Doctors mistake watch out.

Posted by Lisa @techi, Oct 3, 2018

On Monday l had stomach pain, hot flashes and dizziness. I thought it was my ammonia levels. Instead it was my appendix. When l went to the hospital and before surgery the surgeon explained how she was going to do the surgery. She asked all the regular questions about your medical history before the surgery. She didn’t ask me about my shunts in my liver. Strange. I told her because l am very careful about it. So she tells me well don’t die on me. Now l didn’t want to do the surgery after she said that. So my family said you have to or it can bust and you will die. I understand all that. Then my daughter tells me someone told her that it was the first time at the surgery they did my TIP procedure. I was in shock, l smell a rat l said because everytime l have to go to the hospital or see the doctors at that hospital they always say l have a mental problem and l am depressed and so on. So while l was in the hospital there was three meds they didn’t give me. I told them and they were in shock they overlooked that and l daught that. Then l was having problems breathing and l was calling the nurse 3 times. I told them you didn’t give me my inhaler or my cpac machine. They really was scared. Then they asked me if l take oxygen because my l was having breathing issues and my oxygen levels went down while was sleeping. I told them no. So they gave me oxygen and a breathing treatment. I told them this wouldn’t have happened if they would have read my chart and see l have a cpac machine and take 2 inhalers. And they also didn’t give me my eye medication even when they asked me if l had glaucoma. I had to have an ultrasound of my neck. They said it was ok. Then when l was discharged the medicine l was allergic to for my liver they had it on my chart that l take it after telling them that and my hepatologist that see at the same hospital. It’s crazy it not on the computers at the same hospital
So they were so scared they were hurrying me to be discharged. You talk about sorry medical systems and doctors. I could have died.Thank God for him being with me.

Liked by Dee

@adah

My family member has high ammonia level 81. Been very aggressive and outbursts daily.
Was told the level of ammonia is what’s causing these episodes.
This is after hospitalization in Behavorial health center. Also been told his liver not working properly, put him on lactulose. Waiting now to see GI dr. How serious is this problem with ammonia?

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Hi, adah, Have you met, contentandwell? She has experienced hepatic encephopathy as a result of liver disease which elevated her amonia levels.
@contentandwell, I want to tag you to this conversation.

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@rosemarya

Hi, adah, Have you met, contentandwell? She has experienced hepatic encephopathy as a result of liver disease which elevated her amonia levels.
@contentandwell, I want to tag you to this conversation.

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@adah @techi @jenniferhunger @rosemarya
Hi to all. I am so sorry to hear of the mistreatment some of you have had at the hands of doctors. I hope when that happens that you change doctors as soon as possible. I would not say I have been mistreated by uncaring doctors, but I have been misdiagnosed by a doctor who basically did not put enough effort into being a doctor. I changed as soon as I could find a good doctor who was accepting new patients.
I suffered from hepatic encephalopathy when I had cirrhosis, prior to my transplant. It is a terrible thing to suffer with. Cirrhosis, as I am sure most of you know, is not always caused by alcohol. It can be caused by hepatitis or fatty liver, and a few other things. Those are the three most common causes. Thankfully it does not cause permanent damage from everything I have been told and it did not with me. I am not sure of what the other causes of HE are. What do they think cause your HE episodes, Lisa?
My HE episodes were distinct, I did not have a constant fog as some do. Some of my episodes were mild. I was able to go to bed for a few hours and wake up fine. There were some more serious ones that put me in the hospital. One was serious enough that I was basically in a stupor.
The local hospital that I went to was not great at all so I can totally understand your problems with some hospitals. The treatment there by most of the nurses was deplorable. I have been in my transplant hospital, Massachusetts General, not only for my transplant but three other times. The nurses there were incredibly caring. I hope you can find a major medical center close to where you are. I would suspect that the care there would be very much better than the local hospitals you have referred to where your care was not the best. If you can find a "magnet hospital" they generally have the best nursing care.
If you have any questions about HE, please feel free to ask. I will answer whatever I can. I was on lactulose initially, then after going to a hepatologist she put me on xifaxan and I was able to go without lactulose for almost a year. Then I had another HE episode so I had to resume taking lactulose along with the xifaxan.
JK

