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Portal vein
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.
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@contentandwell my stomach is bloated and it hurts and twice this week I was so nauseated. My husband and l went to eat last night and l usually can only half of my meal and in the middle l had to stop and go to the restroom so I do get nauseated. I had to rush home and get my pill for nausea. They also told me I need to go to the bathroom 4-5 times a day and have a BM. I asked the doctor does in go 4-5 times a day. I can talk to him like that because he's been my rehab doctor several times as an inpatient doctor. And yes they have diagnosed me with HE without cirrhosis. I guess that sounds crazy. And my stomach is bloated so it's probably ascites. And I wasn't trying to sue about negligence because l know we all make mistakes but because l wasn't followed up and if l was after my doctor retired they would have seen the mistake and corrected the issue then and also when they did the TIP procedure because l am allergic to practical everything they should have kept me overnight because l had a reaction and my daughter had to call 911. So I feel our health care shouldn't be that negligent that it hinders the patient. And when my doctor retired he asked me about which of his partners I wanted to follow with and I told him. In left last year and l called them about seeing a doctor and then 11months later l saw a doctor. And if I didn't have money or insurance I wouldn't have been able to come to the Mayo Clinic. I don't know what going on with Healthcare. Doctors should do their work for the patient not the money and God will bless them with more than enough and Healthcare is about a profit not about care of the patient and what they went to school for.. And I did my research and found out the ceo of this hospital is retiring in 2weeks. A lot of the hospital here the employees are protesting against and a lot of doctors hate there jobs and a lot here are retiring. We have more PA, and nurse Practitioners in which some are more compassion for helping then receiving And l know about how that works it's about profit and demand. And at the Mayo Clinic I see a difference doctors, nurses and medical staff who care even down to the volunteers. They are so happy to serve and take care of patients. I always tell people about the Mayo Clinic since l have been there. And that's how Healthcare use to be. I have been with my general practice doctor for such along time with misdiagnosis and not trusting me and it caused me a lot of health problems and I had to just look back and ask myself why did I stay with him? I said anyone would have left him along time ago and the Lord told me because I didn't tell you to leave. And I had so many people tell me to leave even you are crazy to stay but I just kept going but now I am finally leaving him it's my time to go and l feel piece about it. So I know you have definitely been there because you care and it's people like you and other who been there an feel for others.
@techi Lisa, you have sure been through a lot. I apologize if you said before but my life has been totally crazy recently. To what do they attribute your symptoms that sound so much like cirrhosis? It’s good that you are going to Mayo. As I have mentioned before I think many large, highly regarded medical centers could help you but Mayo is probably the best. Where do you live? My local doctor in Manchester NH didn’t have a clue what was wrong with me despite the fact that my symptoms all pointed to cirrhosis. I was not jaundiced though and my ALT and AST were not that elevated. Thankfully my neurologist cracked the puzzle and then it was Mass General Hospital that took over. They were wonderful. I did not realize until my diagnosis how many symptoms I had.
JK
@contentandwell
well I I live in oklahoma and the Healthcare system is not so high tech as many other states.Right now our state is going through a deficit so that effects everything so you must go out the state for better care. But they reassured me at the Mayo Clinic and here that I don't have cirrhosis but I guess that can also be wrong. But at the Mayo Clinic they said it could have been trauma from the biopsy or medication. I don't know where that adds up either. I kn l was sometimes the doctors might not want to everything right up front and I know sometimes they are careful unless they suspected because I don't want to say they are sure. Because everyone is different and there bodies are too and they are learning as we are to. Because my neurologist at the Mayo Clinic knew for sure she knew what the diagnoses that was on my chart was correct to find out it was all wrong except my liver and the vascular doctor had to tell her what was going on but he also said he would have to talk to the gastroentologist /hepatologist. But yes I was reading that HE can turn into cirrhosis so I really don't know where l am right now. I will be at the Mayo Clinic in 12 days and as crazy as it is you really don't know how long until you get there. It seems like they setup the rest of your appointments according to how long they need to see you. But I am really from NY and I am use to more advance Healthcare. I was going to originally going to go to John Hopkins for my autoimmune encephalitis but my doctor was hesitant to refer me because he knew he wasn't really trying to find the answers he couldn't so I called Mayo which I found out it was number1 in Healthcare. Now I don't know if that's so but I do like how they work in teams. And my stomach is bloated and it hurts so I think it ascites. And I b Ave gained a lot of weight but know one seems concerned. I had loss a lot after I had surgery that I went out and brought new clothes. Not smart, so I think I have a lot of fluid and it could be that I am not as active because you are so tired. You know all about that slow today l got out to drive after 2yrs so that was exciting even scary because sometimes I can't even walk but I know when that happens. And it happened only once since March so I thought that was over. So I am so glad to have people like you who understand and have been through it because you can give advice and to tell us what it's like. Because some I can't say all but doctors make you think they know but actually they don't and pride gets in their way when they have to say that they don't know. So. I don't know if they are going to do the procedure again or if it's something else because the nurse definitely doesn't. Or she can't say. And if you have to have a transplant I guess you would have to stay where they did the transplant? And I don't know if you are required to have a certain amount of money before you can get a liver or maybe you have to go on dialysis or something. I have a good friend who has a kidney transplant and he has had it along time now. But now he's in the hospital but it for his sugar and blood pressure so l don't know if that part of the kidney transplant? And my nephew who will probably need one or he does and is not telling us but he is also.having problems with his pressure. But I will definitely let you know when l know what going on. I like Minnesota but this definitely is not the time to go but I have too. So we will see what happens
@techi, I want to wish you a Merry Christmas. I hope that you have an enjoyable and relaxing holiday season.
