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 Michelle, I'd forgotten about feeling cold. Again I think this is normal and something that I went through too. I never seemed to be able to keep warm, even when the heating was turned up. I used to wrap myself up in a throw and snuggle up on the sofa. Like most things it's something else that will go away eventually…
-
Hi James, I had problems with my mouth, just after I was discharged for the first time from hospital so was a lot earlier post transplant than yours. Mine was a fungal infection and my mouth was in agony. It was probably the lowest point in my treatment as it meant I was readmitted to hospital three days after I'd first…
-
Hi James and welcome. I also had skin GvHD which affected my face and hands in the main, but I also had it on my chest, back and feet. In my case my skin was very dry and flaky, particularly on my face, which looked like it had a crust most mornings. I was never keen on the smell of Diprobase so tried a few alternatives…
-
Hi Michelle, Thats great that your father in law is back at home and recovering but it is a long slow process. The sickness and nausea for me was at it's worst for 3-4 weeks after my transplant, but it did take 2-3 months to go properly and for me to be able to keep meals down for any length of time. I struggled to eat…
-
That's great news. Keep watching the counts climb and fingers crossed his recovery continues smoothly. There may be little dips along the way but he'll get there eventually. All the best, Steve
-
Hi Becky, I don't know whether it will help but my wife went through fertility treatment years ago, but as part of IVF treatment rather than being related to a transplant. From what I remember (it's over 14 years ago now) there wasn't anything particularly complicated about it and for her it consisted of a series of…
-
Hi Tillby, This isn't something I experienced but I do remember my medical team having concerns about the effect of cyclosporin on my kidneys and liver and being encouraged to drink plenty of fluids. I don't know whether that is related to the difficulties your daughter is having. Hopefully someone may be along who has…
-
Hi there, on day 7 your father in law is still probably only in the early days, and I seem to remember it being another few days after that before I started to feel a little better. It really is a tough process to go through but hopefully your father in law and those around him can get through this rough period and…
-
Hi Sharren, I had a look through my old paperwork which listed the protocol I was on and Campath wasn't on there I'm afraid. I probably confused it with something else as I had so many different treatments in a short space of time. Hopefully someone will be along at some point who has experience of your husbands condition…
-
That's good. I still had full transfusions and platelets a couple of times after my transplant. Perhaps red cells take a little longer to recover than Neutrophils? Keep going Josie. Steve
-
Hi Lola, You sound like you're staying positive despite the apparent setback, which is good. You will get there eventually and I'm sure your medical team are doing what is best for you. It's also good that you have a donor ready to step in when you need them. I've been on Prednisolone now for about two and a half years,…
-
Hi Josie. What you're describing sounds very familiar to me and probably to others. I also had difficulty climbing the stairs and resorted to crawling up in my hands and knees and pulling myself up along tha banisters. I used to crawl to the bedroom as I couldn't stand then rolled myself into bed. You're probably very weak…
-
Hi Josie, As Peter says there is quite a bit of information on the Anthony Nolan website about donor contact that is worth a look. For the first two years everything has to be kept anonymous but that doesn't stop you writing. Your letter mustn't contain any details about you that might identify you and will be vetted…
-
I guess from the hospitals point of view they may just be being cautious about putting you through a transplant if it isn't necessary at this stage. Perhaps they have an indication that your illness has a low risk of returning and that the treatment you've had so far has worked. As Peter says, make a note of your concerns…
-
Hi Sharren, Welcome to the forum. You're definitely not alone as this forum shows and there are many going through the same dilemmas as you no doubt are, so you will find lost of support here from patients, families and the Anthony Nolan team. Please don't hesitate to ask any questions no matter how trivial you may think…
-
Great news Josie, watch those counts climb now! I remember the sore mouth and loss of taste well. Nothing tastes the same. Ice lollies help and are nice and soothing on the mouth. Make sure you eat what you can even if you don't feel like it, and if necessary use the nutritional milk shakes. They're nice made with a scoop…
-
Hi, I'm afraid I haven't experienced this but I'm sure I've seen a thread on this before which I'll try and locate. Have your medical team given any indication as to the reason? I guess at 6 weeks it's still early days and things can go up and down, so fingers crossed that it is just a minor setback and things will start…
-
Hi Emy, I also had mild skin GvHD and suffered some hair loss. My hair had grown back, albeit quite thinly following my transplant but I lost most of it again from my body during the GvHD. I didn't lose it in patches, and never lost all my hair completely but I would say its regrowth was reduced. I was on steroids…
-
How are things Josie? It must be a few days since your transplant and I guess if you're anything like me you might feel a little rough at the moment. If you are, hang in there as it will soon pass. Good luck with your recovery and please keep us up to date. Steve
-
Great news on the Neutrophils Alfie. Hang in there and good luck with your recovery and I hope your other counts pick up and get back to normal levels. Steve
-
Stay positive Josie. Don't worry if things get tough, just keep focused on getting through and on your recovery. Don't get frustrated if it's a slow process, it does take time and you need to take small steps along the way, and have a little celebration at each stage. Above all, keep in touch with us here and call on us…
-
I'm two and a half years post transplant and still on Aciclovir at the moment. Because of my GvHD the rate that my immuno-suppressants was reduced and it's only a couple of months since I finally came off Ciclosporin completely. Again because of my prolonged immuno-suppression I only started my first innoculations a couple…
-
You're welcome Gerty. You sound almost like my wife as I can relate directly to the things you're saying as they were the things my wife said to me when I went through the same process, particularly when there were threats of getting the dietitian involved! Steve needs to try and keep his spirits up as best he can and…
-
Hi Gerty, and welcome to the group. I think fatigue is something we all get used to eventually and I'm not convinced fitness levels return completely, though others may have different experiences. It does sound like your hubby is still in his early days though, so please don't be disheartened. His body has gone through a…
-
Good luck from me too Josie. Great that you're taking your laptop. I had mine all the time I was in hospital and it was really useful for keeping up with the outside world when you get bored with TV. Make sure you've got plenty of music on there and maybe some movies (or DVD's if it has a drive). I kept people posted with…
-
Great news Alfie. Watch them climb now but don't get disheartened if they take a little dip. Your body has been through a lot and will take time to adjust but keep being positive about the outcome and you will be ok. Please keep us updated as things progress and fingers crossed for a smooth and uncomplicated recovery. All…
-
Hang in there Alfie, it's still early days by the sound of it. I seem to remember it being 2 or 3 weeks for me and it was very slow then. Your body is probably just getting over the effects of the chemotherapy at the moment, but hopefully you're starting to feel a little better. Keep watching those counts and have a little…
-
Hi Jonni, I'm two and a half years post transplant and have just gone back to work full time. I've been working from home on light duties up until now but things are really picking up. It takes a bit of getting used to again doesn't it. I've also noticed I get tired easier and find myself needing to take a break from time…
-
Hi Josie. I'm sure everyone here was every bit as nervous as you are feeling. My transplant followed three months of chemotherapy which had left me feeling really weak and totally unprepared for the transplant. I felt like I wouldn't get through it as I felt like I didn't have the strength I needed. Thankfully I did get…
-
I guess like Kw13 says there will be a lot of detailed testing going on, largely to make sure the best match is obtained to reduce the risk of problems. Is this a sibling that's been tested or are you waiting for a match from an unrelated donor. My sister was tested but found not to be a match and I seem to remember it…