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@contentandwell

@adah @techi @jenniferhunger @rosemarya
Hi to all. I am so sorry to hear of the mistreatment some of you have had at the hands of doctors. I hope when that happens that you change doctors as soon as possible. I would not say I have been mistreated by uncaring doctors, but I have been misdiagnosed by a doctor who basically did not put enough effort into being a doctor. I changed as soon as I could find a good doctor who was accepting new patients.
I suffered from hepatic encephalopathy when I had cirrhosis, prior to my transplant. It is a terrible thing to suffer with. Cirrhosis, as I am sure most of you know, is not always caused by alcohol. It can be caused by hepatitis or fatty liver, and a few other things. Those are the three most common causes. Thankfully it does not cause permanent damage from everything I have been told and it did not with me. I am not sure of what the other causes of HE are. What do they think cause your HE episodes, Lisa?
My HE episodes were distinct, I did not have a constant fog as some do. Some of my episodes were mild. I was able to go to bed for a few hours and wake up fine. There were some more serious ones that put me in the hospital. One was serious enough that I was basically in a stupor.
The local hospital that I went to was not great at all so I can totally understand your problems with some hospitals. The treatment there by most of the nurses was deplorable. I have been in my transplant hospital, Massachusetts General, not only for my transplant but three other times. The nurses there were incredibly caring. I hope you can find a major medical center close to where you are. I would suspect that the care there would be very much better than the local hospitals you have referred to where your care was not the best. If you can find a "magnet hospital" they generally have the best nursing care.
If you have any questions about HE, please feel free to ask. I will answer whatever I can. I was on lactulose initially, then after going to a hepatologist she put me on xifaxan and I was able to go without lactulose for almost a year. Then I had another HE episode so I had to resume taking lactulose along with the xifaxan.
JK

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@contentandwell JK, I'm sorry you were misdiagnosed too, but by sharing our stories, we teach others the importance of asking questions, learning as much as you can about your condition, and 2nd, 3rd, 4th opinions…. and firing a doctor who isn't helping you. That doesn't feel good, and you start over searching for help. Doctors don't always tell you everything they are thinking, and I always get my medical records from my visits and look up everything they write about me and I learn a lot. That can also tell you if they are venturing the wrong direction, and if they are not listening to the patient, how can a patient get the right care? It's all based of honest communication, and mistakes can be made so easily. Doctors are human and can be distracted or irritated and that affects how much they will understand from you the patient. I try to vet them as best I can by reading their research and I look for things like teaching at medical society conferences to find the leaders in the field.

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@jenniferhunter

@contentandwell JK, I'm sorry you were misdiagnosed too, but by sharing our stories, we teach others the importance of asking questions, learning as much as you can about your condition, and 2nd, 3rd, 4th opinions…. and firing a doctor who isn't helping you. That doesn't feel good, and you start over searching for help. Doctors don't always tell you everything they are thinking, and I always get my medical records from my visits and look up everything they write about me and I learn a lot. That can also tell you if they are venturing the wrong direction, and if they are not listening to the patient, how can a patient get the right care? It's all based of honest communication, and mistakes can be made so easily. Doctors are human and can be distracted or irritated and that affects how much they will understand from you the patient. I try to vet them as best I can by reading their research and I look for things like teaching at medical society conferences to find the leaders in the field.

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I have been in the medical field all
my life and I truly believe a doctors job is very difficult. They see so many patients a day, and work at a very fast pace. I too have been undiagnosed with an auto-immune disease for 15 years, but with the help of my neurologist, endocrinologist at Mayo Clinic and my own research, I finally feel I have a great team! So never give up, just become part of your care team!

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@57hypo

I have been in the medical field all
my life and I truly believe a doctors job is very difficult. They see so many patients a day, and work at a very fast pace. I too have been undiagnosed with an auto-immune disease for 15 years, but with the help of my neurologist, endocrinologist at Mayo Clinic and my own research, I finally feel I have a great team! So never give up, just become part of your care team!

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@57hypo I'm glad you advocated for yourself until you found a good doctor to help you, and it's no surprise to me that you found that at Mayo. I also joined my surgeon's team so to speak and did everything I could to guarantee the success of my recovery. That is exactly how I thought a bout it… that it was a team effort and we all needed each other to make it work.

