1. < Digestive Health

Portal vein

Posted by Lisa @techi, Sep 21, 2017

I want to know if anyone had shunt put on their veins in the Liver? I had a TIP procedure and the radiologist said l had 5 extra veins. I went to the Mayo clinic and the doctor was concerned about one of the veins and then he told me they didn't do the procedure correctly. So l am going back to have another procedure but what l was reading is the doctor should see you often to make sure everything is alright with the stunts. My gastroenterologist retired and you would think l would be referred to another so after l came back to the Mayo Clinic l had to tell my doctor all the doctors l need tosee. I wonder who should get the pay. So now he decid. to send me to a liver clinic instead of a cardiologist should l be concerned? I haven't told him about going to the Mayo Clinic until l get all the results back because so far all that they said was my diagnoses wasn't. Even the neurologist l saw was surprised. That was God all the way. So l just wanted to know if their is shuts not put in correctly what do they do? The radiologist l had said l don't have cirrhosis but the symptoms of cirrhosis. When l went to the Mayo Clinic they said the same. When l had my brain injury they said it was autoimmune encephalitis. I really don't know what l have and l really think no one else does. So l guess l am a problem they can't figure out only the Lord knows and he showing man you need me.

Interested in more discussions like this? Go to the Digestive Health Support Group.

JK | @contentandwell | Feb 28, 2018
In reply to @techi "@contentandwell I have never seen a medical staff as so clueless as the doctors here. And..." + (show)
@techi

@contentandwell I have never seen a medical staff as so clueless as the doctors here. And to get appointment its very hard because the doctors are retiring or leaving the medical profession altogether because of our healthcare system. But my Hepatologist said l had HE and elevated LFT but he said everything ok right now. He ran a mri and all my lab works. And he set my next appointment in a year and l can see all the things he wants you do before you see him. I have to have lab a week or 3days before my appointment and the the day of my appointment a MRI then you see him. And the hepatologist at the Mayo Clinic said one shunt the blood is dripping so little hes not worried right now. The hepatologist thinks my HE is from my brain injury, first viral encephalitis and then its autoimmune encephalitis. Thats because my ana is extremely high but they say my HE is not active but just fluctuating from previous infection. Its been such along time it all started in 1997. But seemly its doing okay but they are watching me because what l am going through its like its active. And also one shunt the blood is dripping real slow so they are not ready to do the procedure again. I dont know if they think they would have to do my TIP procedure again or if it might get worse that l might have to have another form of treatment. They can do a different kind of procedure before they have to talk about transplant. Then the doctors here thought l was having MS, carpal tunnel and l was psychiatric because of falling and hallucinations. I told them if you fell as much as l you would hallucinate. Then a psychiatrist said l was depressed and l had anxiety. I asked her has she ever been depressed? After that she was finished with me. And all these are symptoms of brain injuries, liver disease, autoimmune disease and so many other diagnoses. And when you are trying to tell doctors whats going on and they dont listen then you would be depressed or have anxiety. Everyone goes through that except Jesus. So sometimes l am not very liked b y doctors because l have to be my own advocate and not let them feed me all their junk. If you dont know l am okay with that just dont waste my time or money. And it seems like when you go to the doctor everyone has to run all these test instead of just looking at your reports and the one that are abnormal then do those over again. If you move to Boston are you going to go to john hopkins? I was going to go there first but l was having problems with my doctor referring me there. Then l called the Mayo Clinic and l had an appointment in 2wks. I wasn't denied and have to get a referral. And l am getting information from the liver foundation. I want to find about all the latest treatments. Have you already have a transplant? I am not at that point and my hepatologist is not talking about that right now. So l am trying to learn all l can because l know that not easy to go through. A good friend of mines is on the kidney list and he doing dialysis right now so l try to lift him up. He had a transplant before so l dont know if he has to wait longer. I know now they are doing transplant on living donors. They say rejection is very low and you usually dont have to take meds for rejection. So l will be praying for you to get better. Have a good evening.

Jump to this post

@techi Lisa, it sounds like things are as under control as they can be. If your HE episodes are from your brain, but you are waiting to get on the liver transplant list, what is wrong with your liver? Also you say "ana is extremely high". What is ana?
I live in southern NH so we can just go to Boston for appointments even though the drive can take two hours mid-day. Johns Hopkins is in Maryland.
I am happy for you that you will be going to Mayo, I am sure they will get to the bottom of things.
JK

REPLY
Lisa | @techi | Mar 7, 2018
In reply to @techi "@contentandwell I have never seen a medical staff as so clueless as the doctors here. And..." + (show)
@techi

