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Auds21
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Hi everyone . I have been thinking about you all and hope that the gvhd has improved a bit, Helen and Dave . I also hope that Michelle , you have been keeping as well as possible my daughter is back in hospital again. Fourth time since she was discharged in December . Her lungs are still causing problems so a bronchoscopy…
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Hi everyone Thanks so much for all telling about your “ food” journey. It is reassuring to know that the problems with eating and food seems to be part of the recovery journey. Michelle my daughter is similar to you in that she seems to be craving sweet things and she didn’t have a sweet tooth before the second transplant!…
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Hi All It’s so good to hear from you all and the support that you give to each other and to me is wonderful. you all suffer from such a hard, debilitating illness and yet your strength and personalities shine through. Although it’s my daughter and not me who is suffering from this illness, I feel as if you are all my…
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Hi Michelle, Helen, Dave and Jan3 im sorry that I haven’t been here for a while . You have all been and are going through so much but how I admire your resilience and strength to get up and function every day. Dave, although you feel despondent that you are “ doing little”, believe me, you are doing amazingly well to get…
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I am so sorry fir your loss, Pauline. Xx
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Hi Michelle Thanks for your reply. I think everyone who has gone through a transplant is so brave and strong. The journey after the transplant is still such a roller coaster for many. I know this as my daughter had been back in hospital twice since Christmas. However, like everyone, she finds the strength to keep going. I…
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Hi Michelle i just want you to know that I’m thinking about you. I know ( from my daughter) that it’s a long, hard journey but I also know the strength that you all have, to have got through the transplants and get up every day and keep going. Please be as kind to yourself as you would be to others. sending love Audrey
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Hi Michelle, Im just checking in and hope that you are feeling a bit better and that with spring round the corner that you will manage to get out and enjoy the fresh air. my daughter is doing quite well at the moment. She is a bit frustrated at the limitations that goes with the illness and is quite fatigued. But she’s at…
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Hi Helen and Dave . I’m very sorry that you are both having such problems with your eyes . Try to stay strong . I’m sure that your medical team will do everything possible to help you and I really hope that things improve soon. Think about you a lot. Audrey xx
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Great news Adelaie. Your daughters journey sounds very similar to mine. my daughter was so weak by the time she hit home after 5 months in hospital. She has been back in hospital twice with infections but is making good progress at the moment. I would like her to put on a bit of weight as she’s terribly thin but hopefully…
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My daughter had a virus in her bladder ( BK ) for weeks . It was a challenging time but it did pass. I hope that hearing this helps and I hope your daughter begins to feel a bit better soon. Audrey
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Hi Michelle and Helen i am so sorry that you are both going through so much just now . Michelle, you sound quite similar to my daughter with the chest infection , x ray etc You are both such warriors and it’s definitely one day at a time. Unfortunately my daughter is back in hospital . She spiked a temperature having been…
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Hi Helen. Thank you for your reply and the recipe. It sounds super quick, easy and tasty! I’m so pleased to hear that you had some good spells over the weekend. Hang o to all the good moments and they will het more as time goes on. xx
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Hi everyone im just checking in to hear how you are all doing. I really hope that things are going a bit better for you. my daughter is managing to stay “ stable” at the moment. She’s still very thin but making a good attempt at eating. It’s lovely to see her with her family although I know that she is very fatigued and…
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Hello Helen I am so sorry that you are suffering so much with your eyes just now as well as your mouth and legs. . This must be so hard for you but I know that you will get through it as you have done with the gvhd in your bowel, lung and liver. I am glad that you can tell us about the way you are feeling because it helps…
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Hello Helen I just want to say how pleased I am to hear that the gvhd has began to improve . I know you went through a low time over the Christmas period and so this is very good news . Adelaide, I would second what Tony has just said. Your daughter is in very early days of recovery and I think it is a hard road for…
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Hello Adelaie i am so sorry that your daughter is so ill and also that you are going through so much worry. I can empathise so much with you as my daughter had a second stem cell transplant at the end of July. She was admitted, very ill with pneumonia and has had a very rough ride. There were times when we really thought…
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Thanks so much for sending this link, Helen. I’ll have a look and also forward to my daughter. It’s good to hear that your fatigue has improved . How has your gvhd been over the past week or two. I do hope that there’s an improvement. Michelle, you never pester. You are such a great support and friend to us all and if we…
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Hello everyone I’m sorry that I have been slow to text over the last week or two. I haven’t been very well myself - just a rumbling chronic condition which has flared up a bit. Anyway, firstly , I hope that you are all keeping as well as possible and that the gvhd that Dave and Helen have been suffering with has eased off…
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Hello everyone. Thank you so much for all your detailed replies. They are really helpful and reassuring. ill keep you updated on my daughter’s progress and hope to hear that you all have some better days soon. You are all such a support to myself and each other. Thank you.
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Hello Michelle, Helen and Dave i am so sorry that you are all having such a rough, challenging time. My heart really goes out to you all as I can see first hand what my daughter has to go through on a daily basis . I don’t think anyone who is not either fighting this wretched illness or caring for someone going through it…
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Thank you so much, Michelle, for your kind message. Im so sorry that you have had a virus and it has been rumbling on. Are you getting over it now - I really hope so. When I am with my daughter and see what she is going through in a daily basis with such strength and courage , I have nothing but admiration for yourself and…
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Best Wishes from Audrey
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Hi Everyone I hope that you all had the best Christmas possible and I wish you all a happy and healthy New Year. Helen and Dave, I have been thinking about you and so hope that the gvhd eases off a bit soon and that you both take more forward steps in the next few weeks. My daughter managed to spend Christmas with her…
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Hi Michelle, Helen and Dave, Thank you all for your kind, supportive messages over the past months . I feel as if I have gained such good friends on this site. Helen, I’m so sorry that you are struggling just now. As an onlooker and also very involved with my daughter, I see that this illness is like a roller coaster. One…
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Hi Michelle and Helen. Firstly, Helen , I want to give you a big virtual hug and I can’t say how sorry I am that you are having such a rough time. Although I am fortunate enough not to suffer from this cruel illness, I go though it daily with my daughter and know just how challenging every day is. I also can feel both you…
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Hi Dave, Michelle and Helen, Thank you Dave for sharing some of your journey. It really helps to know what others have gone through and I’m so glad that things are slowly getting better for you. Also for explaining and reminding us just how much you’ve all been through and how it requires so much patience and how symptoms…
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Hi Michelle My daughter has picked up a bit since Tuesday, thanks. The enzyme part of her liver is causing problems . They think that it’s either the gvhd or one of the meds that she’s on. I think it’s the anti fungal one so they are going to change it to see if that helps. She still had no appetite and they are keeping an…
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Thanks so much, Michelle. She’s so thin and unwell. She’s also so uncomplaining like everyone else here. Yes I have family to talk to. I’m also helping out with the wee boys so that is a nice distraction. I’m a half way house. She needs to get back to her family but she’s not strong enough yet. I hope that you are feeling…
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Thanks Michelle and Helen. I’m beside myself with worry this evening but your words of encouragement and sharing your experiences real help.