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.

@rosemarya

@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

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Rosemary yesterday l went to the neurologist l didn’t want to go to this one. My doctor was suppose to refer to another one l perfect. They called me to setup my appointment and they said l was going to the one l didn’t want to go to. They told me doctors don’t like taking another doctors patient. Well anyway l go to him and he asked me what l wanted to see him for. I told him l want a release to go back to driving but l had to come to him because my doctor didn’t fill out my release form and l can understand he wants me cleared by a neurologist because he is filling put the release. And l also wanted to know if because l was falling due to hyperammonia and l was told l had autoimmune encephalitis disease and l possibly had the residual from all my problems. He looked on my chart and told me you have bipolar and schizophrenia. I told him l was cleared of that from the Mayo clinic. I didn’t want to say where l went for a second opinion but l wanted to also be trueful. He asked me when l went and what test they did. I didn’t get into that with him. Then he looked up my chart and was telling me neurologist and psychiatrist l saw. I couldn’t remember there names because l was unconscious in the hospital at the time and l told him. I was telling him about the conversion they said l had and can it be from my liver issues. He told me when you.fell in January they checked it and it was normal. I didn’t tell him the internal medicine doctor at the Mayo Clinic said in 2015 before the shunt s were put in he wanted me to have an ultrasound of my stomach because when we were on our way home the internal medicine doctor wanted me to have it done. So l did get it done and then that’s when the vascular doctor wants me to come back. I asked my general practice doctor to refer me to a gasterentogist since mines retired. So he did and then l got a call from the gasterentogist clinic where my previous gasterentogist worked. I know l am stressed and maybe l am have anxiety but it because of all the lies. Every time l look at my records they have different diagnosis on them and dates l have seen other doctors and my allergy list. I have gone through this with every doctor and when my husband goes with me he also shows them the list. I.am very careful of medicines l take. I will look it up and l also will ask the pharmacy. So l really don’t know when they say one of your shunt is open so that’s why the vascular doctor wanted me to have an ultrasound of my stomach to see how wide and he said he didn’t know if that’s why l am having all these problems. Did you have shunt s and where they also not holding your extra veins close? And l want to know if you have regular visits with your gasterentogist? Because the internal medicine doctor was surprised know one has seen my since 2016 and that when my other gasterentogist retired. And when l tell them l never had anything wrong with my liver because when l was on antidepressants l had to get test to make sure l didn’t. My other gasterentogist when l asked how l have this hyperammonia he told me it was from the meds. When all this began l only was allergic to codeine now it’s about 15 meds l am allergic too. And so this neurologist showed me when my doctor filled put my release form he said in August and the time he had my license suspended is when he told me l couldn’t work or drive. And at the Mayo Clinic the doctor l know who knows about encephalitis is Dr Britton but l don’t know if you have seen one neurologist can you change to another or if one team is not sure do they consult with different doctors in that field? But they did put on my chart at the Mayo Clinic it could have been allergic reaction. And you don’t know what meds you are allergic to because they all say the same reactions. So can you tell me what you had to do? Thank you.

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@rosemarya

@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

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@techy, Hi Lisa. I feel bad that you are still in the midst of such confusion and stress with your medical issues. As an outsider, as a patient myself, I think you need to work to get all your doctors “on the same page” so that there is a consistency in your overall care. Sounds like you have too many opinions here that are not connecting. If I were you, I would make the medical release between doctors happen and these days it should be relatively easy with technology everywhere. You might be able to have the release forms mailed to you so that you can sign and return. That way you do not need to travel to the office (sigh of relief).

From my own experience, I also like to read my doctor reports. I have to admit that I do not understand most of the language at all. One thing that I have learned is that office visits and reports are a accurate picture. of what is happening at that particular time. For example if I looked at my reports from a year ago – they do not reflect what is going on today. Does that make sense? So I would encourage you to not get stressed over some of the medical jargon.

As far as the two doctors in an office thing – Yes, I know what you mean. In some offices, you see a variety of doctors; in others, you are assigned one. I don’t know why this is the way it is. It can be uncomfortable and awkward at times.

I am sorry to confuse you about stents. I included that only to point out that sometimes they don’t do the job they were intended to do. I think that is the issue that was being discussed at that time.
No, I am not familiar with neurology department.

