Portal vein

I don't know if l am in the right group. But l was diagnosed with elevate ammonia. It's a kind of liver disease and my gastenerologist did a biopsy to see if l had cirrhosis of the liver. He told me no but the symptoms of cirrhosis well that sounds good. So with this extra vein l had to.have a procedure to put a shunt on it. When l had the procedure they found put l had five extra veins so now l have 5 stunts. I went to the Mayo clinic and the vascular doctor said one of the shunt had expanded and if it's to wide if you bleed then it can go to your heart and then travel to your brain and that's life threatening. So he said they didn't do the procedure correctly and he would have to speak to the team to see what to do. If it's not two wide we can leave it for now or if it's to wide then we will have to do another procedure. He asked me was my doctor checking on the shunt because they have to, to make sure it doesn't get to wide or to tight. He told me to make sure l keep my appointments because this is very important. Well I finding out that in three visits when l had to come to the Mayo Clinic l know more then l knew for over 20yrs. Very sad, but l am very bloated my legs swell when l walk to much and it's even hard to walk because my foot hurts. But l don't know if it from the surgery l had or not. And l been having 2 kidney stones that won't pass since 2014. I thought doctor were suppose to do something if it doesn't pass. And my doctor is so clueless. The only reason l still have him is l needed him to refer me to some doctors. And l wanted a certain neurologist and he send the referral and they sent me back to the one he sent me to before. I asked them why and they said doctors in the same field in the same office don't want to take someone else's patient. So you can't go to who you want to. So he referred me to the liver clinic where they also do transplants instead of the gastro clinic l use to go to. So l don't know if he thinks it could be something else because l didn t tell him l went to the Mayo Clinic or them about him because l wanted to find out about all the diagnoses l was told. And God blessed the neurologist at the Mayo Clinic said l was misdiagnosed. Well that's nice to know. And another thing was l called my pharmacy about refilling my medicine for reflux which l don't know why 8pm talking. Probably because my pressure was high. I accidentally called the corporate office and found out the medicine had been recalled. Isn't that nice. They said call your local pharmacy and get the information from them. They never told me the name. I asked the pharmacy twice and both times they told me their was no new recalls. So they refilled the medicine and l didn't find out until l looked.on tv and heard accidentally or may be a blessing. I liked blessing, and they refilled my medicine 8 days ago and l was told by corporate their was a recall and they didn't tell me. So l been talking the meds up until yesterday so now l won't take it anymore but instead of telling the pharmacy l will be telling a lawyer. Anyone knows a good one? And l don't know if this is what been causing all my problems because l never had liver problems. When l asked my gastenerologist how did l get this problems with my liver he said it the meds you been taking because you don't have hepatitis A,B or C and you don't have a family history and l was only allergic to codeine and now since 2014 l have along list and the doctors said l can't give you practically no meds. And they are scared to give me anything because l went into cardiac aresset when l was given a med l was allergic to
So now l don't know if my bloating and stomach pain can be from my liver. And l tried to look on line and it's very rare and l see websites about dogs having it. And l am definitely not part of the dog family. So if anyone know something about this, would you please tell me. I know your not a doctor but even my general practice doctor doesn't know anything and l guess some research and some don't. They just want the money and not the patient

Hi @techi,

I've been remiss in answering your post, and wanted to assure you that you are in the right group; thank you for sharing your history. I've merged the two messages so as to make it easier for fellow Connect members to respond and share their thoughts.

Here's some information about elevated ammonia levels: "The pathophysiology of hepatic encephalopathy is complex and multifactorial, but is strongly associated with hyperammonemia, which develops when gut-derived toxins, particularly ammonia, bypass a failing liver, enter the circulation and cross the blood-brain barrier. Ammonia is a byproduct of the metabolism of nitrogen-containing compounds and is neurotoxic in high concentrations.

Normally, the liver clears most of the portal vein ammonia, converting it into glutamine and to urea, which is excreted in the kidneys. But patients with liver failure or cirrhosis with hypertension or portal-systemic shunts aren't able to metabolize ammonia effectively, leading to increased levels in the blood and the resulting effect on brain function."
http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/ornithine-phenylacetate-may-reduce-ammonia-in-hepatic-encephalopathy

I'd like to invite @contentandwell, and our Mentor @rosemarya as they have discussed various symptoms and conditions related to the liver, and may have more insight for you.

Thank you so much for the links. My gastroenterologist at home said l have the symptoms but not cirrhosis and that's what the vascular doctor at the Mayo clinic said also. He told me the radiologist here who did my stunts didn't do it properly which l can believe. So l am suppose to see the gastroenterologist at the Mayo Clinic. And the vascular doctor was surprised that no one was following up with me. Again l am not surprised. So l might have to have the procedure done again. But l am definitely praying that l don't but if l do l am in the Lord's hand and he is in the doctors hand.l have been looking up somethings but this has been a help too. You must be informed before you go to the doctor so you will ask the right questions. I will definitely get with these two people you sent me so l can hear from them through their experiences.

