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| With my Favorite PCP in 2007 |
My Valentine's Day was a good one, not because of romance and love (although I felt very loved), but because I was reunited with my favorite PCP and am now a patient of his again. Having him back on my team is a huge relief and great comfort to me.
I did not start blogging until 2005, so many of my early challenges to find doctors who would validate, or even care for me, have not been shared on this blog. Needless to say, it is awful to be terribly sick and know that something is terribly wrong, yet be unable to find a doctor to pay attention.
By 2002, I had seen many, many doctors including a LOT of primary care physicians and internists. Even with the diagnoses of a POTS and NMH from a positive tilt table test as well as Chronic Fatigue Syndrome, I was facing illnesses that were so little known and so dismissed in medicine at that time (and still are). If you asked many of those early doctors about my situation, it was all in my head, of course.
In my last appointment with a PCP before meeting Dr. Listener, I was told "I will treat you for any other problems that come up such as a cold or the flu, but I will not be involved in treating you for or trying to help solve your other medical issues." Gulp. I remember leaving the appointment, sobbing in the car, feeling as if yet another doctor had thrown me out into the street. Why wouldn't anyone help me?
My dad had been seeing Dr. Listener, and he agreed to see me as a patient. I ended up in his office for an emergency appointment, incredibly sick from a medication that one of my POTS specialists had put me on.
For the next five years, Dr. Listener cared for me with humility, grace, compassion, and empathy. He believes that if a doctor simply listens to a patient, much of the time he can figure out what is wrong. I cannot tell you how many times Dr. Listener put together the pieces of the puzzle just by listening. This is why my PCP will be called Dr. Listener from now on. His gift is in listening. His gift is in knowing when to say: "I don't know what to do." His gift is in saying: "I will pray for you. I'm sorry you are going through this." His gift is in being willing to trust me, the patient, and what I say about and do with my body. His gift is in having the willingness and humility to be part of a team. His gift is in problem solving. His gift is in validating and never minimizing.
So, when he announced in 2007 that he was leaving our local practice to move to a different location 45 minutes away we decided, through my tears, that I needed to have a local doctor in case I was hospitalized. I agreed and switched to another well-respected member of his practice and stayed with her for four years until she left last Fall. I never clicked with the new doctor the way I had with Dr. Listener, but I had few options to switch. One of the most important roles of a PCP locally is to work with Medical Assistance to get my prescriptions covered and refilled. This process continuously broke down with the new PCP as did communication with my specialists.
Because there are only a couple of major practices in town, and I wanted to stay within the system I am in (all of my specialists are there), I could quickly be accused of Doctor Shopping. I would also be in a bind if the new doctor I saw was worse than the one I had been seeing!
When Dr. PCP left last Fall, she and I agreed that I would be best off with an internist instead of a family medicine practitioner. Again, I started the search for a new PCP. Again, I found myself facing the same patterns I had when I first got sick. Both internists I saw dismissed me, did not listen, did not show respect for or interest in the treatments and doctors I had seen and was seeing. One said he had been taught not to believe in Lyme so he had to stick with that, and the second, while looking at her computer the entire time, said I must have been 'having some vertigo or something' if I had a positive tilt table test. I wanted to scream: I am LYING down on the table here because it is so hard for me to sit up!
This post isn't about going into the details of those appointments and what made them so bad, but it was disheartening to find that much of the treatment of patients with mysterious and complex chronic illness has changed little since I first got sick.
I had tried several times to return to Dr. Listener, but because of my insurance his office was not accepting any new patients. All of this time, my dad had continued to see Dr. Listener, making the drive regularly to keep him as his PCP. Finally, Dad told Dr. Listener that what I really wanted was to be his patient again. Since our hospital now uses hospitalists, it is no longer relevant that I have a doctor who has rounds here.
Because he made an exception to see me as a patient the office was willing to go through the hoops necessary to accept another Medical Assistance patient. So, on Valentine's Day, I was reunited with Dr. Listener. In our first appointment he helped me with things that my other PCP had been dismissing!
It took five years, many tears, and a lot of persistence to find my way back to Dr. Listener. Finding a PCP who will work with patients like me is a rare and wonderful gift. I'm humbled, grateful and relieved to have Dr. Listener back on my team.
Blessings,
Emily
