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
-
I'm not so sure that taste changes are affected by Ciclosporin and wonder whether your taste return was coincidental to your reduction from Ciclosporin Colin? My taste returned to more or less normal within about 6 months of my transplant, yet at that stage I was still on a fairly high dose of Ciclosporin due to GvHD. Even…
-
Hi Billie, and welcome to your new post at Anthony Nolan. you'll have no difficulties with us lot - we're a friendly bunch! One of my regrets was not exercising more during my treatment as I felt that my recovery could have been quicker if I had done more. As it was I found getting motivated to exercise was really…
-
I guess the donor cells affect us all one way or another Cynthia and we possibly do inherit some of the traits of our donor. My blood group changed as a result of my SCT so other things may have too, so I guess the way our bodies deal with what we put in them could also be affected. One benefit for me is that I no longer…
-
Hi Cynthia, I think taste changes are only temporary and certainly were in my case. For me it lasted a few months (maybe 4 or 5) before things started to revert to normal and my taste came back. I'm sure others will confirm this is the case with them too. I hope your husband is doing well and recovering and please reassure…
-
That sounds interesting Peter. My taste was affected during treatment as I suspect most of us experienced. Things certainly didn't taste the same at all and I went off a few foods that I loved before treatment, particularly chocolate! Thankfully my taste returned to normal some time ago. I went through a period when I…
-
I was lucky as far as work was concerned. It was a big worry to me when I was first diagnosed as I couldn't have afforded to have gone onto sick pay, knowing how long my treatment was likely to take. After speaking to my regional director though I found that I was entitled to 9 months full pay due to my length of service,…
-
Hi there, I'm just behind you in terms of timescale and had my stem cell transplant in early January 2013. I know what you mean about not tempting fate, but I've been feeling well for some time, with only a few minor niggles, so I remain confident about my future. I wrote to my donor a while back, anonymously within the…
-
That's fantastic Anni. I love hearing from people who've had transplants many years ago. It helps makes us 'youngsters' feel much better and the prospect of a long life so much more realistic. Wherever you are on the 22nd, happy anniversary and please have a drink on us! Steve
-
Fantastic idea Olivia. It would be great to have two special things to celebrate each year, your wedding anniversary and your re-birthday together. I hope all is well with you and please let us know if your plans to get married on your anniversary come to fruition. Steve
-
I know the transplant seems like a big risk, particularly as far as complications are concerned. I guess you need to talk it through with your medical team and share your concerns with them. They can probably give you more statistics than we can about the risk of complications. You then need to balance that risk against…
-
Hi STake2, I know it's a couple of days since you posted this question but I'm sure I've heard of others on here who have had two bites of the cherry. Hang in there and someone who has gone through two transplants will no doubt post a reply to you. Anyone out there who has been through this scenario please let our friend…
-
Thank you STake2. You'll be there befor you know it too. I hope things work out for you second time around. Steve
-
I'm guessing from your siblings point of view it might be difficult to donate again if the last time was unsuccessful. I hope it hasn't dampened your relationship as you do need all the support you can get. I don't know all the ins and outs but my understanding is that unrelated donors can sometimes be more successful.…
-
Hi there. Welcome to the forum. You'll find lots of support here from folks who are either going through what you are now, or that have gone through it and come out the other side. We all know how you will be feeling and are here to help you deal with what you're going through. Good luck finding a donor and with your…
-
Thank you George. I know that as you approach your first anniversary, you are probably feeling that things are going so slowly, but take each day as it comes and enjoy it. Looking back now to two years ago it feels like only yesterday, though so much has happened since then. Just before Christmas I had a review with the…
-
Wow, 21 years - that's fantastic Tracey! I hope I have as many years to look forward to. I'm 50 in two years time so if I can get another 21+ years of life I'll be very happy. You must have been one of the early patients in the transplant unit when it was new. I was part of the design team that designed the Windsor…
-
Thanks Peter. Feels like a massive relief to have reached the two year milestone today. Hopefully my chances of long term survival without the Leukaemia returning are good now. Massive thank you to Anthony Nolan for the work they do in finding donors for me and so many other people, and to my donor wherever they are, I am…
-
Hi Rob. I've not heard of PTLD before. Is it something that can occur in the early days post transplant or can it occur later? I had my transplant 2 years ago (anniversary on Saturday) and had some mild GVHD which seems to be under control now after 15 months of photophoresis. Hopefully I'm not going to suffer any more…
-
It's pretty quiet around here at the moment Ian, possibly due to the holidays. Perhaps just you, me and the tumbleweed for now! I don't know much about MDS myself as I had Leukaemia. I'm fairly sure there are others who have had treatment for MDS though and they'll be able to share their experiences with you. Do you know…
-
Hi Ian, Welcome to the forum. You'll find plenty of support from everyone here so any questions you have please ask away. All the best, Steve
-
Hi jehartley and welcome to the forum. It's good to have another Hartley (I'm one too). Remarkable that your mum donated despite being the carrier. I've suffered with GvHD too since my transplant in January 2013 but seem to have got away lightly to date having just had it affecting my skin. A recent change in steroid cream…
-
Hi Josh, You're doing really well to be walking about and its great that you are. As Peter says, set yourself small goals, perhaps a circuit that you can do, and aim to complete it a little faster each day. You may want to just walk at first, but build it up to a jog in time. Don't overdo it though. It's amazing how much a…
-
Great article Peter.
-
Good luck tomorrow Peter. Let us know how you get on. Like you I agree it's useful to give an insight into what it's like to go through a transplant, particularly those who are looking after you. It's easy to get snappy with them when you feel under the weather but if they understand more about how you feel it will…
-
I saw my consultant today following last weeks teaching day and she said the feedback from the patients perspective session was really good. The junior doctors and registrars found the session really useful and in most cases more useful than they expected it to be. The main focus of the discussions were my feelings during…
-
Thanks Peter. I'll bring those points into the discussion and can relate to the feeling of weakness directly myself, as I was absolutely the same. Like you I had an idea of what to expect but never expected to be so weak. I guess as I spent a lot of time in bed, both in hospital, and whilst I recovered at home my legs…
-
Hi Claire, I had my flu jab a couple of weeks ago now and everything seems to be fine. My consultant still doesn't seem in any hurry to arrange my other vaccines though, so I guess I'll just wait and see what happens, though I'll continue to remind her when I have my check-ups. Steve
-
My memory is getting better but I still have times when I just can't think of the word I need, which can be embarrassing at times. I sometimes struggle with names too and often find myself watching my son play rugby and shouting the wrong names at his team-mates! Steve
-
Hi Claire, I've been OK with alcohol and had my first about 6 months post transplant. Thankfully I'm able to drink normally now but I haven't pushed it too far! I wonder if your difficulty stems from the complications you had with your liver and kidneys that you mentioned in your introductory post? I'm no medic but I…
-
Hi Claire, Wow it sounds like you've been through the mill, probably more than most of us have. I'm glad you're doing well now though and well done on the fund-raising front - that's brilliant! All the best, Steve