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petervee
Comments
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Hi Tom Good news and pleased to hear that you are making progress. You certainly sound positive, do rest when you feel you need it and try not to overdo things. Don't worry if you have a bad day it's perfectly normal. Try also to be vigilant about hand cleanliness it will help to avoid any risk of catching a bug. I think…
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Hi Sarah Pleased to hear that you have made good progress since transplant and that you had a good match in your twin brother. I find your post really interesting and it took me back to my first consultation when MDS was diagnosed and the words of my consultant, 'Peter in your case there is only one cure and that is a stem…
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Hi Welcome to the forum and I hope you find getting in touch helpful. There are many members who have a similar condition to you so I hope they will share their experiences. You are quite right when you say you have had a shock with the news you received and that the future appears scary. I had a stem cell transplant 4…
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Hi Sam Very pleased to hear of your dad's positive progress and it must be encouraging to be thinking about returning to work too. I'm sure that will be a big step forward for him. Tiredness or fatigue is what most of us experience so I think it's normal. Next week is the fourth anniversary of my successful transplant and…
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Hi Nigel Welcome to the forum, I'm sure you will find it helpful. Sorry to hear about your sister's experience and now your diagnosis of MDS. However it does sound that things are being addressed and I'm sure that the SCT will be a success for you. Transplant is a big step and I'm sure you will have been fully briefed. It…
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Hi Welcome to the forum and thanks for sharing your experience with us. It's a great story and I'm pleased that you have made good progress to date. I'm sure your story will be really helpful for other people facing transplant and maybe those in their early days post transplant. I'm sure all of us who have gone through…
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Hi I definitely remember having very flaky skin for months following transplant, certainly at the point your father in law is ar now. Even now almost 4 years on I still have dry skin mainly on my legs and arms but nothing like the first few months post transplant. There are lots of remedies, for me Diprobase was a great…
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Hi Tom Welcome to the forum, I'm glad that you have had a look around the site and you are finding it helpful. We are all here to listen and to support each other if we can by sharing our experiences. Please if you have any questions get in touch. I had my transplant in May 2012 having been diagnosed with hypoplastic MDS…
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Hi Becky Good to hear that you also find the forum helpful. It has been very useful to hear other members experiences. I have certainly found it helpful and supportive. Pre and post transplant are difficult times so if we can help each other we should. If there are any new members out there who want to get in touch then…
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Hi Michelle Sorry to hear this latest news but hopefully they can get on and treat the problem now and things will improve. This is exactly what happened to me about 3 months post transplant, I felt very poorly and with similar symptoms but an initial X-ray didn't show any problem, it took a second X-ray about 3 days later…
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Hi Michelle Sorry to hear about your father in law suffering with a cold/virus. Good advice above from Steve and Chiara, don't let things get worse do keep on at the transplant team. It's a real shame he can't be offered some relief. I'm approaching 4 years in May and I still worry if I get a cold or flu like symptoms. I…
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Hi Sam Thanks for the above comment, yes my donor was really pleased to meet up. It meant so much to him and indeed all his family who we so pleased to meet. You know he thanked me and still does for giving him the opportunity to do something so incredible. Even now he says he will always be there for me if I ever needed…
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Hi Sam Thanks for the updates, good news about your dad being home especially at this time of year. Your dad is bound to feel rough and will do for some time, patience is the key word, as for eating I found it good to eat little and more often than the normal meal times. It's a good time of the year to indulge and eat lots…
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Hi You can send your son's donor a thank you letter anytime after transplant. There are just a couple of conditions for example you and your son's identity must be anonymous for a period of 2 years, and you should not include any information that may identify you or where you live. The letter/card has to go through Anthony…
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Hi Sam This is good news you are sharing, to hear your dad has had his transplant and with a good match too. These are really very early days and we have all felt the way he feels at the moment. He probably wont feel like doing anything and it is enough to just catch up on rest. Its great that you can keep up the visits,…
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Hi Steve It's always good to read your replies and comments. You have a better memory than me so your comments remind me of things I've forgotten. I too had porridge every day for months, it was something I could manage with ease and had a variety of toppings, honey and maple syrup. I also went through tubs and tins of…
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Hi Sorry to hear your father in law is struggling at the moment, just been having a chat with my wife who looked after me post transplant and whose memory of those first few weeks post transplant are better. We both think that it is early days yet. We tried to have a structured day, I remember just getting up showered and…
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Hi Sam Well done you, you should rightly feel proud. I met my donor this time last year and he kept thanking me for giving him an amazing experience, he was so pleased to have been able to help. That young man saved my life, I hope you get the same opportunity one day. I hope all is going well for your dad, don't worry…
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Hi Sorry to hear about that, must be a real disappointment but at least you are getting treatment and in the right place. Shouldn't be long before you are looking forward to going home again. Good news about the GvHD, I think we all probably experienced diarrhoea at some point, I remember when I had a high temperature and…
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Hi Josie Just want to wish you well and to say good luck for next Wednesday. Best wishes, Peter.
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Hi and welcome to the forum. I'm sure you will find getting in touch helpful. I had a stem cell transplant 3 years ago now when I was 63 years old. I was working and doing a job I really enjoyed, self employed and just working 3 days a week. I was reasonably fit, with a wife and grown up family. We enjoyed a full social…
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Hi Becky It sounds like you are making some good plans already. Your transplant staff should be able to help with what you need to take in with you. I had my own room and was told that I could personalise it with anything reasonable eg photos ,new books, even my own bedding if I wanted! I knew I was going to be in…
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Hi That is good news to be going home. I used to have the steroid cream and it really help me with mild GVHD. When I got home we found the best way get back into eating was to eat little and often, doing away with the usual meal times. That way I eventually got my appetite back. I also found I had a taste for different…
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Hi Rob Good news and I'm sure the biopsy will be okay. In the meantime try to just focus on getting yourself stronger each day. Good luck. Peter
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Hi Teejay and welcome to the forum. It sounds like you are doing well if the docs are thinking of sending you home next week. I would say the feelings you have at the moment are perfectly normal. Fatigue is probably the thing that affects us mostly. Anthony Nolan has lots of information on line and in print on the subject,…
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Hi Rob I had an unrelated donor transplant in May 2012 for hypoplastic MDS (at The Christie). I'm pleased to hear you have been making good progress. I have just had a look at my old clinic notes for the same time post transplant that you are at. I was still on weekly clinic visits, and my counts were similar to you. I was…
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Hello Sam Welcome to the forum and thanks for sharing your experience with us. It sounds that you are doing all the right things and that your dad has some wonderful support from his family. That is really important for him so he can concentrate on getting better. I had a transplant some 3 years ago now when I had bone…
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Hello Poppy It's really difficult to be vigilant all the time about hygiene but the basic rules of hand washing, gelling and being methodical about using cleansing wipes on everything from door handles to remote controls etc. In fact everything that is shared. There is just my wife and I at home so it was easier but with…
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Hi Steve Great story that you share with us, I've been following Rik's successes on Facebook and AN he has done really well, praise also to the people in and around Leicester who have given their support. Best wishes Peter
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Hello and welcome to the forum. It's good to hear that you are making progress and you sound positive, there are going to be ups and downs but as you get stronger you will also feel better. I agree with you about Anthony Nolan, they make all this possible for us. I had my transplant just over 3 years ago, I got in touch…