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HelenSpeedwell
Comments
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Hi Dave, keep me posted with the impact of that device. It sounds really good, I'll check it out on amazon but shame it's expensive. It would be marvellous. I'll ask my team if they've got one I can try out In the clinic. Helen
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Thanks Dave, really helpful. I'll check it out with my team. Helen
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Hi Audrey, above is a link to a facebook group on fatigue, the related group and App is called 'untire' and based on recent research from Holland. I'm sending it because I can't find a link to the untire app which I found really useful when I was struggling with cancer related fatigue. Maybe you can find it in the google…
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Low-dose UVA1 phototherapy for treatment of localized scleroderma☆,☆☆,★ MartinaKerscherMDaPeterAltmeyerMDa Hello all, Here's the title of some research on the uva1 treatment. I just googled uva1 treatment. It looks promising. My only concern is that the chemo and ecp have made me more prone to skin cancers triggered by…
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Hi Dave, Thanks for getting back, yes imrelieved the ecp is back on. I don't know how, but it is helping. Fatigue is much less. The painkillers are new and seem to be the driver for my new found appetite. I've even put weight on for the first time, as of my last regular check up last week. Thank you for telling me about…
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Hello all, How's it going Hollintree? My skin gvhd is limiting my walking and stairs are difficult. Painkillers are helping a bit. I was told today in writing that I can't drive because of my gvhd eyes. I'm planning on having the tear duct plugs fitted asap and reversing the statement asap. Without the car I cannot manage…
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Hi Adelaie Has your daughter received any results yet to confirm the stem cell transplant has worked? You mentioned in a post that she'll find out soon. I hope so, and then she can focus on coping with her symptoms. Sending a big hug Helen
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Hello Adelaie Check out the thread: 2nd Transplant and my daughter is so ill We've shared on it for a while and you might find comfort there just scrolling through. We are with you in your terrible time. We can appreciate you and your daughter's situation too well. Even if we're not writing, we send our kindest wishes and…
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Hello Audrey I just noticed another parent coping, trying to cope , with transplant, aml in their daughter. It's in the list of topics. You might find some relief there sharing parallels. I hope you and your daughter are doing ok, maybe she's out of hospital, whatever. I'm thinking of you and sending compassion. Love Helen
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Hello scaredy cat, would be nice to have your name. I'm sure you're not a scaredy cat. I have no experience and can't help. Hope you find someone. Don't forget there's also gvhd Facebook group with over 4 thousand members. Best of luck Helen
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Hello all, Thanks for sharing Audrey, it's lovely to feel a sense of value in all this, to be of some help. I had lung issues and they syringed over a litre from one lung. The lung gvhd got better over time. The gut gvhd 4th grade. was the worst. Loss of dignity, no chance to go far from a toilet. Very limiting. And yes,…
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Hello Pauline, My deepest sympathy. I'm afraid words are not enough here but please be sure that many of us are with you sending kindness and peace in your grief, having read your post. The line between survival and not, is a very fine one, as Steve said, and I feel very close to your story, after 18 months post sct. I'm…
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Hi all, i was fed intravenously but thankfully no tube. We really do suffer ... it's going on so long, and I'm only 1 and a half years post sct. I'm finding eating very stressful, exhausting in fact. Maybe it takes a lot of energy but I feel like I've finished a marathon afterwards. I'm hoping if I eat more , I can turn my…
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Thanks Michelleanne, It's nice to feel understood. Big hug Helen
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Thanks Dave, wishing us all just what we need, when we need it. That would be great. Helen
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Hi Michelleanne Thanks for asking, not so well. Feel like im underwater and very painful ankles sclerosis and skin gvhd. Suffering a bit. A week today ecp again. Nice to have a week without it. My appetite seems to be picking up, I'm forcing myself to eat more. I can't really call it appetite but something tells me to eat.…
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Hi Steve and Dave, Just a quicky, my skin on my ankles is very tight, skin breaks and hurts, is very thick and flakey. My feet are numb but at points very sore and painful. I'm on number 20 of ecp, so at the start still really. I recently got painkillers for the polyneuropathie in my feet and painful skin, which allows me…
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Hi Michelleanne, Sorry to hear that about your blood values. I had a sticky patch with iron. I was prescribed it and it interacted badly with something else I was taking. It made me extremely depressed for a day or two so I stopped taking it (without Dr's consent) and things were instantly better. The docs agreed for me to…
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Hello Audrey, Dave and Michelleanne, Really sorry you've had such a bumpy ride recently Audrey. I'm so pleased your daughter has a medical team and facilities where she's in good hands and they can offer her what she needs. How far is the journey from home to the clinic? Must be hard for the children that she's back in.…
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Happy new year to you all, and all your loved ones. Helen
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Hello Michelle and Audrey, I hope we are able to enjoy our blessings in the next few days. They are so few but all the more special for it. I seem to be taking steps back at the moment. I can only be in the now because everything else just annoys me. You are blessings to me and for that I'm very grateful, I wish you…
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Hi Dave I feel just the same about portioning my access to the different gvhd forums. It impacts me too. I'm lying here and need to sleep for a very early eyeclinic appointment tomorrow , but cant cos of the skin ankle sclerosis gvhd. Painful, and the gvhd seems to make it more painful, but i think the ecp does help me…
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Hi Liam, And hallo Michelleanne and Audrey, thank you very much for getting in touch Liam. I live abroad so the Hotline number doesn't work for me. I've given the number to my mum but she said it's all a bit too much for her at the moment and she'll be in touch when she's ready. She was grateful to get the number though…
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Thank you so much Michelleanne, I have a feeling that you really understand me which I'm deeply grateful for. I'm glad I reached out. It helps so much to know you're there, thank you. Much love, and strength to you too. Helen
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Hi Audrey, Michelleanne, I can't agree with you Michelleanne about our recovery - it's as good as our treatment. I have an excellent university clinic only 8 miles away. They can offer me great treatments and I have a super doctor and team. I have chronic gvhd in many organs and it can last for years. There are treatments…
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Thanks for getting back Dave. I'm pleased your transport is part of the ecp treatment deal. Sounds well organised. Glad you are being kind to yourself too, that gives me a clear message about myself. I'm finding after midday is when my day starts and at the moment I'm just trying to accept it which is difficult. I spend…
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Hi Dave Tuesday today, I'm thinking of you on your long trips and wearing treatment. Hope it brings you a plus, even if only in the long run. Does someone drive you? I'm not doing well myself, emotionally low and physically missing the ecp... flakey ankles are painful so not sleeping well. I can't get out at all cos it's…
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Hi Dave Thanks. I find knowing when to 'push myself' or just go easy and be kind to myself a difficult line. Thank god I have recently got a therapist paid for by the health service who seems to be taking me seriously. He's not very experienced and doesn't do much, but I make the most of it and try to see it as a win. When…
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Thanks Dave, It sounds very plausibld what you say, I've had plenty of covid jabs and along with the ecp it probably protected me from symptoms. I'm finding it mentally challenging ... to be isolated on top of social isolation. I can't even sit in same room as hubby cos he can't afford to get it. The ankles and feet are…
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Hi all, I was sent home without ecp this week because I tested positive for covid. The gvhd is already getting stronger. Has anyone else had to have a break from the ecp? Should I ask to increase my jakavi just to see me through this week or two? Thanks, Helen