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 group.

@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

REPLY

@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.

REPLY

@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!!!

REPLY
@techi

@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!!!

Jump to this post

@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

REPLY

@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.

REPLY
@techi

@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.

Jump to this post

@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

REPLY

@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

REPLY
@techi

@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

Jump to this post

@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

REPLY
@techi

@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

Jump to this post

@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.

REPLY

@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

REPLY
@techi

@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

Jump to this post

@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

REPLY
@techi

@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

Jump to this post

@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!!!

REPLY
Please sign in or register to post a reply.
  Request Appointment