High ammonia levels with up to 4 day black outs

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moonbeam1969
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/30/2010 9:49 AM (GMT -7)   
skull   Since October, I've been having confusion then black outs that sometimes last 4 days. Then when "I come to" I find out from my family of everything I've done and how nasty I've been to them, to my horror. My primary doc started drawing my ammonias and they have gotten as high as 142, but I am very symptomatic at 66.  There is no doctors here in SC who will accept new liver patients. I am very upset by this and upset there seems to be no help!! How long will I have to live like this? Is my lifespan shortened? What am I to expect???????

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/30/2010 11:21 AM (GMT -7)   

Hello, Moonbeam, and welcome to the forum!  I'm sorry you are having problems with elevated ammonia levels.  What type of liver disease do you have and when were you diagnosed?  Is there a GI doc you could go to?  While a hepatologist is preferred, a gastroenterologist has more knowledge regarding liver disease than a primary care doctor.  We have a member here in NC who had a similar problem, and he gets seen at a major hospital's transplant center, though he is stable and not in need of a transplant.  (Sorry, I can't recall the name of the hospital.)  I am in FL and seen at Mayo's Transplant Center, though I've never been a transplant candidate.  So that is something you need to look into--a hospital that can treat your liver disease.  A teaching hospital can be a great resource.

Regarding the "blackouts."  That is most likely hepatic encephalopathy from elevated ammonia levels.  This happens with end-stage liver disease, but that doesn't mean you will die next week.  Patients can become quite beligerent and nasty during these spells.  The treatment is Lactulose.  Has it ever been prescribed for you?

There is a lot of information in the folder at the top of the page entitled Hepatitis Resources.  I encourage you to read that.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 7/30/2010 6:05 PM (GMT -7)   
Moonbeam,

I am not sure where in SC you are, but have you considered checking into Medical University of SC?? Down in Charleston, but I am sure there is a teaching hospital in Columbia as well......those would be the closest to you in driving distance from just about anywhere in the state. I know we have a member in NC, and I think he's seen in Winston Salem, but I am not sure. Hopefully, he can direct you. But, again, depending on where in SC you are, Charleston, Columbia or even Charlotte, NC may be the better bet. Also, consider Atlanta, GA.....they have several really good teaching hospitals. I am currently in TX, but grew up in SC, so I am very familiar with the area.

With regard to your blackouts, as Connie mentioned, it does sound like hepatic encephalopathy. You really do need to be seen by a GI doc or hepatologist that can give you meds to keep it under control.....lactulose and/or xifaxin.

You have in there, and please do check into Charlotte, Columbia, Charleston or Atlanta---depending on where in SC you are! Best to you!

Mer

moonbeam1969
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/31/2010 2:43 PM (GMT -7)   
smhair   smilewinkgrin yeah I have Hep C which i got from a hemodialysis patient of mine...diagnosed in 2005. I've seen a Infectious Disease doc and a GI. And yes I was on 6tbsp Lactulose. Docs are giving me the song and dance that I really am crazy, that the ammonias aren't indicative of anything and maybe I'm having seizures, so they discontinued Lactulose.Seizures have been ruled out 3 times. Ammonias continue to be a problem so the news yesterday was liver is "probably ok, but the ammonias should be evaluated"..No crap! So the only doc who seems to want to help me feel better is my primary doc. So I see her next week. Really tired of all this heehawing! Would really love to come across a very aggressive doctor. But from everything I'm learning, treatment for HCV would be more bothersome than helpful, that tyhere's no gaurantees and the blackouts will continue despite treatment. Am I correct bout that? Been down to Charleston...I'm from there and with my insurance I can only see idiots or they refuse to accept me as a new patient. Just sick of the runaround. Would love some straight up honesty. What should I prepare my family for? I have young kids...Thinking of some pretty drastic measures to get help...like have my husband call the police to come get me-I'm very combative and mean, he says-take me to hospital so a doctor will HAVE to treat me...PLEASE PLEASE advise..... confused

