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DaveT
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Hi Helen, That is such good news for you. You can now start to enjoy food again and give you the desire to eat. Such a long time for you. I lost mine a while ago but luckily with time they did come back. It is so strange the different timescales for everyone but it tells you your body is still working in the background to…
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Hi Alison, so sorry you are feeling so low and things are getting you further down as all is not working out as planned. Don’t be too impatient about the tattoo I know you want to get it done to go or and remember Martin, hopefully a few days or so your artist will be able to do it. If not you should be able to find…
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Hi all, Hope you are all doing well considering. Alison how are your eyes as I know you said you still had issues and we’re going back to treliske for another consultation. I hope you and your friend are managing to support each other though this traumatic time for you both. Hopefully the dogs and horses are also keeping…
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Hi Helen, when on FB front page click on symbol in top right corner a round circle wit squiggle in it. I unfortunately am currently like you on a bit of a downer and really low. Don’t want to move as is always so painful on my legs. Until my skin loosens up I feel a prisoner to my bed and chair. Luckily with the issues we…
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Hi Helen, Good to hear from you. Physically I have not moved on , mentally a bit I may have. If your skin feels looser after Ecp then Ecp is working. That is your excuse to doctor and overtime it will get better. I would also be careful with cling film as really your skin needs to breathe as well otherwise they would make…
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Hi Michelle, Audrey, Helen, Alison soory haven’t been on in a while. As normal I hve been suffering as no progress made and have been a bit concerned about my mother, and I am not sure if my leg is flaring again with gvhd as is starting to scab and peel again. Helen I am currently trying the cream you recommended dexeryl…
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Alison, Forgot to say that Martin would have been so proud of you for the way you are coping and thinking of your dad like that and remaking the bond between you both. I think we are all proud of you.
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Hi Alison, so good to hear from you and know you are sort of doing ok. Unfortunately I am still struggling hoping this new drug may kick in soon to help loosen my skin so maybe I can start to try and walk again. I keep hoping but nothing happening. lively gesture getting the keep for your dad and good you remade the bond…
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Hi Helen, I hope all goes well for you and you manage to get more frequent Ecp back. Even though I am on Ecp I am still struggling. Unfortunately nothing is helping me yet. I do hope everyone else is making some progress though. sorry not up to writing much
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Hi Helen, I too am finding it very hard. Been playing sudoku for a long time while I am like this. Yesterday I felt maybe I was able to stand up for a little longer and my range of motion was very very slightly better, today things seem worse and the skin on my legs seems tighter. Seems always to be one step forward and…
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Hi Alison, please realise we are always here for you. I wanted to be totally honest with you and want you to come out of this a stronger person. I want what is best for you and at the moment you are really struggling and probably very lonely and your mind is going all over the place looking too deeply into things and…
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Hi Alison, good to hear from you and know you are ok. Although we understand you are still suffering the loss of Martin and will do for a long time to come. Sometimes laying blame somewhere helps us overcome the kiss or account for it as such a loss is so hard to get over. However by continually looking for blame and not…
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Hi Helen, In the US there appears to be certain funding schemes from organisations or drug companies themselves if you can’t afford the drug or your insurance company will not pay for it. Not sure how they can afford to do this though unless they are like charities with funding from the public.
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Hi Helen, whenever I look at the you tube videos it gives me a bit more hope and picks me up and I have a slightly better day. I don’t know if you are taking rezurock but if you look at a video of you search for iach rezurock which are regard to its initial trials and success and how it helps. Definately I think one worth…
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Hi Alison aka Beaglegirl, teally good to hear from you and know you are here. We have missed you. Don’t worry about the mental health label I think most of us are the same we all have issues in our minds to deal with and sort out and we know you or not mental but I could imagine Martin would joke and say you were. All our…
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I think the world after covid has not helped anything. The amount of people with mental health issues after the main pandemic has increased massively. I think many people are also worried about socialising in case they catch one of the strains, more people off work with these issues causing staffing issues everywhere which…
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Hi all, sorry you are all having such difficult times. I hope those with breathing issues that they go away soon. There seems to be a lot of cough and colds around. Touch wood as they say I have not picked anything up but that is as well because I never leave the house only for my Ecp treatments and my consultant visits.…
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Hi Michelle, sorry to hear about your covid result. I hope it is not hitting you too badly. Sorry you are also in such a low mood as well. I unfortunately always seem to have a low mood as my gvhd never seems like it is improving. My flair I jabd months ago seems to be taking forever to heal, and my mobility has still not…
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Your friends in fb I guess are probably aware of what happened and are probably concerned for you if they are genuine friends and not just fb friends. I am sure if you called one she would be happy to chat with you or meet up. I am sure she / he would be more than happy to leave any kids for a while to see a friend in…
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Hi B, You are not upsetting anyone. This is a forum for help and support. You actually help me take my mind off the issues I am having so you writing it helps me as well. It will just take time for you to accept what has happened and to take the next steps. The pain you feel now for losing Martin is so strong now but it…
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Hi B, you needed to get out of the house for a while. Change of scenery and take your mind off things for a little while. Many transplant patients are still at risk after a stem cell transplant as it could still relapse. It is a big thing to take on a new immune system. A lot of those after transplant are generally…
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Hi B, MMF will not make you nuetrapenic by itself. I was on them for a couple of months and my counts were still relatively good still over 4 for nuetrafil. It just makes your body weaker but not normally nutrapenic. Many people who have had transplants and been on mmf and other immunosuppressants have got covid and…
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Hi B, Firstly I hope your vision has improved for you having the laser eye surgery. Hopefully no more cataracts. The doctors would never leave a life and death situation in your hands. The purpose of GVSF injections is to produce more stem cells which in thier own right are quite useless. It is only when a blood cell needs…
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Hi Beaglegirl, you cannot keep beating yourself up over this. You have done everything you possibly can for him and you know that as you loved him so much. If his life hung on having a gcsf injection or not the hospital would have not left it to you he would have been an inpatient at the time. Sepsis comes in when your…
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Hi B, could you not pop down to the crown for a drink or a coffee and chat to your friend there. I am sure she would help. Give her a call if need be.
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Also rather than sitting at home in quiet can you not phone up a close friend and see if you can pop over to see him or her for a chat or meet up for a drink as chatting to someone close I am sure would help a bit. Or ask them to come to you if you had not the energy or will. I know if I was a close friend I would do this…
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Hi Beaglegirl, Just noticed your post as watching yet another film. Sorry you are finding it so hard but I guess really it is so inevitable. I think you should give Rachael from Anthony Nolan a ring as her words may help ease you a little and I know she would want to be there for you. However not sure they are still open…
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Hi Michelle, sorry it knocks you for 6 but it is very good you are near your target. Hopefully you feel a lot better as the level normalise. If you have done it for over a year you have worked hard to get it there. You should congratulate yourself on this achievement and making progress with your health. Congratulations…
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Snippet from google Venesection is the standard therapy for patients with hereditary haemochromatosis (HH), the most common iron-overload condition. Venesection typically involves the removal of 500 ml of blood (equivalent to 250 mg of iron) weekly from patients until normal iron levels are achieved.
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I believe they call the process venesection for reducing the iron.