Hello, I'm worrying yet again about recent events for My hubby John, he is +126 days out of transplant and has had cmv on and off since transplant it had cleared up but it's back again so back on the valganciclovir!! But before it came back the last couple of weeks, the platelet counts have dropped and today we went for Johns Bone marrow biopsy which was already booked in, the consultant said he needs to have an injection to boost his counts, whilst waiting for the biopsy results, im worried the falling platelets means something awful has happened, im sure I've read somewhere that low platelets means there is a problem with the chimerisim! What a lot of worth this all is!!!!!
I really feel for you. I think I was in a very similar situation to your husband about 6 months ago and it was horrible. There are loads of reasons why platelets could be falling. Whilst I know it is incredibly hard, I think the best is probably to try to switch off all those doubts in your mind until you get the results. There is nothing you can do about it and the worrying might make you poorly which will not help as your husband will need you. I have been there in the days of crippling uncertainty, convincing myself that I had found the right answer on Google, but the truth is only a proper medical analysis specific to your husband will get you to the right answer. I had a problem with low blood counts for about 8 months post-transplant and during all the scans, biopsies and tests I was convinced there was something very wrong. But it turned out to be that my body just needed time to get on top of what had happened to it. I had adenovirus which kept going and coming back which was really frustrating. It can definitely feel like 2 steps forward, 1 step back all the time (sometimes 1 step forward, 2 steps back) and it really messes with your head. I had immunoglobulins which really helped me knock the constant infections on the head. Is that something that could help your husband?
Really hope you manage to get it sorted soon and please keep posting to see if any of us can help any more at this tough time.
I am sorry that you and your husband are continuing to have a difficult time.
I have seen several patients in your position with exactly the same concerns, its completely normal to be worried about blood counts. Having an on going virus like CMV in the early phases after transplant takes it toll on a very immature immune system. Its trying to develop and all the while its having to battle CMV so naturally the blood counts will be affected. I think I have also said before that the treatment for CMV can also affect the blood counts so its like a double blow to the immune system.
I think Gregg's experience is an example of this type of situation and unfortunately it can last a few months. You could mention Immunoglobulin's to the consultant and this will help his immune system fight infection but not everybody is eligible. The team will always check the BM, not just to check for relapse but also to ensure that all the cell lines are developing as they should, if they can see that nothing is wrong then they can assume that it is the virus that is causing the low counts. A drop in platelets is not a sign that the chimerism is dropping, they will be checking this on a separate blood test. I am sure if there was a concern with the chimerism then you would have been told, if the chimerism is good then the transplant is working and that's a positive. From what you have said it does really sound like it is the on going infection that is suppressing his counts.
Of course you are not going to stop worrying until you get the BM results back, but you should be reassured by Greg and the patients that I have seen in the same position. Has your husband got a keyworker that you could both talk it through with? and maybe you both might need some psychological support? Its incredibly difficult trying to stay positive when progress is so slow and it might just help at this point in his recovery, maybe ask your transplant team and they can refer you. Its really tough but I am sure he will pick up soon.
Keep us updated
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I am not an expert on the science unfortunately. Just wanted to let you know my chimerism was 100% at the first biopsy and then steadily slipped down to 85% (it is slowly beginning to go back up again now). I was told that it can often happen that chimerism goes up and down in the post-transplant phase. I was told they would only think about interventions (eg, a stem cell top up) when the chimerism drops below a certain level - and at 85% mine was still satisfactory so they didn't do anything. I am over a year post-transplant now and am still not near 100% although it is steadily moving back up again. You are definitely right to want to ask about this with your husband's medical team to see what their plans are because I think chimerism is important. But i just wanted to let you know that I had the same problem with falling chimerism around the same time as your husband is experiencing and it has started to improve again on its own, in case that provides any kind of reassurance.
Wishing you all the very best,
I just wanted to add to what Greg has said. It is normal for the chimerism to fluctuate slightly especially if his immune system has been fighting CMV for so long, its not worryingly low.
We have a Anthony Nolan post transplant nurse specialist who works at the Freeman Hospital and I am sure she would be more than happy to have a chat with you both. It might help alleviate some of your concerns and it would be more helpful for you to have a local contact who can provide support. If you send me an email to the patient inbox firstname.lastname@example.org with your details, I can pass them on and ask her to contact you.
I hope the appointment today was more reassuring for you.
Yes Haley I will email you so you have our details I would appreciate speaking with the Anthony Nolan nurse at Freeman, Thank you for this