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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Walshy, I haven't experienced Haemolysis myself but hopefully Beckys response above helps and can give you some assurance that it can happen but importantly, that it can be treated. I can comment on the blood group mismatch though as my donor was a different blood group to me and my blood group changed from my own to…
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Hi Laura, As Greg says recovery time varies from person to person but I would say that at day 52 it is still early days for you and you are still likely to be feeling fatigued. For me it was around 4 months post transplant before I really started to feel less tired and more energetic, but I think I was perhaps quite lazy…
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Greg, That's an interesting point and it's something I've noticed myself as I seem to be developing 'Moobs' myself too! I put it down to carrying a few more pounds than I should and am in the process of trying to lose weight and tone up through weight training. I know from my late effects test that my testosterone levels…
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Hi Laura, I'm sorry to hear about your setback but at day +37 it is still early days and you need to take it easy. Hopefully Gregs response will give you some comfort that the EBV will probably only be for a short time, but these things do knock you quite hard so early after transplant. I didn't have EBV but I did spend a…
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Hi Grace, I had skin GvHD and like you it was treated initially with topical steroid creams and oral steroids (prednisolone) which eased it at first but never got on top of it. I can't speak for Vidaza as I have no experience of that but my GvHD was eventually conquered with ECP. Whilst the treatment itself didn't present…
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Hi Jojoc, I'm afraid I can't help with advice about the cream or oestrogen alternatives but I was surprised to find that there is such a thing as early menopause for men too and that the treatments we've been through can cause this. I had concerns about my virility since treatment and a recent late effects test showed that…
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Hi Jojoc and welcome to the forum. I echo every thought you've written and yesterday when you posted this I was celebrating the 4th Anniversary of my transplant. Like you I can look back on it as though it was all a bad dream and my life is now back to as normal as it was before it all began. In fact I probably enjoy life…
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Hi Tom, the dry skin and itching sounds a bit like a mild GVHD reaction and is how mine started. It could be something else but it does sound similar to what I had. I found a good way to get some relief was to have a bath with some E45 bath oil in. It seems to moisturise the skin well and gives you some good relief from…
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Happy New Year to you too Martin. Sorry to hear that you ended up in hospital over the Christmas break but fingers crossed this year sees your situation improve and a full recovery, supported by everybody here. All the best, Steve
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I had my transplant early in the new year in 2013 and was lucky enough to spend Christmas at home in 2012 but I spent most of it in bed as I was very weak from the chemotherapy I'd had in the preceding months. It was still a relief to be at home with my family over Christmas though but I'm sure there are many who haven't…
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Hi Rob, So sorry to hear you've had a relapse, but hopefully like Martin your medical team are on top of this and have a plan to get you back into remission quickly. It must be quite a shock when you've been well for so long after your transplant. I'm sure it is comforting to hear examples like Sue who relapsed 3 times and…
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Hi Rob, This isn't something I've suffered from particularly but I have noticed that my skin is more susceptible to spots than it used to be, less so on my face but more on my arms and legs. I'm not sure whether this is due to the skin GvHD I had and am now recovered from or whether it is a common thing post transplant. I…
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You're welcome. Two years sounds like a long time to still be on steroids and immuno-suppression so I would have thought it was in yours and your medical teams interests to try and get you off them. As far as side effects are concerned I didn't experience any personally, though I don't believe there are any serious side…
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Hi Mandimoo, I had ECP for skin GvHD and I have to say in my case it was very effective. It is a long process I'm afraid and it's a big commitment both for yourself in terms of time, and the hospital in terms of funding but the benefits make it worthwhile if it works (which it might not for everybody). I had ECP over a…
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Hi all, I finally got the results from the late effects test last week and thankfully most things are within the normal range and functioning well. I'm slightly overweight and my blood pressure was high when they did my obs that day, which was unusual as it's normally ok. As far as the libido is concerned they did find…
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Hi Sue, I don't know how common it is to have a donor from a different blood group as it struck me that one of the first things you would need to match was the blood group? I guess there are other more critical factors that must be matched between donor and recipient as my donor was from a different blood group but it…
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Thanks Hayley, That's useful to know and I'm sure will give hope to those who might have difficulty finding an adult donor. It sounds like between us all we need to spread the word about cord donation being just as important to transplant patients as potential adult donors being on the donor registers. I know there are…
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Hi Aimee, I'm pleased to hear that your partner has been able to find a donor and that he's approaching transplant. I have some experience of some of the team at Nottingham as I attended there as an outpatient to be treated for my GvHD. One thing you mustn't do is get too hung up on is thinking that he will get GvHD. It…
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Hi Ali, That's really useful to know, particularly for those who are also in the early days post transplant. I do recall being told to avoid gardening and cutting the grass whilst I was recovering and was lucky enough that my boys helped out doing that for me till I was able. I guess the problem is that with anything grown…
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Hi Sue, One thing I wondered about cord blood transplants is whether they have to be as good a match as a transplant from an adult donor? I understand that cord blood is very rich in stem cells which are clearly there to help the baby develop, but I guess I've thought of them as more of a 'universal' treatment, almost like…
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Hi Ali, I had skin GvHD for some time so as a result I was on Ciclosporin for an extended period after my transplant until the GvHD had gone. It didn't stop me kissing my wife and as Hayley has said it's important to us patients that things are as normal as possible, including showing tenderness towards our loved ones.…
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Hi Tracey and thanks for the update. It sounds like stopping the Valganciclovir, might help and fingers crossed Johns counts will start to climb again. Reducing the Ciclosporin will probably help too. Hopefully the results of his forthcoming bone marrow biopsy will give further reassurances. As you've seen from other…
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HI again, the good result from the bone marrow biopsy should be encouraging as it's reassuring to know that he's still clear. My recovery was also slow and I had blood and platelets for some time after my transplant. You will also see a number of threads on here about stem cell top ups which may give you some assurance…
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Hi TJM, Hope your husband is keeping going and the best thing to do is to try and stay positive. Small dips in counts are possible as Hayley says and it's certainly not unusual. It could be down to a minor infection or possibly some of his medication. The counts do still sound OK and they will hopefully start to climb…
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Hi Martin, I'm sorry to hear of your relapse. It does sound like your medical team have a plan though and from what Hayley has said it sounds like your are not in a unique situation. Fingers crossed the treatment works and you get back into remission and continue your recovery and I hope the GvHD effects are minimal.…
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Hi Laura, I guess this must be really difficult for both parties where younger children are concerned. My twin boys were 12 when I had my transplant so were better able to understand what was going on and why I was in hospital so from their perspective it was probably easier. I was able to see them whilst I was in hospital…
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Hi Vivienne, that's fantastic news to hear that 35 years after your transplant you are still gong strong. It's very encouraging to know that the process works and the chances of long term survival are real, especially to those who are about to undergo a transplant and are worried about what the future holds. Going through…
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That's great news Aimee. It must be a big relief to you and Matt. Fingers crossed the next course of chemo will get rid of those last remaining cells and if the transplant goes ahead it should make sure he stays clear. This should be a boost to your spirits and help continue the fight through the rest of the treatment.…
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Hi Aimee, That's great news that Matthew is hopefully being allowed home for a break, it does help a lot. I remember the first time I came home and got a lift from a friend that came to visit. It was late at night and my twin boys who were 10 at the time didn't know I was coming home, they answered the door with their mum…
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Hi there, If it's any sort of encouragement I can honestly say I was probably similar at the same stage. I didn't have CMV but the nausea and weightloss together with the need for blood and platelet transfusions is all too familiar. I also had the milkshakes which helped when I could keep them down so please persevere with…