Just told yesterday I have PBC: Hi everyone... - PBC Foundation

PBC Foundation

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Just told yesterday I have PBC

tnchikadee
tnchikadee

Hi everyone. Just told yesterday after 6 mo this of raised liver enzymes , ultrasound that showed nothing but tiny benign tumor, that I have PBC. I meet with liver doctor in a couple weeks. I am mixed here with emotions. Firsthappy to find out something but at the same time angry at my body, scared and shocked I have this. I have no symptoms of this disease, I fact since I started working out beginning of this year eating better I have felt great. Gastric doc thinks this was found early and is positive that starting on meds as soon as possible will be the best thing. Just found this board and wanted to share my story and have been reading through your posts which has helped me already.

16 Replies

Hi

It's understandable to be anxious, worried, concerned etc.. when getting a diagnosis- especially such a weird, rare autoimmune disease like PBC.

And as you say, it can seem so "out of nowhere" and hard to wrap your head around. We've all been there in some form or the other. Be kind and gentle with yourself right now.

As you are new to the diagnosis-- stay away from a lot of outdated Internet information about PBC.

Here is a fantastic resource for learning facts about diagnosis and treatment management of the disease. I urge you to download it and use it. It's got lists of questions that will help you with your first liver dr. visit.

pbcfoundation.org.uk

pbcfoundation.org.uk/upload...

You are going to eventually make peace with the new information. You will. And getting support from this group will be so helpful. there is a lot of research going on regarding autoimmune disease in general and specific new therapies for PBC are in the pipeline.

Give yourself time to adjust. Lean on us for support. We are here. We care. We get it.

And do join the pbcfoundation.org.uk. it's free. They sponsor this forum and do advocacy for PBC research etc

Hugs to you

tnchikadee
tnchikadee in reply to EileenUSA

Eileen thank you so much. This board and the people in it are a life line of hope and encouragement. I am so thankful for it.

EileenUSA
EileenUSA in reply to tnchikadee

pbcfoundation.org.uk/upload...

Sorry-- typed my reply above on phone and the link does not seem to be there. PLEASE check out this document- it's a great starting place.

Truly!

tnchikadee
tnchikadee in reply to EileenUSA

Big hugs to you and this amazing group. I don’t feel alone here with this and with all the emotions I am feeling here it helps.

Hidden
Hidden

Welcome here tnchikadee - Eileen's said it all really. Just want to add - it's brilliant that you are so in touch with your feelings of anger, fear and shock. They are natural. Even though this sounds very uncomfortable for you, these feelings will beccome acceptance, understanding and ability to stay calm (mostly!). Some of us have more difficulty recognising our true feelings and they cause us far more trouble.

I also have 2 tumours on my liver identified 8 yrs ago and unaltered since. Can you imagine, I'd forgotten that til you posted because I am completely satisfied that they are no problem! You'll be fine. You really will.

Best wishes

Welcome.

And thank you for your post. As someone who has worked for the PBC Foundation for over 15 years, whose mum was diagnosed with PBC and went through the same shock, whose mum is still alive and well 25 years on, I absolutely understand where you are right now.

As said above, these are all natural emotions and it is great that you are in touch with those. Of all the times in history to be diagnosed, right now is the time. We know more today about the condition than ever. We know there is a good medication who gives most people a normal life expectation. We know there are second and third options if the first one doesn't work.

We know so much now about this condition and the knowledge base grows week upon week.

I would encourage you to join the Foundation, along with over 13,000 others around the world. We can help.

If you have any questions, or need any support at all i your journey, please feel free to contact me directly.

pbcfoundation.org.uk/existi...

Yours,

Robert.

tnchikadee
tnchikadee in reply to PBCRobert

Thank you Robert. That is just walkathons I needed to hear.

