Yesterday I had an appointment with Dr. C, my Primary Care Physician. This appointment took the place of an appointment that was scheduled for later in the month as a follow-up for my Chronic Illnesses and was meant to touch base over notes from my Rheumatologist, update him on where things stood there, and to start the process of getting my immunizations updated in preparation of starting Imuran next month.
This appointment turned out not to be a normal appointment. Not that my appointments are anywhere close to normal though. When Cindy, the nurse took my vitals at the beginning of my appointment she explained that Dr. C had a student doctor following him and asked if I minded her coming into my appointment with him. I said I didn’t mind at all. Truth is, it did make me nervous, but I also realized the value that is in the exposure student doctors get in their rotations during their rotations.
Cindy left briefly to go get the INR machine and she came back and we checked my INR, 2.5, great, low. No changes to my diet, no changes in my meds other than this was the second week of a lower Plaquenil dose. My target range is 3.0-3.5. I had gone 3 weeks teetering right around perfect, then all of a sudden bam, low. Some days I get so frustrated with APS, and Warfarin and this whole balancing act. My only theory is that I’m in a mild Lupus flare and perhaps that is impacting my INR.
After Cindy left, Claire the student doctor came in and talked to me while Dr. C was finishing up with another patient. She asked about Antiphospholipid Syndrome, Lupus, and how they presented in my life. I gave her the whole story. She excitedly exclaimed “WOW, that’s exactly how they teach it, and how it is in the textbook.” I was impressed. Finally! Finally doctors are being taught the truth about this damn disease! Not to sound ageist or bias but one of the best decision I made about my health care was the decision to go with a new (young) doctor when I had to replace my Primary Care Physician back in January. Now to make an overly technical analogy about it, it’s like upgrading your computer, you don’t usually replace your old system with an old system, you usually buy a new computer when you need a new one, so when you need a new doctor why not find a new one with the most up to date information who just recently came out of school. I chose to go with the new vs experience because of the updated information being taught on APS in recent years. Of course experience sometimes wins out, but It is amazing the experience they gain from med school, internships, and residency. Talking to her was interesting, she had just done a small rotation at Duke Pediatric Rheumatology and was familiar with Lupus and APS from being there. She asked me why I thought my INR had dipped and I told her my theory on my Lupus flare. She took notes and did her own exam and then went out to discuss with Dr. C.
A little while later Dr. C came in and did my actual appointment. My appointments with him are always longer than average. This one turned out to be closer to 2.5 hours long by the time it was all said and done. Dr. C has a good sense of humor, and that has helped a good deal. I can’t handle overly serious doctors. They intimidate the crap out of me. As he came into the appointment he settled in on his stool and leaned against the wall, in that manner of ‘yep I’m going to be here awhile.’ Then he made some comment about my INR, and I said “Uhh the wind changed? Uhm I looked at something green? The moon is full?” He laughed and I said “Seriously, I think my allergies have my immune system pissed off and is causing a small flare” He agreed that this was likely the culprit as we have seen this happen in the past. This is by far not the worst of my flares and we decided the best course of action was to treat my allergies, so he prescribed a nasal spray. Then we talked about the referral put in for the group of therapists I want to work with, so I should get a call from them with an appointment in about 10 days. It has been a stressful time in my life, it’s not just the diagnosis, life really has been one stressful thing after another for the last few years. It’s been 3 years of things I really need to talk to a therapist about and to help sort through. It’s time. But a good part of it is due to the anxiety and the adjustment of life with chronic illness and there is no shame in that. I will come out of this a stronger person.
We discussed my Rheumatology appointment, and I gave him copies of my lab results from the tests they ran. I told him that Dr. L was a little miffed as to why my Lupus test results were coming back negative, that I have 7 of the 11 diagnostic criteria for a diagnosis for SLE and that is why Dr. L had diagnosed me with SLE. I also made mention that he had reached out to the folks at Duke to see if there were other ways to test me, as he felt there as something genetic going on within my family causing us to test negative, as it is a trend that seems to happen with us. We discussed more about Lupus and it’s impact in my life and how it and APS coexist.
We talked about Imuran and that Dr. L plans on starting me on that in May. It may require me to bump up my Warfarin dose so we talked about the need to schedule an INR check 3 days after I begin Imuran, and then a week after. I have my INR checked weekly so that will not be too big of an issue. I’m just concerned about the increased Warfarin dose, my standard daily dose is 15 mg a day when my INR is behaving, to keep my INR around 3.
Partway through my appointment Doug asked Claire how she was enjoying her time at the doctor’s office and she said she was enjoying it and learning a lot and thanked me for letting me be involved in my appointment. Her plans are not to be a PCP, she is headed to be an Ear Nose and Throat specialist, but said now anytime in her classes they discuss APS or Lupus she will always think of me, and remember our discussions. Dr. C then proudly (at least there seemed to be pride in his voice) exclaimed ‘She knows her stuff and she is a good patient to talk to, she is open and honest, and she talks to other patients in her support groups and reads a lot of blogs about her conditions but don’t believe everything she says she’s a liar.’ This was said with a complete mocking sarcastic tone, and I followed that in suit with a heart filled mock handover my heart ‘oh that hurt Dr. C!’ We laughed and he goes ‘And I blame Doug for my sarcasm’ to which we all broke out in laughter. Seriously any other doctor of mine had called me a liar even jokingly I would’ve been highly offended, none of us have that relationship. Dr. C though, he makes me feel comfortable, he makes me feel safe to be myself. I’m not just a Lupus patient, or that patient with APS, or ‘OH god it’s that patient with the chronic illnesses again’ Or at least if I am he never lets on that he thinks that if he does. Patient-Doctor relationships are important and it is important to feel at ease with your doctors. I know I tend to see my PCP more often than I do my specialists and a big part of that is he makes me feel more at ease. My specialists are all tall, older men, who are very serious and intimidating. It took me several appointments to get my Hematologist to smile, I’m still getting to know my Rheumatologist, and my Opthalmologist only needs to see me if I’m having eye problems. But for the most part they all are very serious, intimidating, and see me as a condition not as a person.
Even to Claire, I will forever be remembered as that patient with Lupus and APS. But more importantly, and exciting, I’ll be the patient that helped make these conditions real to her. I’m not sure how often she will see APS in her specialty, I suspect she’ll see Lupus more often in the context of some of the secondary conditions that can present with it, with the inner ear. Though APS can affect the inner ear as well. Especially for those who have micro-clotting issues.
I received two vaccinations while at the appointment yesterday, the pneumonia vaccination and the meningitis vaccination. When I asked what sort of side effects I could expect from these vaccines Dr. C said with me, he had no idea. He told me to schedule my next INR check with the nurse practitioner and to schedule a follow-up appointment with him in 1-2 months.
This wrapped up his part of the appointment, and we said our goodbyes and then the nurse came in and gave me the shots. I went to the checkout desk and scheduled my next two appointments.
My appointment next week is for monday afternoon, and I scheduled my next appointment with Dr. C for 3 days after I should start Imuran. That is the suggested time to have your INR checked for concomitant use of Imuran and Warfarin. It is known to require an adjustment/increase in warfarin dosage.
I left the office pretty thrilled I had the chance to talk to Claire, the student doctor. She is going to make a good doctor, I’m glad I had a chance to cross paths with her.