Nervous about my upcoming 12 month review - British Liver Trust

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Nervous about my upcoming 12 month review

Aotea2012 profile image
20 Replies

It’s a year since my diagnosis of cirrhosis. I was very sick at the time. I had a deep rooted infection and was in hospital. I was very weak and showing a lot of symptoms. It was a surprise to me that my liver was so damaged as I hadn’t really felt that unwell until the infection hit. Looking back there were some signs but they were subtle. I’ve done all the things that my consultant and dietician recommended. Diet, exercise and no alcohol. I’ve been feeling very well, particularly recently. I had a six month review and my bloods were all back to normal and my endoscopy showed two minor varicies. He was very pleased. Now it’s my 12 month review at the end of this month. I’ve had my bloods taken this week and my ultrasound scan. I obviously don’t know the results of these yet and won’t until I speak to the consultant in a couple of weeks time. I’m feeling nervous though. I feel really well and have been carrying on with life as normal. My family say I’m worrying unnecessarily. My GP did some bloods 6 weeks ago as I’d had anemia a while back and I get regular blood checks for that. Those were all normal, including the platelets. I’m not really a worrier and logic tells me I’m being a bit neurotic, but I could do with some of your experiences of the 12 month review. I’m relatively new to this and I know many of you will have been through many 12 month milestones so some advice on how I deal with future ones would be good too.

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Aotea2012
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20 Replies
AyrshireK profile image
AyrshireK

My hubby has never had an appointment called a 12 month review - he basically just has consultations to see how he's doing, feedback on the tests and it's a chance for you to ask any of your questions & be checked over by doctor. Hubby just saw his consultant for first time since pre-covid days (June 2019). She checked over his bloods and scan which he'd had recently, discussed how he's doing and feeling and that was it - chat with you in 6 months time, endoscopy in a year and off you pop.

It sounds like you are doing well with all your lifestyle changes, your bloods that were good not too long ago etc. Doesn't sound like you have much to worry about.

Be prepared for your consultation - get a wee notebook if you haven't one already. Jot down the medication you are currently on, anythings that are concerning you - symptoms wise and all the questions you want to ask and in that way you make the most of this opportunity of seeing doctor. Absolutely nothing to be worrying yourself about.

Katie

Aotea2012 profile image
Aotea2012 in reply to AyrshireK

Thanks for your reply. It’s me that’s working myself up and calling it a 12 month review. It’s a bit like an exam in my head! My last appointment was a bit like you described. So I’m sure this one will be too.

AyrshireK profile image
AyrshireK in reply to Aotea2012

It's not an exam it's a chat. At the end of the day it's your appointment so make sure you get out of it what you want. The doctor is there to look after you, not scrutinise you or anything.

Aotea2012 profile image
Aotea2012 in reply to AyrshireK

Thankyou.

deanw41 profile image
deanw41

My consultant books me in for 12 month reviews. No idea what date or time!? I’m normally walking the dog and he phones and says,we’re you expecting me? 😂 I’m always walking the dog,puffing and panting while being dragged around a field by a 6st German Shepard!! My questions written down at home!!! 🤷‍♂️😂🐶🐾🐾

Aotea2012 profile image
Aotea2012 in reply to deanw41

Thanks for your reply. I do have a time and date...so that’s a bit better. The down side is I’ve got time to work myself up over it!

deanw41 profile image
deanw41

There is that,yes. I’m alright with that kind of thing. I accept my own mortality,and make the most of life.

Hi,

You are welcome to call our nurse led helpline on 0800 652 7330 for a chat through any concerns? Mon to Fri 10am to 3pm.

Cat-B profile image
Cat-B

Hi it’s just the same as your 6 month review, I had 3 month reviews for three years and was so pleased when I got well enough to go to 6 month reviews and now I’m on yearly checks ( I still have 6 month scans and big bloods) . Please don’t worry it’s good news that you only need 6 month checks, I was in hospital for nearly 3 weeks and have been home for over 6 years ( I was given a 20% survival rate for 5 years! I’m still on my no salt, high protein and calorie diet and no alcohol). Good luck

Done786 profile image
Done786

are u gona go see him

Aotea2012 profile image
Aotea2012

No, it’s a telecon. I saw him last time.

