Portal vein

@techi, Lisa, I believe that you are justified in your fear and concerns because your past experience has been so confusing.

I do not believe that it is uncommon for patients to be asked to update their legal papers at the time of a procedure - any procedure. Remember that sometimes patients choices may have changed since original documents have been filed. This can become real important as our conditions change.

Lisa, all of us have unique bodies, and our conditions are unique, too. Please do not assume that you have what I or @contentedandwell have had. Since both of us have been through difficult health issues, we can understand your fears and discomfort. We share because we really do care about you. (JK, I hope it is okay that I included you)

I hope that you find a doctor that you can trust. I agree with you that prayer and trust in God is primary. I am going to pray for you and for the doctors who will be treating you, and the kind nurses who will take care of you.

I am sending you a virtual hug:-)
Rosemary

@contentandwell, Thank you for sharing your experience. It is amazing to me when I read how different all of our experiences are! Thank goodness for brilliant doctors who are finally able to unravel these episodes and provide necessary treatment.
I am thrilled for you that you were able finally be correctly diagnosed and treated. That had to be a frightening thing for you and your loved ones to experience.
Rosemary

What you said sounds so much like I am going through but they say mine is non-cirrhosis and my general practice doctor didn't do.nothing. And I was unconscious several times. Then your right they think it's psychotic and after my first time I had encephalitis they put me antidepressants for years. And I was falling after that but it got worst. And I had even fell in front of the doctors office still it was me. Then when I fell out and I was admitted to another hospital they said I had autoimmune encephalitis and my ammonia levels were at 90. Then they said I had ms, Parkinson disease, seizures and bipolar and schizophrenia. When I went to the rehab the doctor knew I wasn't psychotic so he put ?. Then I saw the neurologist and gasterentologist and both said the were going to rerun all the test. I thought the neurologist would understand because he also had a disability. When he saw it didn't have seizures he diagnosed me with conversion disorder and he wanted me to see a psychologist or psychiatrist and after seeing one for years. I didn't want to see either one but I had to or I would go to a mental hospital. I went to two psychologist and both said theirs nothing wrong with you, your not psychotic you want answered. One told me they did the same thing to his father and if he didn't take him away from these doctors his father would be dead. He told me to go and get help. Then when my gasterentologist saw that my ammonia levels went down but still was above the normal limits he knew something was wrong. And he showed me my x-ray and showed me the extra vein in my liver he couldn't believe this because he never seen this in a human. He told me he seen these in medical school and he wasn't a young doctor. So he didn't know what was to be done so he said he has to talk to his colleagues. It took so long for him to get back to me so I did think I had cirrhosis and only thing I could see was death. Then he came back and did the biopsy so that's when he said it wasn't cirrhosis. I was going to go to John Hopkins but I needed a referral but my general practice doctor didn't want to give it to me. He told me you have been to so many doctors and they ran all these test and everything was alright. Finally after me keeping on him he said he was going to send the referral. But he told me it's hard to get in so you might not get in. I had already had the approval from them they just needed the referral. So everything that I needed questions about my health answered or understood the symptoms I would always look at the Mayo Clinic website. When I called them I was told I didn't need a referral and in 2weeks they called me about setting up an appointment. I couldn't believe this but I was taking the lactulose also. My ammonia levels went down but sometimes I would still pass out and sometimes couldn't walk. And if I fell sometimes I would try to get up but couldn't so sometimes I would have to slide on my back using my hands and feet. And still would have trouble getting up because I was tired trying to get to the edge of the bed. A day I would have to go to sleep and I would feel alright again. I don't know if that has happened to you. Then when I had the procedure they said l had 5 extra vein so I was under anesthesia for 5hrs. Then I found out later they should have kept me overnight at least to make sure everything was OK. And you would have thought they would have did it because I was allergic th of so many medicine. My daughter said l was talking crazy and I onetime opened the door in the room she and my grandchildren were in and I wanted to kill my grandson. I remember going in the street in my addition and I was barely foot. Then I Guess My DAUGHTER CALLED 911 BEFORE I Knew It email, the police and a mental worker came and took me into the hospital. And I was crying don't take me. They knew I was having an allergic reaction. When I asked my doctor how did I had something wrong with my liver and I told him we don't have any history of that he told me it was medications. I don't know if that's the same for you. But also everything I was going through was also symptoms of autoimmune encephalitis. And a lady who had that problem everything she wrote about and been through it was exactly what I was going through. And also what was so crazy is we came from the same state so the places she talked about where she was like knew exactly where it was. So I just couldn't believe it. So I don't know if the symptoms or diagnoses can effect the other parts of your body. But when I trying to find out about encephalitis I had to get the information from the UK. So I don't kno a if they are going to tell me about a transplant or not but I know they are going to do the procedure and it's a blessing nothing has gotten worst since they wanted me there since October. And what symptoms did you have for them to make the decision to do a transplant. I also know that the neurologist at the Mayo Clinic wasn't happy that what she thought l had I didn't. She had sent me to 2 psychiatrist and I guess she didn't get the answer she thought she knew because she had me scheduled to see a third one. But after the vascular doctor said it wasn't done right and that he thinks that was causing me to act psychotic she had to change my diagnoses but of course she had to put what she though but she also put misdiagnosis, allergic reaction and my liver diagnoses that they suspected because now I am seeing the gastroentologist/hepatologist. Doctors hate to be wrong because they are worried about being sued. But thank God for doctors who are honest and except that they could be wrong. It's all about learning only God knows. So I am getting ready to go to Minnesota even though it might be snowing but I have to get this resolved. And I heard if you have a transplant you have to stay near that hospital for at least a month. I guess that's what you had to do. And after you had the transplant did you have to take a lot of men's to eliminate rejection of the liver. Because I know that might be a problem for me. So I am praying everything works out for the good and it will be and easy transition because I know you probably have a lot of fear that something can go wrong. That's just normal. Did you go to John Hopkins? Well it sounds like you are doing well and it's very successful. And also hearing Rosemary story it helps to be relieved of things that can go wrong. And how long did it take for them to make the decision you needed a transplant to when you actually received one. And are you still being watch closely or have you pass that stage. But least I am not the only one that was told they had a mental illness or dementia.

