Need freedom!!

[jojokarak]

Am still in Leeds hospital, this cmv infection is a bugger, saying that my levels of infection were over 3 1/2 million and they said that was highest they had seen. Cmv levels are now 6,800 so what a drop, problem I got now is medication they used to clear infection has caused my white blood cell count to drop to 1 ooops so I got to see an improvement in that before I can go home!!! Just an update but also to let people know what can happen if you catch cmv. Hope everyone is as well as can be x

[Identity75]

Thickie here... CMV?

[jojokarak in reply to Identity75]

It's an infection what lies dormant in all of us but after transplant more risk of developing especially if you haven't suffered with it previously. They put you on tablets right after transplant to minimise risk but I was taken off them.

[grace111 in reply to jojokarak]

thats a shame that you were taken of those tablets. you have and are going through the mill.i wish you well jojokarak its certainly no fun being in hospital and lights getting put out when we are still wide awake or cant sleep and those injections in the stomach. i hope that your white blood cells start to raise soon and you get to go home and start to enjoy your life. you deserve that dear. thinking about you.... love and best wishes. grace xoxoxo 🙋🏼

[Hidden in reply to jojokarak]

Hi Jojo

It sounds awful what you have been through. Would you mind naming CMV? I presume last word is virus? I hope I never have to experience it. Being in the early stage of PBC with the prescribed 5 years before the s#@t ( 😕) hits the fan hopefully I am still a little in disbelief but have read enough. People here sound so brave just getting on with coping. I wonder if I will be as able if it gets bad later. Do you have good family support too? I hope things improve for you soon. Thanks. A.

[jojokarak in reply to Hidden]

It's cytomegalovirus I only got it because the medication I was on to prevent it I had to be taken off as it was making my white blood cell count too low. But they had to give me in hospital as it is the only thing what clears the virus and I will have to be on at home until I have 2 clear tests..... When as you say the shit hits the fan, self preservation kicks in we have all got the strength in us as we have and are living with liver disease, do not worry about what is to come as we are all different you may hardly feel poorly but your blood's tell a different story, we get up every day and you have to take something good out of it keeps you going... And I have a fantastic network of family and friends they all took it in turns over last 2 years to make sure I was never alone as I wasn't safe to be.... Please don't worry too much don't ruin the times you are feeling well and make the most of them xxx

[Hidden in reply to jojokarak]

Thanks so much Jojo. I think support really helps . Your title Needs Freedom made me read on because I fear that -losing freedom. Also what I think you mean by not being safe alone. I cannot imagine going on at that point and have already decided I couldn't. But perhaps it's possible to find a way through and life remains precious. As you say I should enjoy now and the worst may not be as awful as I'm scared off. I am very glad to know you have a circle of support too. Its so important.

I am trying to figure how to put up my photo-I am a techno -twit! Just haven't figured it yet! Any suggestions welcome!

Good to chat to you - Ann, from Ireland xxx

[jojokarak in reply to Hidden]

You just got to remember if you do lose freedom for a while it's not going to be forever but that's if it even happens to you. I was just unlucky that I got every symptom of cirrhosis and most of the time I didn't know what planet I was on lol... And you should be able to go to your profile and where picture should be it will say upload it will take you to your pictures on phone or computer then you click on one you want to use x

[Hidden in reply to jojokarak]

Thanks Jojo.

What a journey you have had!-

Nothing to do I know except to keep going!!! And as you say its not forever. Well i think your words do help me to get a perspective on thing's. I also have a supportive family if I climb out of my cave a bit more. Not that it's really needed at the moment. I will try again later to upload. Might be easier on the laptop. Take care xx

[jojokarak in reply to Hidden]

You take care too and if you need anything don't hesitate to get in touch x

[dizzime]

So sorry to hear you are still there. Are you stuck in isolation on your own? I hope not as it does get a bit lonely in there. I know! !! Lol. I hope you white blood cells improve soon and the CMV stays away and you get home soon. Stay strong and positive, thinking of you. Xx

[jojokarak in reply to dizzime]

I was in isolation over 2 weeks but now on a ward and thanks very much x

[h0b0]

Knowing you it wont get you down too much. Chin up.xx

[Freddie41]

Sending best wishes x

[jojokarak in reply to Freddie41]

Thank you x