British Liver Trust
12,109 members5,983 posts

Finally

Had another fortnightly appointment at Leeds yesterday of all days had to be valentines day lol.

At long bloody last consultants are happy with my progress and the fluid I have lost by myself had a scan and liver is fighting fit yeeeehaaaaa..... I am finally going to monthly appointments can't keep the smile off my face so fingers crossed it continues and I can celebrate 🎉 my 40th in 2 weeks time with no hiccups. Had to many special days ruined the last few years I just want this to be smooth and I got more hope than anything now!!

34 Replies
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Fantastic news i am so glad everything is finally going well for you. Stay strong and good luck in the future. X 😊

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Great news. I'm still doing every 3 months over 2 years on. Hoping to get that reduced next time.

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I've become monthly again after nearly 1.5 years of transplant. The consultants do not trust my GPs. I suppose we are lucky to get this treatment and service

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For me it's a bit of a faff because I have to take the day off of work and train it to London, about three hours each way. But of course it's a small price to pay.

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It is the same for me. I live about 50 minutes away for me. I've recently started taking the train myself because my husband's holidays were finishing. Tomorrow I have a longer day with an ultrasound and then the clinic so my husband will take me.

How come you're still on 2 monthly appointments?

I'm a bit disappointed that I'm still on 10mg of prograf. It is causing insomnia and not to mention the endless infections I've been getting.

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No quarterly appointments. I'm not sure why they haven't been reduced to 6 monthly because I've not had any issues at all. I suspect it might be because I was on a medical trial so they want to keep an eye on things. Also I think due to the trial I've been able to drop prograf completely, and I'm on small doses of sirolimus instead, which I think is less toxic.

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That's very interesting that you're not on prograf. How much of the other anti rejection do you take? I do believe some of my gastric issues are from the high dose of prograf. I was on azathioprine too which sent my white blood count and red blood count into the low end quite dramatically!

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great news. I was there yesterday. Saw the surgeon then had to go to the other side of the hospital for a pre op. Very long day x

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oh im back in clinic for my liver 14th March. When are you there next? X

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I in on the 14th what time your appointment be lovely to meet up x

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9:45am. Always in early because I don't live close x

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Mine 11am that's if transport gets me there on time lol

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hopefully I will see you there 😊

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Congratulations I'm so pleased for you and everything looks good, hope you have a great day for your birthday 👏🎉

Love and best wishes cheli xxxxxx

happy birthday

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Hello all,

jojokarak, always good to hear good news.

Had my routine clinic on the 7th - no phone call, so all must be well. Next appointment is now 4 months which will be 15 months post op.

By the way, Joe, you've inspired me. I'm now going to the gym twice a week and getting my bike fixed for the summer.

Jim

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That's great news sweetie, big celebrations for your 40th and very well deserved. So pleased yr liver is settling and doing well. ✨💕✨

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brilliant news jojo!! I'm so happy for you. you must be over the moon. 😊.x

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Yay!!! All sounds positive. Really good news.

Time to put your liver woes behind you and celebrate your 40th with style.

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Oh I will be doing lol 😁

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I was at Leeds yesterday we could have sat next to each other and not known lol Glad it's good news 🙂

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Lol that's true was you in bexley wing?

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Yes I was there about 10 o'clock x

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I got in at 11am :-)

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I was still there then lol x

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Lol hopefully next time can meet up and have a brew x.

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sure that would be good xx

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Do you use Facebook? Reason I ask is there is a Leeds liver support group on and it's fantastic

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Lovely that you're doing well. Hope you manage to celebrate your birthday happily and healthily.

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Thanks me too will make a lovely change x

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great news. we are wishing you well. xoxoxo love grace 🙋🏼

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Yay!!!

Glad to hear some good news about one of us!

Cheering you on!

Kimberly

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Thank you hunni x hope your OK x

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Dearest JoJo,

For the first time in 5 years my husband was given his next appointment in 3 months as opposed to the weekly/fortnightly ones we are so used to!

You are right - we have spent almost all important days and times in hospital and want to be able to actually celebrate :)

Here's wishing you all the best hun!

Pear

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Thanks pear and over the moon for your husband it feels like a weight is lifted when the appointments have a longer space, makes you feel more confident about getting on and enjoying life after so long :-) x

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