Update

hey all. Hope everyone is doing good out there. Just a small update. I've had some emergency bloods done and Leeds have rang me to say that they have found the CMV virus. After my transplant i was on Valganciclovir due to a miss match liver. I had to be taken off them as they found i was allergic. Now I've had no choice but to go back on them but the side effects are horrible. The skin off my hands are peeling cracked & painful (like before) you need to take them with or after food ( i cant eat as they already know) and my stomach pains are so much worse and the toilet is becoming my new best friend ☹ . Do i carry on struggling or do i ring and say something? I don't know what to do. Sorry i feel like im constantly whining on here.

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  • hi sheri ,,in my opinion you ring and say something you say alot ok ,,you didnt go through a transplant to have the life your living ,,,,get onto them fix your meds get help with diet and some food in you ok ,,and no your not whining..your expressing your feelings, others out there need help like this the more you share the more help everyone gives each other ,,,hugz matt

  • Thanks Matt. Really appreciate that. Hope your doing well? Your right you know its supposed to be a new life having my transplant but no quality of life here at all. I will ring them tomorrow before i have no skin left on my fingers. Huge Hugs bk to you as always

  • sheri your not whining we want to hear how you are as we care about you. its so upsetting to read about whats happening to you. please get in touch with them as billionthfish has said and dont be afraid. at the very least you should not have to suffer this pain. there must be something they can give you to make you feel more comfortable.your still in our prayers im so glad to see so many people are rooting for you my dear friend. god bless you and heal you amen, love grace xoxo 🙏

  • thanks Grace ill call them tomorrow xx❤

  • yes sheri please do that please. god bless you. xoxo

  • Hello,

    My husband had exactly the same happen - they can give you an intravenous version of it which shouldn't cause these reactions - yes do say something - we went to a and e and refused to leave till they did Something. It took a lot of persevering but we got there in the end...

    Please don't wait too long Hun - go to a and e - they will give you an alternative. These reactions could also be a sign of liver rejection - so better to go in and get it all ruled out...

    Keep us posted Xxx

    Pear

  • Thanks Pear. I will most definitely ring them tomorrow morning. I'll keep you all posted. Thankyou again xx

  • Please ring them, they need to know. Good luck.

  • thanks Catfish. I've already rang this morning and waiting for the on call to ring me back. Thankyou again everybody xxx❤

  • Hi, hang on in there. I think we all end up with a small problem after a transplant. Mine is diabetes and taking insulin 4 times aday. Don't give up..

  • thanks. I'm hanging on in there 😀. I'm type 2. It's actually got a lot better since my transplant so that's a bonus. Hope your doing well. Thanks for replying

  • I had really bad hands for months after transplant, I had no idea it might have been down to the Valganciclovir.

  • unfortunately yes it does cause it. Skin is peeling off, so sore on the fingertips. I'm still waiting for a call back. Good job im not holding my breath lol. Sorry you suffered too. It's not nice,even water touching them is agony

  • Hi Sheri Please don't think that you are whining, you have to release and even better share these powerful emotions, They will do you no good at all bottling them all up, and as you have already been told let the powers at be know how much you are struggling with your meds. And please pardon my ignorance regarding transplant but I always thought that they were so very careful with matching the donor to recipient??. If someone could explain what problems you are having regarding the cross match I would appreciate it., My thoughts are with you with hugs a plenty. Ian xx

  • hi Ian. They do their best to match livers but it isn't always 100% possible. My donor carried the virus so it was classed as a miss match liver. That's how it was explained to me. Many people carry it but it can lay dormant for years. Typical of me though. I'm greedy and have to get everything that's going lol.

  • Ha ha you made me smile, I thought I was trying to cheer you up.Yes I understand now, thank you Sheri.Hugz Ian x

  • hugs bk at ya Ian xx😁

  • No phone call btw people 😡. Maybe ill ring tomorrow on clinic day?

  • Did they tell you the treatment for the CMV?

  • yes its the treatment that's causing me bad side effects like last time

  • Oh I thought that had to be an infusion

  • it can be but im on the tablets

  • I hope you get it worked out. You've been through enough.

  • Maybe you,ll ring. SHERI!. Ring them again love, please. We are forever hearing about messages/calls getting lost in the system on this site. Be persistent, shy children don,t get the sweets as my neighbour is fond of saying. I can,t believe they haven't phoned back (well I can actually). G.B, anne xxx

  • I've rang Anne. It's clinic morning so i will get a call bk. 😁 xxx

  • thankyou

  • still waiting. Think it's gonna be easier speaking to my gp. They may be able to get something. It's a bit ridiculous now. Xx

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