I am happy to see that you will be going to Mayo for your appointment. I will say a prayer that all goes well for you.
Rosemary
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1 Reaction@rosemarya Rosemary l just came back from the Mayo Clinic. I spoke to the liver doctor and he asked me if I had certain symptoms. It was just like he was in my head. But he explained to me about the portal vein and hepatic veins. And he spoke to me that the procedure they did was done correctly but I didn't have liver disease and he asked if I ever had it. So he told me l didn't have encephalopathy. What it actually is , is when I was diagnosed with shingles in 1978 from the chickenpox it stayed dominate in my body and that's when l had encephalitis in 1997. Well you can't cure that so it can stay silent or it can still be active but it's not noticeable. When l was put on antidepressants they thought it was a mental illness when in fact it was always encephalitis and it does fluctuation. So in 2014 when they diagnosed me with autoimmune encephalopathy it was the encephalitis. They might resemble in someway but one has to do with a liver disease and the other doesn't that's why I don't have cirrhosis. Now when it affects internally it can affect some of the other organs but it didn't affect my liver. So he told me jokingly you just made different. That's for sure. So he's taken me off the lactulose. He gave me an example when l fall my brain is not signalling the rest of my body. I really enjoyed speaking to him. So now l guess the need to have a group for encephalitis.
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3 Reactions@techy, Lisa, I was thrilled this morning when I read your message! I am happy for you, and relieved with you that you have finally found a suitable diagnosis for your symptoms. I want to credit/compliment you for listening to your own body and proactively searching for answers. I know that this has been a very long and difficult time for you.
I think that you can look forward to a new year full of new beginnings! I wish you a Happy and Healthy 2018!
Please keep in touch and let us know how you are getting along.
Hugs,
Rosemary
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2 Reactions@techi Lisa, I am so happy for you that you have finally gotten a real diagnosis. I know how miserable it is to go along without one. There is nothing like these major medical centers when it comes to diagnosing problems such as these. I will never again rely on the doctors up here in the Manchester NH area, it's off to Boston.
JK
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1 Reaction@contentandwell JK l almost started not to go because it was only be a consultation. And 12hrs for a consultation is a little tiresome but truly worth it. When I saw the Dr. It was so amazing when he was asking me questions but when I explained to him about my falling he wasn't really surprised. I was always told l was seeking attention but when you keep falling and don't know why it's a little concerning. After Christmas my daughter-in-law went shopping now that's fun to do buying clothing and l couldn't feel all I was unconscious stable but I wanted to go. So I had to ask her let's wait and hour. I went anyway and I tried so hard to distract her from seeing me unsteady. I know she could see it was having a problem with my balance. I didn't talk about it but every store I went to I grabbed a shopping cart. When I told this to the doctor at the Mayo Clinic he really didn't seem surprised. I didn't like his recommendation either but I knew he was absolutely right. He said you are going to have to use a walker or cane. You know pride can stand in the way but I have to look at safety. And when we finished with my appointment, he gave me his card and he told me if you have any problems call. I was so happy to get a second opinion because only you know your body. And sometimes doctors feel it one patient fits the symptoms that the are familiar with then that's the same symptoms and the cure is the same. But that's definitely false God has created us all different. And what works for you may not work for me. So that's what doctors have to understand. And if they have to research like doctors use to before. But I can only say is keep on asking questions and you may not get the answers from one doctor but move on to the next. I have done that but not with my gp and I thought he was trying to help me. But instead whatever diagnoses another doctor has put on your chart that's what the diagnoses will be. But I found out with the Mayo Clinic you had a team of doctors working together. And I am sure there are some that work together and some that might not but you want to find an answer. And he listened and he felt the pain I was struggling with in trying to find an answer. I am praying for you!!!
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2 Reactions@rosemarya it was so relieving finally someone listened and not pushing you away. He told me there was no cure but there's ways to help the pain and away to help myself with the falling. Which I did know about safety but sometimes pride can stand in the way. And when you don't have that problem for a few months it's is still there. But I know it's all in God's hand. But just to finally know something is worth the trip, time and frustration. You are just a blessing Rosemary and just you being there for us even though some may not understand you don't know everything but you are concerned and want to help everyone. Your just a joy. Have a Happy New year!!!.
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1 Reaction@rosemarya I second that, Rosemary. You have a wonderful way of keeping up with everyone.
JK