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Lisa (@techi)

Portal vein

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

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@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?

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Replies to "@techi, I am sorry to learn of your complicated, and confusing medical history. I have a..."

Well thank you rosemarya for asking. Right now l haven’t confided in my general practice doctor about me going to the Mayo Clinic. Because when l first was diagnosed in 2014 l had hyperammonia he went and changed my chart to say l had it in 2012. Then l have been falling since 2009 when l first started seeing him and he did send me to physical therapy a couple of times and then l tore my cal and my orthopedic surgeon told me this in 1 visit and l had surgery the next week. In which since l have been telling my gp that l was still falling he finally wanted to run test and then he wanted to refer me to his orthopedic surgeon to late l told him l was scheduled for surgery
Then he had all these diagnoses on me that previous doctors have said and l know that what some doctors do but others want to know for sure. So now l am in a delimma l am gaining to much weight and l know it’s fluid. I don’t think it’s the one shunt that is open to what degree l don’t know. That’s why l am having a consult with the gastroenterologist at the Mayo Clinic. Or even what doctor to see here. That’s what l was just talking to my daughter about because she works at a hospital. And l would go to the hospital she works at but they have it there that l am psychotic which the Mayo doctors ruled out and said l was mis diagnosed. Then like l said l had all surgery but now my hip to my ankle hurts. I’m not concerned at the orthopedic hospital because they also thought the psychotic issue was true after they heard about the hyperammonia. So l think l need to be slowly taken off the meds to see if l am having another reaction or if it’s just not working. But right now l am not telling any of my doctors about the Mayo clinic until l get the whole picture as they would say. Oh and l got a note from my neurologist about my concerns of my diagnoses because I just didn’t know what l had. Most of my diagnoses was put on my chart when l was unconscious in the hospital. So she wrote a letter about me being misdiagnosed and l think she was even surprised about how much they were wrong. They are saying it was from the shunt being open but they need a second opinion from the gerentologist because l haven’t received a call from the vascular doctor saying everything was definitely ok and l don’t need to come. I tried to find out by email. So when the neurologist gave me the letter she said l don’t know how they would change the diagnoses. She told me they didn’t read your chart because it said you had autoimmune encephalitis, and hyperammonia. So l have to leave all this to God because you could lose your mind and life is to short to do that. So it seems like all my doctors can’t figure this out but the Mayo doctors are really digging into this and that what medical should be like. I know they are not God but the bible say seek and you should find and knock and the door shall be opened. And l did seek the Lord to go to the Mayo clinic because I was going to go to John Hopkins and when l knocked the Mayo clinic called me in one week and l found the beginning of my misdiagnosed and now the beginning of my shunt that was performed incorrectly and the followup l didn’t get here and should have. So if aging weight and having joint pain is part of hyperammonia l would appreciate you telling me from your experiences. I Love connecting with others to get more information that they went through not saying you or won’t have the same issues. Thank you so much

@techi Hi again, Lisa. One of the things we always learn too late is the question, “Which doctors will tell the truth, and which will lie about you?” I started trying to get into OHSO (Oregon Health Sciences University) in about 2010 or 2011. The doctor there said I had nothing wrong, and that I was just a “psycho.” I tried again in 2015 and 2016, and failed. Eventually I ended up at MAYO AZ and they missed my diagnosis entirely. So I tried again at OHSU, and they still refused to see me because I “went to Mayo before I tried OHSU.” Now my kidneys are failing, and the local doc says it is because I have not sought out the medical care I needed. Do you suppose OHSU and Mayo will share the cost of my dialysis?

@techi, I always have someone with me when I have a stressful appointment. In my case, that person is my husband. When I get nervous or am not feeling real well, I simply do not remember what the doctor tells me. So my husband with me to listen to the diagnosis and the treatment options, and also ask questions. He does not go into the procedure room.

So I am wondering about you, Lisa. Who do you have who could accompany you to your appointments?

I’m sorry l didn’t write back sooner but l am going back to mayo clinic in Rochester Minnesota and l was told by several employees they are #1 And if l am not mistaken they are the first Mayo Clinic but l saw the vascular doctor first and he was very honest. He told me the stunts they did in my home state they did it completely wrong. So he also told me one shunt was open and he had to do order an ultrasound of my stomach l guess to see how wide and if l was bleeding. Then he told me he would have to speak to my internal doctor and my neurologist. So my doctor said for me to be seen by the gasterentogist. I don’t exactly know why but it’s a consult and it also say . procedure. So l am not sure if they will have to do it over again. My prior gasterentogist who retired told me l have the symptoms of cirrhosis but not cirrhosis. And the May clinic said the same. But he told me l should have been checked often to make sure that nothing like this would have happened. So l really don’t know if that is where you should go or not. And l really don’t know if they would help you if you can’t afford it. But call them and see what they can do because you don’t want to be on dialysis. I have a nephew who is also having kidney problems. He not on the transplant list yet but he could get there. Also l was watching TV and humaira insurance company came on so you can look at that also. I will definitely praying for you and text me again and let me know what you found out.

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.

@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 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.

@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 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?

@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.

Thank you Rosemary

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