I had three extremely powerful moments in healthcare this week, moments where I was seen a human being and not just a medical puzzle with too many parts. Most of the time while dealing with all this I feel like the Bob Seger song: I feel like a number, another statistic on a sheet.
By the time next week is finished, I’ll have 16 appointments under my belt in a 4 week span: orthopedic rechecks, PT, mammogram, Pap smear, nephrologist, rheumatologist, endocrinologist, primary, lab work, therapist. I’m exhausted and overwhelmed. My credit card is hot from all of the copays. I’m racking up mad rewards points.
That reminds me, I need to pick up my prescriptions. It’s always something.
When you’re a spoonie, you have to employ a few hacks to navigate your medical care. I rely on apps to help me remember meds, schedule appointments, chart symptoms, calm down, make notes with things to ask the docs, and check lab results before appointments. You also get used to giving the abbreviated medical history (hx) and knowing all pertinent terminology related to your conditions. SLE, RA, ESRD, OMGWTFBBQ.
In short, you get used to being an appointment slot, or a problem to be fixed, or a diagnosis (dx.) You start to feel like a massive PITA and even to question yourself. (Am I really this sick? Do I need all of these tests/meds/appointments?)
Tuesday I saw my physical therapist. She’s a wonderful, smart, warm person, and I’m lucky to have her on Team Mama. She’s got a slight Southern accent, and when she found out all my medical crap, brought out “bless your heart.” I mean, how can you not love that?
She’s training a new staff member, and asked if I’d share my co-morbidities, “since you’d never know to look at you.” I ran down the alphabet soup. “Bless your heart.”
This PT took time out to 1) acknowledge my struggle and 2) educate another medical professional. That’s huge in my book.
Yesterday I had to see a bone density endocrinologist. Aw crap, another doc, another copay. Once I was weighed and measured and deposited in an exam room, the endo fellow came to take a history. He wore a long white coat. Thank G-d!
A little aside: I used to work in research on a medical school campus. Running joke was, the longer the white coat, the more experienced (and smarter) the doc.
Anyhoo, Dr. Fellow started to unravel why I was in the exam room, what led to all of my issues, the timeline of diagnoses, etc. This guy truly cared.
He was a little confused at first about what caused my kidney failure. Was it the FSGS or the lupus? It clicked a bit better when he understood my timeline. I had the kidney biopsy first, which got me the FSGS label, and the lupus dx came a year and a half later.
He asked about the Raynauds, which was one of my early symptoms of lupus. I figured he was a smart one, so I decided to share. I told him my initial symptoms and the incorrect dx and treatment I received at that time. I watched him struggle to contain his emotions as he processed all of this. He closed his eyes and shook his head.
He got it. He got it, and maybe because of meeting me he can help spot similar symptoms in another young patient…and prevent her from suffering as I have.
An hour later I was down in outpatient lab, with fresh orders for blood work, along with my monthly labs for antibody testing (for a possible donor match) and the yearly big labs to stay on the transplant list.
“One of those? I hate those tests. Don’t see them but once a year.” The woman in registration was tired and waiting out the end of her shift. Been there, done that.
“Yeah, I hate them too.”
“You going to be a donor?” Her eyes were fixed on the box containing my HLA kit.
“Recipient, hopefully. I’m on the kidney transplant list.” The woman looked up. Her face softened as she scanned me.
She took her time getting me registered, asking about me, how I felt, where I was on the list (halfway up on the list for my blood type, for all of you playing at home.) She said a quick prayer for me and made me promise to come back and report in. “I’m going to be praying for you and worrying about you.”
I got back to my car and lost it. I’m talking snot dripping, eyes swollen, gasping for a ragged breath LOST IT.
Fam, these three people saw me. They saw me as a person, a real, valuable person. For those moments I wasn’t a medical oddity or inconvenience. I had value and worth.
That isn’t always the case.
My first nephrologist came with a team of short coated docs. Five or so of them would pop into my exam room, lob questions at me without looking me in the eyes, then pop out. To them, I was a number, a case on rounds.
My second nephrologist literally told me we’d let my kidneys crash, then I could go get a donor kidney. Like you could get one on Amazon Prime, two day free shipping. No big, just put that O+ kidney in the cart and click “buy.” He started walking out of the room as I furiously questioned him. No diet changes, no meds. Just keep trucking til you crash. To him, I was an inconvenience.
I have a wonderful neph now. He sees me as a human. My rheumatologist sees me. It’s sad that I feel so blessed to be seen as a human, but it’s unfortunately a massive problem in health care. For years, I didn’t have this blessing. My issues were waived off, dismissed, even incorrectly charted. (I saw a referral letter written by neph #2, stating I did not complain of joint pain or fatigue at time of exam, after we had discussed those very things.)
To anyone else dealing with poor medical treatment, it’s not your fault. Your illness should not be an inconvenience to your medical team. You are a valuable human. You’re not just a number. There are wonderful doctors and nurses and technicians out there. Keep advocating for yourself. Who knows who you will end up educating?
Keep it renal,