Lisa, I hope this has been helpful.
Rosemary

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@rosemarya

@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

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Rosemary l understand but what l don’t understand is that when you see a doctor in the same hospital and there computers are connected some times it takes awhile for them to acess the communications for instance when you go to the er in the medical connection. Then when l had my ankle surgery my doctor told me it would take 6months before he gets it. So you either have to go and get it and l can’t drive so l have to wait until my husband is off or l can have it mailed to me and either send to the doctors office by mail
And my general practice doctor his office they don’t always get in my chart. So l always have to make sure he knows what doctors l have seen and make sure my allergy list is always up to date. I have had several times they didn’t have all my allergies. Even just this week l saw before he had the correct date when l had my knee surgery and that was 4yrs ago and now they have it one year earlier. I’ve also seen that he said in 2012 is when l had my liver disease at first they had the right year now it’s 2yrs before. And l want to change my doctors but because l went to the Mayo l wanted some of the diagnoses that were not true changed and also l wanted to get my release to drive. Also if he says it takes 6months they can have the records faxed. It only takes minutes. Now l have l am being followed up with a gasterentogist after a year and l have had about 5 neurologist some retired, l don’t like or l don’t believe there diagnoses. And l had one at my daughter’ job that would talk to her and not me and l feel if l am the patient you should talk to me even if l passed out but them become conscious again. That to me is so rude and not professional. I also wanted to know how to wean myself off my medicine because my general practice doctor really can wean off the medicine he prescribed me and any other doctor who is a of different professions l have to go to them. And when l asked this neurologist he told me l don’t know your history even though l saw him before and he can read my chart on the computer and he didn’t even give me my discharge papers and this has happened twice before and l had to go to medical records to get it. I am just so discusted with the headache in this state. Our medical rates low and l usually like to go to doctors that has their degree from this state and that isn’t how you should have to select your doctors. So l know you are right completely. And when the doctor at the Mayo clinic say they didn’t do your procedure correctly and you have to go to another state is hard to think that’s what happened. So now l have to come the 4th time to the Mayo clinic which l am so blessed he saw that. And l saw that at the Mayo Clinic they ask questions and doctors work together. Especially when one doctor might not seen a symptom before or illness. And l know doctors aren’t God they are always learning and what one patients illness or symptoms are not the same so you must listen to the patients. Some people go to doctors just for drugs but some come to get a diagnosis and know what to do with their health so they can get better. That why l always have to listen to other preachers, music and alway remember what Job went through and how he came out. So l guess this is what l have to go through so l can help someone else to let them know they can make it. You have always give me good advice. Thank you. I will let you know what happens when l go to gasterentogist at the Mayo clinic and also in my home state.

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@rosemarya

@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

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@techy – Lisa, I do not understand how all of the medical computers work or how the systems operate, I agree that for us lay people it is confusing. Sometimes my husband tells me, “Don’t even try to figure it out.”
I hope that you get some things worked out soon. And start to feel better.
Rosemary

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@rosemarya

@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

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Rosemary l wanted to know when you first had problems with your liver did you get dizzy and past out out. Because they were saying sometimes my ammonia,levels can be high and cause me to fall and hallucinate and don’t remember anything. The last time l fell l always tell th e doctors l fell flat on my face and my husband and the doctors say I was sitting on the floor. I don’t understand that , isn’t that weird?

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@rosemarya

@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

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@techy, I did not have any of those symptoms. I am sorry that I cannot provide you with any clues that might help you to understand.
I hope that you feel better about all of this soon.
Rosemary

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@rosemarya

@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

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Thank you Rosemary

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Today was a good day. I went to church and my husband had the CD In the car and the song was playing the encouragement a nd Thanks to God because if it wasn’t for him l wouldnt be here. The song is # Can’t Give Up Now by Mary Mary so if anyone is going through something right now and need a little lift up and to let all the things you went through or still go through right now. It will let you know you can make it. This week l might my new gasterontergist in my state and l have 2 l was given so l will decide which one l like and agrees with the Mayo Clinic and keep watch of what’s going on because l believe if they did the followup l wouldn’t have to go and have another procedure done but hopefully it will be done correctly.

