Wednesday, July 13, 2011

Waiting

Okay, so here's what happened.

Jeff got cellulitis on May 31. He had to go stay at the hospital for it on June 3.

While he was in the hospital, they drew his blood every day. By so doing, they discovered something wrong with his liver. On June 8, when his cellulitis was under control, he came home from the hospital.

On June 14, he met with an internist who monitored his cellulitis and became his primary care physician (PCP).

On June 15, he met with a gastroenterologist (GI) who ordered a lot more bloodwork to run various liver tests.

On June 21, Jeff went to the lab to do the liver bloodwork which had been ordered by the GI.

On June 28, Jeff went to his new PCP for his second cellulitis follow-up. While he was there, his PCP asked how it was going with his liver. Jeff said he'd been to the lab but heard no results. His PCP pulled up his chart, looked at the test results, told Jeff he needed to get back in to see the GI right away, and said if she, the GI, couldn't fit Jeff in, he, the PCP, would call and make sure she fit Jeff in.

Alarmed, Jeff looked at his chart to see why the PCP had reacted so strongly. He thought he read that he had an 80-90% chance of something called primary biliary cirrhosis (PBC). He went home, researched the condition, and told me all about it when I returned that evening from my weekend trip. He said it very seriously. Made me sit down and everything.

On June 30, Jeff was able to schedule an appointment with the GI for July 12. He called his PCP to ask if that was soon enough, and the PCP said that would be fine.

Then, we had to wait. 12 days. Seemed like 12 years.

I've waited for stuff before. Waited for my babies to be born, waited for houses to live in, waited for Dad to be found.

I've waited.

But this was a new kind of waiting. I've never waited to find out my husband's life expectancy before.

I shut down a bit. Put my emotions on hold. Felt a little cranky at God. Had zero expectation of getting any answers at the July 12 appointment. Expected the GI to say, "Come back in six months." Hoped maybe Jeff had misread the chart.

The morning of the appointment found me opening my daily Bible reading to Isaiah 25. It begins in verse 1, "O Lord, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure."

I don't know much about God, but I know enough to know that Jeff's liver weirdness is part of His plan, formed of old, faithful and sure.

Verse 4 says, "For you have been a stronghold to the poor, a stronghold to the needy in his distress, a shelter from the storm and a shade from the heat..."

(By the way, that shade from the heat part made me think of you, Kimberley. God is your shade this summer.)

That stronghold to the needy in his distress part made me thing of Jeff and me. God is our stronghold.

Verse 6 promises a great feast. Cool.

Verse 8 says, "He will swallow up death forever; and the Lord God will wipe away tears from all faces."

Yes. That part made me think of Dad. All the tears are wiped forever from his face. Beautiful.

But it was verse 9 that got me. "It will be said on that day, 'Behold, this is our God; we have waited for him, that he might save us. This is the Lord; we have waited for him; let us be glad and rejoice in his salvation.'"

We have waited for Him. That He might save us.

We wait for Him.

Psalm 62 came to mind. "For God alone, O my soul, wait in silence, for my hope is from Him..."

Using my finger as a bookmark in Isaiah, I carried my Bible to Jeff, waking him four minutes before the alarm to share my good news.

"Jeff. Listen to this." I read him the verses in Isaiah.

He looked at me blearily. I think he knew it was his wife who was talking, but I'm not sure he understood English yet. "What time is it?" he muttered incoherently, frowning. Clearly, he would have preferred the four extra minutes of sleep.

As he stumbled around the room, getting ready for the doctor appointment, I followed him, monologuing. "Isn't that cool? We aren't waiting for the appointment. God's timing is perfect. We are waiting for God. We aren't waiting for a diagnosis. If we don't have a diagnosis yet, there's a reason we don't have it. God wants us to wait. We wait for the Lord. Isn't that cool? We wait for the Lord!"

Jeff, upon waking somewhere between the bathroom sink and his closet, agreed with me that it was cool.

A Jeremy Camp song began to loop in my mind. "I wait for the Lord... my soul waits..." Usually, a number of songs loop through my head on a given day. But not this time. That grungy guitar and gravelly vocal stayed with me all the live long day.

Our appointment was scheduled for 8:20a. We arrived at 8:15a to find the doctor's office locked. I knocked on the door. No answer.

We had to wait.

After a minute, I realized what we were waiting for. "Jeff!" I said. "We're not waiting for the door to open. We wait for the Lord. There's a reason we're supposed to sit out here in the hall."

Jeff looked at me, his expression inscrutable.

We read the signs on the door outside the office. Our GI's officemate is a neurosurgeon, with the letters FACS after his name.

"What does FACS stand for?" Jeff asked.

We guessed. Facial and cranial surgery? Hmmm...

Around 8:20a or so, the receptionist appeared, rushed, apologetic. "I'm so sorry. I have to drive from Salem every day. Traffic was bad this morning." She unlocked the door, ushered us into the waiting room, and invited us to get comfortable while she bustled around, turning on lights, booting her computer, starting her day.

We had to wait.

I turned to Jeff. "We're not waiting for your doctor appointment to start. We wait for the Lord."

