held back by diagnosis

[Mariah1203]

I really don't understand my diagnosis and I'm stuck in a nightmare of a jigsaw puzzle and not living my life to the fullest. How can I get so many falso red flags ? and F0 on elastography ant F4 on biopsy and CT? Ultrasound states normal echogenicity and no evidence of portal hypertension. Im 31 now, been doing this "Cirrhosis" thing since I was 27 and I'm really ruining the best years of my life... by obsessing and worrying.

I wish I didnt even know. Then again, I see it as a blessing in disguise. How do I convince myself to just live, without worrying about what harm I may be doing? This is very nerve-racking. I cant even imagine my full potential because I am so held back by diagnosis. And it makes no sense!

[nash2 Partner]

The management of liver disease is in that awkward teenage period when the science is evolving but still has unknown sources of error, education of the medical community is spotty and often contradictory, and there is a torrent of misinformation about all aspects of the disease on Dr Google. It does tend to wear you down mentally if you are not in the middle of the bell curve where knowledge is the most well developed. I don't suppose it helps to know you are a leader into the murkier aspects of the disease process, but life has value despite the struggle and we can seek joy each day because just being alive is a miracle.

Wayne

[Mariah1203 in reply to nash2]

Is that a good thing or a bad? The key will be to learn to just live without the obsession. do me a favor, remind me to live,and not get caught up in this "diagnosis" ..because Ive lost 4 years to it already, obsessing and worrying and now I have regrets, I think.

[nash2 Partner in reply to Mariah1203]

There are some things we can control. Stress from any cause is not necessarily bad. Struggle can beat you down or provide a enemy that you can strive to defeat. Dwelling on what might have been is not productive and easily turns stress to distress and a spiral to despair. The past is whatever it is, but you do have a say about your future. If you consciously choose to seek joy and wonder in your life and recognize the challenges as part of the journey not who you are, even with disease, life can be more positive than negative. As a liver patient it is a good time. Therapies are coming. We will start to see treatments in the next 2 to 5 years. We are the second group of cirrhosis patients who can say that. The Hep C miracle has given life back to millions, so be glad that your struggle is today and always look forward not back.

[utep99]

This is going to sound weird but I tend to look at it like a poker game, Sometimes you get great cards others not so great. Follow the diet best you can and look at things as what comes will come you cannot control it. Make a bucket list. Determine to live each day at it's fullest they are each a gift of God. So try anything and take time to appreciate the small things. Ever notice the smell after a rain storm. The beauty of a fresh snow? A rose in bloom all very special things. Zip line try a new roller coaster and take a walk and appreciate a nature bike ride. try a new food. In other words no matter where you are at. I have a compensated liver MELD 13 but CTP says I am B7. Let it gone and do not let it define you. Take charge and define it. You will find a whole life of freedom and happiness.

[Mariah1203 in reply to utep99]

what does CTP and B7 mean?

[Bbohnie in reply to utep99]

Beautiful answer utep99!

[Herman7275]

Mariah , you hit the nail on the head, your viewpoints & feeling are exactly how I feel...I was given my diagnosis, but that was it, no numbers, just that I had a fatty liver, some fibrosis & some cirrhosis & to do a bariatric surgery & come back in 3 months & see me!!! That's it no other info, except allow someone to take 2/3's of your stomach out , loose 100 lbs. & you will feel better..

[nycliver]

Have you received annual Fibrosis tests? Assuming you're obviously not drinking and following a good diet?

[Ajo13]

Mariah, I feel like I’m going through exactly what you’re going through! I’m 28 and recently ended up in the emergency room because I was having severe upper right quadrant pain for weeks. I assumed my gallbladder needed to come out. They did and ultrasound and said my gallbladder looked perfect, but I did have a moderate fatty liver. The ER doctor expresses that he thought I might have NASH sand the pain was coming from that. Fast forward to visiting my primary doctor who said she didn’t believe I had NASH, but would refer me to a gastroenterologist to be on the safe side. The gastro doctor said I absolutely didn’t have NASH because all my liver enzymes were normal and I don’t have diabetes, high blood pressure, or high cholesterol. I changed my diet completely and started exercising daily. That managed the pain. Through the holidays I kind of ate pretty badly and now it’s back with a vengeance. I have a HIDA scan tomorrow to make sure it’s not my gallbladder causing all the pain, but other than that I haven’t been able to get a doctor to do anything else. All the information online is scary and I’ve basically been living in fear since September. There’s days I can’t even get myself to get out of bed. It’s so emotionally draining. At least we’re all in this together.

[NYLassie]

I freaked out when I was diagnosed! I was also quite cross with my former doctor for not catching it sooner. She was SO focused on my diabetes and I felt she and her entire staff were blaming me and patronizing me. I switched doctors and feel genuinely supported now. There are a lot of puzzle pieces to diagnosis ... ultrasounds, CT scans, blood tests, Fibroscan, biopsy ... each one adds a piece to the puzzle that a competent hepatologist can fit together for a diagnosis. One thing that helped me to stop freaking out was to look at morbidity statistics. How long does it take for F3 fibrosis to get worse and become cirrhosis? How long fo the stages of cirrhosis last before liver failure, how long can someone live at each stage? Now, that was on the assumption that I made no lifestyle changes . I calculated 15 or 20 years without any intervention or effort to get healthier on my part. I feel that with diet and exercise, I can prevent this disease from getting worse and it may be getting better. That increases my odds of surviving longer. The thing for me is that I am 52 years old. I spent 20 years caring for my elderly parents while neglecting my own health. Worst case scenario for me, 15 or 20 more years doesn't seem too bad. I am fortunate that my hepatologist is one of the best in the country and when he put the puzzle pieces together and gave me a definitive diagnosis, I could ignore individual, conflicting test results and trust him. Diet and exercise, good nutrition proven to aid liver health, and the knowledge thst I am doing everything I can to help myself has eased my anxiety. The way I see it, I could worry and worry and in the end, have an anvil fall on my head and do me in.

[PhoenixRisin in reply to NYLassie]

Thank you - I needed to hear that. I don't have a doc yet and live in a very rural town. I feel judged, sad, and scared. Hoping I can find care as good as yours.

[LeiL]

Really needed to read this thread. I am so full of worry, angst, and depression . The worst is the lack of information from my doctors. They appear to address me as a person with Fatty Liver and not NASH. Once I found the true difference, I was devastated and now just counting days.

[Joybee333]

I totally understand you. I will be 40 this week and I live in regret everyday of my life and wish things could be so different. I also have a 6 year old and I want as much time with her as I can get. If you ever want to talk, please reach out. I have fibrosis stage 3. I am in constant pain everyday, especially after meals. Just trying to lose some weight and be as healthy as I can.