@contentandwell I have never seen a medical staff as so clueless as the doctors here. And to get appointment its very hard because the doctors are retiring or leaving the medical profession altogether because of our healthcare system. But my Hepatologist said l had HE and elevated LFT but he said everything ok right now. He ran a mri and all my lab works. And he set my next appointment in a year and l can see all the things he wants you do before you see him. I have to have lab a week or 3days before my appointment and the the day of my appointment a MRI then you see him. And the hepatologist at the Mayo Clinic said one shunt the blood is dripping so little hes not worried right now. The hepatologist thinks my HE is from my brain injury, first viral encephalitis and then its autoimmune encephalitis. Thats because my ana is extremely high but they say my HE is not active but just fluctuating from previous infection. Its been such along time it all started in 1997. But seemly its doing okay but they are watching me because what l am going through its like its active. And also one shunt the blood is dripping real slow so they are not ready to do the procedure again. I dont know if they think they would have to do my TIP procedure again or if it might get worse that l might have to have another form of treatment. They can do a different kind of procedure before they have to talk about transplant. Then the doctors here thought l was having MS, carpal tunnel and l was psychiatric because of falling and hallucinations. I told them if you fell as much as l you would hallucinate. Then a psychiatrist said l was depressed and l had anxiety. I asked her has she ever been depressed? After that she was finished with me. And all these are symptoms of brain injuries, liver disease, autoimmune disease and so many other diagnoses. And when you are trying to tell doctors whats going on and they dont listen then you would be depressed or have anxiety. Everyone goes through that except Jesus. So sometimes l am not very liked b y doctors because l have to be my own advocate and not let them feed me all their junk. If you dont know l am okay with that just dont waste my time or money. And it seems like when you go to the doctor everyone has to run all these test instead of just looking at your reports and the one that are abnormal then do those over again. If you move to Boston are you going to go to john hopkins? I was going to go there first but l was having problems with my doctor referring me there. Then l called the Mayo Clinic and l had an appointment in 2wks. I wasn't denied and have to get a referral. And l am getting information from the liver foundation. I want to find about all the latest treatments. Have you already have a transplant? I am not at that point and my hepatologist is not talking about that right now. So l am trying to learn all l can because l know that not easy to go through. A good friend of mines is on the kidney list and he doing dialysis right now so l try to lift him up. He had a transplant before so l dont know if he has to wait longer. I know now they are doing transplant on living donors. They say rejection is very low and you usually dont have to take meds for rejection. So l will be praying for you to get better. Have a good evening.

Jump to this post

@contentandwell My ammonia levels were high in 2014 then when my gastroenterologist saw my levels were high he said l had encephalopathy so l had to have a TtP procedure because he saw one extra vein in my liver but l still have encephalopathy at first they had my diagnoses as viral encephalitis in 1997 then autoimmune encephalitis and encephalopathy this was in 2014. So when l went to the mayo clinic they said they didn't see anything active. Then when l saw the vascular doctor he said blood in one shunts was not flowing and he thought l was going to have bleeding in the stomach. When l saw the hepatologist he saidvits dripping but very slightly that they wouldn't do the procedure over unless l was having symptoms of encephalopathy again. He said my ammonia levels will fluctuate which is normal then when l came home to see the hepatologist here thats when he said l have HE. I had herpes before so l was told it would stay dominate in your body and even though its rare you can get encephalitis. I live in Oklahoma and we are behind in the medical system. I use to live in N.Y. and l was told about having shingles in 1978 and then they said herpes zoster which is part of shingles. Here in Oklahoma they just started talking about shingles in the last 8yrs. And they are not talking about autoimmune encephalitis or encephalopathy. There's only one doctor in the state of Oklahoma that l am aware of that knows about autoimmune encephalitis disease and l don't know if she went through training with the mayo clinic or what? But she is listed as one of the doctors in Oklahoma under the autoimmune encephalitis alliance. And we have very few neurologist here. They are trying to get more but l dont know if its because of pay or more people with dementia and Alzheimer's. So l still see a hepatologist and he said l dont need to see a neurologist and they think all my problems were do to my medicines because l have so many allergic reactions. And just to think l was only allergic to codeine for years until 2014 when my ammonia levels were elevated. My hepatologist also said l have and elevated LFH l think that the right way to say it. And my rheumatologist said my ana is still high. So they told me thats normal when you have an autoimmune disease. So l am praying. I ready to leave Oklahoma and l keep asking God where he wants me to go.l wanted to go to MI, Boston or TN but l am just waiting until he shows me but until then l am just getting my house together for when l move.

REPLY
JK | @contentandwell | Mar 7, 2018
In reply to @techi "@contentandwell I have never seen a medical staff as so clueless as the doctors here. And..." + (show)
@techi