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I had a TIP 2yrs ago and when looking was the Mayo Clinic like was told it was done correctly. So let am supposed to come back to the Mayo Clinic and have it done a second time. I asked my general practice doctor to refer me to a liver doctor which leads really feel he’s a great doctor. He told me he would do the procedure himself since he seems it wasn’t done correctly. I really don’t know how long feel about that since it was done at the same hospital and let only had one appointment with him. So let really don’t know what to do? Then also l have been telling so many doctors office a symptoms of not being able to walk. I went with my husband to get a sandwich for lunch. He looked at me and ask me if left was alright. I said yes. Then let tried to eat but let couldn’t well that something usual everyone does that. When we got home last tried to get out the car, but let couldn’t. I had to ask him to help me. I couldn’t stand up and let was walking side to side. Then he got me to the house and took me to the bedroom. I asked him to get me a package that was delivered to the house. I tried to open it and let couldn’t my hands were shaking and let couldn’t pick it up to bring it closers so long could try again. I failed so long had him bring it closers and let used my teeth to open it up. So let did but let couldn’t get the items out. So let just gave up. Then let thought leaders better go to sleep so long tried to pickup my covers and my hands were shaking so much l just said forget it. I went to sleep and then when looking woke up everything was normal again. This has happened before several times but it hasn’t happened for months. I tell the doctors and they run test and everything comes back normal. Has this ever happened to anybody? Please let me know nobody else knows.

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That sounds awful, @techi! I moved your message to this discussion, as it concerns the portal vein, and also so that other members get notified, and may be able to share more insight.

Here’s some information from Mayo Clinic about TIPS (Transjugular intrahepatic portosystemic shunt); I’ve also copied some details, below:
“Your doctor might recommend a procedure called transjugular intrahepatic portosystemic shunt (TIPS) to place a shunt. The shunt is a small tube that is placed between the portal vein and the hepatic vein, which carries blood from your liver to your heart. The shunt reduces pressure in the portal vein and often stops bleeding from esophageal varices.
But TIPS can cause serious complications, including liver failure and mental confusion, which can develop when toxins that the liver normally would filter are passed through the shunt directly into the bloodstream. TIPS is mainly used when all other treatments have failed or as a temporary measure in people awaiting a liver transplant.” https://www.mayoclinic.org/diseases-conditions/esophageal-varices/diagnosis-treatment/drc-20351544

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@techi

I had a TIP 2yrs ago and when looking was the Mayo Clinic like was told it was done correctly. So let am supposed to come back to the Mayo Clinic and have it done a second time. I asked my general practice doctor to refer me to a liver doctor which leads really feel he’s a great doctor. He told me he would do the procedure himself since he seems it wasn’t done correctly. I really don’t know how long feel about that since it was done at the same hospital and let only had one appointment with him. So let really don’t know what to do? Then also l have been telling so many doctors office a symptoms of not being able to walk. I went with my husband to get a sandwich for lunch. He looked at me and ask me if left was alright. I said yes. Then let tried to eat but let couldn’t well that something usual everyone does that. When we got home last tried to get out the car, but let couldn’t. I had to ask him to help me. I couldn’t stand up and let was walking side to side. Then he got me to the house and took me to the bedroom. I asked him to get me a package that was delivered to the house. I tried to open it and let couldn’t my hands were shaking and let couldn’t pick it up to bring it closers so long could try again. I failed so long had him bring it closers and let used my teeth to open it up. So let did but let couldn’t get the items out. So let just gave up. Then let thought leaders better go to sleep so long tried to pickup my covers and my hands were shaking so much l just said forget it. I went to sleep and then when looking woke up everything was normal again. This has happened before several times but it hasn’t happened for months. I tell the doctors and they run test and everything comes back normal. Has this ever happened to anybody? Please let me know nobody else knows.

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@techi, I experienced esophageal varices when I had end stage liver disease. The symptoms are passing a tarry stool. I was hospitalized and closely monitored until I had the procedure. I later learned that it could have been fatal. The varices were treated using rubber bands to tie off the bleeding veins. These are not your symptoms and I wanted to add to what @kanaazpereira had shared in the link to esophageal varices. Only your doctor will know.

Lisa, I was at Mayo Rochester when this happened. My liver doctor did not perform the procedure. But he was definitely the one in the command post.. They have people who perform procedures like this on a regular basis. I know that you are frightened about having surgery, but I do encourage you to get this treated. If you were my mom or my sister, I would take you there myself.
Rosemary

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@kanaazpereira

That sounds awful, @techi! I moved your message to this discussion, as it concerns the portal vein, and also so that other members get notified, and may be able to share more insight.