I agree. Doctors have stressful jobs and that stress affects both the physician and the patient's care. I would not be able to face the trauma they see and work with in their jobs, and the sadness of loosing patients in spite of the best that medicine could offer, so we as patients need to keep that in perspective. They are human just like us. I always approach my physicians with gratitude and kindness, and I believe that this helps both of us. It helps me dissipate my worries, and my doctor knows I appreciate them and this leads to better care. I have found that by being genuinely kind to any of my doctors, that I really do get their focused attention, and I can relax and enjoy their company as well as have a productive appointment. It's amazing what kindness can do.

Here is a story about a surgeon that I didn't want to operate on me.

One of the surgeons I saw prior to coming to Mayo was very arrogant and would not spend more than 5 minutes with me. He looked at my MRI by himself before he came into the room, didn't review it with me, only did one test of my hand strength, and wouldn't answer my questions, and ran out. What he did accomplish in that 5 minutes was to present my situation as significant spinal cord compression that needed an urgent fix and he started some serious anxiety for me as a fearful patient. I had to talk to his PA to ask questions, and that was only after they have finished procedures for the day by phone, and it was apparent to me that the guy just wanted to go home for the day. When I went back for a follow up to go forward, I was having dizziness and leg pain. Only the PA saw me, then he disappeared, and came back to tell me that the doctor wanted me to go to a rehab specialist first, and resolve the leg pain, and after that, he could do my surgery. I had also requested to do a blood test for immune reactions to materials in implants, and they refused to authorize it, even though I would pay out of pocket. I scheduled the rehab appointment, but when I got there through some mistake, I didn't have an appointment. At that point, I gave up.

This surgeon owned his own surgery center with a group of doctors, and did multiple surgeries like what I needed a day ( 30 minute procedures) and there were no choices for the patient , except to do the surgery with the specific hardware and implant that he wanted to use the same on every patient. I knew that my leg pain was caused by the spine problem in my neck because it turned on, or turned off the pain when I turned my head. No one would listen to that. This doctor didn't recognize my symptoms and relate them to my condition. All the surgeons I saw before Mayo, missed the same thing and I found medical literature with cases similar to mine with these unusual symptoms. This surgeon constantly sent quality of life surveys to me that continued for 2 years. I would have explained that I'd resolved the problem and recovered, but his surveys were only multiple choice. I'm glad I wasn't a patient on his assembly line. From this, I learned what I didn't want or trust in a spine surgeon. I knew enough about it to ask intelligent questions, but they didn't care. I just don't think patients should be treated this way. I have to wonder if the limited time each patient gets is to try to maximize profits at his surgery center. It seems they want to rush you through surgery as long as there are no complicating factors.

So, for the very wonderful Mayo surgeon who did help me in a procedure that took an hour and a half (for his part) with a half hour prep time, I wrote a complimentary letter about him and my care to the CEO. I gave him a copy of that, and a copy of the CEOs personal letter back to me. I thanked him face to face for helping me right before we went into surgery, and because he was so kind and helped me overcome my fears about surgery, and because he saved my physical ability to work as an artist, I painted his portrait as a gift. I'd also explained in a letter I wrote to him why it was so important for me to do that, and I thanked him. He trusted me and posed for some photos at a followup, and from that, I painted his portrait. He absolutely loved the painting and now has it in his home to enjoy forever, and I have a doctor committed to my care for any further needs, and he gave me the choice not to have hardware or foreign materials placed on my spine. That's my story and you can find it on the Sharing Mayo Clinic blog in the link below. Now who would you pick if was your choice?

https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@jenniferhunter

@contentandwell JK, I'm sorry you were misdiagnosed too, but by sharing our stories, we teach others the importance of asking questions, learning as much as you can about your condition, and 2nd, 3rd, 4th opinions…. and firing a doctor who isn't helping you. That doesn't feel good, and you start over searching for help. Doctors don't always tell you everything they are thinking, and I always get my medical records from my visits and look up everything they write about me and I learn a lot. That can also tell you if they are venturing the wrong direction, and if they are not listening to the patient, how can a patient get the right care? It's all based of honest communication, and mistakes can be made so easily. Doctors are human and can be distracted or irritated and that affects how much they will understand from you the patient. I try to vet them as best I can by reading their research and I look for things like teaching at medical society conferences to find the leaders in the field.