@contentandwell I have never seen a medical staff as so clueless as the doctors here. And to get appointment its very hard because the doctors are retiring or leaving the medical profession altogether because of our healthcare system. But my Hepatologist said l had HE and elevated LFT but he said everything ok right now. He ran a mri and all my lab works. And he set my next appointment in a year and l can see all the things he wants you do before you see him. I have to have lab a week or 3days before my appointment and the the day of my appointment a MRI then you see him. And the hepatologist at the Mayo Clinic said one shunt the blood is dripping so little hes not worried right now. The hepatologist thinks my HE is from my brain injury, first viral encephalitis and then its autoimmune encephalitis. Thats because my ana is extremely high but they say my HE is not active but just fluctuating from previous infection. Its been such along time it all started in 1997. But seemly its doing okay but they are watching me because what l am going through its like its active. And also one shunt the blood is dripping real slow so they are not ready to do the procedure again. I dont know if they think they would have to do my TIP procedure again or if it might get worse that l might have to have another form of treatment. They can do a different kind of procedure before they have to talk about transplant. Then the doctors here thought l was having MS, carpal tunnel and l was psychiatric because of falling and hallucinations. I told them if you fell as much as l you would hallucinate. Then a psychiatrist said l was depressed and l had anxiety. I asked her has she ever been depressed? After that she was finished with me. And all these are symptoms of brain injuries, liver disease, autoimmune disease and so many other diagnoses. And when you are trying to tell doctors whats going on and they dont listen then you would be depressed or have anxiety. Everyone goes through that except Jesus. So sometimes l am not very liked b y doctors because l have to be my own advocate and not let them feed me all their junk. If you dont know l am okay with that just dont waste my time or money. And it seems like when you go to the doctor everyone has to run all these test instead of just looking at your reports and the one that are abnormal then do those over again. If you move to Boston are you going to go to john hopkins? I was going to go there first but l was having problems with my doctor referring me there. Then l called the Mayo Clinic and l had an appointment in 2wks. I wasn't denied and have to get a referral. And l am getting information from the liver foundation. I want to find about all the latest treatments. Have you already have a transplant? I am not at that point and my hepatologist is not talking about that right now. So l am trying to learn all l can because l know that not easy to go through. A good friend of mines is on the kidney list and he doing dialysis right now so l try to lift him up. He had a transplant before so l dont know if he has to wait longer. I know now they are doing transplant on living donors. They say rejection is very low and you usually dont have to take meds for rejection. So l will be praying for you to get better. Have a good evening.

Jump to this post

@techi Lisa, you certainly have had a very complex history. It's hard to know who is right and if they are missing something but although I have never been to Mayo myself everything I have ever heard is so very positive. I believe it's rated as the number 1 hospital in the country by one rating system (I have seen Mass General rated as #1 on a different one), so I would feel that what Mayo said is probably accurate. There are some big cities in Oklahoma, I am surprised that some of the hospitals there are not more knowledgeable, but here in NH too there is a lot of ignorance about certain conditions. We fortunately are close to Boston though. As I have mentioned my PCP thought my HE was a neurological problem so I went to a neurologist. The neurologist was the first doctor who thought it was a liver problem. From what others have told me, a PCP who is doctor of Internal Medicine should have been more knowledgeable and a liver problem should have occurred to him because I had many symptoms. Family practice doctors who also operate as PCPs would be much less apt to figure it out, they are not as good at diagnosing, I have been told.

Good luck in choosing a place to move to, research the hospitals in each place and figure out which would serve you best.

I hope you have success in your search.
JK

REPLY
sfn1 | @sfn1 | Jun 13, 2023

Hi,
I'm 67 years old and feeling miserable right now, shingles has totally high jacked my life and there's no end to it.
The Varicella Zoster virus entered my body when I was 5 years old. After 62 years there's still no cure for any of the nasty retro viruses such as the Herpes Zoster or the rest of Herpes Virus family.
Why?
I refuse to believe that it isn't possible! We can clone a Human, we can build walking - talking and decision making AI entities, we can go to Mars, we can build amazing super computers but we let shameless, private money making companies control our cure and medicine!
Every time a small research company announces a promising breakthrough, they immediately get bought out by some intermediary pharmacy giant and the cure disappears and you'll never hear about it again...
We the people should demand from our Government a state of the art, NASA style approach medical drug and cure research facilities financed from our Tax Dollars.
This research facility must be Non Profit; no human being should be allowed to make profits on other people's pain and suffering nor delaying cure just because they would loose Billions of Dollars every year by loosing the sale of useless maintenance drugs.
Why this issue isn't being firmly debated in Congress? These are the important and real issues that every American should care about it...

REPLY
ottohunter | @ottohunter | Feb 24 10:18am

I just posted this in the "Elevated Ammonia Levels" section, but the comments here look like the are very similar, so posting here as well. Any advice would be greatly appreciated.

My father was recently diagnosed with elevated ammonia levels which are having an impact on his cognitive abilities as well as his gait. He has had a number of tests (MRI, CT, Bloodwork, etc.) that do not indicate any type of cirrhosis with his liver. Initially, he was seen by a neurologist due to his past history of stroke, but they have discounted any type of neurological problems and ran an ammonia test to learn that those levels are high. He is 77 years old. He is currently hospitalized and is on lactulose (20 ml 3x a day) and rifaximine (500 mg 2x a day). Initially his ammonia was at 99 umol/L and the past few days since starting lactulose it has been: 32, 96, 63, 84. The ups and downs of the ammonia counts seem to correspond with his "brain fog." The doctors are at a loss as to what could be cause the ammonia in the first place and the family can't understand why the ammonia is jumping up and down even though he is receiving medication to keep it down.

Does anyone else have any experience with a similar case and have any thoughts on either cause for the ammonia in the first place or additional treatments that might help reduce and keep the levels low?

Any and all advice is welcome. I can provide additional history and bloodwork information if that would help.

Thank you in advance.

REPLY
View MoreView Less
Please sign in or register to post a reply.