Every now and then, it’s refreshing to see a physician who doesn’t see terminally ill patients (in various stages of organ failure) every day. Normally when I walk into the Transplant Clinic, with my newest sequela – or harbinger of doom as I like to think of them, I’m met with blank stares or utter nonchalance. So my urine is the color of dark, brewed tea or watered down coca cola – yep, everyone with liver failure has that. And the whites of my eyes are the color of Dijon mustard – yep, everyone with liver failure has that. Whenever I voice concern about my ever deepening jaundice, I’m told there are patients with eyes that are neon or school bus yellow. Talk about an exciting stage I’ve yet to discover!
I’ve stopped complaining about my ever-expanding belly because I’ve seen rail thin men in the waiting room who look like they are 12 months pregnant with twins. Everything hinges on my MELD which refuses to climb. I guess it’s as tired as I am every day. So we both schlep through life, going through the motions, trying to get to the end of the day where a warm bed awaits. It’s hard for me to imagine I was once an exercise junkie.
But I digress. Today’s visit with my primary care physician was to do blood work so they can continue to prescribe Fosamax. At the ripe old age of 52, I have osteoporosis of the spine and osteopenia in my hips. Primary Sclerosing Cholangitis is like the 12 days of Christmas in Dante’s Inferno. Before my bibliophiles freak out, I know there are only 9 circles of Hell in Dante’s story, so we’ll have to front load 3 day’s worth of gifts into the first circle. Go with me on that one.
When the physician’s assistant came in the exam room, she REALLY looked at me. She shook my hand and never broke eye contact as she asked questions about my health history. I see this person once a year, so the changes she sees are big. She stopped mid-sentence and asked me “Do people ever tell you that you look jaundiced?” and I told her about my “person” at work with who literally said “Oh my G_d Brenda! Are you wearing yellow make-up?” When I say my “person” I have this fabulous colleague with a keen eye who looks at my face every day and will tell me when I look particularly yellow.
The P.A. went on to examine my stomach and as she was pressing on my liver AND spleen (which are both enlarged and poking out from under my ribs) she said she wished they had a medical student there so they could feel my stomach. I had a similar experience the last time I went to the dermatologist. I see a P.A. there too and she teaches classes at Emory. She was impressed (but not in a dazzling Hollywood way) by the color of my skin and eyes. She said she wished she could take me to class to show her students what text book jaundice looks like. I told her to take a picture and share it with them – and she did.
So I’ve got that going for me. I may be the most marginally interesting patient in the Transplant Clinic, but I’m an albino peacock strolling through the Rain Forest to all the Physician Assistants I encounter. So if nothing else, this disease has produced teaching moments for people I never dreamed I’d cross paths with 25 years ago when I was first diagnosed. #silverlinings, #PSCblows, #NeedANewLIver, #Sistergoldeneyes
— All Hail The Queen