Friday, August 7, 2015

Here's the dealio

It's Wednesday and I'm standing at the front desk at the doctor's office checking in for my first appointment with Dr. G. "Name?" the receptionist asks. "Date of birth?" I overhear the man next to me stating his date of birth to another receptionist. He's three years older. Gosh, are we really that close in age? He looks so much older than I feel. He looks like The receptionist pulls my info up on the computer and scans the screen to see which doctor I'm visiting. "Hmm." She furrows her brow. "That's strange. Dr. G. isn't accepting new patients. He hasn't accepted a new patient in a long time..."

"Some friends got me in to see him," I tell her. She looks up, her eyes bright. "That's special," she smiles. I smile back. This is special. The internet told me Dr. G. is "a medical treasure." I read it online in an article about the Laureate award he received for outstanding medical services. He's the associate dean of OHSU and has a history of solving mysterious cases. My friend wondered if he's the "House" of Portland. I think he might be.

A few minutes later my mom and I are sitting in the doctor's office. I'm trying to cram my entire health history onto a form attached to a banana yellow clip board. I'm mid-scribble when the doctor walks in. He surveys me and my mom and, for a moment, looks surprised. I think he must be used to seeing familiar faces and ours aren't familiar. His eyes dart to my mom and then back to me. Is he trying to figure out which one of us is the patient? I'm holding a stack of lab work a few inches thick, but my mom is 26 years my senior, so surely she's the sick one? He settles on me. The banana yellow clip board must have given me away.

A few minutes later he's rolled his seat in front of us, closer than any of the 18 doctors I've seen on this journey, and he's joking, making us feel at ease. Then he asks for my health history. He wants just the facts without any interpretation. I take a deep breath. I know this part of the appointment is going to take at least an hour.

The doctor looks at me intently as he waits for me to gather my thoughts. I can feel the familiar tears threatening to spill over so I pause and swallow. This doctor has only known me for a few minutes, but I feel like my health is important to him. Maybe he'll do whatever it takes to help me. I've been praying for this. Favor. With a really good doctor.

I begin at the beginning, starting with the years I over-worked myself and tried to achieve too much in too little time. I tell him about the onset of my illness five years ago, the doctors I saw, the symptoms that developed, and the medications I tried. I tell him how I slowly pulled out of the 4-year pit of illness, so that by August 2014, I felt at about 75% of normal. I tell him my improved health didn't last through the end of fall before all hell broke loose. And he listens intently, interrupting me to make sure he has dates straight or to ask clarifying questions about my symptoms and medical protocols.

I bring us up to September of 2014 when we have to stop. We've run out of time. "I need to see you again next week," he says. "This is complex and will take some time to figure out. But I have hope for you." He lists a number of things he'd observed about me that gave him hope. I feel a flicker of hope ignite in me as he talks.

"Tell the front desk that I want to see you next Wednesday. If they tell you I'm booked then tell them to overbook me. This is important."

"Oh thank you," I say. "That's so kind of you."

"It's not kind," he replies. "This is important. I have kids, they're older than you, but I have kids and I know this is important."  He looks at my mom. She doesn't let on, but I know this journey has been so hard for her, too.

Then he pulls a pen out of his pocket and scribbles something on a paper towel. "Here is my cell number," he says as he hands the towel to me. "Call me if you need anything between now and next week."

I hand him my stack of lab work and a detailed health history I give to all my doctors. He promises to review everything before our next appointment.

After Dr. G. has left the room I want to cry with relief. His is the last of three appointments with new doctors this week. Last week, I wasn't sure if I would be able to make it through this full week. These 2-hour long appointments demand so much of me. But it's Wednesday, and I've made it through all three appointments.

I've been relentless in my attempts to discover new doctors, get referrals, schedule appointments, take tests, and implement protocols this summer, but it often feels like I'm trying to pry open doors that have been double-bolted shut. Doctors forget to send referrals, nurses forget to order medicine, appointments are canceled last minute, health insurance representatives misinform me, and there is frequent miscommunication between doctors and their staff. I've grown to expect that things will go wrong a lot. So, when my dad got the flu last week, I wondered if I would get it just in time for my important week of appointments. I asked friends to pray that I would stay flu-free.

Thankfully, I didn't catch the flu. It's weird how impervious I've been to the bugs my friends and family contract these days. I suspect anytime a bug comes knocking on my door, all the other bugs in my body poke their heads out of the window and shout "THERE'S NO ROOM IN THE INN, PAL!"

Just being able to make it through this week's appointments feels like a tremendous gift. But more than that is the gift of favor with a renowned doctor, and the gift of more information to help us determine next diagnostic and treatment steps. Slowly, we're uncovering more pieces. This is the first week on this journey that I haven't felt like I've been prying open locked doors. Instead, the doors have flown open and I've been whisked inside. It's the most glorious feeling.

I'm still gearing up for the long haul, though, as we try to diagnose and treat this. All three of the doctors I saw this week commented on the complexity of my case. Dr. N., the doctor I'd been waiting five months to see, thinks it will take several years for me to return to full health. In the meantime, we'll need to do more extensive testing to figure out 1) what has my immune system up in arms (is it mold? lyme? something autoimmune?) and 2) what it is about my genetic make up that makes me so susceptible to chronic illness? We've been narrowing the field of possible answers to #1 the last 8 months, and will begin to explore #2.

We have to be very strategic about the treatments with which we experiment. Dr. N. articulated what a number of my other doctors have noted: my body is so sensitive and fragile right now that aggressive treatments could make me much, much sicker. The catch-22 is that aggressive treatments can awaken the immune system enough that it starts producing the antibodies necessary for definitive test results.  Often, the sicker someone is with a systemic infection, the more likely they are to have equivocal test results because their body isn't producing the antibodies that show up on these tests. The goal, then, is to strengthen my body enough that we can eventually try some aggressive treatments and then re-run tests that were originally equivocal.

As the week draws to a close, I'm encouraged because, as these puzzle pieces continue to emerge, I'm able to form a more informed plan. These appointments have given my research clearer direction, and I have an idea of what sorts of treatment I'll try in the next month or so as we continue to search for a diagnosis. I have more referrals to other doctors, and more tests being run. It feels so good to finally see so much movement. And as we move, I'm asking God to surprise us all with a quick diagnosis and even quicker healing.

I've decided to go through with the MRI on Monday. The doctors I talked to this week think it's a good idea. If you think of it, please pray that my symptoms will be quiet enough that I can be still for 45 minutes. Please also pray that the MRI doesn't make my symptoms worse. My doctors don't think it will, but they're quick to qualify their theory: it could make them worse; we can't be sure that it won't. So I'm praying, praying, praying.

My friends, thank you for your prayers these last weeks, months and years. I'm feeling swaddled by the grace of your prayers, encouragement, and friendship.

Cheering for ya, every last one of ya (and HAPPY WEEKEND!).


© by scj

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