"Yep," he replied distractedly, realizing I was beginning a mantra he would benefit from hearing repeated ad nauseam.

Contentedly, I let my eyes wander about the room. Lots of stuff about brain surgery, onaccounta our GI just moved into that office. One entire wall was filled with plaques. "Oh, hey!" I said, "Now we can figure out what FACS stands for."

Jeff and I stood, walked to the wall, and read every single plaque, all of which belonged to the neurosurgeon. Undergrad in engineering at Cooper something-or-other in New York, Master of Science from Columbia, MD from New York University, MD residency in Rochester, neurosurgery schooling someplace in New Jersey, neurosurgery residency at the University of Utah, continuing education in neurosurgery from Nova. Nothing about FACS. Huh.

But finally, we found it, Sherlock Holmes-style. "Hey, look. This one says it's from the American College of Surgeons. Look. It says he's a Fellow. Aha! Fellow of the American College of Surgeons. FACS."

Whew. That was close. I almost had Wikipedia withdrawals.

My eyes fell on a different kind of plaque. It was a copy of a young child's school report, framed on the wall. It read, in very cute little kid handwriting:

My Super Hero
by Josh 
My idea of a super hero is Dr. [Neurosurgeon] of [Hospital]. He is the brain surgeon that saved my dad's life. He was on duty February 17, 1996. He had to take a large blood clot out of his brain. My grandma and all my aunts and uncles prayed to God with Pastor [Clergy] that he would spare my dad's life. God heard our prayers and now my dad is home healing. I thank Dr. [Neurosurgeon] for saving my dad's life. He is my super hero.  
Josh

Across the top of the page, Josh's teacher had penned, "Great, Josh. Neat story. B. I'm glad your dad was saved, too. :)"

Jeff and I stood there all teary, lost for words. Finally, Jeff said, "He got a B?!"

We went back to our seats, chuckling, mocking Josh's teacher. "Yeah. Sorry I can't give you an A on your paper, but I'm glad your dad's alive. Smiley face."

"B!"

"B plus a smiley face!"

Laughter is good medicine. So are tears. Nothing beats the combination of the two. We were completed relaxed when the nurse finally opened the door and called Jeff's name.

Back we went to the exam room, where the nurse took Jeff's vitals and asked why we had come in. We explained the bit about the PCP's reaction to the lab report.

"Huh," she said. "Interesting. Well, that's all for me, your doctor will be here in a few moments."

We had to wait.

After several minutes, Jeff chuckled, "We're the first patient of the day, and we still have to wait."

"We don't wait for the doctor," I intoned, "we wait for the Lord."

Jeff folded his massive, muscly arms across his barrel chest, furrowed his brow ever so slightly, and sighed.

As I finished speaking, my eyes fell on a liver poster tucked behind a brochure stand. I picked it up and read through it. You can read it, too, because I found a webpage with the exact same text and graphics. (Just tell the site you are a health care professional.) The site is about Hepatitis C, but it gives a good description of liver disease in general.

I learned that hepatitis is a general term that means liver inflammation, that fibrosis is the replacement of any healthy tissue with scar tissue, and that cirrhosis is basically advanced fibrosis in the liver. More scarring equals less liver function. Total scarring equals liver failure.

Armed with a new vocabulary, I replaced the chart as the doctor walked in. "What's up?" she asked.

Jeff explained again about the PCP's reaction to the test result.

The GI turned the computer around so we could search the chart with her and mumbled, "Hmm... I wonder which lab he was looking at..."

We searched together, coming up empty. What had the PCP seen? Jeff revealed that he had looked at the chart himself and seen something about primary biliary cirrhosis.

The GI widened her search, explaining that we were now exploring parts of Jeff's chart she herself had never seen. "They give me the lab results they think I need to see," she explained, "so if they didn't give the result to me, there's no way I would have seen it because I don't have time to read all the way through every patient's chart."

Makes sense.

And then she found it. "Oh," she said, turning toward me (not Jeff) with sympathetic eyes. "I'm going to need to get a liver biopsy."

We nodded, thankful she hadn't said, "Come back in six months."

She asked Jeff if this was the lab result he'd seen.

Yep.

She wondered why she hadn't seen it and said she'd ask her front desk people how it had been missed. But before she did that, she explained to us what the result showed. Jeff's bloodwork revealed an autoimmune marker of 79.1, meaning Jeff's blood contains antimitochondrial antibodies (AMA) that indicate PBC.

It turned out Jeff had misread one thing in the chart. He got the percentages wrong. He thought the result said he had an 80-90% chance of PBC. It actually said he had a 96% chance.

The GI left the room to go yell at the help. Jeff and I looked at each other, silently processing the information. We weren't shocked, we weren't reeling. We had gotten that out of our systems two weeks previously.

We just stared into each other's eyes.

"So..."

*sigh*

"Well..."

*sigh*

Jeff found his voice first. "You know God is sovereign over this. He is in control."

My reply was so immediate and automatic that I surprised myself.

"Yabbut..."

Ah. Back to my theme for the year. Contentment. Even with this, Abba?

