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Lisa (@techi)

Portal vein

Digestive Health | Last Active: Mar 7, 2018 | Replies (63)

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@techi

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

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Replies to "I don't know if l am in the right group. But l was diagnosed with elevate..."

@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

Well so far nothing has gone to my brain. In 1997 l was told l had viral encephalitis. Then when l went to the Mayo Clinic my neurologist Dr McEvoy you might know her. She told me in 2014 in my chart it said l had autoimmune encephalitis, encephalopathy also and so many other diagnoses. She said my neurologist in 2014 didn’t read my chart he just assumed l had conversion disorder. So after l went through all these test and doctor which l am very thankful she said l was misdiagnosed So they think it was my ammonia levels that made me fall out, hallucinating, and cognitive decline, also depression. So when l came back home l went to my gp and he doesn’t know l went to the Mayo Clinic the last thing we discussed l was going to John Hopkins and l probably would have because l heard about a new encephalitis clinic there in the US. But the Lord had another road for me to go because my appointment was setup right away. So when l told h l needed a new gasterentogist he sent me to a liver clinic that does transplants so l don’t know what he’s doing. So l really can’t wait to get back to Minnesota. My internal medicine doctor always said l want you to come here. So l don’t know if l have a fatty liver. No one has said anything. They wanted me to come back this month but when we said November nobody seem to think that would matter. So l pray l don’t have to have a transplant but if that’s what l have to do then l will. I’m trying to lose weight and keep my pressure and ammonia level down. Which l can’t tell because l am not getting it tested regularly. The last time l had my levels checked was in Aug so l guess that’s alright. I don’t know how often that’s suppose to be read. And also the neurologist said my ammonia level may fluctuate. And l think that’s very true. It’s so weird you can walk alright for awhile and then you may get wobbly or just fall. So then you become a housebound person. So.l am blessed l can get out a few times a week but it always have to be with someone. But even though l really can’t complain l am blessed to still be here.

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