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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


Hi,

I’d like to share my story and hopefully find some others who have gone through, or are going through what I am currently going though. My story is still a work in progress as I sit here and type, 4 weeks after having a liver resection (70% of my liver removed and numerous lesions Ablated). I still need lots of follow up with doctors and I’m sure my story will be a long one. I know when my journey started the first thing I did was look for other people in a similar position to me, and it was a type of comfort to read other people’s stories. My story will be in a few different parts as it is quite long.

Please ask questions. I’m no expert but I can try and help where possible.

So. A bit of background about me. 38 Year old FM, single no Children. On Oral Birth Control for about 15 years. Live in Australia, and up until now, have been otherwise quite fit and healthy.

My story starts in March 2017, when I was struck down with a typical cold/flu which resulted in a persistent and annoying cough. Fairly standard stuff. In this instance however after having this cough for over a week, I started to get a pain right in the middle of my chest, between my ribs. It was almost like a heartburn type feeling. The following day I woke up and this pain had subsided however in the morning I felt like I had a bit of discomfort under my right rib cage. I was at work and remember describing it as like having an air bubble stuck under my rib. I couldn’t get out of work that day so put up with this feeling until the end of the day, when the pain increased significantly. I was also breaking out in sweats and felt horrible for the whole day.

As I left the office the pain got worse and it radiated to my back and up to my shoulder. It made it difficult to breath in deeply. I put this down to being related to my cough, maybe pneumonia or a strained rib. I saw my GP the following day (Avoiding going to hospital as the idea of hospitals terrifies me, and also I feel like unless I am almost dying, I’ll leave the Emergency Department for the really sick). I was sent for an X Ray and blood tests. The X Ray was clear however my blood tests indicated some issues with my liver function and as such my GP sent me to hospital ASAP.
Once at hospital the ED doctor did an ultrasound of my Gallbladder. During this process is when a lot of my life changed in a huge way. The Dr advised me that he could see some lesions on my liver. He said it’s nothing to worry about and was very common but that I should get it followed up. He called a liver specialist to the Emergency Department who asked me a LOT of questions. Much related to use of Birth Control. He then went on to explain that I could have benign liver tumors or of course “Something more Sinister”. He recommended more tests and a few days stay in hospital while this occurred.

I was terrified at this point, and of course the big C is always your first thought. I was reassured that my lesions were “likely” to be benign, but of course you can’t help but think the worst.

The following 4 days were quite miserable, as I went for a number of different tests. Firstly an ultrasound, followed by a CT, then an MRI and a PET scan. I was introduced to the hospital’s senior liver surgeon who, as it has been explained to me is one of the best in NSW for this type of problem. Not a man of many reassuring words but apparently the best at this type of thing. As further tests occurred the doctors were quite confident that I had a mix of all three types of benign liver tumours. FNH, Hemangiomas and Hepatic Adenomas. I was told by this very experienced surgeon that it was the first time he had seen anyone present with all three types and that I was a “complicated” case. That’s not what I want to hear from my surgeon.
So I went for a biopsy and was recommended at this stage to go see a liver transplant team, as my case was probably a little too complicated for just a straight forward liver resection. So, now I am going from being a completely fit and healthy woman, so potentially needing a liver transplant. My life was turned upside down.

Okay, I’ll leave it there for now, and am working on the next parts of my journey. Again please post and share your journey as well, I would love to be able to have a forum where we can all discuss our stories. Again, I’m still to see specialists to see how the surgery went, and if this is going to be an even longer story than I hope for.
Hey Korgo, I know exactly how it feels not knowing. I spent 3 weeks wondering if I had cancer. It was a horrible feeling. Like constant nausea, and anxiety. Even now I'm still anxious and not quite sure what the future holds (I'll get to that in my next few posts which are coming, but tiredness has made it tough LOL).

Your story sounds similar to mine, in that even initially I was told I had a hemangioma (Or multiple), and it was harmless. But yes, the waiting and not knowing is horrible, and I can only say to people that from what I know these lesions do tend to be benign so try and stay as positive as possible.

But I'm glad you have a positive outcome, after all the worry and fear, and like you I'm also looking forward to trying to get my health back on track. Eating healthy and building up enough strength to get to the gym and ultimately getting stronger.

:cool:





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