First here is a brief synopsis of the past week:
Last Wednesday (after my Saturday night page to Dr. Pain): I called the pain clinic to speak with a nurse. I received voicemail and did not get a call back.
Thursday: Received a call back from one of the nurses in the office (the only nice person in the office I fear!). I described my 'failed trial' of Neurontin, told her about the other medications my ANS specialist had recommended, asked if Dr. Pain would please contact my ANS specialist directly to discuss my case. She said he would be more than willing to do so. I gave her the phone number AND email address of my specialist (who, I am now getting tired of writing out ANS specialist, so I will call him Dr. ANS). I clearly stated that I knew Dr. Pain was leaving town on Monday (today) and needed to contact Dr. ANS by end of day Friday. I also clearly noted that Dr. ANS would be out of town the two weeks following Dr. Pain's vacation. Of course, Dr. Pain was not in the office on Thursday.
Friday: Received another call from Dr. Pain's office asking me to call. Also received an email from Dr. ANS stating that he was looking forward to speaking with Dr. Pain. Called Dr. Pain's office and was told he had prescribed Lyrica. I said, "Okay, good. Does that mean that he spoke with my specialist?" Nurse Pain (who is super rude--when I went in for my first appointment I politely asked how long the wait might be and she curtly replied: "It will be a while". I gently said, "What is a while? And she said, "It will be a while." Note: Patients have the right to ask how long a wait will be and to be seen in a timely manner (these 'rules' are even posted at my PCP's office!))
Back on track here: The nurse replied in response, "Was he supposed to contact your specialist?" I said, "Yes." She said, "Well it is not here." I tried to ask how he made the decision about the medication, dosing, etc. I explained that I was very frustrated that Dr. Pain had not contacted Dr. ANS. She said, "Well, I get frustrated too." Grrrrrr....I asked if there was a number that Dr. ANS could please call Dr. Pain at before day's end. She said, "Oh, no he's gone for the day." Remember: Dr. Pain is leaving for vacation Monday and did not call Dr. ANS! I ask also if we will be able to get this medication approved by MA and she grumps that she doesn't know and we won't know if we don't try will we? Because Dr. Pain uses this medication often (Lyrica is the new 'hot' pain med) and deals with MA frequently, I figured she should have an answer to this question.
Please note that most medical mistakes in this country are due to a break down in communication. Dr. Pain made his own decision without calling Dr. ANS and Dr. Pain's nurses were not 'in the loop' as to what had transpired. When I emailed Dr. ANS about the Lyrica, he said that would be okay to try, but he did not agree with Dr. Pain's dosing choice. Of course I trust Dr. ANS and will follow his dosing schedule--but it gets a bit tricky trying to walk the tightrope between the two doctors, especially Dr. Pain who wants things his way!
Today: I call Dr. Pain's office and leave a message for the nurse. I cancel my appointment for next week (since I will not have started the new medication) and ask how long after I start the medication I should wait to schedule an appointment with Dr. Pain. I again repeat that he needs to call Dr. ANS before I come in for another visit (I really hope this will prevent some of his hostility!)
Nurse Pain tells me that she has called my MA Nurse Case Manager (Toni) and will fax her the dictation as soon as she has it available. I ask when that might be (because it should have been done when he prescribed this drug!). She says it will be at least a few days. I tried to pin her down and see if basically it would not be done until AFTER Dr. Pain returns from his trip. This means at least one week until he does the dictation, a couple of days for the transcription, time for Toni to type up a request for the MA Medical Director, and then however many days it will take to get an approval or denial (If denied...well, we don't even want to go there. Please pray on this one!). She curtly says maybe Dr. Pain dictated before he left for his trip but she just hasn't received the transcription yet. But, she did not know.
The point of this story (yes, there really is one) is that patients spend so much time waiting.
What I felt at the end of the day was deflated and frustrated because I felt that MY pain didn't matter. That waiting a few more weeks for a medication doesn't really matter. That my life and quality of life aren't that important.
So many times we, as patients, hear: "Come back in six months and we'll see if you're any better. Then, maybe we'll do some testing." or "Try this and come back in three months." There is no sense of urgency. No sense that the passing of time and the waiting make the patient feel that their pain, their suffering matter. This is literally how I spent the first 6 years of my illness until I met Dr. ANS.
I really feel that Dr. Pain should have taken care of the dictation BEFORE he left for his trip. He should have called Dr. ANS. I realize he is busy, but I don't believe you go on vacation and leave a patient hanging. He prescribed the drug, but I can't GET the drug because he didn't do his job.
I am in the midst of watching (in small parts) a series that was on PBS last fall called Remaking American Medicine. It is FANTASTIC. First, it sheds light on what is so very wrong with our health care system, yet it gives us hope that we can change it. I do believe that we have the best doctors in the world and the best tools in the world in America. But we do not have access to them. And doctors and patients are in crisis. I fear the system will fail us completely before it changes for the better. The episode on Johns Hopkins is especially moving--and I may have just found my new passion in health care!
In the current episode I am watching called 'Do No Harm' one of the interviewees comments that there is no other place or situation in life in which we lose as much control or authority of our own lives as we do when we step into a doctor's office or a hospital. Right on!
Tonight I'm having a great deal of pain. We had the blessing of company for dinner (a neighbor whom I adore) for the first time in ages and pain 'got me' by the end. And I just keep thinking, how am I going to make it to NY in September without a medication? I also keep feeling like why doesn't my pain matter? Why isn't it worth treating NOW rather than in a few weeks or whenever he gets around to it? If Dr. ANS was able to do it (but he can't because of MA rules) the prescription would have been called in immediately and the dictation done. He would have called MA himself.
Making patients wait...
It makes us feel devalued and as if the fact that we are sick doesn't matter.
Please note that my PCP, Dr. ANS. and Lyme Doctor (Dr. Lyme--how's that?) NEVER devalue me. They never take away my power. They trust me. They consult me. Dr. ANS says I wait out medications too long rather than letting him know. Why do I do this? Because before him, no one ever cared. We would call and they would say, "Keep waiting it out" or we would get NO call back. I am so blessed by these doctors. I do not want to say that ALL doctors are like Dr. Pain, but unfortunately, in my experience MOST are.
It's hard not to wonder where I might be now health-wise had I found Dr. ANS years earlier. Maybe we would have discovered the Lyme long before I got so sick and before it caused so much neurological damage. I don't ask a lot of 'what ifs' and most days I don't ask 'what if'--this is the path that I have been given and I am grateful that I have Dr. ANS now.
Most, if not all, of my friends from DINET are not as fortunate as I am when it comes to medical care. I'm one of the lucky ones. It is so disheartening to know that I have something that they can't get and don't have. Complaining about Dr. Pain seems like making a mountain out of a molehill compared to what I've been through in the past and compared to what my friends go through. Still, I think it is so important use what is happening with Dr. Pain as a microcosm of what is happening on a much, much larger scale day in and day out to patients.
I want my life, my pain, my well-being to matter. I hope more doctors learn to 'get it right' like my PCP, Dr. ANS and Dr. Lyme soon.
Is this too much to ask?
Blessings,
Emily
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