Frustrated with my doctors

[Monicalbor68]

I was diagnosed with NASH, Fibrosis of the liver stage 3 and I have a cyst on my liver.

This had been a long journey of doctors not listening to my concerns to finally push my doctor to refer me to a gastroenterologist that was willing to listen to me and investigate the cause of my constant nausea, tiredness, bloating and horrible itching of my skin.

Finally, after a very painful biopsy, we get to find out that I have all of the above and I was referred to a liver specialist. This had been going on for 4 months and I don't think she even care about it, I am so tired all the time, I can't lose weight, I can't function normally on my daily activities and all that I listen from her is "you need to move more and lose weight".

The burden that I feel because I can't physically move my body to do the things that I did before and the pressure that she puts on me to do something about it..... that's why I came to her on the first place.

I can't sleep, everything that I eat makes me feel sick, my last blood test (that my liver doctor order) shows high levels of ferritin and low platelets (I have this for almost a decade). When I ask her about this, she told me to talk with my gastroenterologist.

I am frustrated, I am looking for trials on my own because she has not helped me with this, I don't know if I am going to have my cyst removed or when (like I said this had been going for 4 or more months), I need answers and I need someone to care about how I feel.

I live in Utah, if someone knows of any doctor that can help and that really cares about their patients, please let me know. I am desperate, I don't wanna die yet, I am 57.

Thank You for reading and I apologize for any grammar errors, english is my second language and I know I make mistakes.

[Rosebud1027]

I am so sorry to hear about your journey for answers. I would suggest seeking out help at an academic medical center, one that is associated with a medical school. Those are usually the best places to get help with serious diseases in my opinion because these centers attract physicians and scientists interested in research and teaching so they are up to date on new techniques and discoveries in their fields of interest. Good luck.

[nash2 Partner]

Hi Monica

I had good success with the transplant center at Intermountain Hospital in Murray. I'm from Boise and had to travel there and it has been some time since I was there so I don't know anything about their patient load currently but you might try to get a referral to them.

[Jkf1]

I am so sorry for what you're going through. Please do not give up being an advocate for yourself. Sometimes it's hard and long to find someone who will listen and actually care. I live in a small country town outside of saint louis missouri. I drive an hour once a year to a hospital that has a hepathologist, who orders tests and keeps an eye on my liver and takes my liver seriously. I pray a lot and that helps me. My faith has gotten me through a lot. Please do not give up searching for answers or someone who cares. Praying for you now.

[Justice1872]

Monica. Stay persistent and strong. It can get better. I am cheering for you. We can do it.

[Pops35]

If your ferritin is high and you are not anemic, ask doctor if it's ok to donate blood. Ask for test for hemochromatosis.