Here’s some information from Mayo Clinic about TIPS (Transjugular intrahepatic portosystemic shunt); I’ve also copied some details, below:
“Your doctor might recommend a procedure called transjugular intrahepatic portosystemic shunt (TIPS) to place a shunt. The shunt is a small tube that is placed between the portal vein and the hepatic vein, which carries blood from your liver to your heart. The shunt reduces pressure in the portal vein and often stops bleeding from esophageal varices.
But TIPS can cause serious complications, including liver failure and mental confusion, which can develop when toxins that the liver normally would filter are passed through the shunt directly into the bloodstream. TIPS is mainly used when all other treatments have failed or as a temporary measure in people awaiting a liver transplant.” https://www.mayoclinic.org/diseases-conditions/esophageal-varices/diagnosis-treatment/drc-20351544

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I didn’t even know about liver failure as my doctor hasn’t told me that but I know when they do shunts it means they are considering you might need that but I was only told I had elevated ammonia level and I am non-cirrohsis but you are not always told everything. And I had test to see if I had hover, dementia, was I psychotic, spinal tap and so on. But then the internal medicine doctor saw that I was supposed to have a ultrasound of my stomach before the procedure she was surprised it wasn’t done. So they did it at the Mayo Clinic because she insisted I had it done there and that’s when they told me it was done right and if everything was okay I wasn’t to come back but now I was referred to the gastroenterlogist/hepatologist and when they found out it wasn’t done correctly they wanted me to have it done here. And the hepatologist I seen here he wants to do it but I don’t see any patient reviews and I was sent to the same hospital which I just don’t feel comfortable having it done here. He’s a very fine young doctor and he might know what he’s doing but I wanted done correctly. And I don’t know if you will have trouble with the shunts and that’s why you have to have a transplant or at least they have to put you on a list in case if it does but I guess I will find out. I have my appointment after Christmas so b I don’t know if they would even have time to do a procedure because that’s around a holiday but I will definitely read the information you gave me. I need to be knowledgeable when I see the doctors.

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@techi

I had a TIP 2yrs ago and when looking was the Mayo Clinic like was told it was done correctly. So let am supposed to come back to the Mayo Clinic and have it done a second time. I asked my general practice doctor to refer me to a liver doctor which leads really feel he’s a great doctor. He told me he would do the procedure himself since he seems it wasn’t done correctly. I really don’t know how long feel about that since it was done at the same hospital and let only had one appointment with him. So let really don’t know what to do? Then also l have been telling so many doctors office a symptoms of not being able to walk. I went with my husband to get a sandwich for lunch. He looked at me and ask me if left was alright. I said yes. Then let tried to eat but let couldn’t well that something usual everyone does that. When we got home last tried to get out the car, but let couldn’t. I had to ask him to help me. I couldn’t stand up and let was walking side to side. Then he got me to the house and took me to the bedroom. I asked him to get me a package that was delivered to the house. I tried to open it and let couldn’t my hands were shaking and let couldn’t pick it up to bring it closers so long could try again. I failed so long had him bring it closers and let used my teeth to open it up. So let did but let couldn’t get the items out. So let just gave up. Then let thought leaders better go to sleep so long tried to pickup my covers and my hands were shaking so much l just said forget it. I went to sleep and then when looking woke up everything was normal again. This has happened before several times but it hasn’t happened for months. I tell the doctors and they run test and everything comes back normal. Has this ever happened to anybody? Please let me know nobody else knows.

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Rosemary the new doctor I had talked about it wanted to me to have it done here and he reassured me he would do it. I try to look up patient reviews and he didn’t have any and to me that does not good for me. I heard here and I don’t know if it’s all states but if a doctor has been sued or license has been taken away in one state he can go to another state and it doesn’t follow him so he can practice again. And I also know if a state doesn’t require it to be on his file it doesn’t have too. Sounds crazy so that why sometimes you won’t get that information no matter how you search. So if I had let him do it I would have still came back to the Mayo Clinic to make sure it was done correctly so I decided not to let it be done here. And the doctor at the Mayo Clinic wanted me there since October but I have to wait until my husband could take off again. And yes I am getting bloated more but these doctors don’t want to get involved or don’t know what to do since I have been to the Mayo Clinic.