@rosemarya Thank you Rosemary, It really was frightening to basically be delirious and have no idea why. Even now when I think about it I get tears in my eyes at how much that effected my life despite it not being that frequent. The bad episodes were pretty rare but the lesser episodes probably occurred every couple of weeks. My whole family was perplexed. We were just happy to know that no other doctors, other than my original PCP, thought it was Alzheimer's. I was constantly afraid to go anywhere but thankfully an episode never really started when I was not at home, unless you consider the bad stomach pains that preceded most episodes. If my stomach got upset I would head home, just in case. Sometimes it would be a false alarm, as I would say to my husband, "sometimes a stomach ache is just a stomach ache". When I realize how many symptoms I had that are indicative of cirrhosis and that it was not recognized for so long, I just shake my head. I may have mentioned before, the last time I saw my PCP I brought him a list of symptoms that are indicative of cirrhosis. He claims to have had other patients with cirrhosis but he sure did not recognize mine despite my symptoms. I think he did try, and I think he actually researched beyond office hours, but when he said to me that he was relying on what previous doctors had said I felt like groaning. Shouldn't he have started from scratch since no one had yet to figure out what my problem was?
JK

@techi Hi Lisa. I presume your message was directed to me If you put the @ sign, followed by the online name of the person (like tech1 or contentandwell) that person will know in their email that there is a message that is to them, and it leaves no doubt to whom your message is directed.

You have sure been through the wringer. I hope things will get resolved for you soon, not knowing is the worst part I think. It was actually a relief for me to find out that I had a cirrhosis! Not a great diagnosis, but cirrhosis is not necessarily a death sentence. I was depressed for a short time, my physician referred to as "justifiable depression", but then moved on and lived my normal life, trying to not let this dominate my thoughts, which is by far the best way to approach a diagnosis such as this. I think it helps you physically too. It helps nothing if you wallow in self-pity. You sound very hopeful, which is great.

If your health is decent then you can be listed as a transplant candidate. When they discovered I had cirrhosis I had to go for all kinds of tests to determine my health in all areas, even a dermatologist to examine my skin. When all of that is done, if you do not have any medical conditions that would contraindicate a transplant, your MELD score will be calculated and you will be listed as a candidate. I was listed at MELD 11 but when it was discovered that I had malignant lesions my MELD went up to 18. The lesions were burned off by ablation. My MELD continually went up over the next year until it put me in a position where I was a top candidate and my transplant happened. From the time I was listed (after all of the tests) to transplant it was about 14 months. Of course that varies a lot depending on what your MELD is when you are listed, the area where you live or are listed, and how you progress with the medications.

I was told immediately at Mass General that I might want to dual list because hospitals in the Boston area tend to transplant at higher MELD scores since so many people come to Boston for medical care. I seriously considered that. At MGH they thought I would not be transplanted until my MELD was in the 30s. When I spoke to people at Mayo they felt I might get transplanted with a MELD as low as 28, probably because my blood type is B which often gets transplanted more quickly than blood type O. I was at 28 and giving very serious consideration to where I should dual list, Mayo being my first choice, and I got the call from MGH that they had a liver for me! What a blessed day that was.

