One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012


Wednesday, July 11, 2012

Vanderbilt's Medical Disconnect


                I have traveled to Vanderbilt to get the final word on my ongoing disability. This trip was a mixed bag of feelings and hopes; let downs and encouragement. What I do understand is that at Vanderbilt there is a complete disconnect between the Cardiovascular Heart Institute and the Neurology sub-department, Vanderbilt Autonomic Dysfunction Center. Even though vasovagal syncope is considered an autonomic dysfunction, these two groups are working independent of the other and in turn are not properly serving the patients who seek treatment.

                This disconnect was summed up by my doctor’s mantra, “Not my specialty.”  I feel that it reflects what I have experienced in every other doctor’s office. If you cannot check the easy diagnosis box, then you get dismissed. Additionally, if you show you are human, frustrated, upset and feel confined by the disability that has struck you, it only ensures that you will be treated with even less care, dare I say, even less heart. Worse, in the case of patients who have autonomic dysfunction, if you can easily be classified as one thing, then all the other symptoms you may present are dismissed because they are “not the specialty” of the doctor you may be seeing.

                This experience has made me wonder if Vanderbilt even understands that they are sending some heart patients to the neurology group and some neurology patients to the cardiovascular group and that there are patients who might actually transverse the two? In my case, I believe I transverse the two and was met inexplicable with, “Not my specialty.”

                Allow me to explain the process. In order to be seen at Vanderbilt you must be referred by a doctor and then you are either accepted or rejected to be seen. In my case, I believed that autonomic dysfunction was a general specialty. Actually, I was referred to the sub clinic in Vanderbilt’s Cardiovascular Heart Institute and my request to be seen was never referred or reviewed by Vanderbilt’s Autonomic Dysfunction Center. This set up a dissatisfying visit with Vanderbilt.

                I arrived to learn all about vasovagal syncope, something I was already familiar with and doing all the “recommended” life changes to deal with. The tests they did verified that I am not suffering autonomic nerve damage that is related to the autonomic cardiovascular system.  This is encouraging. My current condition may not be permanent and has a chance to be altered, just not by the physician I saw. What I really was and am concerned with is whether or not there are other things that can be done to help my condition. In other words, I would have been better served by going to Vanderbilt’s Autonomic Dysfunction Center.

                Outside the medical aspect of my visit, I continue to be frustrated with doctors and the doctor process. I went and did the testing and did not know what the testing was testing for! Then I went to the doctor’s office and met with his nurse. With her I gave my entire history as best as I could and she left. Then two medical students came in and required that I give my entire history AGAIN. I was extremely frustrated and told the medical students that I was frustrated. I told them that I knew to up the intake of my salt and to make sure that I drank more than the recommended 64 fluid ounces of water a day.

                In walked my doctor who promptly began to tell me to drink lots of water and increase my salt intake. Really? This left me suspicious that my file had not been reviewed by this doctor. That all the paper work I had filled out, all the medical records from all the specialists I had requested had not been reviewed by this doctor. The more he talked the more frustrated I became.

                Sensing my discomfit, the doctor asks me, “I sense that you are angry at me. Why would you be angry at me?”

                Again, really, doctor’s need to check their egos at the door, when patients show emotions they are about the patient. I was crying tears of frustration that I was obviously being seen by the wrong specialist and further this doctor, who is also part of Vanderbilt, was clueless as to the signs and symptoms of Autonomic Dysfunction in general. He couldn’t even discern if a recommendation to the neurology sub clinic was in order.

                I started my response by explaining that he had not said anything about the tests that had been done that morning, tests that I didn’t even know what were testing. Further I explained that I had not driven four hours, stayed in a hotel and put myself through all this stress just to hear a doctor tell me I should drink more water. I am already drinking more water than most people ever dream about drinking.

                I pulled myself together and started asking questions. He suggested a drug that I have not tried in the past and said he would put together information that stated that my condition certainly predates my request for disability, another positive.

                Then I asked him the killer question, “Did you look at all the medical information that was forwarded to you prior to my visit? My echo cardiogram? My other heart tests?”

                “Why would I do that?” he replied.

                Really? Then why did they require me to give the information?

                “I was hoping fresh eyes might ensure that nothing was missed. That your expertise might demonstrate that everything was done.”

