Liver cirrhosis, any advice would be much appreciated.

Posted by irishp333 @irishp333, May 10 1:45am

Hi there, I am really hoping to get some opinions here about the what I am experiencing with my liver cirrhosis. I guess I should start by saying I have no idea about any health concerns about myself until April 3rd 2025 when I woke up 4 days later, in my home, called 911 and was told my hemoglobin was at 4.5. Even then the hospital didn't know yet that it was cirrhosis until the next day when the did an upper endoscopy. My long time pcp always told me "you have elevated liver enzymes from fatty liver, so we need to keep an eye on that". Never anything as serious as cirrhosis. Anyway as time goes by and many, many hospital stays later I finally got accepted by a liver specialist here in Arizona at the Mayo. I was definitely relived and motivated to get on the track to recovery if it was possible. Let me add that with the cirrhosis I have hepatic encephalopathy really bad. Anyway fast forward to July 7th 2025 I had to go to the ER again, but this time I went to the Mayo ER. The ER doctor did a full work up and said "I wouldn't be worried about the cirrhosis right now, I would worry about your severe anemia" (first time hearing I had this as well). So I told my new liver doctor here at the Mayo who did nothing about it at all. At this particular time I am only on lactulose, carvedilol and pantoprazole. So over the next 6 months I am in and out of the hospital at least 15-20 times with very low hemoglobin, enough that I was getting 2-3 units on average per visit to the ER and admitted for days and weeks at a time. In December of 2025 I had an actual scheduled upper endoscopy, turned out my veins were no longer bleeding and I was good to go. So 2 months go by, I'm tired every day, still getting blood work done at least once every 3 weeks and it's always very low, but passable (hemoglobin between 7-8) so I didn't have to go to the ER. Now we come to February 2026 I had another bad hepatic encephalopathy episode and went back to the ER. Again hemoglobin way down and these dang hepatic encephalopathy episodes would keep happening. That visit itself it was another amazing ER doctor who put me on Rifaximin and told me about the drug and why I was being put on it. He said I should have been on it the entire time, especially since I get hepatic encephalopathy episodes as much and as bad as I do. Well he was right and that helped me so much, to this day I think I have only had 2 or so. Fast forward again to March 18th, another bad hepatic encephalopathy episode, I was flown to the ER and saw another amazing ER doctor who went into depth about my anemia that my assigned liver doctor was doing nothing to help me with. This ER doctor literally went above and beyond, got me schedule with a blood doctor, who immediately set me up with IV iron infusions (and oh man, what a life changer)!!! I was able to sleep again, I didn't have restless legs, my hemoglobin came way up too 11.9, I wasn't sleeping all day etc. I guess my whole point of me getting on my soap box is and asking for advise/help is that my liver doctor never did anything for me that these other doctors did and every time I bring up medication like rifaximin, or another IV iron infusion he tells me no. It seems like the only was I can get real help is from other doctors that just look at my chart, talk to me and go from there. I am thinking about asking to switch doctors because of this and I really don't know how to do it or if I should do it? I just know that since I got diagnosed with cirrhosis and severe anemia I have had to needlessly suffer and I don't understand it. I have amazing insurance and anything that insurance doesn't pay my VA insurance does. I am just lost now. Well thank you all again.

Interested in more discussions like this? Go to the Liver Diseases Support Group.

Janell, Volunteer Mentor | @jlharsh | May 10 6:56am

Hi @irishp333, and an overdue welcome to Mayo Clinic Connect! I notice on your profile you joined last fall so I am catching myself up between your initial post and this one. I am glad to read your best friend advised you to call 911 after your blackout. I imagine you feel like a hot potato passed around and this has to be exhausting in itself.

I can address your primary question about navigating care, mostly because I have a lived-experience that I have learned a lot from applying hindsight to. This is a long way of saying I’ve been there and can definitely tell you what NOT to do!

I am a bit confused by your statements that your Mayo liver doctor did nothing at all to address concerns brought up by an ER doc last July. I am trying to connect this to your previous comment that back in August your Mayo Dr. put you on totally different medication, but most of them are for anemia. I bring my confusion up only to say that I am getting stuck a bit trying to understand your details.

If I were you, I would gather the support available to me, take the simplest explanation possible, to the most direct route available. Others may have ideas, but I would:

* contact Mayo Clinic Office of Patient Experience at (844) 544-0036
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
* simply tell them I need help navigating because I feel like my care at Mayo Clinic is sending me in circles

* Summarize the best I can. I keep going back and forth between my liver doctor and ER doctors, and do not feel like my problems are addressed very well. The only thing I can think to do is switch doctors because of this and I really don't know how to do it or even if I should do it.

I so want you to find some support and peace in this process. Please come back and let me know what you are thinking, what your next step is.

Do you have someone to walk through this process with you, maybe your best friend? Can you talk to your primary care doc that has been so helpful in the past?

lylii | @lylii | May 10 9:57am

I would think that with anemia this bad, you would have a bleed somewhere. If you have enlarge blood vessels in your esophagus, they should be tying them off to avoid the possibility of a severe bleed. ER doctors will never thoroughly investigate the cause of your problem - they will stabilize you and will tell you what type of doctor you should follow up with. I would get in to see a well recommended gastroenterologist (your primary care doctor should be able to help you with this), who can spend the time to determine what is going on. I don't think bouncing between doctors (especially ER doctors) will be very helpful.

gently | @gently | May 11 12:34am

You can get help from other doctors which makes you found rather than lost. And makes this a happy narrative.
It does sound to your advantage to find a new hepatologist.
It is easy to switch. Call the hematology office and ask to schedule with a different doctor. You don't even need to be negative about your current liver specialist. Doctors really do have differences of opinion on treatment. Their training is different and they've seen different results ER treatment is often more aggressive. There are a lot of ways to interpret this doctor's treatment method, but it's best to think that he did and didn't do what he thought was best for you. But now thanks to those wonderful ER docs, you have rifaximin and iron infusions. a hematologist and soon a new hepatologist.

slow1 | @slow1 | May 11 8:15pm

I did not like the Hepatic Encepholopothy moments myself. I kept telling my team I think I am doing things and watching myself from the outside doing tasks around the house wondering if I was actually doing them or not. I doubt I had the same issue but for me they had me get a liver stent. At the time I also had an Umbilical Hernia. The stent is not a cure or anything like that. I was told once I have the stent it will help with relief but my mortality rate changes in a way where a transplant necessary which honestly was anyway. I am putting this on here as a food for thought. I had the stent done. It was a failed procedure which made me worse off than before. Went in for a second surgery where I was awake. Now it wasn’t horrible. You feel what feels like a toilet brush being pushed through your artery a few times and a few things but heck compared to what’s going on it’s nothing. End result a second failed attempt. Knowing what I know. I would hold off on that one until I had no option. I don’t know if that is an option on the table for you. In my case things got worse my body no longer even filtered anything making things much worse. My grip on reality was interesting. I’m not trying to give advice either way but just think about your options thoroughly based on where you are at with your prognosis.