Jump to this post

@jenniferhunter I do the same, Jennifer, and did much research but never came across liver problems! My local doctor is highly regarded but he missed the boat on me. The doctor I started with thought I had Alzheimer's after I had one HE episode! She was history as soon as I could find a different doctor.
I was a mystery to my PCP, and my hematologist who I was seeing because my platelet count was low and continually getting lower. It was finally the neurologist I was sent to who hit on it being my liver. Interestingly, my sister mentioned my symptoms to her niece who is a nurse and her niece said it sounded like liver! My sister never wants to interfere so she never told me that until afterward.

@jenniferhunter That's really terrible about your care with the first doctor, but please be assured that not all spine doctors are that callous. My brother-in-law had spine surgery last year in Boston, done by a wonderful doctor who was caring and did a great job.
JK

Liked by Jennifer Hunter

REPLY
@contentandwell

@jenniferhunter I do the same, Jennifer, and did much research but never came across liver problems! My local doctor is highly regarded but he missed the boat on me. The doctor I started with thought I had Alzheimer's after I had one HE episode! She was history as soon as I could find a different doctor.
I was a mystery to my PCP, and my hematologist who I was seeing because my platelet count was low and continually getting lower. It was finally the neurologist I was sent to who hit on it being my liver. Interestingly, my sister mentioned my symptoms to her niece who is a nurse and her niece said it sounded like liver! My sister never wants to interfere so she never told me that until afterward.

@jenniferhunter That's really terrible about your care with the first doctor, but please be assured that not all spine doctors are that callous. My brother-in-law had spine surgery last year in Boston, done by a wonderful doctor who was caring and did a great job.
JK

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@contentandwell I'm glad you got it figured out. I think talking to other patients who know these problems inimatly might be one of the better ways to questions what might be wrong, and of course a nurse who takes care of those particular patients would be a great resource too. We just have to keep asking questions until we get answers. All these overlapping symptoms can be very confusing. I've had some neurologists who were pretty sharp too and figured stuff out that other doctors missed.

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@adah

Thar was a great post. I need to send it to my doctors. Here they are clueless. They just tell me you are psychic and depressed. And l went to my rheumatologist and he has more sense then my general practice doctor. They keep trying to give me antidepressants and sedatives and l have to keep telling him about meds l can't take. So he the next one on the chopping block. And they want people to go to doctors???? And when l tell my insurance not to pay them , they say we have to know question asked. Well isn't that something no wonder they want to run all these test and prescribe medicine that makes your HE worst. But we need to hear from more hospitals and doctors who are researching HE. I go to a lot of journal from the UK because they were dealing with this more before but now it seems like everyone is dealing with it. But l.will definitely pass this on because some people don't have a diagnoses.

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Last week l guess l had the stomach flu because l was throwing up for 3days and not eating. Before that l went to after care clinic and the nurse practitioner gave me prednisone 50mg. And my hear was just beating rapidly so l had to go to the hospital. And the doctor diagnosed me with tachycardia and referred me to a cardiologist. And to me he's the best because he ordered blood workup and called me personally to tell me to go to the er stat because he thought l had a embolism. But l didn't Praise God but he still had me do a MRI and CT scan. I am supposed to see him for the results today. But one person mistake can cause you so much trouble. Then l had a flare up we don't know if it's my AE or HE but l can't walk, slurred speech and tremors. I don't get it often but it does happen sometimes. And my PCP didn't have any problems with me driving because l know when l have a flare up. I can't walk. So l have to take 2 meds for my liver so l had two doctors prescribe a refill because l was out of the medication and l have a new neurologist and when he filled out my dps form he said l couldn't drive because l delusional because l didnt know who he was the first time l met him but my follow-up appointment l was talking normal like l knew him a long time. But my doctors don't understand when l dont have both meds l will have problems. So it really isn't my fault because l didnt get my medication that l needed until the 27th because they put me in a psych ward. So l tried to tell dps and they said it's the law if you are not coherent your license is suspended for 6months. So now l have to appeal it but when l tried to explain the women said you won't win because it's a law. So l had to file with ADA because they are discriminating my rights. I even called the live foundation and they said they have heard people who have heard where patients have had issues but never with a patient not getting their medication and being denied there rights. So l just want to know if anyone has had these problems. And l never had an accident since my TBI in 1997. I had to take a driving ed course where they go out with you to drive. And my grandson with autism is learning to drive and he can't speak.clearly or do anything without help. Sounds crazy.