                Actually, I just wanted to confirm what I already suspected. I was just another number herded through Vanderbilt’s Cardiovascular unit to be rubber stamped and charged. Everything he said after that was irrelevant. By that time I wanted to leave, my humiliation was complete. Frustrated to the point of crying in front of two med students, a nurse and a doctor my stress was at my limit.

                Since returning home, I have pulled it together enough to call Vanderbilt and complain hardily about my treatment. I have asked the questions about why a doctor treating an autonomic heart dysfunction wouldn’t know or even be aware of Vanderbilt’s Autonomic Dysfunction Center. I wanted to know how these two different groups were ensuring that patients like myself were not being sent to the wrong group and why the complaints that expanded beyond “a doctor’s expertise” were being completely ignored.

                The Patient Advocate called back and told me that my treating physician saw nothing that indicated a neurological dysfunction or anything that would suggest that I should be referred to neurology. In addition, the Patient Advocate also spoke with the head of Vanderbilt Cardiovascular Institute who concurred. I asked her to verify for me that balance issues, word confusion issues (for a writer), hot and cold flashes, a sudden change in overall health three years ago and all the information collected by my Rheumatologist were solely caused by a heart dysfunction I have had my entire life? She then stated that normally a Vanderbilt doctor would speak with the referring physician and that no one spoke to Dr. Cynthia Elliott Lawrence or even my old cardiologist.

                I again asked how I could trust the Vanderbilt doctor’s opinion when I still do not believe that he had bothered to review my file? I pointed out that his boss would naturally side with him because doctors do not like to have potential gaps in their diagnosis process pointed out. The Patient Advocate said that a cursory review of the medical files are done to ensure that a patient is in the correct specialty and I concur that it did no harm to be seen by the autonomic sub group of the Vanderbilt Cardiovascular Institute. It also did no good.

                I reiterated that my concern was the disconnect between Vanderbilt Cardiovascular Institute and Vanderbilt Autonomic Dysfunction Center, when in truth, these two specialties overlap. I asked why those questions were not being address. I stated that my hope was that the two specialties could put into place a mechanism that would allow persons like myself, who transverse these two specialties, to be properly treated.

                After speaking a second time with the Patient Advocate, I am not sure that my concern is being heard. And here is the rub. I am sick. What little energy I have I would like to focus upon my family and having distractions like this simply cause me to give energy away to people who aren’t hearing me. What do patients do? How many like me have had a similar experience and are sent home to complete disability thinking they have all the information they need when in truth more could be done?

                I’ll continue to blog about this issue and follow up with Vanderbilt. I am thinking about sending my experience via this blog to autonomic dysfunction advocacy groups in an attempt to find others who have had similar experiences. The fact remains that if a patient who doesn’t fit easily into a box wants to find healing, they have to literally and daily do battle with their bodies and a medical system that just wants patients to fit in little squares. They have to battle a system that has separated the body down into specialties to the exclusion of all other parts of the body’s functions and systems. This has to change. Not just for my health and the quality of life my family enjoys. It must change for all the other patients who have whole system dysfunction and are being shoved into a single square diagnosis. I had hoped for so much more from Vanderbilt.

3 comments:

  1. Lydia,

    I too have been seen by specialists who didn't take the time to review my files. It was difficult enough with all of my physical problems re-explaining but when I had to do that with psychotherapists I threw a fit. The clinic I attended has had trouble keeping staff and I've gone on an off due to insurance issues over the years. I've had three or four psychotherapists and had to re-explain why I have Post Traumatic Stress Disorder every time. The last time I throw my book on the coffee table in the room and screamed "Why don't you people ever read my file!" She calmly said, "I didn't have time we're short staffed." To which I replied "That's not my business." I did eventually pull myself together and she's been helpful since. My point is I understand.

    I understand what it's like to be treated like your different symptoms don't matter or you're making them up. I understand what it's like to feel like a survey or test result rather than a human being.

    I would like medicine to include western diagnosis but have the eastern wisdom of whole health.

    Don't give up. Don't surrender. You can do this. Right now it feels hard and you may have to do some research on your own or find different doctors, but you will make it.

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  2. I thought I had posted on this... maybe on facebook. I am sorry this was your experience but happy to know you are strong and will move beyond others incompetence. This has been a long battle, I know.... and you do it with grace. Love you sis.

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