Fear and Reality

[NotorDJP]

Trigger warning if you are easily pulled into depression or anxiety about your condition:

Hello all. I posted on here a couple of days ago because I was going to get a Fibroscan yesterday to see where my liver is on the Fibrosis scale. I was diagnosed Stage 2 (PBC Stage) in 2014. Not sure how long I actually had the disease. My mother had PBC, so more than likely I inherited it.

So I usually overreact to things, anxiety of course, and lots of experience with lots of issues. I always marvel at the people with super advanced disease that seem to upbeat on here. I know this is a forum and you can say anything on here, but in the deep, dark recesses of your brain and soul it can be different.

So while I half expected my liver to be worse (actually was fearing the very worst), when I was told that yes, your liver has pretty significant fibrosis and went from having "No visible liver damage" on an endoscopic ultrasound in 2018 to a fibroscan of 10.5 and being told I'm F2, but very close to F3 on the fibrosis scale. My new Hepology focused Gastro is great and is going to do an MRI to make sure my large bile ducts aren't having issues, and following up on a lot of other things for me. She is tweaking my medication dosage of URS to try to get my persistent 300 levels ALK Phos to get down to the lower 200s.

While I know I don't have cirrhosis, I have all sorts of things going on in my head. I thought my blood levels were stable, so no need to push for different or more meds. My last gastro said my level were stable (everything else is normal, Bilirubin, Albumin, platelets, ALT, AST) so no need to worry about changing. He wanted to start doing screening U/S for HCC though.

My fear is that I could have done something else sooner before the damage had started. I also fear that when they do the MRI they will see tumors or large bile duct involvement, which would mean a possible overlap to PSC (which is actually worse, I've heard).

I am only a partial responder to URSO, and my levels, went down to about half initially but went back up after a year and have remained in the high 200s and low 300s.

So here I sit at work, getting ready to go teach a class (I am faculty at a community college) and I'm feeling my mortality gripping at me. I had come to accept PBC, but had hoped it wouldn't progress as fast as it has. I went through some serious stressful situations in 2020-2023 in my old job. Bank merger, toxic work environment, aging father. I think that may have pushed me faster too.

My mother, who had more things happen to her than I can mention, usually said she had to feel sorry for herself for a couple of days, grieve a little, then she would just get on with it. I know that will probably be my reaction too. But I just found this out less than 24 hours ago and I have imaging tests ahead of me that always scare me. What if it's really worse than even what I think now?

Thanks for listening. Sorry to bum anyone out.

[DonnaBoll Administrator]

First of all, take a breath. I have heard from so many folks who 'wish' they had been diagnosed sooner or started a treatment sooner. Unfortunately, you just have to try to let that go. Don't waste energy on the 'what ifs'. Looking forward...One thing, though, is that Urso dosing is always and ONLY based on your body weight. It should not be changed due to lab results or symptoms. Has any of the doctors ever tried a second line of treatment like Ocaliva? Now there is a new drug called Seladelpar that has great results for many.

None of us have have any knowledge of what any of our tests or scans results will show. I know it's hard not to worry but just think how miserable you are doing just that. Is it scary? Of course, it is. I have been where you are and it isn't a pleasant feeling.

One question is do you feel like the doctor who is caring for you is really knowledgeable about the disease of PBC? Believe me, many are not. Caring for someone who has PBC is a long term relationship. Do you live in the states? In my other support group, I know of many PBC patients who could recommend who they go to for care. If you live in the UK, please feel free to ask for any suggestions they may have.

Stress is a huge cause, believe it or not, of liver enzymes increasing. Would it help if you went to speak to a professional about stress management? I will be the first to say that going to therapy was so helpful to me for many years. Asking for help is a sign of strength.

There are many techniques that might help you - yoga classes, meditation, walking, deep breathing, I would be glad to speak with you more on all that's going on in a private 'chat' here on this page.

Again, I do know how scary it is to have this PBC - there are parts of it we can control. Unfortunately, there are many we can't. Knowing the difference can help more than you know. I hope some of what I've said helps.

[NotorDJP in reply to DonnaBoll]

Thank you for your reply Donna. I know I need to calm down. As far as the doctor, yes I trust her. She has a lot of history with treating PBC. I just went to them after my previous doctor retired. I also have gained weight and have not had my dosage adjusted, so that is why she raised the dose. As far as Octaliva, she said she didn't want to give me that, but we are looking at a couple of other meds that have been recently created. Stress is horrible. I am seeing a therapist to help me through some of my work stress and now I will be talking to her about this.

Before I was diagnosed, I suffered from health anxiety due to a family history of lots of issues. If you want to chat with me privately, I would welcome it.

Its almost like I'm going through diagnosis again in some ways. I knew eventually things would get to where they need to be tracked more, but I'm not handling it with the grace I would expect at this point. Thanks for answering

[DonnaBoll Administrator in reply to NotorDJP]

Once you are on the right dose I hope you see some improvement in your liver labs over the next several months. I'm so glad you are seeing a professional. Just let it all out with her... one of the greatest things (I think) about seeing a professional is that there is no judgement about anything you say. I'm sure you can talk to her about some stress management. Try to take one day at a time... take that deep breath.

[lucy2310]

Last time I saw my doctor, he was very positive. My blood results had normalised (I'm now taking additional medication to URSO), so very optimistic. I then checked my exam results online. The fibroscan had increased quite a bit, from 13 to 14.4. Nevertheless, my doctor had been very optimistic.