Roy1955 profile image
Roy1955

Welcome to the world of worry that we get every 6 months once we are diagnosed with cirrhosis!It's now part of our life, bloods and scan followed by an appointment for the results.

Hopefully all no change and see you in another 6 months.

I know how you feel, several times I get to the point where I seriously consider discharging myself because of the stress and just letting nature take its course.

Depression caused by the constant reminder is MY biggest symptom.

Probably not the best idea though.

Zukosmile07 profile image
Zukosmile07

I'd be more worried about all that cheese you are chasing..... hahahaha! How the devil are you Aotea. You are fit and healthy but most of all abstinent..... what more could you be doing. I think you will fly through with a pat on your back with a well done sticker for good luck! X

Aotea2012 profile image
Aotea2012

Well down with a cold. Done 2 lateral flows and both negative, but just to be safe rolled down to the testing centre this am for a PCR. Sneezing everywhere! Yes I think the cheese may have been to blame!

Zukosmile07 profile image
Zukosmile07 in reply to Aotea2012

I think the common cold has been rife Aotea... When I got it and with immunosuppressants it was like being struck solid "stop what you are doing and go to hospital". Be safe and you are doing the right thing....I got tested and tested again at hospital.....no COVID at least.

VickiSpence profile image
VickiSpence

I have very similar symptoms and a hospitalization, but it hasn't quite been a year yet. It will be in July. I watch my regular blood test results like a hawk, and everything was continually getting back to normal. Then last visit my bilirubin and ast went UP a teeny bit, I mean a fraction of a point basically, and I worried myself sick until my next appointment. Of course everything was fine and all those results are part of a pattern, if it doesn't go up continually its really not huge. Anyway, just my guess, if you're feeling well and doing everything asked I would try not to worry. I imagine all will be on track. :) I hope that helps a little!

Aotea2012 profile image
Aotea2012 in reply to VickiSpence

Thankyou. I thought it was just me that worried about results. It’s strange, I never really paid much attention to my body before my diagnosis. These days I keep an eye on everything! I’ve become the world’s expert on nutritional content of food. I make sure I get a good nights sleep by keeping away from screens in the evening and chilling out with some warm milk before I go to bed. I run or ride every day. Haven’t touched a drop of alcohol in 12 months and haven’t been tempted. The smell makes me gag these days. I’ve become a super healthy version of me! My one vice is ginger nuts! 😁

Samqdj45 profile image
Samqdj45

Evening. Your story sounds so similar to mine 🙃

I had my 1st review in December and also worked my self up in to a frenzy.

It was over the phone, very short and sweet. I had previously email his secretary a small list of my questions (basically can I do X y and z like a "normal" person now) and his reply - "you're doing well, the only thing you cannot do is drink alcohol again - as for flying (holiday) I think you should sky dive..." 😅 It did take me by surprise to be honest, then I remembered, we build these people up, those who essentially, gave us our worst news ever, and forget that they are actually human too and want the best for us. Try to chill a little, have you're questions and note pad at the ready, and a little faith in your hard work. You sound like you're in so.much of a better place now. Go for a nice ride to blow away the cobwebs before hand, cup of tea and a chat, feel free.to drop me a.message if you need distracted 🙃 best of luck x

Aotea2012 profile image
Aotea2012

Thanks for your reply. Yes my consultant is great. No nonsense old school type. I’m sure if I did anything that jeopardised my health he’d give me a hard time, but given I’ve done everything he told me to do then I’m hoping the results are going to come through in my bloods et al. I’m feeling well so hopefully it’ll be fine. Thankyou for taking the time to reply.

Samqdj45 profile image
Samqdj45 in reply to Aotea2012

Keep us posted on how you get on 😊

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