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@techi

I had a TIP 2yrs ago and when looking was the Mayo Clinic like was told it was done correctly. So let am supposed to come back to the Mayo Clinic and have it done a second time. I asked my general practice doctor to refer me to a liver doctor which leads really feel he’s a great doctor. He told me he would do the procedure himself since he seems it wasn’t done correctly. I really don’t know how long feel about that since it was done at the same hospital and let only had one appointment with him. So let really don’t know what to do? Then also l have been telling so many doctors office a symptoms of not being able to walk. I went with my husband to get a sandwich for lunch. He looked at me and ask me if left was alright. I said yes. Then let tried to eat but let couldn’t well that something usual everyone does that. When we got home last tried to get out the car, but let couldn’t. I had to ask him to help me. I couldn’t stand up and let was walking side to side. Then he got me to the house and took me to the bedroom. I asked him to get me a package that was delivered to the house. I tried to open it and let couldn’t my hands were shaking and let couldn’t pick it up to bring it closers so long could try again. I failed so long had him bring it closers and let used my teeth to open it up. So let did but let couldn’t get the items out. So let just gave up. Then let thought leaders better go to sleep so long tried to pickup my covers and my hands were shaking so much l just said forget it. I went to sleep and then when looking woke up everything was normal again. This has happened before several times but it hasn’t happened for months. I tell the doctors and they run test and everything comes back normal. Has this ever happened to anybody? Please let me know nobody else knows.

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Also Rosemary I meant to tell you one time when I was given a muscle relaxer I was allergic to I went into cardiac arrest and I wasn’t coherent I remember a nurse come in and ask me if I wanted a blood transfusion and I was never told why I needed one. And then I remember they ask me if I wanted to sign a DNR again not told why. And then one time when I wasn’t doing well and they didn’t know what was going on my daughter said they wanted to put me in a nursing home. So God was with me through this whole ordeal and I pray everything will be taken care of when I go to the Mayo Clinic. So all what was going on seems like it was my liver and now the doctors are covering up. But to hear stories like your is a blessing because it keeps me in the know and what questions to ask when I see the doctors because this is all something new. Thank you

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@kanaazpereira

That sounds awful, @techi! I moved your message to this discussion, as it concerns the portal vein, and also so that other members get notified, and may be able to share more insight.

Here’s some information from Mayo Clinic about TIPS (Transjugular intrahepatic portosystemic shunt); I’ve also copied some details, below:
“Your doctor might recommend a procedure called transjugular intrahepatic portosystemic shunt (TIPS) to place a shunt. The shunt is a small tube that is placed between the portal vein and the hepatic vein, which carries blood from your liver to your heart. The shunt reduces pressure in the portal vein and often stops bleeding from esophageal varices.
But TIPS can cause serious complications, including liver failure and mental confusion, which can develop when toxins that the liver normally would filter are passed through the shunt directly into the bloodstream. TIPS is mainly used when all other treatments have failed or as a temporary measure in people awaiting a liver transplant.” https://www.mayoclinic.org/diseases-conditions/esophageal-varices/diagnosis-treatment/drc-20351544

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@techi Lisa, have they definitely ruled out liver, and if so why? I went almost a year and a half, going to three doctors — my PCP, who is an internist, a hematologist, and a neurologist (my PCP thought I was having a neurological problem). They never considered liver because I was not jaundiced, my AST and ALT were not too bad, and I was not a drinker — one glass of wine with dinner was my limit. The PCP I went to prior to that, after my first HE episode called me on the phone and said she thought I had Alzheimer’s! It was the neurologist who finally put 2 and 2 together and said he thought it could be a liver problem. I was in the hospital for an HE episode and they did an ammonia test. It was high so afterwards my PCP sent me for a CT and that confirmed cirrhosis. Some of what you say sound as if you could be having mild HE episodes. I had some minor ones and some that were more serious. Prior to my diagnosis I had one episode that was very severe. I was basically catatonic and just staring into space. My husband called one of our friends who is a doctor and he came over and said to get me to the hospital. Since I was extremely resistant to that he had to call an ambulance to take me. I guess if I had gotten worse I could have gone into a coma.
Prior to having an HE episode I had many other symptoms — low platelets, shaking hands, I was always cold, trouble sleeping, i had developed diabetes and no one else in my family ever had diabetes. Thank God it was finally diagnosed and I was given medications — first lactulose and then xifaxan — to control the HE episodes, and eventually had a transplant. Life is great now, I feel wonderful and no more of the problems that had been caused by cirrhosis. I am so thankful that it was finally diagnosed. Knowing what I know now I will never leave it to my local medical resources, I will head right to Boston if I don’t get a diagnosis up here. I’m glad you are going to Mayo, hopefully they will be able to unravel your symptoms and figure out what exactly is causing your symptoms.
JK

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