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 ❤️
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 .
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.
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 ❤️
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.
Comments
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 ❤️
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 . ❤️
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
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 ❤️
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 🌙
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