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 7/31/2010 2:53 PM (GMT -7)   
I am so sorry you are having trouble finding a doctor to treat you (or that has a clue as to what is going on). First and foremost......NO, you are NOT crazy!!! When the ammonia builds up in your system, it causes these problems. That is why it is SO very important that you STAY on the lactulose, because it is a binding medication that moves that stuff out of your system with your stools. (Sorry to be gross, but it is what it is). There is also an antibiotic medication called xifaxin that also helps with the ammonia issues, but it is a very expensive drug, and some insurance companies will not approve that medication unless they have "documentation of medical necessity". As far as the Hep C treatment goes, the treatment itself does make you feel horrible, but in the long run, it is VERY helpful!! Please do not dismiss it! You really do need to be seen by a hepatologist or GI doctor that is familiar with liver disease. Some people do the HepC treatment and go on to live healthy, happy normal lives. Something else that would be helpful for you is to monitor your diet.....lots of fresh fruits and veggies, watch your protein, like restrict your red meat, etc. Has anyone done a biopsy of your liver to find out what the extent of damage is??? If any???

Be careful having your husband call the police, because if they take you to a facility that is not well versed in how to handle the encephalopathy issues, you could just end up in the mental health facility.....speaking from personal experience with my husband!

I would SERIOUSLY encourage you to call your health insurance company, talk with them, tell them the problems you are having and get them to find you a doctor that will accept you. I have had to do that, too!

You hang in there!

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 7/31/2010 2:56 PM (GMT -7)   
Oh, one more thing......read the educational posts here. The more you arm yourself with information, the more you will know to talk with the doctors about. It also might be a good idea to have your husband or a family member or trusted friend go with you to the doctors office, as well.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 7/31/2010 6:09 PM (GMT -7)   
Dear girl... Mike kicked me out of the emergency room... out of the hospital and out of his life 6 years ago... then two weeks later... said he didn't mean it...but I never understood until the day he died and they told me what his ammonia levels were that 6 years earlier in the hospital... it had been the ammonia levels... then towards the end he was goofy...and I feel so guilty that I didn't catch... that... keep pushing and you desparately need to engage someone in your care other than yourself who can be ur advocate during these times.... everyone is different ... every walk is different... and u need care.. and asap... and u r not crazy... and MER is right on... get ur hubby on this forum to read and understand... ok... u r in my prayers.... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 7/31/2010 6:10 PM (GMT -7)   
Mike's ammonica level was 208 at the time of death... don't know what anyone else's were are... don't give up... keep pursuing avenues... and read here...
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/31/2010 8:03 PM (GMT -7)   

Moonbeam, I'm really sorry you are having such a problem getting proper care.  You are not the first person I've heard say that SC is not a good state to be sick in, especially without insurance or being underinsured.

I think you've gotten some good input from other posters.

If you can get the ammonia under control, you might want to see about the new hep C treatment becoming available next year that is having a 75% success rate and only has to be taken for 24 wks.  But of course you need a good health care provider before anything else.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 8/11/2010 8:46 PM (GMT -7)   

Everyone's system is different. When my ammonia levels reached the 60's, I would start noticing that I wasn't talking right, having problems not being steady. The first time I blacked out, my level was at 128. The last time, my ammonia level was at 395! When you blacked out, did your family not take you to the hospital? They should have, the physicians there would most likely have put you on Lactulose right away to bring your ammonia level down. You probably would have only been in there 4 days. If you have no insurance for hospital, they can get help from outside sources for you.

Next blackout you have, get to hospital. Tell your family to call ambulance.  I more or less provided my primary care physician with information about Hep C. She would keep in touch with my liver dr. Now, since I had the transplant, any dr I see, has to talk to my transplant coordinators. But, they don't mind.

Good luck to you in finding you a doctor. Hope you find one, and soon.

Sandy


God never gives us more than we can handle.
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