear that we are doing a little better , we do get ready for a bit positivity it brightens my day

    I was at clinic on Thursday my professor is very pleased with me progress and to continue with my care and meds

    my flare ups are normal and part of the course so I’m happy with that

    I’m thinking more of my donor at the minute I read a saying that their donor was their genetic twin I like the sound of that (haha) keep strong my friends ❤️

    Liam_at_AnthonyNolan
  • That's nice... I can bond with that idea, my genetic twin.

    I do hope your mouth isn't too bad Michelleanne. Mine was so bad I could hardly brush my teeth. It's better than it was... far from normal.

    Night night 🌙

    Liam_at_AnthonyNolan
  • Hello you dear lot.

    I keep wondering how you're doing Audrey? Are things moving forward? I'm with you in my thoughts, especially at the moment. I hope your daughter's making headway. That's lovely to think of.

    I'm off to visit hubby in a clinic in Hamburg today. I'm flying from the south of Germany, alone with registered assistance. He's had a new hip fitted.

    Unfortunately I'm in sort of panic mode now. I think it was all that time in the clinic which has turned me into a rabbit in the headlights when Ihave something with an important deadline. Horrible. I'm trying to calm myself. Just writing this to you three is helpful. It'll pass.

    I'm active in Facebook in the gvhd page and tiny secret garden. It does me good to focus on other things. I'd love to meet you all there if it is an interest.

    I still have quite nasty pain in my feet right now, although the new plasters are better than before. It's really nasty. Sorry to complain... it's helpful. It'll pass.

    , I hope things are stable for you Dave, maybe even a little better? Michelleanne, I hope they've been able to find a solution for your lungs and the mouth gvhd is allowing you to eat without pain.

    Oh dear, I'll just take painkillers... that'll get me through.

    Love to you all

    Helen

    Liam_at_AnthonyNolan
  • The flight was cancelled as I sat at the gate in my wheelchair. What's happening... bonkers.

    We've got heat alarm level 1. So I'm in doors with shutters down.

    But the airport saga pushed me and that was good. I even went on a bus first time in 3 years. Lots of help and support but still... I do stairs backwards.

    I'm feeling positive.

    Love to all,

    Helen

    Liam_at_AnthonyNolan
  • Hello Helen . It’s good to hear that you are moving forward . I know that you have a lot to contend with and that you are in constant pain but you do so well to keep cheerful

    i think you are amazing to plan to undertake a plane journey on your own . I would be hard pushed to do that and I haven’t been through half of what you have been through . I know that it was cancelled but the fact that you were willing to go says a lot about your strength of character. Keep up the positive attitude as it really does help

    My daughter caught Covid and you won’t believe this but she wasn’t really ill with it just chronically tired for a week . I hope that this means that her immune system is kicking in although she is still having 4 weekly immunoglobulin transfusions . Maybe that’s what helped .

    can I ask - what’s the tiny secret garden?

    Dave and Michelle , I’m always thinking about you and hope that you are having some better days although I am worried about not hearing from you, Dave, in a while

    sending love to my special friends ❤️

    Liam_at_AnthonyNolan
  • Hi all

    helen reading your post you sound such a different person , very positive and determined and lovely to hear , Dave I hope you are doing ok ? Audrey It sounds like your daughter is doing amazingly well I’m so very proud and happy at what I hear ❤️ my chest is a lot better nothing else to do at the moment 🤞my gvhd is still very painful but the meds help we all have learned to cope in our own way ,

    im also intrigued in the tiny secret garden what is it ?

    stay strong and take care ❤️

    Liam_at_AnthonyNolan
  • Hello all,

    Tiny secret gardens is a Facebook group. I'm also in gvhd upside and gvhd. A few others too if you're interested, let me know.

    Dave, it was lovely to see you light up about Alison's horses. It's a good sign she's not around, but a shame particularly for you.

    I have a tiny garden, it's a real overgrown cottage garden that has turned into a jungle, but I love it. but it's not without its dangers. My clinic team Dr said I should do things that give me a quality of life. I've had the tick vaccination, but still need lots so I do have to be careful. Your chest worried me Michelleanne because it's so easy to get afungal infectionn in the garden.

    I do things like cut my hedge with a pair of hand clippers, but it keeps me out of mischief. Bending down is dodgey with my low blood pressure but I just take it very slowly. I'm sure shouldn't do have the things I do.

    The failed trip to Hamburg did me good and I'm now planning to visit hubby at his orthopaedic rehabilitation clinic ... it'll be our sort of 'summer holiday', Ican share his room . Also ill get mobility assistance for the train trip and send case ahead. It's lovely to be able to share this with you. I'll get to see the sea and I miss the sea terribly, grew up in Southampton.

    The new second skin plasters 'comfeel+' are good and have made it possible. .. when they've been on for 3 or 4 days I have little pain, I'm just not very mobile and very weak and suffer with my eyes.

    Auds, have they told you how long the process will go? I hope they can get it finished soon. I'm afraid I can't imagine what you're going through. it must be tortuous.

    it's great about your daughter, i'm so pleased your daughter got through covid so well. Maybe it's the antiviral meds. It was the same for me, and I had it twice. hardly noticed.

    I'd better go.

    Love to you all.

    Hope you're ok Dave.

    Liam_at_AnthonyNolan
  • I'm with you in my thoughts Audrey. Hope you're ok. Can't imagine how you're coping. So pleased about your daughter,

    Love ... to all too, hope you're all ok.

    Helen

    Liam_at_AnthonyNolan
  • Hello Everyone

    I just want to check in and hope that you are all managing to trundle along .

    Helen, your last text was so upbeat and I’m really hoping that your mobility and general well being is still on the up. I also hope that you managed the journey to be with your husband and that went well. Hopefully, seeing the sea will have given you a lift!

    Michelle, I hope that the pain meds are still helping your gvhd . I know that the fatigue is not great and also hoping that with lots of rest that it is improving a bit.

    The weather here is dreadful ! I’ve had a couple of weeks without family as they’ve all been on holiday so hoping that the sun returns next week when my child duties also return.

    Dave, we haven’t heard from you in a while, but you are always in our thoughts .

    i think we all get pleasure in our gardens and Helen, I joined the tiny garden group !

    sending love to all my friends here. ❤️

    Liam_at_AnthonyNolan
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