Hi All
Does anyone have some advice.
My husband is 5 months post transplant and back at full time work.
However he is not feeling so good - his Advagraf has just been reduced from 8mg to 7mg so not sure if that has had any effect.
He feels as though he has a cold, aching all over, diarrhea, itching and covered in a rash. His ankles are also swelling again.
Is this anything I should worry about or just a bug?
I don't want to waste anyone's time.
Hi, I would definitely give the drs a call, I have had similar things in the past and my gp always arranges for me to have emergency bloods done just to be on the safe side, I hope everything’s ok and he feels better soon xx
Same as Kate definitely doctors or ring transplant hospital I felt that way a few months after mine and had an infection called cmv which is quite common in transplant patients and needs medication asap
Hi
I too had a transplant but mine was in France. I don’t like the sound of the rash plus diarrhoea. Is there a number you can phone at the transplant centre? They can tell you if it’s important or not. Tell them he’s newly transplanted so you don’t know if you should worry. Better to be safe than sorry.
Hope he’s fine 😘
Don't worry about contacting the transplant coordinator or your own doctor. Better to be safe and they wont mind in the slightest.
Contact your docs asap to be safe!!!
i should ring your liver nurse and talk to her it dosnt seem right to me
Hi,
You are not wasting anyone's time, we would suggest your husband sees a doctor and also contacts his transplant team as soon as possible.
Best wishes
Trust1
Ring the hospital NOW it is what they would want you to do the longer you leave it the worse it will get and the harder,longer for them to get it back right RING THEM NOW
We have been told that any fever, rashes, diarrhoea etc to get our son seen to be on the safe side. He is 12 weeks post transplant and three weeks ago had a rash on his back, temp and sort throat. Took him to the Gp and she immediately diagnosed tonsilitis and gave him 10 days of antibiotics which soon did the trick. Hope your hubby feels better soon x
Left 2 messages for transplant co-ordinators at 7:30 am and 1pm but nobody has called back. Went to see our GP but he didn't feel qualified to help and told us to contact transplant co-ordinators grrr so now stuck and don't know what to do next....
Do you have a direct number for the transplant ward where hubby was transplanted ? (rather than co-ordinators although it's shocking they've not been in touch). When my hubby was listed at Edinburgh we were told any issues out of hours or if we can't get co-ordinators then phone ward direct as the nurses can advise or get a doctor to phone you back.
Katie
Thanks Katie - will try that
How did you get on?
Katie
Hi Katie
i had sent an email and to my surprise his surgeon answered but she told me to take him to A&E or wait until the morning and ask for the hepatologist on call which I did but the operator wouldn't put me through - apparently members of the oublic cannot do that even though I told her that our surgeon had told us to do it. I still haven't heard from the co-ordinators. The surgeon then rang Les and sent us to our local hospital and she contacted them too. We were there for 7 hours until they finally let him home with no answers. He has fluid on the lung as he has COPD but we have been told to go back for a cmv mismatch test. He is still feeling unwell, covered in a rash, flu like and aching all over but at least it's not rejection. I do feel he has gone back to work full time too quickly. He had his op on 29 Nov and has been back at work for 2 months. We live in Kent and he works next to Gatwick so a long journey every day.
I just hope he starts to feel better soon.
Many Thanks
Kim
Back to A & E last night and eventually got a bed has severe CMV so hopefully better soon. Not feeling too good tonight xx
Thank goodness he is finally being looked after. You would have hoped that follow up post transplant would have been much more supportive when a potential crisis hits.
Hope they get it under control and he is on the road to recovery quickly.
Lots of love to you both, Katie xx
Hi
Hope he feels better soon. At least he's in the right place now. Lots of love Lynne xxxx
Can't believe he's back to work full time so soon! I also started working after a couple of months following transplant but it was just a couple of hours at home on the laptop and no lifting of any kind. Hope he's feeling better now x
Thanks - think he went back way too early but his consultant backed him. Apparently the transplant co-ordinators missed quite a few calls as their new pager system wasn't working so they apologised and explained the situation. He's back on valganciclovir (not sure of spelling) and we are hopefully going on a cruise Sunday for 1 week. He's also not allowed to lift things.
Hope you are feeling well and thanks to everyone for your replies.
It's certainly been a roller coaster one way or another but he's still here.
Kim
Court of Protection
Concerned and confused
Worried and concerned 
32 year old, concerned
