A lot’s been going on. I had minor surgery (but with general anesthesia, which I LOATHE), and successfully refused prophylactic prescriptions for steroids and antibiotics (nothing feels quite as great as knowing what your alternatives are, standing up for them, and being right). But my chronic sinus infection decided this would be a great time to mount a surge – and since ragweed is blooming around DC, I was fairly miserable for a week. But I’m largely back to normal.
Then Monday my mail delivered a real kick in the gut: my allergist, truthfully the doctor who knows my body the best, and who was the one who figured out about the eosinophilia, and later the HyperEosinophilic Syndrome, is leaving MFA.
I had only slightly kidded over the years when I said if she ever left, or they moved, she’d need to get an in-law room over the garage, because I was going, too!
When you’ve spent YEARS trying to get real problems to be seen and diagnosed and treated by doctors, unsuccessfully, and finally one doctor gets it – GETS YOU! – knows there’s something else wrong and fights for you for years … well, you don’t just appreciate them. You aren’t just grateful.
Dr. VL truly saved my life.
Holding that formal letter from the allergy department chairman stating that she’d be leaving the practice at the end of November made my stomach do those slightly sick flips. My first impulse was to call and ask where she was going (I knew she’d be staying in the area) and to begin to switch to whatever practice she’s joining.
But then I stopped and thought about it.
I’m a DC Medicare/Medicaid patient – that means MFA loses money on me every time one of my team sees me. In all likelihood, she’s going to a suburban practice – possibly a private practice.
And she’s taught me so much over the years. She’s never told me NOT to take steroids, but she’s watched me struggle for months to overcome the tremendous costs just a few doses of them impose on me. And she taught me to think about alternatives.
The reason the surgeon wanted me to take the steroids was to reduce the swelling in my mouth/throat. My alternative that I have on hand is prescription strength ibuprofen, which I could safely take for three or four days, and which would reduce swelling and minor pain. I knew if I began having any difficulties swallowing or breathing to immediately call EMS and go to the ER. (I ended up taking three of the ibuprofen, two in the first 24 hours, one the second night.)
I’m allergic to so many antibiotics that I’ve also learned to treat my sinus infections (only at their worst) with a compound topical formulation of an antibiotic ointment blended with a sterile saline spray. Same sort of thing with the antibiotics – the surgeon wanted to prescribe them prophylactically, and yet, as I explained, I was in greater danger from an allergic reaction to whatever antibiotic was prescribed (uncontrolled vomiting after mouth/throat surgery isn’t a good thing) than from a possible opportunistic infection at the surgical site in my mouth.
As I thought about what Dr. VL primarily does for me now, I realized that I’m no longer a challenging patient. She monitors, prescribes and administers the biologics (Xolair and Fasenra), prescribes my other llergy and asthma meds, and tracks my other allergies (largely now short-term like ragweed). We’ve developed a plan for dealing with my antibiotic allergies – if I am seriously ill, like with pneumonia, I will be admitted to the hospital and they will administer the antibiotics in small amounts while treating the reactions.
Dr. VL’s the one who pulled together my medical team when it was most critical in 2012-2016. But frankly, for the most part, while all my problems are not cured – they aren’t necessarily curable – many of them are stable, or have improved. My HES is in remission (as long as the Fasenra keeps working). So now while there are MFA doctors who know me pretty well, at least as far as their specialization is concerned, I’m the one who manages my care. Who asks for specific tests, or brings up concerns at an appointment.
As I thought about that, I realized there was another way to look at her leaving – as a marker of my graduation.
If I am in serious trouble again (well, hopefully before it would get to anything close to “serious”), I know how to get to doctors who will listen. If all else fails, I’ll make sure always to have her phone number.
But maybe the best gift I can give her is to wish her joy in her new adventure and tell her I am going to be okay – because of her care.
