Update on appointment : Hello! I wasn’t... - British Liver Trust

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Update on appointment

Mywildlove
Mywildlove
16 Replies

Hello! I wasn’t sure if I should comment an update on my previous post or make a new post. So here we are haha

We got good news today, the doctor said my fiancé is compensated!! He was shocked and happy with the improvement and said “you look incredible!” When he saw my fiancé (Billy). He said we could half the diuretics and see how that goes and after his endoscopy tomorrow, he won’t have to see him for 5 months. And his bilirubin dropped by half from January 2nd to January 15th! His levels were a little high then he said, but good. All great news and we are so happy. I cried of course and Billy broke down a little in the elevator as we were leaving. Now, my concerns are this. When I asked if Billy could eat squid and octopus, he seemed confused and asked why. I told him because he isn’t supposed to have shellfish so we were wondering about other seafood. He said “do you mean for overall health or for his liver?” It took everything I had to not be the sarcastic b*tch I am and be like “well we are here for his liver sooo”. Anyway, he didn’t really have an answer for that. All he said was low sodium and healthy diet. Then I asked if he could lift little 8 pound weights to build some muscle back and again, he wasn’t really sure but said it should be fine. He’s a great guy and super nice, am I being too paranoid here? I have learned more here and it felt like I was teaching him a few things! Should we call a liver centre and see another doctor to be sure? He did say we could have a Fibroscan but he said it would be pointless because he’s stage 4 cirrhosis (diagnosed by US and bloodwork).

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AyrshireK

Brilliant news on the return to a compensated liver, long may it last. My hubbies consultant also says it is pointless having a fibroscan as we already know he has cirrhosis so it will add nothing to the diagnosis.

It drives my hubby mad when he gets told he 'looks well' especially when he often feels like death warmed up but I guess he does look better than the yellow skeleton who originally attended hospital puking up blood.

Onwards and upwards for you both.

Katie

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Hidden
Hidden
in reply to AyrshireK

Sooo right Katie. I got told “You are looking well” by the Anaesthetist at QEHB when I was on my 2 day Assessment. To say I wasn’t chuffed was an understatement!

Miles

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Hidden
Hidden

I'm.gonna send you a PM

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Coralsun

Hi there. I'm really pleased it was good news with your fiance being compensated. I'm sure Phoenix will be able to help you with your questions. Good luck

Coralsun

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CocoNutWater

Sounds very positive.

Was he really told not to eat shellfish? I read that raw shellfish such as oysters should be avoided by liver patients, but I can’t see anything wrong with seafood in general. Dieticians (as opposed to nutritionists) are well worth a try.

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Hidden
Hidden
in reply to CocoNutWater

Raw seafood

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jak547

clams, oysters, and octopus are very high in iron if his ferritin is elevated I would avoid, even cooked oysters

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mncold

Hi Mywildlove,

Such wonderful news for you both!!

I'm guessing and it is purely a guess - that he was advised to stay away from shellfish because they can carry hepatitis A and he doesn't need that when his liver is unhappy already. There are other issues with under cooked and raw fish so I'd call whoever told him that and find out why. Not all doctors agree on stuff.

As for exercising, my husband regained muscle mass by just going about his prior normal activities, you don't want him to overdo. Walking is good and little things like counter top push ups can help as he builds his strength. Of course, a lot depends on how depleted he is to begin with.

This site may have some info for you and people on here are great with what has worked for them.

Again, so very happy for you.

Best wishes,

Mary

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Hidden
Hidden

Hi wild

Didn’t you get to see a Dietician at the Hospital? We always did (well, at regular intervals and still do). They’re the ones that advise re food (could that be why they’re called dieticians I don’t know 😁)

Good luck and good stuff on the news front 👍👍.

Miles

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Mywildlove

Thank you all so much for your replies and well wishes! My fiancé doesn’t eat shellfish, he just likes calamari and was curious if we could buy fresh from the store and make our own safely. The doctor wasn’t sure about any of it, he just said low sodium and healthy as possible. I was kinda mad at first, I can’t lie. I was surprised that he didn’t know about certain food restrictions. But then Billy said the doctor probably doesn’t know because he’s not a dietician and that made sense I guess. After thinking and talking about things we decided to call a liver clinic here in town. The GI doctor told us yesterday that all his job is from now on is to check for cancer and bleeding varices and I won’t be able to handle now knowing how everything is going on a more regular basis. Selfish of me maybe haha thank you all again, you’re such amazing people! He has an endoscopy this afternoon so I might be back with questions later haha wish us luck! ♥️

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kyia

What wonderful news! I'm really pleased for you both!

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Hidden
Hidden
in reply to kyia

Hi

Great news for you both.

How did endoscopy go? Take care. Love and hugs Lynne xxxx

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Mywildlove
Mywildlove
in reply to Hidden

Hi Lynne, thank you so much! I’m so mad about yesterday. Apparently there was a cab shortage. We waited 2 hours for a cab before we gave up, they never showed and every time I called back, which was 22 times, the line was busy. So I’m rescheduling it today ugh. Of all the days for it to happen!

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Mywildlove
Mywildlove
in reply to kyia

Thank you so much Kyia!!

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Hidden
Hidden

Hi

Did the taxi turn up on time for endoscopy today? Love and hugs Lynne xxxx

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