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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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That's fantastic Una. I remember the day my neutrophil count started to climb and the feeling of relief that came with the news. I hope you had a great day and will be able to celebrate for many years to come with your husband. Steve
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Hi Lisa and welcome. Great to hear that you are still bouncing fit after all this time, which gives newbie transplantees like me hope for some longevity. Well done on taking part in the transplant games. I remarked to my wife that it is something I could apply for; if only there was a sport suitable for my aging body. I…
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Hi Viki, So sorry to hear of your daughters diagnosis, but I hope the treatment goes well and is successful. As Peter says, please keep us posted and do come here for help and support. I'm not sure if anyone so far has posted about someone so young, but I know you'll find sympathetic ears here when you need help or to get…
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Welcome Gecko. Sorry to hear that you have to face another loved one go through the same again but I truly hope things work out well for your sister. Please keep us updated and shout out on here for support of you need it. I haven't made it to one of the family days yet, but hope to if there is one in the midlands in the…
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Still no further with my vaccines, other than the flu jab which my consultant has asked me to arrange through my GP. I have done and me and the rest of my immediate family go on Friday for the jabs. A point to note regarding the flu jabs that my consultant made me aware of is that any children that are offered the nasal…
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That sounds like a great idea Peter. I wonder if there's anything similar in the East Midlands. Now that my fitness is about normal it would be good to get out and about with others who have had similar experiences and have a chat to them as we stroll. I'll have to do some digging and see what I can turn up, failing which…
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Hi Beanie, I'm surprised I haven't replied to this sooner. I also have skin GVHD and can relate directly to the tales of waking up with a snowstorm of skin covering the bed sheets or when shaking my head. It's like a bad case of dandruff all over my body!! Thankfully after just over a year of ECP combined with oral…
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I'm glad things went well Peter. I wrote to my donor for the first time recently via my transplant nurse. I haven't heard anything back yet but it's early days so I still hope they will write in return. I do realise some donors might not want to get in touch but from my point of view I wanted to let my donor know that I…
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It was a different experience for me as I was treated 60 miles from home. As we needed to try and keep things 'normal' for our sons, home life and routine stayed the same as it would if I'd been there as best it could. My wife and sons only came to see me on a Saturday morning, which made the visits special, and in between…
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Hi all, I did cycle for the 12 hours, though I do confess to some extended breaks as the day got later and I started to ache! In the end though I did complete 8 laps of the reservoir, so 56 miles in total, and combined with my other tem mates, we had a fantastic total of 44 laps (308 miles). We collected £136 on the day…
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My cycling marathon is on Saturday this week which is approaching rapidly. I've done a few training runs and plan to do a couple more before Saturday. There should be between 30-40 cyclists joining me at various points during the day so hopefully I won't be alone at any point. I hope you can make it Stephen and Katherine,…
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I'm about 20 months post transplant and queried my vaccinations with my consultant a month or so ago. She said we do need to arrange them, but wasn't in a particular rush to do so. I'm curious though. What has everyone had, when, and were you off immuno suppression when you did?
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I should say welcome Peter, but as you've been an active member for so long now I guess I should congratulate you on becoming a community champion instead. Steve
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Hi Stephen, As you probably know through Katherine and my posts on Facebook I've modified my plans now to do a 12 hour marathon round Pitsford reservoir in Northamptonshire. The logistics and safety aspects of the ride down the canal became quite limiting as I looked into it, so basing myself in a single location and doing…
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Raymond, it's fantastic to hear that you are a long term survivor, particularly as I am only 2 years out from being diagnosed with ALL, the same as you. I had my transplant in January 2013 and it sounds like it was much simpler than yours and no more complicated a procedure than a blood transfusion. Thankfully the…
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I only went to the Doctors because my symptoms sounded like diabetes. Fatigue, breathlessness dizziness, sweating, blurred vision. I'd never have thought I had something so serious.
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I set myself a goal early in my treatment to climb mount Snowdon in North Wales. This followed a visit from a friend a few weeks after my treatment started who had done the climb the weekend before. It gave me a goal to aim for at the end of my recovery. 9 months after my transplant and just over a year from being…
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Keep me posted on the model Katherine and if I can help I'd be happy to do so. I might be able to lay my hands on some floor plans which could help with the shape. The QE will be a tricky shape to build in LEGO with all the curves in the ward towers! We had various models built during the project but I don't know where…
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I'm about 18 months post transplant and some of my drugs have dropped off, but I'm still on the following. Ciclosporin - 50mg twice a day Aciclovir - 800mg twice a day Folic Acid - 5mg once a day Co-Trimoxazole 400mg twice a day on Mon, Wed and Fri Prednisolone - 5mg once a day I was on a programme of reducing my…
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Welcome to the forum Katherine and Stephen. I've been away for a few days so this is the first opportunity I've had to welcome you. Katherine, as you probably know I follow you on Twitter. You do fantastic work for publicising news and campaigns for Leukaemia and other forms of blood cancer and the BONE-shaker MARROW-thon…
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Hi Sally, Welcome to the forum. I'm glad things are going well for you. I'm only 18 months post transplant but also doing well as far as I can tell. I wondered have you contacted your donor at all through Anthony Nolan? I'm taking steps to contact mine, which I can do anonymously within 2 years post transplant, but after…
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Hi George, Mine wasn't so much a hotline, but I was told that if I had any issues to call the transplant unit directly and speak to the nursing staff. They would either advise me on what to do or contact the consultants for further advice. Thankfully it's not a facility I've had to use and I'm hoping I'm past the stage…
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Hi Kelly, I think Amy has probably answered your question and I hope a donor is soon found for your dad. I had Leukaemia and like your dad, my sister was tested but wasn't a match. Thankfully a donor was found within the three months of chemotherapy I had and I had my transplant in January 2013. Over 18 months later and…
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Hi Andy, Hopefully you've had your new cells and things are taking shape now. Hopefully your counts are now improving and the nausea has gone. Take care during your recovery an please keep us posted as things progress, as and when you feel up to it. Most of us here have experienced what you are now going through so we will…
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I'm having a similar dilemma. I'm 18 months post transplant and planning to have a few days travelling round the North of England with the family. Like you I've been healthy certainly for the past 12 months and don't restrict myself from 'normal' activities, only being on a low dose of immune suppression now. I'm thinking…
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That's an interesting article Amy, and sounds just like I experienced, particularly the bit about having trouble finding the right word. I have to say I don't seem to be too bad now that my treatment has finished but during treatment I struggled with my memory. I was terrible at remembering names! I was having my…
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Hi there. I had a transplant about 18 months ago as part of my treatment against ALL. I got into remission very early in my treatment but my best chance of long term survival was a BMT which I had in January last year as I was in a high risk category for relapse. As far as being the same person after transplant as before…
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Hi George. Good to hear that you are progressing well and are nearing the magic 100 day mark. I remember I felt particularly weary at about the same stage as you are now at, so I don't think it's unusual. Take your time and things will get better. Even now, 15 months post transplant I get weary easily. I probably started…
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I was talking to a friend the other night who has been suffering from fits and blackouts and we were discussing how stress and fatigue seems to give illnesses an opportunity to strike and affect us. He put his episodes down to a particularly stressful time in his life and I think the same can be said of my own illness.…
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Hi Wen, Yews a BMT would be a bit extreme to get rid of hayfever, as annoying as it is. However it's a side effect/benefit that I'm pleased to have if it has indeed gone. I used to hate spring time and dreded the sight of blossom on the trees knowing that my eyes would soon be itching and my nose streaming. If this year is…