Since transplant I have had an almost miraculous recovery. At times the immunosuppresants are a pain in the butt but I'm alive and it's worth that and more. I am grateful for every day. I also used to wonder why since my cirrhosis was not caused by alcohol I could not drink a glass of wine with dinner still, but my son, who is a very non-medical persons but also very rational, suggested that this new liver is fighting to survive in me and alcohol just would give it another battle since alcohol is not good for anyone's liver, and that I don't want to put more stress on this new liver. I thought that was a very good explanation. I have no idea if it's right or not but it sounds logical to me. I don't know anything about my donor, male or female or age, so I refer to it as Hank which is somewhat gender neutral. 😉

Stay positive, Lisa, and keep us posted on how things are going. I sure hope you get a diagnosis soon. I wish I could reach through the computer and give you a comforting hug but you will have to settle for a virtual hug.

Hugs, JK

@contentandwell I get the way to write a reply now. Thank You. I was depressed because l lost my job because I had a disability and I worked for the secretary of state. I was very upset about that because l had 5 children and I didn't know how we were going to make it but God blessed and everything was alright. Then I went to college and I wanted to begin working and helping others with disabilities. I couldn't remember my memory was affected after my TBI so when I took my test l couldn't remember the material. Then that when everything began to happen in tore my all because my doctor wouldn't listen to me then it was my should and then I had back surgery and then I had foot drop so I had surgery on that and now the liver. So I have been through a lot and the doctors couldn't understand what I was going through. When l went to the hospital because of falling or dizziness the psychiatrist would always come because they t b ought l wanted to commit suicide. Then in Jan when l fell and they said I hallicuated again the psychiatrist came in because once again they thought l wanted to commit suicide. They never told me the results of my test. When l was discharged my husband and thought it was kinda of weird when l was discharged they didn't tell me anything. Then 2 days later the er doctor called me and said I had a urinary infection. I worked in er for 8yrs and I knew everything they did was not right at all. So I prayed one day at my church for God to give me my memory back and he answered prayer. So when I would research and told my doctor the information I found he didn't like that. I knew to much about my brain injury and then my liver. When l looked on the computer about my new diagnoses he would erase the old ones. One day when l saw him and l would always put my allergies in the computer his medical assistant didn't have it kept up. When I would go to different doctors that weren't with that hospital he would tell me sometimes it would take 6-9 months before he would get my chart so I had to always have it with me to give to him. Just WOULD Look On The COMPUTER And sometimes it wasn't upto date. When l would look at my lab results he would order sometimes it will be there and sometimes it wasn't. Since l came back from the Mayo Clinic I haven't seen him nor have I told him I went there. And when l went to the Mayo Clinic I told them not to send him any of my records. Right now l am in the process of finding a doctor but I want to finish with what's going on right now. I really don't feel like looking right now. It almost near my time to go to the Mayo Clinic. And I pray I get a doctor who will listen and want to help. I really wish I can go back to my state I was born in. NY because they are up to date with technology and medical diseases. So it's great now because my memory is great and I couldn't write or even spell. So now I am getting ready to write a book and I want to for fill what God wants for me to do. And help others I was thinking about shad rack , mesh shack and dabindgo and how they were in the firey furnace and they were suppose to die but they said they saw 4 in the fiery furnace and the 4th was the Lord. And that means no matter what you are going through he is always there. And for me he was an answer to my prayer because l had so many challenges but now it all coming to life and mostly everything on my chart is not true. And I am trying to see how you can get those false diagnoses off your chart because it follows you and when you want to get a job or take in children it has on it that you have a mental problem. And also when they said I was depressed they fail to realize a person who can't get out there house or drive anyone would be depressed. But I am looking forward for all God has for me and now I can drive. So I will be going back to school and do all the things l use to. And now l am looking forward to taking care of my new grandson who will be due in February if I will be able to do. So that's why I didn't know how long if I need a transplant or how long it will be because everything you and Rosemary sounds like that what I have. And I guess since one of my shunts the blood is not flowing I guess they will either redo the shunts. Isn't that right and I guess they will tell me the rest.

@techi Lisa, it sure sounds like we have a lot of similarities, not just with our problems but also with our doctors! I don't think mine likes that I have a voice and I challenge him on some things. I guess he would prefer to have patients who look at him like a God.

He has also not always been up to date on things. Actually I think the records were but when I was there for a visit he said I had cirrhosis and gall stones. I was shocked! I told him I didn't think my new liver had cirrhosis and when they take out your liver your gall bladder goes with it. Then he looked at the records he was looking at and they were from March of 2016 and we were in the summer of 2017!

