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petervee
Comments
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Thanks for the update, sounds like you made a good impression, so well done. There is no doubt that the isolation and effects on the family are a major part of the transplant process and probably very hard to explain at the time because of the nature of the treatment. It's definitely a good idea to be able to let the…
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Hello Viki Good news to hear about the potential donors and cord match. Sounds like your medical team are doing their best. Pleased to hear too that you are feeling hopeful. Thanks for the update, keep in touch when you have the time and don't forget Anthony Nolan staff are there for you if you need any advice or a chat.…
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Steve Good luck on Wednesday, I'm sure your input will be well received. If there was one thing for me that had the biggest impact after transplant, I think it would be that feeling of total weakness leading to depression. I found it very hard to accept that I had walked into the hospital pre transplant feeling quite well…
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Hi EMcQ Welcome to the forum. Pleased to hear you had a good donor match. I think we all have our ups and downs but things do seem to get better after time. My transplant was in May 2012 from an unrelated donor. I don't have the same energy levels but try and make the most of what I have and keep active, I find walking…
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Hi Claire and welcome to the forum, your story is really interesting and pleased i'm that you are making a recovery now. You certainly have had a rough time but it's stories like yours that I think are helpful to others and offer hope for the future. You seem to be doing all the right things and I wish you well and hope…
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Hello and welcome to the forum. Sorry to hear about your daughter and hope the treatment she is now having will lead to a successful transplant. All of us on this forum have been affected in some way by transplants or are family members or carers. We try and help and support each other, so do please keep in touch and keep…
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Hi Lisa Welcome to the forum, I am one of the Community Champions and hope you will keep in touch and share some of your experiences. It's great to have a new member on board. I too was diagnosed with MDS early in 2012 and had an unrelated donor transplant in May 2012. Lots of ups and down along the way but generally…
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I have checked with my transplant team the query re nasal flu vaccine, for me they suggest I have no contact for a couple of days with my grandchild due to have the nasal spray today, this is just to be on the safe side, but they advised to avoid any bodily secretion contacts! (things like sickness and nappies).That will…
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Congratulations and best wishes to you both. Enjoy the celebration with your family. Peter
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Renate I met my donor last weeks too and have put a post on the Off Topic category. Like you say it was a special experience and for me it was something I wanted to do and was pleased I did it. Peter
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Steve That's really interesting about the flu vaccine given to children in the form of a nasal spray. I note the wording 'household'. I don't have any children now of school age but we are involved in helping out with child care and school pick ups a couple of days a week for one grandchild who started school in September.…
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Welcome from me too and I'm pleased that you have got in touch. It really is bad news to her about your sister, I hope she can make progress. It sounds like you have a lot you can share with us in this community and I look forward to you keeping in touch and maybe share your experiences. As Steve has already said, keep us…
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Hi On my first anniversary I was just getting over the influenza 3 virus and not feeling brilliant, we did share the occasion with family members and went out for a meal. A week later when fully recovered my wife and I went off to Cumbria to celebrate ourselves and have some chill out time together, three nights away felt…
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Met my donor yesterday together with his parents, family and a friend who accompanied him to London for the donor process. We met at an hotel , it was a very friendly and relaxed meeting and not a bit emotionally charged as my wife and I were expecting. We had been in touch by email for a few weeks and I think this helped…
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Hi everyone The Anthony Nolan Patient team recently sent me some information about post transplant vaccinations which you might find useful and which I will share with you, I was having a bit of an issue with the MMR vaccine. This is the info I received, 'During the transplant your own immune system is destroyed or…
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Good luck for next week I'm sure it will be quite an occasion. I travel to Wales next weekend to meet my donor for the first time and looking forward to it. Keep in touch and let us know how it went. Best wishes Peter
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Hi My wife and I appreciate your experience above,it brought back very similar memories which were more memorable to her than me! I can't have been very good company. For me after a few days of conditioning I didn't take much in at all. But for my wife nothing else mattered other than visiting, like you from early morning…
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George Good look, get to work on your transplant unit. Our local charity has a web/ Facebook page which I could maybe pass on to you via Amy if she is agreeable, it would give you an idea what it's about. I also agree with you that it does help to chat with patients going through similar experiences and that the clinic…
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Steve, Good luck for Saturday, sounds like a big challenge, you really going to cycle for 12 hours? All the best and thanks for your comment re Community Champion. Peter
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Hi Katherine Thanks for the ' welcome' comment. When I reached the 12 month mark I was given a letter from my transplant unit with the recommendations for immunisation post stem cell transplant and a copy was sent to the GP. In my case the vaccines were as follows, diphtheria, tetanus, polio, hepatitis B, pneumonia and…
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Hello Raymond and welcome, yours is indeed an interesting story and I am pleased that you appear to be doing so well after such a long time since transplant. I think we are all experiencing different challenges post transplant and it is helpful to hear a story like yours and hopefully it will give members some…
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Hello Katherine Welcome to the Community Forum (and Stephen). Sorry to hear you are unwell at the moment but it sounds like it is under control and hopefully you will be home soon. I had a stem cell transplant in May 2012 from an unrelated donor, I had an MDS blood disorder. When I was discharged a month after transplant I…
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Hello Kelly Yes I had my transplant in May 2012 with stem cells from an anonymous donor found on the Anthony Nolan Register. The transplant has been a complete success and I'm so grateful because it was the only cure in my case. It has been long recovery and there have been several hiccups along the way but they have been…
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Hi I had MDS diagnosed in early 2012. My twin sister was tested as a possible donor but like your dad she wasn't a match. I understand that behind the scenes a search was being made on the Anthony Nolan register as well. In my case after being told my sister was not a match within a couple of weeks I was told a donor had…
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Hi George In my case I was diagnosed at my local hospital with bone marrow failure and referred in days to the local cancer treatment centre, The Christie, Manchester. On the first visit I was given a 'Hotline card' with a 24 hour telephone contact number. My consultant made it quite clear that I should contact them with…
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Yesterday I was sat waiting for a check up at my transplant clinic following a short admission last week. I got an email from Anthony Nolan giving me the identity do my stem cell donor, I was extremely pleased at last to have a name and means of contact and knew that my identity was being passed to him. I'm very grateful…
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George Sorry to here you also under the weather. Saw a photo of you recently at the Family Day, you looked well. I had the para influenza3 in May, I was given antibiotics and an anti viral and it did ease off slowly, like you I was told it would run its course and docs not overly concerned. Think you will start to feel a…
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Hi Amy That should be really helpful. Wish it had been out this week, I was hit literally on Tuesday afternoon with a fever and temp of 38.8. We got onto The Christie Hotline and was admitted without delay, dosed with antibiotics and many tests. Discharged yesterday with course of antibiotics and an appointment for next…
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Hi Andy Sounds like you doing okay at the moment so good luck with the TBI. Can't help you with that I'm sorry, for my condition just had the chemo for 7 days pre transplant, and like you had the nausea. They will have a tablet for that and most other things. Make the most of your air conditioned surroundings whilst we all…
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Hi AMB I can only speak from my own experience at The Christie and say that for me everything was positive. We were given lots of information pre transplant and the HTU staff were extremely helpful and kind. It is a big thing and I can speak about it now 2 years on, my post transplant care, visits to clinic weekly, monthly…