Tearful: Saw my consultant tonight , bloods... - PBC Foundation

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Tearful

vicary profile image
34 Replies

Saw my consultant tonight , bloods back - not good , I never get normal bloods usually stay the same but have gone up , itching so severe damaging my body , being sent foe fibroscan needs to know how scared my liver is , he's tried everything and now believes we are out of options - liver transplant - devastated and frightened - broke down in his office and he hugged me he is so frustrated for me , my partner is numb and I'm trying to digest it all .

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vicary
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34 Replies
Yvonnejulie profile image
Yvonnejulie

Don't give up hope, wait till you have had your scan and got the answers you need. Sending massive hugs to you.

vicary profile image
vicary in reply toYvonnejulie

Such a lovely reply , thankyou so much . Once I've kicked myself up the bum I'm sure my positivity will come back , being tired doesn't help so I'm gonna try sleep now . Hugs right back at ya .

I would jump in glee if I was offered a liver transplant. I want my mess over and done. You'll be fine. Just take it day by day and pray to your god

vicary profile image
vicary in reply to

Jennyhadenough thankyou for yr supporting reply very kind . I said the same , I would jump for joy but when it happens you go into shock, yr brain works overtime and it's so hard to take it all in

in reply tovicary

I have no clue how I would react. But there are many people in this group that had transplants. Regardless of how you take it and how you chose vent we are all here for you. Nobody knows us better than us.

Shulsey profile image
Shulsey

I would love a new liver, but it seems that we must become more sick in order to even be placed on the waiting list. At least that's the way it is in the states. It is a scary situation either way. Lots of prayer & hugs to you. Things will get better from here.

❤️ stay strong

Shannon

in reply toShulsey

I asked my Dr for a transplant and he made the motion with his hand that that's way down the road from now if ever. So what he's really saying is that I have to go through a living hell to get on the transplant list. I don't think so. I would take advantage of the death with dignity law

vicary profile image
vicary in reply toShulsey

Hi shulsey , i really hope their attitude changes and you get yr liver sooner rather than later . I know I should be happy I can have one and I'm sure I will be once I'm over the shock and have taken it in ,But yr words are reassuring to me like all my tell ya on here it has blown me away how wonderful you all are and feel really humbled to have such amazing support .

Shulsey profile image
Shulsey

May I ask where this picture was taken? such a beautiful place

vicary profile image
vicary in reply toShulsey

Hi shulsey, the picture was taken in a lovely place called flamborough east coast of Yorkshire, we have such beautiful places in Yorkshire and I'm extremely lucky that my partner takes me to many of them so I can recharge .

LindyRich profile image
LindyRich in reply tovicary

Thought i regognised the North Sea LOL. I'm just up the coast from Flamborough in Whitby. Is that where you live? Do you have a support group near you?

vicary profile image
vicary in reply toLindyRich

Aww bless you , Whitby is beautiful too I love it , no unfortunately I don't, I live in west Yorkshire but not too far from the lovely Yorkshire Dales 10 mins away from where they used to film emmerdale, all done in the studio now.

Brummi profile image
Brummi

Hi, I know the feeling, staying positive and stress free will help you. Tackle problems as they happen don't look for them. You may have a few life style changes ahead , there are a lot of good folk on here to chat to. I hope all goes well for you...

vicary profile image
vicary in reply toBrummi

Hi Brummi , thankyou for yr supporting reply, yr a man in the know , I have so many questions racing through my head right now , is that how you felt?

Brummi profile image
Brummi in reply tovicary

Hi, most certainly I was confused and worried but thats normal. Now you have had a few days to think about it take things one at a time. Chat to folk on here or message me things may not be as bad as it seems. Always here to chat...

vicary profile image
vicary in reply toBrummi

Thankyou , still only just sinking in found out at 6.30 last night when I saw my consultant , think I'm still in shock and my heads banging .

Sachin1234 profile image
Sachin1234

I know it is going to be hard until you get the new liver and I'm sure you will be fine after new transplant..try not to stress out cause stress can make you worst..please, think positive and believe in medicine!🙏🙏🙏🙏

Beautiful picture👍🏼

vicary profile image
vicary in reply toSachin1234

Hi Sachin, thankyou for yr lovely reply . I trust my consultant emensley he has always done everything possible to help me , and I'm sure my positivity will return once I'm over the initial shock . Everyone on here are wonderful people.

Sachin1234 profile image
Sachin1234 in reply tovicary

👍🏼

butterflyEi profile image
butterflyEi

Hi vicary

Wow! that is a shock and a lot for you to take in but in a way it is a door opening for you. You are still young and a transplant will give you better years as you age. There are several on here that have had a transplant and from what I have read in the past completely changed their lives. Just think after the transplant you will be able to enjoy that wonderful scenery in your picture trouble free. Best wishes to you, keep coming back here and let us know how you get on.

best wishes

PS Just seen a post from Bookworm7 she is 20 days post op. Perhaps you may like to read her post or even share with her. :-)

vicary profile image
vicary in reply tobutterflyEi

Thankyou butterfly so supportive and lovely kind words . I have seen scrattys post and I'm sure once my heads more sorted I will chat to her . Questions galore running through my head right now.

Best wishes to you

Rockie profile image
Rockie

Vicary. So sorry to hear your blood counts have gone up. Mine will never be normal and is also fluctuating. The itch gets sometimes unbearable. You did not say your age. I have read of people who received transplants and leading a good life, I am nearly 77. For me it will never be an option due to age and other autoimmune diseases. My immune system will just attack new liver again.

vicary profile image
vicary in reply toRockie

Aww Rockie that saddens me deeply so sorry to hear and there you are being supportive for me .

What a wonderful man you are .

Rockie profile image
Rockie in reply tovicary

vicary. I am a old woman, nearly 77

So sorry to hear, wishing you all the best. xx

vicary profile image
vicary in reply to

Thankyou Angel

Best wishes to you too .

4pjx__ profile image
4pjx__

Just think 'no more itching'! The transition to a new liver might be a little tough but you can get your life back. From what I have read PBC patients transplant really well. Don't be scared or worried. It's useless.

Pam

vicary profile image
vicary in reply to4pjx__

Thankyou Pam , I'm working on getting my positivity back

Kind regards take care

4pjx__ profile image
4pjx__ in reply tovicary

You go girl! Just keep moving in that postive direction.

Michiganpbc profile image
Michiganpbc

Take it day by day stay positive learn all you can about the transplant then it won't seem so scary if you know what's going on, will be praying for you, keep us posted on your journey.

🙏🌹

teddybear7 profile image
teddybear7

Sending you hope & hugs stay strong (easy for me to say) xxx

chrissey7 profile image
chrissey7

Wishing you all the very best on your journey sending positive hugs to you x

vicary profile image
vicary

Thankyou . Very kind words x

Nanajo1962 profile image
Nanajo1962

Oh My! You have quite a bit to digest. Try to not dwell on the outcome. Only one breath and then the next. Many survive. Reminds me of a poster I saw once. A pelican had a frog trying to swallow it. The frog had his hand around the birds neck. NEVER GIVE UP, was the caption. We must be the determined frog. Prayers friend.

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