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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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That's good news Paul, I hope everything goes smoothly. Please stay in touch through here and let us know how you're getting on. All the best, Steve
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Hi Tom and welcome to the group. I hope you find the posts here of use and I'm sure if you've read some of the past posts you'll have noticed we all have varying experiences of transplants, some good, some bad. That's a product of the fact that we are all unique, so we all react to the process differently. The things that…
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Good luck with your meeting today Paul, I hope you get good advice from your medical team and they are able to answer all of your questions from a medical perspective. I'm sure you will have more questions about the patients experience so please come back and ask us any further questions you need to help you make the…
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Hi Paul, I guess from your perspective it's a really difficult decision to make and one that shouldn't be taken lightly. It will be all the more difficult to make whilst you are currently healthy, knowing that it will make you unwell for a period with a long recovery afterwards. I'm 50 this year and had my SCT when I was…
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Hi there and welcome to the forum. I know we have quite a few parents of children who've had transplants so hopefully someone will respond soon. How is your son getting on? Having gone through the process myself in my late 40's I can't imagine how bewildering it is to a youngster. All the best, Steve
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Hi Michelle, I know it probably feels tough for him to go back into hospital but it is possibly the best place for him as they can keep a closer eye on him and give him the round the clock care he needs, which may be easier on your mother in law. I went through a spell when I was really weak, largely because I wasn't…
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Hi Krissy, Thanks for your good wishes. It was the third anniversary of my transplant on Sunday and the Anthony Nolan Patients and Families team kindly featured me on their Facebook page last week as the milestone for January. I'm glad your son is doing well and it's great that he is regaining weight, which was a big…
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Hi Michelle, I've had coughs and colds at times during my recovery and they do take a long time to shake off. I'm assuming that your father in laws medical team are happy that he isn't at risk as it sounds like he's at home. Keep a close eye on him and if in any doubt get in touch with his transplant team. My only…
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Hi Krissy, I wrote to my donor about 6 months after my transplant, by which time I felt my recovery had made good progress. I felt it was important to let them know I was well and to thank them for what they'd done, though thank you doesn't seem adequate at all. Unlike Peter I didn't hear back from my donor, which may…
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Hi Billie, I've just had a read through this and it's really good. It should be very useful for friends and relatives supporting patients going through the process and is useful to help them understand what the patients is going through. The point about patients not always wanting to see of talk to people is an important…
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That's great that your dad is home and starting to pick up a little Sam. Coming home after the transplant is a big boost to patients but the recovery afterwards can feel very slow so hopefully you can keep his spirits up. It's good that he's managing to eat and great that he's regaining some weight. That was a big battle…
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Thanks Peter, I'm keeping very well thanks and feel as good as I did before all of this began, though my memory does laps at times - my chemo brain!! I'm glad the days of feeling cold are over but wasn't sure whether that was down to my skin GvHD or whether it is something that is common to SCT patients generally, perhaps…
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Hi Sam, That's great news that your dad has had his transplant. I guess in these early days he is not feeling too well at all and I remember how tough those early days are. He will hopefully feel better and raise his spirits when he sees his counts start to rise which is a sign that the new cells are engrafting. I know it…
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Sam, This sounds like a great initiative, well done. Anything that can either raise funds for the valuable work Anthony Nolan does, or raise awareness of their work or blood cancer gets my seal of approval. I'm sure the Anthony Nolan events team can help publicise your event, perhaps on their web page, in newsletters or on…
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Hi Teejay, It sounds like you're making good progress and you seem to be going through the same routine that I did in terms of visits to hospital. It's great that you're getting some appetite back which will help you regain your strength. If you can combine that with a small amount of exercise and build yourself up it will…
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Michelle, I remember these feelings well and was probably very much the same as your father-in-law at about the same stage. Drinking and eating was a struggle and I too was inclined to stay in bed and had no motivation to get up and about. In hindsight that probably extended my recovery as it took longer to regain my…
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Hii there and welcome to the forum. I'm not sure we've had anyone yet with a child so young, but hopefully some of our members may have older children that are active duiring transplant with similar challenges, as I'm sure the treatment regimes are just as frustrating for them as they want to be up and about. Perhaps…
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Josie, I saw your message yesterday and honestly didn't know what to write at the time. I still don't know what to say but felt I had to say something. Clearly I'm upset and so sorry to hear your news and my heart goes out to you and your family. I'll pray that your medical team are able to find a solution and that things…
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Hi there and welcome to the forum. The prospect of a transplant is very daunting and I wish there'd be a resource like this when I had mine almost three years ago. I'm sure you'll find it useful and you are more than welcome to pick the brains of those of us who have gone through the process and come out the other side or…
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Hi Becky, I had a distance from home to my transplant centre too but not to the extent that yours is. I live in Northampton and was treated in Leicester so it was a journey up the motorway of about 30 miles each way for us. At first I was apprehensive as it meant I was unable to see my wife and boys each day, but in the…
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Hi Josie, Fingers crossed for positive news on Wednesday. I hope it can be put down to the medication and that your bone marrow recovers and your counts start to rise again. Sending positive thoughts to you. Steve
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That's good news Rob and sounds reassuring. Fingers crossed that the biopsy shows everything is going well and that the graft has taken. Relax and continue with your recovery now All the best, Steve
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Hi Teejay and welcome. It will hopefully comfort you to know that the things you are going through are normal and that it will get better as Peter has said. It does take time though so you do have to be patient and try not to get frustrated. At a similar stage to you I was also fatigued, sick and feeling very worse for…
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Hi Rob, I've heard of counts taking a dip so I hope it's nothing to worry about for you. Have you had an infection that might account for the reduced levels at all? As you say, coming off Septrin might also lead to the change. Good luck with the next blood test and I hope things are picking up, but please let us know back…
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I was supposed to have had a lung function test before my transplant along with the various other tests I had, but for some reason the lung function test never got done. I have had them since though having suffered GvHD, which thankfully opnly affected my skin. The lung function test was done as a matter of routine each…
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Hi Becky, I also found it useful writing a blog during my treatment and transplant. It gave me a chance to share what I was going through with my friends, colleagues and relatives without having direct contact. It also kept me occupied during my time in hospital. Do keep the blog going as it's a great way of keeping people…
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Hi Sam and thanks for sharing your story. I think it's a story that is echoed similarly in all families affected by blood cancers and similar illnesses. The support that can be gained within the family unit is immense and persnally I think has a great bearing on the ultimate success of treatment. It's easier to recover…
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Good luck Becky, I hope all goes well with the treatment. Steve
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I've just seen the final total number of potential donors signed up during this campaign. It's an amazing 2078 new people registered with Anthony Nolan! Lets hope there are many amongst that number who can help more people like us. Steve
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Hi there, It's good to hear from someone of a similar age to me with ALL. I was about 46 when I was diagnosed so probably quite a bit outside the normal age bracket as it is more common in children. Like you I was considers high risk of relapsing so a stem cell transplant was always on the cards. It's 3 years in January…