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DaveT
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I believe they call the process venesection for reducing the iron.
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Hi Michelleanne, Do they regularly take blood from you and throw it away as this seems to be the process they generally follow to bring it down, and they say you often get this from many transfusions. Whatever I hope they get it down for you.
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Hi Helen, I don’t understand your doctor. Gvhd is caused by an overactive immune system so how can it be weak. Stopping Ecp could cause flare ups and make things worse. You usually stop a treatment for gvhd when things start to get better. However I did hear from my Ecp nurses that the doctors were planning taking patients…
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Hi Helen, sorry you are feeling so low but I do know where you are coming from. I think psycologically gvhd does so much damage especially when the recovery path does not seem to go the way you want it to. 1 step forward then 3 steps back. I think you have had a harder time with your issues than I have had I didn’t think…
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Hi Audrey, It is watch this space now. Just took my first dose. I was a bit apprehensive of taking the medication as the only thing giving me hope currently and I am afraid it may make. No difference for me.
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Not sure if Helen already on Rezurock as she currently lives in Germany. If you are on Rezurock Helen what has your experience been on them?
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Many thanks. Just received the tablets now. Let us hope they work as well as the effects they have had in USA and rest of Europe.
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Hi all, just finished my first Ecp for this week and it also looks like my rezurock is waiting for me at one of the other Oxford hospitals. Trying to see if I can get a taxi arranged or something to bring it to where I currently am as not sure my transport will drive to other hospital. Keep fingers crossed for me. I am…
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Hi B, after the many jobs I had in Cornwall I needed a change I direction which is when I went back to college in Torquay to take up an IT course which is when I got into IT and while I was rhere I applied for this IT job in Truro.
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Hi, I get UC and PIP. The pip is because of my immobility and UC for the rest. Many people are entitled to both. In it I started off as a hardware engineer when computers really started coming out and used to repair printers, computers, mainframes etc as ICL being a British company got most of the government contracts so I…
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Hi B, Penryn quite a long way to go. However I can’t say much as my last job in Cornwall I used to Truro. I worked for ICL part of Fujitsu and was based at Cornwall county council offices in Truro as worked in IT. I was with them when I transferred to our Bristol offices as they were short of staff. I have got to admit I…
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Hi B, I guess Martin’s worked at the abbatoir on cooksland industrial estate in Bodmin. I worked for a while at TJBrent who were also based there as well. My sister also worked at TJBrent until she married the managing director. Now this sister lives in Exeter.
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hi B, carl used to own / run the butcher shop at the bottom of Fore street, then we he had the farm he passed this on to his son Stephen. When Carl died Stephen shut the shop and bought into the boat trips in Fowey. Harris butchers was always there at top of fore street. However Carl was often unethical and killed a lot of…
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Hi B, it is quite funny as you said we know the same places and a lot of the same people. It is sort of reminissing with someone you never met. However not much really seems to change in Cornwall. One think I used to hate you could never find a garage or supermarket after 10pm and when I moved to Clevedon years ago it…
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Carl had many farmer friends around that area I know there was a Morley Richard’s as well. I met a lot of them. He was as gold when he did not drink spirits he was the friendliest person ever he would often walk into a bar and buy everyone a drink and laugh and joke. Yes a real character. His first wife Jane left him due…
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Hi Beagle girl, The names all ring bells but I never reall a lot of them that well. My sister has friends Jessica Nicolls who married a Nathan Perkins who her parents owned the farm at the top of Bodmin hill, also an Alison Lee who lived on the Bodmin road a little bit further up. I know the reeds who were at Trevithick…
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Hi Beaglegirl, My grandparents spent a lot of thier life in London, but when they retired they followed my parents to Lostwithiel. Later years they split up and one moved to par and the other stayed in Lostwithiel even though they spent most of thier time together. I when younger had my first farm job close to you working…
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Hi Audrey, How is your daughter. I hope she is at home. I think the last thing I heard she was in hospital due to an infection or a virus. I hope she is doing better now and not having many gvhd symptoms. How are you generally as I know the past couple of years have really taken a toll with your son no longer with us and…
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Hi B, I can imagine how you feel wanting to stay inside and not want to go outside when you feel you have no pint. This is how I feel at the moment when I can hardly walk due to the tight skin. I feel like I am also going to fall down as I walk like peg leg. When I am ready I will again. I am fighting on. I used to spend…
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Hi Beaglegirl , I am with you. I hate cancers not just leaykemua, I hate hospitals or being in them as inpatient however they do help as much as they can to keep you health tosh. I too wish I could turn back the clock so I did it have this gvhd. However we cannot do that. I feel like I am living in a nightmare and hoping…
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Hi Beaglegirl, No my last wife was not from here. She was from Moscow in Russia, we met online. Unfortunately she was always depressed and never really worked as she could not really handle it. She used to shut herself away from the world and I thought I would be able to help her enjoy life, but she didn’t wish to change…
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Hi Beaglegirl, I guess we probably know a lot of the same people and I guess Martin did as well. I have kept a particularly low profile now with this gvhd as I don’t really want old friends contacting me in the state I am in, I want to be recovered a bit and in a fit state to drive down and see everyone again. I feel a…
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Hi Beaglegirl, I don’t h think your parents will know my mum she spent most of her time around Lostwithiel and Lanlivery areas. However she does live on the mount above Par in I believe over near the ECLP buildings above thier railway line. My sister is moving down this month from the reading area to help my mum as she has…
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Hi Michelleleeanne, Please ask your consultant about rezurock as 3 years on same meds and not much improvement it may help more.
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Hi Beaglegirl, I spent most of my child and teenage life in Lostwithiel and have many friends there but have been bad and not contacted them for many years. My mum remarried years ago and lived on a small holding Nr lanlivery with her ex husband and unfortunately he died and my mother then moved to Par. How long have you…
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Hi Michelleleane , so sorry you are still suffering with your mouth issues. How far are you out from sct now? As I said I got gvhd 6 months out and my first symptoms we’re really dry mouth due to lack of saliva and I ended up getting sores in my mouth due to lack of lubrication and it made it very difficult to consume food…
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Hi Helen, I hope your feet and wounds are improving more all the time. I believe your mobility was getting better I hope it still is. I believe you had discarded your wheelchair and frame and were managing the stairs more easily. Nothing much has changed for me except for the promise of rezurock but I am yet to see it yet.…
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Hi Beaglegirl, looking at the Kingswwod web site it is a very professionally run concern. Wood spring where I judged mainly was nothing ever like this. It was really a hobby of one family who never lived on site and was a part time hobby. They did not really through much resources at it at all. They I don’t believe even…
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Hi eagle girl, I am well out of touch o the BSJA jumping scene. I was very junior to this roll when I did it and I only think I did it for a couple of years. I was living in Clevedon at the time near Weston super mare and used to judge mainly at wood spring equestrian centre. Sorry I can’t remember what area that was in as…
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Hi, Yes had TB years ago with my first wife. Spent hours with her and the horses at an equine centre where they were stabled. Had I total three TB’s but were pets really. One full grown bought from my stepfather burt was never broken. A second was an ex racehorse and the third an undergrown youngster. Was ver friendly with…