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Dieseldrinker62

Online Community Champion - Transplant for ALL in January 2013

About

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Dieseldrinker62
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Comments

  • Hi Laulau, from what I've seen in the media it seems to be early days as far as booster vaccinations are concerned and I guess like the initial vaccinations it will be a progressive process where we will be contacted when they are ready for us to ha…
  • Hi again Lucy, Just picking up on the useful tips that people have been giving regarding relief from the itching. I found it really difficult to get to sleep when my skin was dry and itchy, so most nights I had a long soak in the bath with some E…
  • Hi Eliza and thanks for posting. I'm one of the online community champions here on the forum and a transplant patient myself. I'm sorry to hear that your husbands chimerism has dropped and can appreciate how worrying that must be for you both. I …
  • Hi Lucy, Like Michelle I’m one of the Online Community Champions and like her I also suffered from skin GvHD after my transplant. As Michelle says it can present itself differently in different patients, so as Tom has suggested it’s best to speak…
  • Morning Clare, It's good to have a little freedom back at last but as someone who had my transplant a long time ago now I guess I'm probably a little more relaxed about the easing of restrictions. That said, I am still nervous about being exposed…
  • Hi Mel, you know we’re always here to bounce concerns off, as are the Anthony Nolan team who can offer you direct support as a carer if you need it. As transplant recipients, we’ve see it from the other side and know how your husband probably feels.…
  • Hi Steve, I was wondering whether your levels had improved at all since the last time you'd posted and whether it was a temporary blip or things are unchanged. I hope things have picked up. Good to hear that the GvHD has improved and hopefully…
  • Hi Mel, Thanks for the update and I'm sorry to hear that your hubby is still struggling with recovery. It's good that he sounds like he's still staying positive despite it all and perhaps seeing people that are worse off than him helps with that.…
  • Hi Laulau, Sorry, I missed this update somehow. That's brilliant news and must be such a relief. How are you feeling generally, everything OK? Steve
  • Good morning Steve, I'm also called Steve and am one of the Community Champions here on the forum. I'm a transplant patient myself and had my transplant in January 2013. Like you I also had skin GvHD which was treated successfully with ECP. It so…
  • Hi Jess, I know it's hard to ignore thoughts of complications and relapse, but try not to think about it if you can. I don't know what the statistics are but relapse from transplant certainly doesn't affect everybody, and the majority of people g…
  • Hi Jess, Your consultant will have to explain all the things that could potentially happen so that you understand the risks and the potential side effects that you might encounter as you go through the process, but it's really important to rememb…
  • Hi there and thanks for your post. My name is Steve and I'm one of the Online Community Champions on the forum and had a transplant myself in 2013 for ALL. I'm sorry to hear that you've relapsed and are now facing the propects of a transplant. It…
  • Hi Gail, Coincidentally as one of the Anthony Nolan patient panel I reviewed a new guidance leaflet being developed by Anthony Nolan yesterday, which covers the subject of post transplant vaccinations. You are right that live vaccines are general…
  • Morning all, It's good to hear that many of us are getting or have had our second vaccines. It seems tat there are still side effects with some people but they are generally short lived. I had a very mild headache in the afternoon follwing my ear…
  • Hi all, As an update, I had my second vaccination a couple of days ago; Astra Zeneca again. Next to no side effects this time I’m pleased to say. I don’t have a sore arm at all and haven’t had a headache this time as I did with the first dose. …
  • Hi Buffy and welcome to the forum. Like Michelle I'm a community champion here and a transplant patient myself for ALL. I'm sorry to hear that there is still some residual disease after your brothers transplant which I'm sure must be very worrying f…
  • Hi Laulau, I'm quite a bit further on in my post transplant age than many on here, but like most people I'm treating the lifting of shielding to be a cautious release of a bit more freedom, but even then will continue to be diligent and very careful…
  • Hi Laulau, I sympathise with you not being able to meet up with others. I know just how you feel as I'm sure many others do, but it's wise to be cautious. Hopefully the relaxation of shielding will help you see people, but I'm sure you don't need me…
  • Hi Laulau, I'm able to access my vaccination records online via my GP so I can confirm what I had. Diptheria, parts 1, 2 and 3 Tetanus, parts 1, 2 and 3 Perissus, parts 1, 2 and 3 Polio, parts 1, 2 and 3 HIB, parts 1, 2 and 3 Pneumococcal…
  • Hi Laulau, To be honest I can't remember how long I was on the steroids, but like you I was on the highest dose of Prednisolone they could give to start with, which I think was 30mg twice a day. From memory they did try to wean me off them quite …
  • Hi Laulau. I had difficulty putting weight on after my transplant and had a very poor appetite at first so was struggling to eat. What kicked it off for me was being put on steroids for my GvHD about 3 months after my transplant. They made me fee…
  • Hi Laulau, glad you managed to get confirmation from your consultant. It shows how important it is to keep an eye on your body and raise any concerns with your medical team. Most times it's probably nothing drastic, but it's important that they k…
  • Hi Laulau, it's not something I've experienced. What size are the patches and are they confirned to a particular area of the skin or all over? Steve
  • Hi Michelle, I had my vaccine yesterday afternoon, in my case the Oxford AstraZeneca one and like you I've had no issues so far, other than a very slight ache in my upper arm. Even the initial tiny amount of bruising around the injection site has…
  • Evening all, Just had the text a few minutes ago so my appointment is booked for Thursday afternoon. Can’t wait! Steve
  • Hi Cameron, Great to hear that you’ve had your jab and congratulations on the news that your offer to study medicine. I hope that all goes well. Well done too on volunteering for the NHS. It sounds like the sore arm is the most that people are…
  • Hi Laulau and Meercat, It’s great to hear you’ve both had your jabs and all is well. I’m sure it will give comfort to other transplant patient's that might be apprehensive about the vaccinations. I’m sure we can all put up with a bit of soreness …
  • Thank you both for your comments and support. Michelle, I'm sorry to hear you're finding this lockdown difficult, but I don't think you're alone. I also feel that this time has been more difficult due to following the guidance more rigidly. I fin…
  • Hi Laulau, I guess the characteristics of the population in different areas has a bearing on how soon each priority group gets vaccinated. There may be areas with high proportions of elderly people so it may take longer to vaccinate those groups,…