Finally : Had another fortnightly... - British Liver Trust

British Liver Trust

24,143 members β€’ 12,327 posts

Finally

jojokarak
jojokarak
β€’34 Replies

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 πŸŽ‰ 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
oldest β€’ newest

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.

Jahida
Jahida in reply to RodeoJoe

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

RodeoJoe
RodeoJoe in reply to Jahida

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.

Jahida
Jahida in reply to RodeoJoe

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.

RodeoJoe
RodeoJoe in reply to Jahida

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.

Jahida
Jahida in reply to RodeoJoe

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

jojokarak
jojokarak in reply to sheri44

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

sheri44
sheri44 in reply to jojokarak

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

jojokarak
jojokarak in reply to sheri44

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

sheri44
sheri44 in reply to jojokarak

hopefully I will see you there 😊

Hidden
Hidden

Congratulations I'm so pleased for you and everything looks good, hope you have a great day for your birthday πŸ‘πŸŽ‰

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. βœ¨πŸ’•βœ¨

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.

jojokarak
jojokarak in reply to Identity75

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 πŸ™‚

Lol that's true was you in bexley wing?

Yes I was there about 10 o'clock x

I got in at 11am :-)

sheri44
sheri44 in reply to Gaynorlowson

I was still there then lol x

jojokarak
jojokarak in reply to sheri44

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

sheri44
sheri44 in reply to jojokarak

sure that would be good xx

jojokarak
jojokarak in reply to sheri44

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.

jojokarak
jojokarak in reply to Jahida

Thanks me too will make a lovely change x

great news. we are wishing you well. xoxoxo love grace πŸ™‹πŸΌ

Yay!!!

Glad to hear some good news about one of us!

Cheering you on!

Kimberly

jojokarak
jojokarak in reply to dckimberly

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

You may also like...