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I know l probably talked about me going to the hospital and then they transferred me to the psych ward in December. Well l just got copies of my records from both hospital. Well the first hospital l went to didn't have a list of my meds to be transferred to the psych ward when they sent me there. And then the psych war was giving me a med that l had been allergic to for over 10yrs. Now the hospital had it documented that l was allergic to the medicine. And at the psych ward they were giving me meds that they thought l was still taking. And l have to te these doctors about hepatic encephalopathy
So l called the medical board and I'm going to report the hospitals and the doctors because the symptoms of mood swing and delusion is all part of hepatic encephalopathy and encephalitis. And l am always reading how doctors are misdiagnosing people with HE, AE and encephalitis and they end up in a psych ward or on psych meds. And we are seeing more people on meds instead of being treated for there illness. It's so sorry that doctors are not having continue education on this illness because we are all searching to find the right doctors whi knows about this disease instead of a psych diagnosis. And l was so reading if all test comes back normal it doesn't mean the patient doesn't have the diagnosis sometimes it takes questioning the family and looking at the symptoms.

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@techi

I know l probably talked about me going to the hospital and then they transferred me to the psych ward in December. Well l just got copies of my records from both hospital. Well the first hospital l went to didn't have a list of my meds to be transferred to the psych ward when they sent me there. And then the psych war was giving me a med that l had been allergic to for over 10yrs. Now the hospital had it documented that l was allergic to the medicine. And at the psych ward they were giving me meds that they thought l was still taking. And l have to te these doctors about hepatic encephalopathy
So l called the medical board and I'm going to report the hospitals and the doctors because the symptoms of mood swing and delusion is all part of hepatic encephalopathy and encephalitis. And l am always reading how doctors are misdiagnosing people with HE, AE and encephalitis and they end up in a psych ward or on psych meds. And we are seeing more people on meds instead of being treated for there illness. It's so sorry that doctors are not having continue education on this illness because we are all searching to find the right doctors whi knows about this disease instead of a psych diagnosis. And l was so reading if all test comes back normal it doesn't mean the patient doesn't have the diagnosis sometimes it takes questioning the family and looking at the symptoms.

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Hello, @techi,
I moved your message to this discussion you started before so that members here will see your most recent message and can respond.

How are you feeling now?

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@techi

I know l probably talked about me going to the hospital and then they transferred me to the psych ward in December. Well l just got copies of my records from both hospital. Well the first hospital l went to didn't have a list of my meds to be transferred to the psych ward when they sent me there. And then the psych war was giving me a med that l had been allergic to for over 10yrs. Now the hospital had it documented that l was allergic to the medicine. And at the psych ward they were giving me meds that they thought l was still taking. And l have to te these doctors about hepatic encephalopathy
So l called the medical board and I'm going to report the hospitals and the doctors because the symptoms of mood swing and delusion is all part of hepatic encephalopathy and encephalitis. And l am always reading how doctors are misdiagnosing people with HE, AE and encephalitis and they end up in a psych ward or on psych meds. And we are seeing more people on meds instead of being treated for there illness. It's so sorry that doctors are not having continue education on this illness because we are all searching to find the right doctors whi knows about this disease instead of a psych diagnosis. And l was so reading if all test comes back normal it doesn't mean the patient doesn't have the diagnosis sometimes it takes questioning the family and looking at the symptoms.

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I personally believe the problem you describe with doctors misdiagnosing people with Autoimmune conditions is common in many medical communities. There are so many of them and sometimes I personally believe that it is easier to diagnose the most common diseases…it's faster and takes less work to research it, test for it or discuss with other doctors. One of my own specialist doctors told me that, in regard to one particularly troublesome symptom that I reported to him, he "didn't have anything for that." Wait? What? I asked him because I knew he would be able to address it. Yet he brushed it off and that was that. He certainly did not refer me to anyone else either. That was really a punch in the gut without any further discussion. Yet I am stuck with him, at least for now. Lisa, I am glad you still have the ability and courage to pursue help. We AI patients need support in many different ways and I am grateful for it wherever it becomes available to me. Thank you for sharing with us. It is a tough road but you can do this. One of my doctors told me "Stress is not your friend." That was simple enough for me to remember and a goal that I reach for daily. Perhaps it would help you too.

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