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

Well thank you rosemarya for asking. Right now l haven't confided in my general practice doctor about me going to the Mayo Clinic. Because when l first was diagnosed in 2014 l had hyperammonia he went and changed my chart to say l had it in 2012. Then l have been falling since 2009 when l first started seeing him and he did send me to physical therapy a couple of times and then l tore my cal and my orthopedic surgeon told me this in 1 visit and l had surgery the next week. In which since l have been telling my gp that l was still falling he finally wanted to run test and then he wanted to refer me to his orthopedic surgeon to late l told him l was scheduled for surgery
Then he had all these diagnoses on me that previous doctors have said and l know that what some doctors do but others want to know for sure. So now l am in a delimma l am gaining to much weight and l know it's fluid. I don't think it's the one shunt that is open to what degree l don't know. That's why l am having a consult with the gastroenterologist at the Mayo Clinic. Or even what doctor to see here. That's what l was just talking to my daughter about because she works at a hospital. And l would go to the hospital she works at but they have it there that l am psychotic which the Mayo doctors ruled out and said l was mis diagnosed. Then like l said l had all surgery but now my hip to my ankle hurts. I'm not concerned at the orthopedic hospital because they also thought the psychotic issue was true after they heard about the hyperammonia. So l think l need to be slowly taken off the meds to see if l am having another reaction or if it's just not working. But right now l am not telling any of my doctors about the Mayo clinic until l get the whole picture as they would say. Oh and l got a note from my neurologist about my concerns of my diagnoses because I just didn't know what l had. Most of my diagnoses was put on my chart when l was unconscious in the hospital. So she wrote a letter about me being misdiagnosed and l think she was even surprised about how much they were wrong. They are saying it was from the shunt being open but they need a second opinion from the gerentologist because l haven't received a call from the vascular doctor saying everything was definitely ok and l don't need to come. I tried to find out by email. So when the neurologist gave me the letter she said l don't know how they would change the diagnoses. She told me they didn't read your chart because it said you had autoimmune encephalitis, and hyperammonia. So l have to leave all this to God because you could lose your mind and life is to short to do that. So it seems like all my doctors can't figure this out but the Mayo doctors are really digging into this and that what medical should be like. I know they are not God but the bible say seek and you should find and knock and the door shall be opened. And l did seek the Lord to go to the Mayo clinic because I was going to go to John Hopkins and when l knocked the Mayo clinic called me in one week and l found the beginning of my misdiagnosed and now the beginning of my shunt that was performed incorrectly and the followup l didn't get here and should have. So if aging weight and having joint pain is part of hyperammonia l would appreciate you telling me from your experiences. I Love connecting with others to get more information that they went through not saying you or won't have the same issues. Thank you so much

@techi Hi again, Lisa. One of the things we always learn too late is the question, "Which doctors will tell the truth, and which will lie about you?" I started trying to get into OHSO (Oregon Health Sciences University) in about 2010 or 2011. The doctor there said I had nothing wrong, and that I was just a "psycho." I tried again in 2015 and 2016, and failed. Eventually I ended up at MAYO AZ and they missed my diagnosis entirely. So I tried again at OHSU, and they still refused to see me because I "went to Mayo before I tried OHSU." Now my kidneys are failing, and the local doc says it is because I have not sought out the medical care I needed. Do you suppose OHSU and Mayo will share the cost of my dialysis?

@techi, I always have someone with me when I have a stressful appointment. In my case, that person is my husband. When I get nervous or am not feeling real well, I simply do not remember what the doctor tells me. So my husband with me to listen to the diagnosis and the treatment options, and also ask questions. He does not go into the procedure room.

So I am wondering about you, Lisa. Who do you have who could accompany you to your appointments?
Rosemary

Well sometimes my husband and he will just talk. I ask him to listen and write things down that's like talking to a shoe to move. When l was in the hospital unconscious my daughter asked him to write down everything because she wasn't there she had to work or go home and he didn't write one thing. I'm so blessed my memory is starting to come back and l know we don't remember everything that why l always tell him to right it down. Because even if he talks to any doctor what happens and maybe l would have blacked out l don't really believe he knows or remembers what happened.

@techi Lisa, have they eliminated the possibility of fatty liver? I had cirrhosis fromn fatty liver which progressed to NASH.
Prior to transplant I did have HE from the ammonia going to my brain. To me that was the worst thing I have endured.
I hope they manage to diagnose you and help you with these symptoms. If you have any questions about HE please feel free to ask.
JK

@techi I asked my husband to journal my HE episodes and he did but he would often wait and then his memory would be vague. Despite my condition I often remembered them more clearly than he did, except when I was at the worst of the episode, which I have little or no recollection of. I have no recollection of getting to the hospital during a bad one. I hate it when he accompanies me to the doctor because he tries to control me and stop me from asking questions, or making comments. Then he will ask questions that have already been answered. He insists on going though.
JK