Ammonia Level Question

[Sevetts]

I just got my ammonia levels back.  They are 78.  I know that normal is between 11-35.  78 doesn't seem that much higher than 35.  I know in some labs just a few numbers off isn't that big of deal, but in other labs it's major.  So how bad is 78?  Is this a dangerous level?  I know my Dr. wants to "up" my Lactulose but when I told the nurse that called that it really shoots up my blood sugars, she has to go back and talk to the Dr. before changing it.  Also, this is just my PCP Dr.  I go to a GI dr that specializes in hepatology on Monday.  That is the closest I could get to a hepatologist in the time frame I need for the surgery clearance.

Shelley

[Sevetts]

Thanks Randy, I did have the appointment with the new GI and the Cardiologist.  Neither want to ok me for surgery.  The GI said NO surgeries because of the HE would probably put me into ICU immediately after surgery...as well as she thinks my liver is to decomponsated.  I told her I was not loving the effects of lactulose, she did switch it to the xifaxan...but when I went to fill it, my cost after insurance was over $400 so ummm didn't get that.  The pharmacist is going to call dr in the morning and see if he can switch it for another med.  I appreciate all of the triggers you gave for it.  I definitely have to write those down.  

May I ask another question of you while you're here?

I am again confused.  I guess instead of one biopsy in my liver, they took 4 from all different areas.  I was told there is not one part of my liver that is not cirrhotic.  That sounds rather bad to me.  Besides that, I have slight ascites (on waterpills), my stomach is not emptying for some reason, she is ordering a test for that, I have HE and was told I am decompressed.have the rashes  etc etc.  No varices yet though... how can my liver be this bad but my meld score only be at 7?  How can it be so bad that I am not to have ANY surgery unless it is life or death because of liver...but still meld at 7.  Also my platelets are pretty low.  I am also getting a hida scan tomorrow,.  But my entire digestive system is now effected... enlarged speen also.  I am so exhausted and all of these appointments and procedures and info is exhausting me even more.  

any info would be awesome

Shelley

[rpooo]

Hi Shelley,

Cirrhosis is divided into two stages: Compensated and decompensated.

Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.

Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.

Such symptoms include:

Ascites (fluid buildup in the abdomen)

Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)

Spontaneous bacterial peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.

Hepatic encephalopathy (brain dysfunction). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma.

Jaundice. This yellowish cast to the skin and eyes occurs because the liver cannot process bilirubin for elimination from the body.

Liver cancer is a serious long-term risk with cirrhosis.
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This is why it is critical that you are being treated by a hepatologist at a transplant center where you will have the best treatment made available to you. Your treatment will depend on your diagnosis determining your prognosis. Despite the good intentions from any other doctor they just don't have the training required to treat a cirrhotic individual. Liver disease is very complicated and every patient is different. The liver performs over 500 vital functions daily. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) Any medical treatment needed should always be approved by your hepatologist first to include prescription medications and certain OTC drugs and certainly not to omit any invasive treatments.

Your liver biopsy is used to determine you have cirrhosis, your symptoms and blood labs are used to stage your cirrhosis. With your symptoms of decompensation a MELD score of seven seems unlikely. You can obtain a copy of your lab testing (at no charge) as you should every time for your own records anyways and calculate your MELD score yourself. This link will help you do so: http://www.mayoclinic.org/meld/mayomodel6.html

Once you have obtained a few copies of your lab results you can begin to chart them to compare as I have done here: http://www.medhelp.org/user_photos/show/358616?personal_page_id=1830091

This will help you better monitor your disease. Finding the cause of your cirrhosis is critical in hopes of discontinuing any further progression if at all possible.

I see that you have a lot of other health concerns so other factors for determining the cause of your ascites should also be considered. These causes are listed here: http://www.nlm.nih.gov/medlineplus/ency/article/000286.htm

It's very tough to manage everything going on right now so I am glad you found us here. We are glad to be able to help the best we can and I hope you will continue to let us know how things are going. Take care Shelley!

Randy

[rpooo]

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Use "Google" to search for "Discounts on  Xifaxan/Rifaximin"

Take a look at these:

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http://www.patientassistance.com/D8826-xifaxantablets200mgrifaximincoupon.html

http://medicationdiscountcard.com/drug/xifaxan-coupon

[Sevetts]

Thanks for all of the info Randy and for the coupon site, I know that will certainly come in handy as will the chart.  I'm going to call my insurance company today and see if I can refer myself to the U.W.  I hear they have a great transplant center.  Whether or not I can get a transplant I know that's the place I want to be.  And I believe they are the ones to make that determination, not the GI Doc or my PCP.  I do also have the inflammation of the stomach lining.. just an fyi thing.  :)  But I believe my top concern right now is getting clearance to get this ugly tumor out of my spinal cord.. which is proving a lot more difficult than I thought it would be.  One day at a time right :)

[rpooo]

That would be great if you could get in to U.W. It seems like your PCP could refer you expressing the urgency to get you in right away. I want to make sure you know that many of us here seek treatment at a transplant center but it doesn't mean we will need a transplant and hopefully you wont either.

I can understand the urgency but I think both are equally important. The transplant center should quickly be able to determine if it's safe for surgery or maybe present a quick treatment option. Are you managing a healthy diet in a effort to bring this ammonia level down?

I admire your strength Shelley, one day at a time is exactly right!

[Sevetts]

I'm trying to do a healthy diet...I am far from being there, but a lot closer than I was a month ago.  It's tough because I have my husband, a chocoholic and my daughter in law..ice cream addict, and my 2 year old grandson and my 7mo granddaughter living here.  They are not thrilled with meal plans...I try not to bring things in the house that I shouldn't have, but with two other adults who just don't seem to get the importance of it.. bringing things in, I'm finding it difficult.  Especially when I have a real hard stressful day and think..oh forget it, I deserve this.  My fault totally.  I need more will power and I need to change my thinking... to instead of "I deserve this"  to "My body does not deserve this".  But my mind goes into thinking that I am trying to be strong in this area and in that area...this is just to many areas to be strong in all at once.  So I am in a battle with my own mind...and unfortunately I have a strong mine.  ha ha ha.  Not funny really, but gotta get the  humor where I can.

Any suggestions for high fiber meals/snacks and/or healthy meals would not be turned down ;)