Hi, I too was told last week that I have this disease. It came as a massive shock to me & it still is. I spent most of last week crying because I was obsessed with scouring the internet looking for information, I have never heard of this & got myself into a right state. I have not had any symptoms as far as I am aware from what I’ve read & this all started when I had my gallbladder removed last year, I’ve not been right since & have been back & forth to my gp a number of times, I’ve had lots of blood tests all of which have been abnormal liver function tests. The ones I had before my surgery were also abnormal which was put down to my gb issue. However they have not rectified since. I did also have an ultrasound back in August which showed no issues. I went to my gp last month again because I keep waking up in the mornings with terrible nausea I’m not aware that this is a sign of this disease? Or am I wrong here? He ordered every liver test going I think. Now last week I am called in to be told I have this disease & that I need to see a specialist. It’s a worrying time but it’s also good to know we aren’t on our own. I had never heard of this & I get a lot of comfort from reading other people’s stories.

tnchikadee
tnchikadee in reply to Karaxxx

Hi Karachi. Yes good to know we are not in this aline. This board if full of hope and ppl who have been living with this disease a lot longer than is who have great knowledge and answers. This is such a blessing . Big hugs

donna01
donna01 in reply to Karaxxx

Hi Karaxxx and tnchickadee,

I'm sorry you are here with us too, but this is the BEST place to be and is a wealth of knowledge. My friends and family don't get it sometimes. Everyone here is amazing! You will see. Karaxxx, ironically my story is very similar to yours except for I had gallstones and had emergency surgery to remove my gallbladder and 6 months later was diagnosed with PBC. ALL of my bloodwork was NORMAL prior to gallbladder removal. I too obsessed over this illness. I still do a ton of reading, but I am certain a cure is very very close and I expect it in this lifetime, that's for sure!

Karaxxx
Karaxxx in reply to donna01

I do hope so, it’s a worrying time. I’m hoping they’ve got it wrong but I think I’m kidding myself, I’m eagerly awaiting my appointment with the specialist to find out exactly what I’m dealing with

Hi and welcome. I also joined the PBC Foundation and downloaded the App a couple of days ago. Although I am not newly diagnosed, I can tell you that the people here are a massive help! Everyone has been really helpful and you will learn tons of new stuff. I know, initially you are in shock, but trust me when I say this, it gets better. Everyone's journey is different but we are all in this together, from all walks of life and different countries. You'll get through this. Oh, and good morning too

My story is identical to yours. I have been on meds for one year. All numbers in the correct range now and I also never had symptoms.

Hi there You can do this There is Also a good fb group with wonderful people and quality information Check them out if you get a chance Cheers

Hi tnchickadee and Karaxxx. I’m sorry of course that you’ve had to join us and sorry for the feelings you’re struggling with now. Somehow though, when you’re further along the path, this will settle into a more comfortable place in your head (and heart) and then you will just be your usual you again. You probably have coped well with other challenging events in your lives, and so you’ve built resilience.

You’ve already shared with us and even begun to give support to others here - we’ll done! Amazing!

Very best wishes

Hi tnchickadee and Karaxxx,

Welcome to this wonderful group. I think everything has been said, but I just wanted you both to know that I experienced very similar feelings when I was diagnosed about 7 months ago. I too had no symptoms, but all the abnormal lab values and although they were not as high as many in this group, I nevertheless had a diagnosis of PBC. After sorting through a host of feelings and hours and days of googling and reading research articles, I finally came to a feeling of peace with it. I'm very thankful that mine seems to have been caught early and I'm just moving on with life now. In the U.S., it seems like many primary care docs are not familiar with PBC(mine admitted he wasn't) and I'm thankful he didn't just blow it off and instead sent me to a GI doc. I keep hearing of more and more people being diagnosed at an early stage and I think that's great as the medical community becomes more aware. There is also lots of promising research going on in the area of PBC treatment. Urso has been the only treatment for many, many, years, but now Ocaliva is available along with others in the pipeline. Don't be discouraged and take good care of yourselves, take your medicine, and live your life to the fullest. Best of luck to you both💕😊

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