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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Beaglegirl, I'm sorry to hear your news. I can't help you with any advice regarding the source of the Leukaemia unfortunately and I'd be nervous about taking diagnosis suggestions from Facebook or Google, hence why I wouldn't try and suggest how it has arisen myself. For me, the best source of information would be your…
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Hi Dave, I'm Steve, one of the online community champions here on the forum and had a transplant for ALL in 2013. I can relate to what you're describing and I think most transplant patients will. The effect of a transplant is long lasting and takes an inordinate amount of time to recover from. My transplant floored me too…
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Hi Rich, I don't know about anyone else's experiences but I didn't have any issues when I had my childhood vaccinations. I don't even remember having a sore arm at any point. I wonder whether, even despite all that we've been through we still have any immunity from the original vaccinations and that they are given as a…
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Hi Beaglegirl, I don't know what the statistics are for the success of treatment and transplants for a relapse so late after a first transplant, but statitistics probably do exist. Having said that I try not to take any notice of statistics as everyone is unique. I guess the phrase in the letter is no different to what the…
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Hi Manders, you may want to check the requirement for the MMR vaccination with your hubbys medical team as transplant patients don't normally have live vaccines. I've just checked my vaccination records and I didn't have the MMR as part of my re-vaccination. I was given a vaccination sheet by my consultant which is what my…
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Hi Moomee, thanks for the update. I'm glad the scan was clear and no sign of infection. Hopefully that has helped lift your husbands spirits a little and it will help him feel a bit more positive going into the second transplant. Take care and please keep us updated. Best wishes, Steve
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Hi Lynne, hang in there. I know it's hard but things can always get better. A transplant is an incredibly tough process to go through on its own and you have added challenges on top of that with your Osteoporosis. It can be very easy to give up but that is when you lose your fight. We're here to help keep you going and…
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Hi Lynne, I'm one of the online community champions and a transplant patient myself. I'm sorry to hear that you're going through a tough time and echo Claires comment that it's good that you've contacted the team through the forum. I liken the forum to the waiting area at clinic post transplant where you can talk to other…
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Hi BillyBobby, taking it one day at a time is the best way to handle it to be honest. Try not to think of the things that might happen and only deal with things if they come up. It's quite possible that all the things you get warned about or hear about might not happen, such as GvHD etc, as everybody's experience of…
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Hi Moomee, you've really been through it by the sound of it. I hope your husband is a bit better, though it sounds like he's got a long way to go and hopefully the second transplant will work. There are several forum members who have had second transplants as a result of graft failure early in their recovery. It seems to…
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Hi Hollintree, I was wondering how your mum is? Has the infection in her lungs cleared at all? I hope she's doing ok and she's improving and able to return to her recovery. Best wishes, Steve
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Hi Beaglegirl, I'm really sorry to hear of your husbands relapse. I'm one of the community champions here on the forum and had a stem cell transplant 9 years ago for ALL. I guess the situation that you and your husband find yourselves in is one of our greatest fears and I for one live every day wondering at the back of my…
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Hi Hollintree, welcome to the forum. I'm one of the online community champions and had a stem cell transplant in 2013 and also suffered from GvHD after my transplant. In my case the GvHD affected my skin mainly and it did take a long time to get over. I was on steroids initially which helped a little, then I was referred…
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Hi Sarah, Thanks for the update on your appointment. It sounds like it was quite positive and perhaps the news that you don't need a transplant yet is good news. I know it means regular blood tests to keep an eye on things, and if something changes at least they are prepared top progress to transplant. You said previously…
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Hi Sarah, I hope all goes well with your pre-transplant appointment on Thursday. I seem to remember from my own pre-transplant appointment I went through a number of tests to make sure I was fit for the transplant. The consultants also described the process of the transplant with some indications of what to expect and what…
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Hi Alyssary, welcome to the forum. I'm one of the online community champions here and a stem cell transplant patient myself, having had a transplant for ALL in 2013. I'm sorry to hear about your husbands predicament, which I'm sure is worrying for you both. It's not something I have direct experience of as I was in…
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Hi Meercat, thanks for your updates. It's good to hear that you've got off lightly by the sound of it and your experience of the efficiency of the anti-viral process will hopefully come as reassuring to many reading this. From your post and from from speaking to people I know who've had Covid post vaccine, it does sound…
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Hi Sputnik. It's some time (9 years) since I had my transplant which was at Leicester. There was a wifi service which you needed to subscribe to and seemed to be fairly reliable. I wasn't gaming, but for streaming music and video it was fine. I also used skype and facetime to keep in touch with friends and family and it…
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Hi Meerkat, that's really encouraging. I received a PCR test in the post some time ago but there was no explanation in the package as to why, so I put two and two together and linked it to a letter that I'd had previously about the PCR test and anti-viral treatments. I've been doing LFT's systematically on a weekly basis…
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Hi Marion, you're right I've been back at work some time. I had my transplant just over 9 years ago and returned to work fully probably 18 months afterwards, having worked from home on light duties from about 6 months after my transplant. With Covid over the past couple of years I returned to home working whilst the advice…
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Hi Mel, I must admit I had to google EPO treatment as I hadn't heard of it and haven't any experience myself. From what I can see its a course of injections to stimulate the bone marrow to produce red blood cells which will hopefully help his anaemia. As with any treatment there is always a long list of possible side…
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Hi again Sue, I'm glad to hear that you are doing OK. As far as platelets are concerned I had to have several transfusions of full blood and platelets during the chemo leading up to my transplant. The chemo will affect your bone marrow and prior to your transplant it will be wiped out completely. This is so that the new…
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Hi Sue, welcome to the forum and thanks for postin. I'm one of the online community champions here and I had a SCT for ALL over 9 years ago. I'm sorry to hear of your diagnosis but it's good to hear that you are in remission. I guess it's a cse of waiting to see if a match can be found and i can understand your anxiety. My…
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Hi Moomee, Like Michelle I'm one of the online community champions here and am a stem cell transplantee myself, though my transplant was much more straight forward than Michelle's and your husband. I'm sorry to hear about the problems your husband is having, but hopefully Michelle's posts have given you some hope that…
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Hi Kal, I've just checked my vaccination records and I started havuing mine in 2015, which was 2 years after my transplant. I hade GvHD after my transplant so I was immunosupressed for a long time, and I ssupect that I couldn't start my vaccinations until I was off the Ciclosporin. As far as work is concerned, is working…
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Hi Kal, wow thats a dramatic turn during your transplant! I hope you're fully recovered from the virus now with no lasting effects. It must have been hard not being able to be with your children when you were discharged, but under the circumstances it was probably a sensible precaution. It's now some time since my…
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Hi Sputnik and thanks for posting, I'm one of the online community champions. I can understand your frustration at the delays, particularly if your partners conditions appears to be deteriorating. I'm assuming she's had chemotherapy treatment already to get her to the stage where she can proceed with the transplant? For me…
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It's worth noting that transplants can affect men in a similar way too. I had a discussion with my consultant about a lack of libido after my transplant and things not working the same way as they did (I won't expand further but I'm sure you know what I mean!). My consultant told me that I'd gone through the male…
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Hi Sarah, like Michelle I didn't have a dental checkup immediately before my treatment and hadn't had on for some time beforehand. In reality I didn't have time as I was admitted to start chemotherapy within a week of being diagnosed, but I wasn't asked about it at any point. I think the reason will be because you will…
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Hi Sarah and welcome to the forum. Like Michelle I'm an online community champion here and had a transplant in 2013 for Leukaemia. I'm sorry to hear about your condition and that you are facing a transplant. We're here to support you through that and there are many transplant patients and relatives here on the forum that…