Yes, child.

The GI came back in and explained that the lab had filed the report in a totally different section of the chart, which prevented her from being able to find it. She said she was very thankful our PCP had found the lab result and she was disappointed in the folk who'd failed to bring it to her attention.

We discussed the logistics of getting the biopsy, and she suggested we use a different lab. Righto. She gave us a couple of options and told us to let her know which facility we would choose so she could order the biopsy for us.

She explained the biopsy could not predict when Jeff's liver would fail, but it would show his current stage of liver deterioration. I knew what she was talking about because of the handy dandy chart I'd read while we waited. Then she left, telling us she'd send the nurse in to handle the final details.

We had to wait.

While we waited, we discussed our options for biopsy facility.

The nurse arrived with additional information regarding our options and told us that as soon as the biopsy was scheduled, we should also schedule the biopsy follow-up appointment with the GI to go over the results. She said the follow-up should be four weeks after the procedure.

"Why four weeks?" I asked immediately.

The nurse floundered around for an explanation. "Well," she said, "it takes about a week and a half for the biopsy to give its final results, and then there's the processing time and all that. But if you need to know the results sooner, I'm sure we can get you in."

"We're okay with the timeline," I replied, "I just wanted to know why it is what it is."

The nurse nodded in sympathetic understanding and released us to go check out. The receptionist was about to take our payment, but she paused and said, "Actually, I need to get one more piece of information from the doctor. Go ahead and have a seat. This'll just take a minute."

We went back to the waiting room.

We had to wait.

A neurosurgery patient sat across from us and told us all about how amazing the neurosurgeon was. He was there for a neck surgery follow-up appointment. He'd gone ten years with numbness in his arms and a PCP who kept blowing him off. Then he'd had a heart attack, and during his double bypass surgery, his cardiologist had discovered bone spurs in his neck. The neurologist had fixed him up good as new, and now he had full mobility. Felt like he was in someone else's body. Felt like he could do cartwheels down the hall.

Another patient, finishing his business with the receptionist and joining us in the seating area, broke into the conversation. "You talkin' 'bout the neurosurgeon? I'm done with him. He s'pposedly fixed three of my vertebrae, but I'm in just as much pain as ever. This is my last visit up here. I ain't comin' back here no more."

The two men continued to exchange pros and cons about the neurosurgeon, one telling his story of victory -- full of hope, healing, happiness; the other telling his story of defeat and prescription drug addiction -- full of despair, anger, pain.

I felt I was actually witnessing Romans 8:6. "For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace."

One soul imprisoned by anger and bitterness, the other walking in freedom and joy.

Our receptionist came out to the waiting room with paperwork for us to sign, explaining the GI had given us a 50% discount on our office visit because of the mix-up with the lab results. We thanked her, signed our paperwork, wished the best of luck to the neurosurgery patients, and left.

When we got home, we both went online and did copious amounts of crack internet research.

Here's the bad news:

There is no cure for PBC. It leads to liver failure 100% of the time. After liver failure, a liver transplant is the only viable option. This particular liver disorder is not caused by lifestyle (smoking, alcohol consumption, obesity, etc). It just happens, and they don't know why. The primary symptoms are fatigue, itchy skin, and jaundice. Some patients have all, some just one, some none. Jeff is certainly fatigued, but the GI isn't yet ready to tie Jeff's fatigue definitively to PBC. She says it's highly likely his fatigue is just part of his recovery from cellulitis.

Here's the good news:

PBC usually progresses very slowly. Only 25% of patients experience liver failure within the first ten years of diagnosis. The other 75% can go many more years with little to no trouble. In fact, in a lot of cases, patients die of something else entirely unrelated before PBC shuts their liver down. There is a medication that can slow the process. Maintaining a healthy weight can also help because it takes pressure off the liver. Our GI says in some cases, PBC does not change a person's life expectancy at all.

So that's hopeful. :)

Our next step is to find out when our biopsy will happen. I have a call in to the GI with our decision regarding facility, and we are, yep, you guessed it: Waiting to hear back.

Then we wait for the biopsy, which could be some time out.

Then we wait for the biopsy results, which will be yet four weeks more.

Then we wait to see if medication slows the progression of Jeff's liver failure.

Then we wait to see if if we're the 25% or the 75% of patients with PBC.

But you know where I'm going with this. In truth, we do not wait for any of those things. We do not wait for biopsy. We do not wait for results. We do not wait for medication. We do not wait for prognosis.

We wait for the Lord.
For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I shall not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all times, O people; pour out your heart before him; God is a refuge for us. Selah.

~Psalm 62:5-8



(Note: you may need to visit my blog to view this video, which I made all by myself.)

I wait for the Lord
My soul waits
I wait for the Lord

In His Word I place my trust
In His Word I rest
In His Word I place my trust
For I know I must wait

Man shall not live by bread alone
But by every word of God
I will not live by bread alone
But by every word

I wait for You, Lord
I soul waits
I wait for You, Lord

In Your Word I place my trust
In Your Word I rest
In Your Word I place my trust
For I know I must wait