I would propose the following:

The fibroscan results are only one indicator of the disease

Please ignore the whole 'stage' categories. I'm in Belgium, and no one uses these stages here. They just make people nervous.

There are many new medications lined up, some of them will be able to repair the liver

And, as one very kind doctor said to me: you're very likely to die with the disease rather than of the disease.

On that (cheerful?!) note, I'll return to my physiotherapy, because PBC or not, I managed to break my leg in a very complicated way.

Take good care of yourself!

[NotorDJP in reply to lucy2310]

Since you are in the 14.4 range, do you get scans pretty regularly? Do you have another symptoms more than you had when your scans were lower? Just trying to make sure of things. Honestly I wasn't giving my disease two thoughts until I had this appt. So sometimes "knowing" is good, but not always!

[lucy2310 in reply to NotorDJP]

I get a fibroscan once a year, and an ultrasound once or twice (during the last one, I was told that everything looked fine, with a bit of fibrosis). I'm lucky, I don't really have symptoms. Nothing really has changed concerning the liver in the last years (I think my first fibroscan some years ago was around 12)

When I saw the 14.4, I was a bit apprehensive, but considering that my doctor was very positive, I decided to carry on as usual.

As I said, it's only one aspect of the disease and if and when it gets worse, we'll soon have medication. (I did talk to some doctors here, and they are involved in developing one).: I'm very optimistic about new developments.

[Toddyboo in reply to lucy2310]

What is a fibroscan? Is that something only offered in the UK as I never heard of it being offered in the U.S. Is it something comparable to the ultrasound in the U.S.?

[NotorDJP in reply to Toddyboo]

I'm in the states. Fibroscan is similar to an ultasound, in that it uses sound waves, but it isn't really an ultrasound, as it more "taps" your side than rubbing over it. Its a test to see the elasticity of your liver and to see if you have fibrosis or damage. There is a number scale they use to see where you are. It has only recently (last few years) become readily accessible in the states and this was the first one I had. If you are in a bigger city or see an actual hepologist, you may have had them. They have been used in the UK for awhile. I had only had ultrasound, biopsy and blood work. I hadn't had a scan in a while. It is really a quick test and you know the results right then, as you can see it on the read out. 7 or below is considered good, minimal or no damage, then it goes up from there.

[Toddyboo in reply to NotorDJP]

NotorDJP,

Thank you for your quick response I was just wondering what a fibroscan was as I never heard of one and my GI doctor has never mentioned nor recommended that I get one. I dont live in a bigger city so maybe thats the reason but I think I will ask my GI doctor about it but he will probably say he has never heard of it or they dont have one. Nice information to know about though and Thank you again for getting back to me about it.

[NotorDJP in reply to Toddyboo]

No problem! My doctor knew about them, but didn't recommend either. I live in a mid size city, but I've been with a gastro in a smaller city since I was diagnosed. So just now had one. I found it useful to know where I stood with fibrosis. I have more than I thought, so hopefully we can start working on slowing that down some. I would ask, maybe there is a closer city you can go to and have one.

[Toddyboo in reply to NotorDJP]

NotorDJP,

I will ask him as I see him in a couple of weeks. Thank you for letting me know about this

[NotorDJP]

Thanks for your reply! I guess I'm letting my mind get ahead of me. My main fear, believe it or not, is not the PBC and managing it, as I have done that for a long time. Its the scans finding I have PSC overlap or worse, a cancer either in the liver, bile ducts or even in another organ like the pancreas. I know this is probably not LIKELY or PROBABLE, but its where my mind goes. I'm better today. Just trying to get my mind in the right place. My scan isn't until Feb. 6 so I have some time to normalize my thinking and my emotions before then. I have a root canal on Monday, so one thing at a time! UGH

[OrangeTulip]

Thanks for sharing, it is understandable you are feeling anxiety about your health, I’m sure at some level we all have some fear about our PBC . I don’t think I know anyone that does not have some sort of health challenge, some worse than others. What has helped me is looking at PBC as a call to action, eating better, exercising, letting go of people and experiences that stress me out, trying to let go of whatever you are able too and focusing on your health needs. It’s not an easy process, especially with the demands of everyday life, but I hope a different prospective can help you in some small way. I wish you the best.

[IAmTheGlue]

I didn’t read the other replies as I feel like garbage today. I did want to reach out to you and let you Know you are not alone.

I went rapidly through the stages after diagnosis and settled in compensated cirrhosis, where I have been stable for years.

It is exhausting, feeling like you have the hand of death upon your shoulder. Those medical appointments can feel like walking to the gallows… but here is what changed for me. I had to shift my focus from this horrible thing that is happening to me, to what I can personally do to help myself and my medical team take the best care of me as possible.

I eat as well as I can.

I take my medicine exactly as prescribed.

I exercise as I am able (some days it’s only a walk with my husband and every once in a while I have days I don’t even do that).

I try to remain optimistic and cut anyone out of my life that is a source of stress or drama

Life is short. Since my diagnosis, I’ve had friends die of rapidly progressing cancer, heart attack… not one of us is guaranteed tomorrow. I’ve had friends get that liver transplant and go on in health , friends who died waiting for it… their story is not mine . For me, a lot of prayer, meditation, self reflection and even professional therapy led me to this place of peace.

Stay strong. The good news is it’s being monitored and you are doing the best you can for yourself.💐

[My-life]

I believe that many put fear into this. They have said you have 10 years you have this and that. I have decided to live trust God. I'm not one to sit in doctor offices. My sister had scuderma ( not spelling it correctly) lol. So it must run in my family. That is all I can tell you. For me relax, enjoy life.