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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Michelle and welcome to the forum and to the Online Community Champion team!! I've been around the forum for about 6 years now and an Online Community Champion for about 5 years (I think), so it's good to have you on board. I'm glad there's an abbreviation for your condition as that is defintely a mouthful! I had a…
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Hi Chris, I'm 7 years post transplant and am also on penicillin. Like you I've been told it's for the rest of my life and is primarily to prevent me from getting chest infections as I understand it. I did have a spell of about 12 months where I stopped taking it (largely due to laziness) but it was a dose of pneumonia that…
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Hi Mel and thanks for the update. The Dieseldrinker is just something that stuck with me! It's easy at the stage you're at to think of all the things that can happen, but in reality many of them may not. There's no doubt there will be good days and bad, and many ups and downs along the way, but I found it easiest to take…
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Hi Mel, and welcome to the forum. You and your husband have already been through so much by the sound of it, so hopefully your husbands transplant will resolve his illness and allow you both to lead normal lives. Going into a transplant is nerve wracking enough without the added complications of everything that is going on…
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Hi Rachel, it's good to hear from you. I've heard others say they have been nervous about attending hospital for appointments during these times, but when they have, the experience has actually turned out better than they expected. I think hospitals these days are super hot on cleanliness and infection control and from…
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Hi Sue, it's good to hear from you. Like you I've had various letters and phone texts telling me as an 'extremely clinically vulnerable person' that I need to shield. I think the first communications came as the Coronavirus crisis was just beginning and was less than two weeks after my annual checkup, when I'd asked my…
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Hi Cath, Thanks for posting an update and I'm really pleased to hear that Ron is doing well. Unfortunately it is a very slow process and can be very frustrating at times, but it's a case of focusing on the outcome and keep taking small steps along the way. It's good that he's getting his appetite back and can start to…
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Hi Jane and Rob, I also had high Ferritin levels post transplant, though they were probably about half the level that Rob had. Mine were around 1600 if I remember right and my consultant targeted getting them down to around 800. As Rob says it is due to the high number of transfusions we have during transplant, which…
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Hi Jane, see the link below to Colins post about his experience. I hope this helps. https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum#/discussion/466/aml-relapse-after-4-5-years Regards, Steve
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Hi there, I'm so sorry to hear that your daughter has had this awful news and can only begin to imagine how devastating it is to you all. I do know that we've had several members on the forum though that have gone through relapse, have had further chemotherapy, and have had DLI's or second transplants which have been…
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Hi again Chris, I had a very similar experience to you with collapsing at one of my early clinic appointments. I was struggling to walk very far at the time and one of the nurses had sat me in a weighing chair to record my weight. The next thing I remember I came round laid on the clinic floor surrounded by medical staff…
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Hi Julie, It's hard to imagine one so young going through a transplant. As you say it's probably unlikely that Henry will remember much about it all in years to come, or understand what is happening at the moment, so I guess the main strain is on you as parents. So as Hayley has highlighted you mustn't forget about your…
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Hi there Chris. 40 days is still very early in your transplant and at that point I the only way I could get up the stairs was to crawl up on my hands and knees. It took everything out of me and I couldn’t walk far on the level either without getting out of breath and my legs feeling weak. It takes longer than you think to…
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Hi there and welcome to the forum. I'm a transplant patient too, though over 7 years ago, and am a community champion on the forum. Nausea and weight loss is normal post transplant and I guess for most of us seems to last a painfully long time. I remember that I was still struggling to eat properly and keep things down for…
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Hi there and welcome to the forum. I'm Steve, one of the online community champions and was a transplant recipient seven years ago. I'm sorry to hear that your husband has had some cells show up in his bone marrow biopsy, which I'm sure is disappointing and distressing to you both. I'm not sure what the measurement of 0.2…
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Hi there, I'm sorry to hear that your son is struggling with nausea, it felt like it went on forever for me too. What eventually conquered it for me was being put on steroids (Prednisolone) when my GvHD started. I was put on the highest dose they could which had a slight effect on my GvHD but gave me my appetite back which…
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Hi Patsy, I'm one of the online community champions and a transplant patient myself 7 years ago for ALL. At 130 days you are still fairly early in your recovery and it takes a while for your body to get its balance back. I look at photos of myself 9 months after my transplant and I was still very thin compared the my…
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Hi Tallgal, Thanks for your update, and it's good to hear that your mums treatment seems to have worked. 99% chimerism sounds really good and I hope it stays that way. Hopefully the DLI top ups will help get it that extra 1% though I understand that not everyone gets to 100%. It certainly sounds positive news and whilst…
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Morning Colin, Welcome to the forum, I'm one of the online community champions and a transplant patient for ALL having being diagnosed in 2012 like you. Your post is really insightful as I guess it highlights a concern we all have that our illness might come back. I'm not sure what the statistics are but I don't think it's…
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Hi Georgie, There are quite a few patients on the forum that have had DLI's at various times so I'm sure one of them will be able to respond with their experience, though as we know, everyone responds differently. As I understand it a DLI is usually given when your chimerism (percentage of donor cells) is lower than…
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Hi again and thanks for the update. Your son truly has my sympathies as the daily routine of numerous mouthwashes and surviving on milkshakes, which were about the only thing I could tolerate, is something I remember very well. I can't remember whether you'd said the mouth pain was due to GvHD or an infection. In my case…
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Hi there, Thanks for the update, it sounds like you're son is having quite a roller coaster ride. I hope it helps if I say it's quite common and we all have ups and downs to some degree, some more than others. I have 18 year old twin boys so I can relate to their lives and the impact your sons condition must be impacting…
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Hi Clare, I remember it being an anxious time waiting to hear whether there was a donor for me but other than the fact that the hospital were looking for a donor I didn't get much feedback at all on progress. I was told that a donor had been found about 8 weeks before my transplant and only 11 weeks after I'd first been…
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Hi Rob, I hope you had a good Christmas and weren’t too itchy. I can’t say I’ve had any problems with shingles that I’m aware of. I had skin GvHD and I do still suffer from itchy skin occasionally, and the back of my thighs seems to get quite spotty at times but it doesn’t sound anything like you’re suffering from.…
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Hi there and welcome to the forum. I’m one of the community champions here and a SCT patient myself. I don’t think there’s any reason that your sister should need to be kept away from her children and every reason that they should have normal contact with her. It will help them all get through it. It’s right that you…
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Hi Rob, thanks for the update and I’m glad to hear that the exercise seem to have done the trick. I know I lost a lot of muscle during my time in hospital and it took a long time to get some strength back in them. Thankfully it didn’t affect my joints. I never had any kind of physiotherapy during my recovery and recovering…
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Hi Rob, It's been a while since you updated and I wondered if the MRI had shown anything up or whether there's been any improvement? Hopefully things have got better rather than worse. All the best, Steve
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Hi Dannii, yes the cleaning of the blood that you describe does sound like ECP. ECP is the short term for Extra-Corporeal Photophoresis, which effectively means it is the treatment of blood outside the body. I guess the simplest way to think of it is similar to dialysis where the patient is connected to a machine which…
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Hi there Dannii. Thanks for the update. I'm not sure of the significance of the CD3 cells but the fact that the chimerism is 100% donor cells sounds like its worked to me. It means that his own system has been fully replaced by that of the donor, you. It sounds like a good sign. I was 100% too after a few months and as far…
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Hi Louise, I haven’t used travel insurance for a long haul holiday to date, but did use travel insurance for a trip of a few days to Europe. For that I used Staysure and there was something in their condition# about pre existing conditions for which I’d had medical treatment. However they would only not provide cover if…