I know I need to find a new doctor but right now I have too many other things to think about. I hope to get moving on that after the first of the year. Part of the problem is that up here the doctors that are held in high regard are not taking new patients so that leaves me with doctors who are still "green behind the ears", or not well regarded.

Also, when I was in the hospital the first time with an HE episode (I had two or three episodes that put me in the hospital) they sent for a psychiatrist because they thought I was suicidal too! I was not of course but if I was it would have been because the head nurse was so awful! I felt like she learned to be a nurse from Nurse Ratched in One Flew Over the Cuckoo's Nest. At one point she scrubbed my hair because they had done some test that required sticky things to be put on my head. She literally scrubbed so hard that I had a headache for two weeks! What a witch she was.

Memories I will never forget, unfortunately. I thank God countless times a day for how well I am now. Who knows how long things will be this good, but no matter what I have so far a wonderful year since getting my new liver and Hank and I are good buddies. 🙂

JK

@rosemarya Rosemary l am suppose to be coming back to the Mayo Clinic in 2weeks for a consultation I tried to ask the nurse if that means having the procedure done again or something else she couldn't answer that so I just wanted to know if you went through that because the vascular doctor said he was going to talk to the gastroentologist/hepatologist and if everything is alright he would call but he didn't do that so now I am having a consultation. I am seeking legal advice but I know I probably have a difficult time with my state so I pray it's nothing to serious when l see the hepatologist. I am really not to worried about because l have researched the symptoms and also the same issues everyone is going through. So I just wanted to know if you went through the same thing.

@contentandwell l was writing to ask you a few questions. Last night l had pain in my stomach upper and lower and also my side radiating to my back. I knew that might of been gallstones since that's been a continual pain since 2014. But my stomach because it might be constipation. I am having problems in that area so l am taking the lactulose twice a day instead of once per doctors orders. I have been trying to find out why my doctor isn't getting my cd from the Mayo Clinic but that might be a blessing. They are all worried l might get legal advice which they are right. I am standing up for myself and others who can't. So they are all on pins and needles since this is the same hospital that where it all happened. I was kind of surprised my general practice doctor would send me back there where the mistake started. The hepatologist hasn't got the cd from the Mayo Clinic yet which is a blessing. I will be back at the Mayo Clinic next week if the weather is nice. I can't continue changing dates due to my husband job it's Dec and that's the busiest time of the year for them.i wish I came back in October but God is with me. So I really don't know if my pain be also the HE I thought you might know. And I don't know if know if you gained weight but everytime l go back to the Mayo Clinic I have gained weight. Also I been having problems with my eye sight in the light but not in the dark as much. I don't know if it can be with my mild glaucoma. Even though I just seen my ophthalmologist last month. So I didn't know if you experienced the same thing. So the doctors are afraid that I will seek legal advice which I am not for just myself but also for others who have to go through the same thing and have to live with the consequences. So I thought I would ask you though questions because you might have had the same problems l am having and to know what to do. Thank you for all the answers you have shared with me it's so helpful for understanding what l am experiencing. You have a very Merry Christmas with your family because I definitely will my family from Tennessee especially my grandsons this is the first Christmas with them so I better go out to get a Christmas tree before they come. Thank you for all the information you have given my to understand this journey as I go through to victory!!!

@techi I had stomach pains prior and sometimes during my HE episodes. The best I can describe it is that my stomach really hurt. It wasn’t nausea and it was not the pain of constipation. Lactulose really upset my stomach a lot, I hated taking it for that reason and also because when I took it I often felt like I couldn’t leave the house in fear of the lactulose acting. Your medical facility says to take it only once a day? Please forgive me if I don’t remember history here but have you been diagnosed with cirrhosis and have you definitely had HE episodes? If so then you need the lactulose to get the bacteria out of your system before it goes to your brain, causing HE. They wanted me to have 3 to 4 loose BMs a day while taking it.
I have had a number of things keeping me away from this forum recently so I do forget a lot. Why are they afraid that you might take legal action? Did they misdiagnose causing problems? I think it’s pretty difficult to make a suit against a doctor unless there is really neglect.
If Mayo or some other large, highly regarded medical facility is close to you I suggest you only deal with them. It sounds as if Mayo is too for it to be a regular option. Mayo is wonderful but for me Mass General Hospital was the answer and I have no regrets. I will never again go locally for anything beyond the most minor of problems.
I did not gain weight until near the end of my cirrhosis, about six weeks before transplant. At that point I had very severe edema and cirrhosis. I gained about 35 pounds in two weeks. It was really horrible and actually painful due to my skin stretching, especially on my feet which were so filled with fluid that it was seeping out my pores and no shoes fit me except slip on slippers.
JK