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 😊

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

  • 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

  • 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.

  • 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.

  • 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.

  • 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!

  • 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

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

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

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

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

  • hopefully I will see you there 😊

  • 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

  • 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

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

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

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

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

  • Oh I will be doing lol 😁

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

  • Lol that's true was you in bexley wing?

  • Yes I was there about 10 o'clock x

  • I got in at 11am :-)

  • I was still there then lol x

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

  • sure that would be good xx

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

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

  • Thanks me too will make a lovely change x

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

  • Yay!!!

    Glad to hear some good news about one of us!

    Cheering you on!

    Kimberly

  • Thank you hunni x hope your OK x

  • 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

  • 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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