A Zebra Among Horses
It has been almost a week since I had my appointment with Dr. Samady at Emory University in Atlanta, GA. A whirlwind trip. Flying in Tuesday by 4:30 and flying out at 9 PM Wednesday. My wonderful friend Debbie, who is a nurse, accompanied me on this adventure. The campus is immense and under construction. This posed a few hassles. All of which were worth the trip. Let's get to the meat and potatoes- the appointment.
We navigated from hotel to campus by bus and found the building. The very first thought as I walked into the waiting room? YEP- I'm a zebra! Not only is this disease like being a zebra among horses, I literally look as though I do not belong here. Scooter and wheelchair haven that day and of course most are of retirement age. I saw one other woman who was middle aged and I could have sworn I saw her out taking a drag on a cigarette before we came in! Here I stand looking like a zebra among horses. It is not that different in my local cardio's office, but the sheer volume of people in this large venue, made the percentage of them to me, even more noticeable!
I already knew this would be a good experience. After having to educate so many of the people in the healthcare field who were trying to help me, it was bound to be a relief to not to have to explain myself in such detail as to win them over! Dr. Samady has seen quite a few MVDers (now often referred to as CMD). He would not ask me to waste my breath. I could actually listen to more input instead of getting short of breath over my out put! I was excited and of course noticed as I waited, I was the only one popping nitro in this waiting room. "Wah-wuh, Wah-wuh, Wah-wuh." What's that you say? Haven't you ever heard a zebra? They do not "neigh." You know your gonna Youtube it now!
They trotted over to me and had me all set up right on time in a stall..err.. an exam room. Did the usual EKG, BP and pulse checks. All of which, were stellar of course! :) My diastolic was low, but it often is. An office nurse came in, took my patient packet and had a copy for me of my meds printed out so I can use it for other docs. Nice! Then I was left to my thoughts for a few minutes and started to look over my questions and points to cover. In no time, the white coated horse trainer came in!
We exchanged pleasantries and I made sure I said 'hello' from quite a few of his patients that I know. He was right down to business. He said he read over my pages but wanted to hear my story of how this began. He was astounded that my first cardio, in the end, argued with me that MVD/ CMD was not possible in the heart as wouldn't it be elsewhere? I gave him all of my specifics and we started to detail what I do and what works for me. He said, "You tell me what has been working. If you were to pick one thing to have to fight this?" Of course, what else? My BFF nitro! His eyes became saucers when I said I recently took 50 SLs over a 6-7 hour period. His eyes became even larger and shook his head when I said I monitored my BP and no, it did not move!
I explained, several times, I needed him to be a contact for my local cardio and myself, should we have issue with the next steps in treatment. If and when this worsens we need guidance. My local cardio wanted me to come to him. I was his only patient with MVD/CMD. His only zebra! Me telling about my symptoms sounded like that odd zebra sound among all that neighing and I bet it annoyed him he did not know what to do to quiet me. Quieting a zebra was not as easy as a horse. He would feel more comfortable treating me with all of this nitro, etc knowing what treatment is typical and what protocol to follow for the direct admit and IV nitro should I ever be unable to cease the angina.
Dr. Samady completely understood. He said, "There are many who believe this to be a benign condition. I have seen first hand, that is not the case." In response I agreed, "They do not even encourage going into the hospital as I am not likely to have a heart attack in their eyes. Then I would say, in response to them- No, I may not today, but I would love to keep all my myocytes please! I want to AVOID future heart attacks!" He smiled, "That is what we want to do." He saw me for the zebra I was and did not mind I sounded much stranger than the usual horse. He has heard these crazy sounds before!
We went over some possible CCBs that do not have sulfites in them (an allergy of mine). He also noted I did not have a catheterization. Well, I had a Cardiac PET scan and a Cardiac MRI. The absence of a cath did not worry him. Something else would have shown up by now. He was not shocked all my tests were mostly benign. Then he was thoughtful. He told me there is the non-invasive CPET or MET-Test you can have done. It is a cardiopulmonary exercise test. They use it in heart failure patients for assessment and if you have the right doc to read for MVD, it can be very beneficial for 'evidence.' It is paralleled to others who did have cath AND CPET to show microvascular ischemia and how it relates to exertion. The test uses a mask while you exercise to measure output. This can show how efficient or inefficient your cardiopulmonary system is operating and whether there is an ischemic burden during exercise. I have details about this on the Coronary Microvascular Disease page. (Look for MET-TEST picture.)
Before I left the exam room, we had gone over many things. Dr. Samady asked a lot of questions about my individual presentation. It still amazes him our stories are all so similar. It often seems to come out of the blue and like me, others have been otherwise healthy. He explained they do not know enough about it. They do not know what kills and does not kill cells. They can not see this action. We must stay ahead of the angina and live in a way that manages our symptoms. The spasms and other symptoms can be difficult to control. It is a changing model. Not easy to treat as we need to be aware and adjust to keep on the right track of what works. He also discussed nitro tolerance but that quite a few use the patches even through the night because they must to keep it under control. I confessed when I have forgotten to take off patches those are the mornings I feel the least constricted upon waking. Usually I am barely awake and ...there's Beastie.
Before I left the campus hours later, I already had a connection to a CPET facility closer to me in PA. The next morning, that facility called me to make an appointment! All set up including script and insurance worked out. How very efficient! I said, "You must like zebras." Silence on the other end. :)
We joke about the zebra comparison on other sites. It's ironic no? To us it feels like we should stick way out of this horse crowd of typical coronary artery disease, yet the evidence hides and is not not easy to see. I think a lot of docs figure, I don't train zebras!! Well, we are physiologically the same. We present differently and what we take may be more than they are used to. Why should this surprise them? We are different. Treat the zebras too!
Edited November 12, 2012 at 9:25 am