Hepatologist Referral

I finally have gotten a referral to a hepatology clinic. But instead of feeling relived I feel nervous and anxious. It seems everytime in between doctor appts that I seem to finally just get back to feeling calm and moving on with my life when another appointment comes up to remind me of the reality of it all and bam its back in my face and in my mind worring again of what the future holds. Im always scared that every new appt will be the appt where I find out the news that will break my spirit in a way I wont be able to find strength to get past. That some new thing will come up to instill the horror feelings all over again. I find it comforting to help others on this forum and give advice of positivity. Yet I stuggle to take my own advice or see that possible positive outcome for myself. I often wonder how I can spend the rest of my life reliving it all over and over. These are the moments where I am reminded how bliss ignorance can be. How happy I was before I knew about this disease that we watch and never can truly fight. I often wish I just never knew. My heart feels tired this night.

[Porphyriamaniac]

I could have written this post myself Phoenix! Constant knot in your stomach? what if this? What if that? It's been a long, hard time to get to where I am now, finally seeing the right doctors, over 3 years now. I feel relieved but also nervous, scared and anxious. In that time, I've had awful/strange symptoms, had to push to get the right testing, endure what I knew was the wrong testing just so Dr can rule other things out, I've felt ridiculed and disbelieved by healthcare 'professionals', in fairness it's quite a rare condition that these 'professional's' have probably never seen, so I accepted it but I never gave up and neither should anyone else. I drive myself mad sometimes trawling for info that probably doesn't even exist, or at least doesn't exist to me as a non medical person. I've learnt and read as much as I possibly can and that helps me a lot. I just want you to know you're not on your own. I would take comfort that you're now in the proper hands with the hepatologist, you're going in the right direction, as am I now too. What will be will be, worrying and losing sleep won't change any outcome a jot. We've no control over it, except to live the happiest, liver friendliest life we can to help our conditions. (i also need to listen to my own advice! 😁 ) wishing you all the best. Stacie. Xxxx

[Hidden in reply to Porphyriamaniac]

I too can relate to this so much, this is me who was so relieved when they said my fibroscan showed fibrosis, that was until I got home and it hit me! After a pity party for myself I read all the positive posts on here and thought I just need to get on with it.

I am anxiety tablets although I have cut them down to one a day, I believed everyone thought how I felt was caused by anxiety and although I realise that anxiety does not help, I only human!

I will be seeing a blood doctor next to see if they can find out why all my blood results are weird 🤯

Keep smiling

Elaine 😊

[Hidden]

Thank you both so much. I know im never alone on this forum and some times to be honest I hesitate to share as I know so many people are in this as well that I should try and be " stronger" but sometimes it chisels away at us slowly in our emotions. I wish you both the best and if I could cure us all I would. Anxiety is a cruel mental thing. Why the body decides it going to attack itself is just a crazy thing when we sit back and ponder the idea of survival in the big picture. I used to have panic attacks so bad I just couldnt make it a couple hours without having one criple me to the floor. I tried meds and they didnt help. In fact the idea of taking them gave me anxiety. Id get anxiety attacks in my sleep that would wake me up in a heart pounding sweat and if I did manage to fall asleep Id wake up in the morning shaking and paniced trying to even get out the door . One day I stumbled across this magical solution that the world knows as alcohol and all of a sudden the panic attacks went away. It put my body in a state of calm and I could sleep I could eat I could get out socially and be not panicked. All was well until I realized that the "crossroads demon" didnt tell me to read the fine print on the contract. I failed to see the clause that noted how in return for my panick being cured Id some day have to pay it back with my liver. So one day the piper came calling and as I lay in a hospital bed feeling cheated and dupped not to mention shamed by the doctors and nurses in the hospital who assume any liver related problem due to alcohol is just a person ignorantly and carelessly choosing to party hardy and in those moments I questioned If i could have survived a life of the panic attacks without jumping off of a bridge and not soled my liver to that demon or if it was all just fate I was watching unfold before me whilst I stared at it in a very clear and aware sense of turbo reality. And to think all I wanted was to be cured of severe panic disorder and instead I traded it for a chronic uncurable disease. These are the feelings and circles in the mind I find myself trapped in every time I go back to a doctor to be reminded it all did happen. It all is happening and tho days and months away from the medical world can make it seem distant I am again reminded that it was not just a bad dream.

Keep me posted on your journies Stacie and Painting. I wish you the best and with hope and advances perhaps we will be the generation that lives in a time of the cure xo

[sunnysmile in reply to Hidden]

Hi Pheonix - yep you echo my head also I also started overloading on the ole boozy woozy due to big panic attacks. They stopped me going into supermarkets for a couple of years, and being a passenger in a car that got stuck at traffic jams and not moving, well whoever was driving (as well as hubs) or me, would think I was having a heart attack. I used to tell hubs to drive along the hard shoulder otherwise I was going to pass out. Of course he didn't but that led me to having a couple of swift ones before we embarked on a journey on a motorway. Many years down the line and it turned heavy and I could quaff ridiculous amounts. Lovely at the time, but hateful now. I managed to tone right down this last 2 years after told on Ultra, fatty liver and told off about my drinking. I worry on the annual blood test and it plays on mind non stop. My hubs can take the evil stuff or leave it. So he does not understand the total hold it can get on you.

You are defo not alone in your thoughts. Panic and anxiety are Mr Nasties, then along comes the amber stuff and we are stuffed so to speak.

This site is wonderful, and I have learned so much reading the posts. My doc, when I told her I was concerned seemed not bothered at all (and actually said that life would be very boring without alcohol - not the best thing to tell someone who knows she is drinking too much eh). So I decided to research and found this site and that made me take stock.

Keep posting it helps you and all on here.

Keep positive sounds trite, but I do mean it, a tight mind makes tight decisions to your life, and for the better. I am also a very firm believer in good nutrition with plenty of water and exercise. Forget pre-packed and put a smile on your liver's face. I know that if I am called into the docs office after my bloods a few days ago and told that the mild fat has gone further and I am looking at trouble (and now jump when my phone rings) I will go either of two ways. Give in which is how many anxious peeps will go, or sit and think and decide that I will say what happens to my body and fight it head on with the very best natural food I can and PMA. I will call on the ole white blood cells to double forthright and come to my rescue and I will visualise them doing so. (Read loads about that).

Best to you

Gwen x

p.s. Always share - coz we all care x