“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."
I know this post is older but it deals with what I have questions on. I'm hoping someone is still out here looking at these.
My husband got diagnosed with High ammonia levels about 4 months ago. They warned him that if he didn't stop drinking he could be in for irreversible liver disease. He immediately stopped.
They put him on contulose to bring down the levels and I could immediately tell the difference. He was on 3 x per day. The doctor was thrilled and cut him to once a day. BUT he has been altering it depending on how he is feeling and If I tell him he is acting out of character.
He has Polycystic Kidney disease and this causes problems with the liver as well.
I'm typing because I am scared - he doesn't get nasty when his levels go up - he gets very goofy and drunk like. Is it o.k. for him to self adjust this medication? I see a lot of information of personality difference but I'm worried about the drunkeness like behavior. I would swear he downed some hard liquor but I know for a fact he hasn't.
I don't think our GP knows enough about Polycystics and that he and his practioner try to act on the behalf of specialists. Can anyone tell me what is the best type of specialist to take him too?
He is only 44 and I'm 41. I'm worried that I am not being aggresive enough but with HEPA laws its difficult because they treat spouses just like strangers.
Thank you for any helpful information anyone has. I wish all of you many blessing.
Hello and welcome to all the new people! So glad you found us!
ScaredinOregon, I also have hep C. I was diagnosed via biopsy in March '93. At that time, I had 6 years of sobriety. I had used IV drugs back in the late 60s and I know that's how I contracted the hep C. I tried interferon, but couldn't tolerate it. All was okay, except for extreme fatigue, until about 2 yrs. ago when I was found to have a huge cancerous tumor in the right lobe of my liver. I was fortunate to be able to go to Mayo Clinic here in my city. With treatment and then surgery to removed that right lobe, I survived. At that time, they did a biopsy of the left lobe of my liver and found I have "mild" cirrhosis. I've had a couple of incisional hernia repairs since then, the last one being May 29th of this year. I've had ascites issues since then and am now on my 3rd drain. I'm hoping to have it removed this coming Tues. Once I'm stable, I may consider treatment again. Did you do the "combo?" Would you consider going through treatment again?
I also am facing this alone. I have no family here, and my b.f. of 13 yrs. broke up with me last Dec. I think all the medical problems and surgeries became too much for him. (I've had a total of 7 surgeries in the past 5 1/2 years.)
You really need to see a hepatologist if you can find one in a nearby city. If you are unable to find one, then go to a gastroenterologist (GI doc.) You need to have your condition closely monitored. I assume you no longer drink. Try to avoid anything that is hard on the liver, such as beef (the liver has to work really hard to break it down.) I mostly eat fresh fruits and vegetables, with chicken or shrimp about twice a week. I eat eggs, nuts, beans, and cheese for protein.
Bmmmw, your husband needs to see a nephrologist (kidney specialist) to monitor his polycistic kidney disease, and a hepatologist or GI doc for his liver problems.
Hugs to all,