Please read the house rules and keep this community safe for yourself and others.
Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
-
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 feel hungry at last and I was able to start eating. I had very little interaction…
-
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 know so that if treatment is necessary they can react early. Do you have any…
-
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 receded to barely noticeable. My vaccination was done at my local GP surgery,…
-
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 reporting, which is no worse than having the flu jab so I’m sure this feedback…
-
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 after what we’ve been through and from what we’ve heard so far it doesn’t…
-
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 find working from home a chore as I am spending every day sat alone at working in…
-
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, so I can understand ho there might be inconsistencies as to when and how…
-
Hi Mel, I hope you and your husband are keeping OK and safe. It sounds like your hubby is having a lot of trouble with his skin which I assume is due to GvHD? I had the option of using liquid paraffin, but to be honest I avoided it as I didn't like how greasy it was. I felt like a deep fried chip when I'd applied it! Is…
-
Hi Raka, I'm sorry to hear that Nathan is feeling down and it can't be easy going through all this at his age. Like Michelle I'm one of the Online Community Champions on the forum and at 46 when I had my transplant I was a LOT older than a teenage superhero! But he's got something in common with all of us, no matter what…
-
Hi Laulau, This sounds very similar to something I went through just as I was released home after my transplant. My tongue turned white and became really sore and cracked. I was told it was a fungal infection and it was treated with a multitude of mouth washes and antibiotics. It was really uncomfortable and like you I…
-
Hi Hanna, I’m sorry to hear your son is struggling. It sounds unusual that this only seems to flare up at night. Has anything changed, such as bedding or clothing that he wears to bed? Is his skin dry or showing any rash at all? I had skin GVHD during my recovery and found sleeping really difficult. I found that having a…
-
Hi everyone, In case you didn't catch it there was a really good discussion event on Facebook yesterday about the vaccines relative to blood cancer patients. A panel of experts were answering questions that blood cancer patients had been asking and they addressed most of the reservations we may be having about being…
-
Lockdown 3.0! After last nights announcement by the Prime Minister I expect there is some anxiety again amongst blood cancer patients, particularly due to the rapid increase in infection rates and cases. The NHS capacity is under increasing pressure but from what I understand from a friend who is a Haematology consultant,…
-
Hi Andrew and I totally agree with that sentiment. For those of us that have gone through chemotherapy and transplants we can’t become blood donors (or organ donors I think either) but through our experience we know how important blood products are to those like us that need them to survive during treatment. Whatever…
-
Hi Laulau, I can understand how you're feeling as I got a mouth infection too. Mine was earlier, at just three weeks after my transplant and it started the Friday that I was discharged home following my transplant. In my case it was a fungal infection and affected mainly my tongue and gums, My tongue looked like it had a…
-
Hi Laulau, Congratulations on reaching the 100 day milestone. Personally I would still be very cautious about mixing, particularly with everything that is going on at the moment. I think the 100 day milestone means you’ve reached the point when the risk of complications from your transplant are reduced, but your immune…
-
Hi Laulau, I remember having problems with my nails. They ended up a real mess and it was as if new nails were growing over the old at one time. They became wrinkled and crumbly and I thought at one point I was going to lose them completely as they seemed to be becoming detached from the nail bed. My understanding is that…
-
Hi Cameron, It’s certainly been a very strange year and one I’m sure we’ll all be glad to see the back of. I think despite the relaxations over Christmas there will be a lot of people in our positions that will be approaching the festive season with some trepidation and caution. I think a quiet Christmas is probably a wise…
-
AH67 thats a great question and one that I've been thinking about myself. I think Tom's answer gives some comfort in that none of the potential vaccines are 'live' so should hopefully be safe to use in patients post transplant (not sure about pre-transplant). Since my transplant I've had all of my childhood vaccinations…
-
Some really useful information in there, well done Chiara. Steve
-
Hi AH67 and thank you for that brilliant post. That sums up really well the observations I had of my wifes journey alongside mine and the way you describe the ups and downs along the way I can relate directly to. It seems like an extraordinary length of time going through this together but its so good when the walk is…
-
Hi Cameron, Thanks for this insight which gives a different perspective to many of us older patients. I can't imagine how it feels for a child to be diagnosed with such a serious illness and then to have to cope with all the treatment it entails. I guess a lot depends on the age of the child and how much they understand…
-
Hi Mel, I think that's a very valid point and one that the Anthony Nolan team can hopefully consider when updating the forum. I know there are quite a few members who are carers of patients. There is a section for parents of children undergoing transplants but an equivalent section for carers might be very useful as I know…
-
Hi Michelle, There was a similar post a while back by Meerkat when the heat first started and it's something I've definitely noticed since my transplant. I find that even if I'm just out in the sun and not being particularly active I feel drained, almost as though the sun is sapping my energy from me. I certainly can't do…
-
Morning all. When I first went into hospital I found sleeping really difficult. I guess it was still the worry of my diagnosis initially as I was admitted to hospital within days of being diagnosed. The surroundings were unfamiliar too as I've never been in hospital overnight before, and was initially in a 4 bed bay until…
-
Hi Cameron, I'm also a community champion and have been around for a while after having my transplant in January 2013, so it's good to have you on board. I have twin sons the same age as you and your initial diagnosis was about the same time as I was diagnosed with Leukaemia. I couldn't imagine one of them having to go…
-
Hi Michelle, I guess as you’re still in cyclosporin you must have been shielding fully due to its effect on your immune system? I’ve been out and about as necessary during the last few months but have been very cautious when I’ve been out. I went into my office on a construction site on Monday for the first time again and…
-
Hi Meercat. I think heat definitely affects me so maybe it is related to my transplant. At 53 I’m slightly younger than you, but I do find that if I’m out in full sun doing anything particularly strenuous I get tired very quickly. In fact when I’m just out in the sun I sometimes feel as if it’s sapping the energy from me.…