This week amongst the chaos of a political transition, and watching all the advocating and demonstrations, I found myself contemplating being an advocate of a different nature – my own. After an initial consultation last week at the transplant center with a specialist, I walked away feeling as though I was not actually heard, or even worse, that my health history wasn’t adequately considered. This lack of communication and trust is no way to begin a relationship.
Starting over with a new doctor is always difficult for me because my health history is somewhat confusing. Being an “outlier,” as I was called at my last appointment, has done a disservice to my recovery because as the doctor put it, “I am not easy.” That is right, Doc. When it deals with matters of my “heart,” I have never been easy. But when it comes to my heart health, that presents a huge problem, because most patients follow the same trajectory of sickness and recovery, therefore that predictability makes treating patients successfully just “another day at the office.” Then walks in me. No preconditions; young with no other health issues; somewhat asymptomatic with mild-moderate limitations; medications not tolerated even at the lowest dosages and no foreseeable progress to recovery. What to do with me? All before did exactly what this specialist has done; order a bevy of tests – most of which I have taken numerous times before.
Per my experience, first the new cardiologist completely denounces all cardiac diagnosis, tests, and any hands that had anything to do with their completion. It is my understanding that anyone who came before was unqualified and that ALL the tests will need to be performed again; the caveat being this time, and only this time, they will be done correctly and the results will be the “true” results. However, most results are consistent with the last. This specialist made a dismissing remark about my file of 8 years and 5 cardiologists being so thick with test results. Hmm, you think? I should have explained that it simply was a crypt of those egos that came before him; all pierced through and attached for the next ego to judge – “don’t be the next victim.” Not sure he would have seen the humor but I find the metaphor satisfying. I understand that tests are necessary – until they are unnecessary. Tests are expensive, even with insurance. And more pointedly, some tests are invasive, painful or just plain bothersome and embarrassing. Why put me through more without justification other than stroking your own ego? If you think I may be angry by this constant prodding, your assessment would be correct.
So, on par with my previous experiences, this specialist called for tests – tests I have completed before and was provided in his file. I expected it, and was willing to participate in the spirit of searching all nooks and crannies. Not happily, but willingly. I went home that day knowing the following week I would begin with stroking the new specialist’s ego – but also knowing something else, the new tests would show the same results as the tests I took last summer. I hemmed and hawed for days on whether I should say something, even though I wasn’t heard in the initial consultation the first time; or just pay and endure the testing I would take, even without an explanation as to why I was doing them again. My husband listened to my bellowing patiently and echoed my own frustration at the circles we seem to constantly plod along in our journey with heart failure. We have passed this patch in the field before, we both know it, but we also know that part of being a good patient, is patiently waiting as the doctor comes to his own conclusions. No matter how much money or pain it costs us.
My husband and I are intelligent. We stay informed on my health and what the purpose of the testing ordered is; and how a diagnosis will determine our future. We come to appointments prepared, each with our own questions and, we think at least, something constructive or useful to add to the conversation. We are never passive. But this specialist dominated the conversation and didn’t listen to what our experience with MY condition in particular, was. He missed an opportunity to confer with “experts.” Yes, I AM an expert at my own symptoms, what has and hasn’t worked in the past, how my testing has mirrored or disproved my condition, and in general, what it is like to live in THIS body and with MY particular ailment. You would think for someone that says, “I am not easy,” that any additional information would be welcomed. My husband knows this information second to myself, because I am verbal with him on those symptoms and he is actively involved with my health issues. We should be conferred with just as much as any other “expert.” Coming together with a heart failure specialist should be a “meeting of minds” or a meeting of “experts.” This is what makes a healthy doctor/patient relationship and has also proven in medical research to increase the chances of a successful recovery. This meeting was one-sided however.
It is deeply embedded into our society that a doctor’s opinion (especially a specialist) is unquestionable – a wisdom beyond refute. And therefore, we showed respect to the establishment of the transplant center we were at, and of the employees in it. And beyond that, we are southerners, so in everything, we are polite. It is difficult to point out that our experience there was less than stellar. Finding your own voice can be intimidating because you are looking for a solution outside your own understanding in that environment. You lean on your health professionals to search for answers for you. And sometimes of even greater importance, in such a shaky time in your life, you look for “care” in healthcare.
We came to the conclusion that the lapse we had in communication with this specialist last week was too gaping, and really just a “deal-breaker” in building a strong relationship. There are certain “non-negotiables” in my medical care. Not listening is one of them. I mean, I am trusting this man with my very life! My husband is trusting him to save his wife and the mother of his children! As in any relationship, without communication, we have nothing. The risk of losing my fight because of communication issues, or ego, is too great a price. As this is not a trivial matter, we decided to cancel the tests he ordered and request a different specialist at the hospital. This decision came with some nail-biting as they do not have to assign me a new specialist and unfortunately, this will be viewed as somewhat of an insult. I hope it isn’t, and more seen as an incompatibility issue, but conjecture, his and mine, being just that, who knows? We had to base future results on one meeting, and that takes a bit of gambling and “going with your gut” instincts. So we rolled the dice in the hopes of a better outcome. Only time will tell if it was a sure bet.
When you are sick, you lose so much. The life you once lived is behind you and new “normals” are internally negotiated and constantly tested. The biggest is our loss of ability to control our situation and, not only how it affects us, but also our loved ones. Losing that ability to control your own path is frightening. And having to trust people, such as doctors, that you really have no frame of reference in doing so, even more so. Each time is a leap of faith. I like the firm ground. I know where it is, and I know what to expect. It is concrete (pun intended). I know I am a control freak; this is what makes putting my life into the hands of another so challenging. But I think I am fair in their assessment. I don’t want anyone to conclude that I think I know more than doctors, I don’t. I don’t presume to. What I do know is when I am being dismissed; when I am considered as an unimportant partner in my own healthcare – and that assumption is careless, if not dangerous.
In this world, we all face times that are simply out of our control. But what we always have control of is how we react and respond to those difficulties. In healthcare, gaining some control means asking questions, pushing back when you feel railroaded and saying “no” sometimes. Yes, it is scary to do this, and has effectively taken 8 years for me to find my own voice, but what I have learned is that I am my own best advocate – alongside my husband. Nobody wants more than we do for a successful outcome and so we have to trust in our own instincts. And, we have to trust the staff in which we share that responsibility. I cannot trust anyone who cannot take the time to listen. Southern or not, I should not feel like I have to apologize for that. There are times in life to be polite, and to sit back quietly and listen. When it comes to your health, your very life – blush if you must – but protest loudly and unapologetically if needed. If you don’t, then who will?
Dear Mrs. Jones,
I sympathize with your situation. I went through several months of diagnoses that revealed nothing. Eventually, a visit to the ‘cath lab’ revealed 5 restricted arteries with 2 of them about 90% restricted. 5 bypasses were the result. Very painful but I was on the way back to health, I thought. 4 years later one of the bypasses was shown to be blocked. This was due to the bypass being of vein material, with a valve and installed backward. This bypass was never working as intended. So, 2 stents later, I was back on the road. Following all this was a continuing series of different drugs for reducing blood pressure and/or cholesterol. The whole thing has finally settled down and I now have a reasonable. My point is that what you’ve dealt with, though somewhat different, is still a trial in patience. I hope it all works out successfully for you and family. Best regards, Sam Creecy KK4VTC