Testing Normal, Feeling Worse: My Medical Journey, part 1

by | May 28, 2018

In the midst of struggling through an unexplained illness, it’s easy to become angry with the health professionals that don’t seem to be finding answers for you. I want to take some time to praise those who are in the medical field (of any capacity) and walk through the medical process of how I got here.

This odd sensation of not being able to take a full breath (or not having satisfying breaths) came and went and I never thought much of it. So when I spent 5 hours on a plane not being able to breathe well, I wasn’t panicked at all.

You would think I’d be panicked because we had just travelled from our mission trip in the Republic of Georgia and had to leave a member of our crew behind during our layover in Germany because she had signs of deep-vein thrombosis. I never made the connection that the reason for my breathing trouble could be just as serious. On this particular flight I was more concerned with the fact that I was uncomfortable and ready for my breathing to turn back to normal.

I came home and tried to run, but barely made it a few blocks without feeling short of breath.

A lot of people have accused my first set of doctors for not being thorough enough, but I came to them with one problem: “I used to train for half marathons. All of the sudden I can’t run a mile.”

That was it.

Pulmonology

My first appointment with my pulmonologist went something like this:

Doctor asks question. I say, “no.”
Doctor asks question. I say, “no.”
Doctor asks question. I say, “no.”

I had no other symptoms to share and very little information to offer. But my respect and appreciation for those working tirelessly in the medical field began. He spoke on my level, he let me ask questions about everything, he made me feel comfortable and never made me feel like I was some crazy girl making up fake symptoms.

Then came the tests. I still laugh at my fear for those tests. Not what they were doing, but how much they would cost. I laugh because it was only the beginning.

Nuclear med VQ scan: normal
Echocardiogram: normal
Pulmonary function test: one abnormality

Something on that test showed I could have Pulmonary Hypertension. He played it off like it was a treatable disease that wasn’t something to worry about, but I of course went home and researched it. And cried.

I can’t get pregnant or take birth control that would not only keep my endometriosis at bay but also prevent me from said dangerous pregnancy? My life expectancy would drop a good 10-20 years?

People assured me that PH was a very curable disease these days and I stopped researching it. There was no point. Whether or not their advice was based on truth or comfort, researching it and living in fear was pointless.

Next up was my exercise test.

Now, I truly do love the people who have been a part of my care team through this whole process, but the worst part about this process has been the scheduling and waiting, scheduling and waiting. What a tough game.

So I waited for the Cardiopulmonary Exercise Test that would supposedly collect a ton of data that would indicate all they needed to know.

Shout out to the respiratory techs and nurses in that place! What fun women who laughed with me and comforted me and brought out my competitive side. They had an office full of Ohio State decorations and I walked in proudly wearing my Michigan sweatshirt. I wanted to ride that bike for so long that they got bored tracking my vitals because they were so used to people lasting only a few minutes.

But this test wasn’t the golden answer I was hoping for and it became the start of my doctor’s constant words to me: “everything was completely normal.” The only abnormal number was my exercise tolerance which was low and had no clear explanation.

I found out later that my doctor was fairly convinced that I had PH up until the definitive diagnostic test. So these normal results were an absolute shock and mystery to both of us. He consulted other doctors and the month of December went like this: “I hit my deductible, so whatever tests you want to do can we get them done before I leave for California on Christmas Eve?”

CT scan: “Just like everything with you, it was completely normal.”

My doctor finally decided to do a right heart catheter to check the pressures in my pulmonary artery. My doctor’s partner did the procedure, but he made sure to be there in case he needed to deliver such a severe diagnosis.

“Everything was normal.”

While I was excited not to have PH, hearing I was normal became exhausting.

The next day my doctor sat with me and let me fire questions at him for probably 45 minutes. We talked about all the data that had been collected and what the next steps would be, but I was starting to see the end of the rope, and slowly starting to feel worse.

Making it up the stairs was hard. I started waking up feeling a heaviness or a achy-ness in my chest that made it hard to breathe. Coffee sometimes made me feel worse (still a mystery). And I started to notice that I was being significantly impacted by these issues past an inability to exercise.

We laid out our next steps:

1. Methacholine challenge: “I swear it’s not asthma, but I’ve been wrong before. So let’s rule it out.”
2. Bronchoscopy
3. Speech therapy for Vocal Chord Dysfunction
4. Cardiologist: “at that point I’m out of options and I need to see what he may be able to find.”

But what if we can’t find anything?

In the beginning it all felt so small, so doable. I barely told anyone what was going on because I figured it’d be solved. I had to start telling people what was going on because some people started to assume I had so many doctors appointments because I was pregnant!

Methacholine challenge: “Everything was normal, of course.”

Bronchoscopy: “everything was normal” — the words I woke up to, met with immediate tears. I was sick of it and asked for my doctor to come back and explain. He graciously did, but offered no answers and no diagnosis. He was as frustrated as I was from a medical standpoint. I’m thankful for doctors who empathize.

Speech Therapy

Speech therapy didn’t last long:

“Are these exercises supposed to be helping?”
“You should definitely feel relief.”
“So do you actually think I have vocal chord dysfunction?”
“If you do it wouldn’t be an obvious case.”

Cardiology

My cardiologist was the end of the rope and he offered a light of hope. Based on my right heart cath, he said that there was a chance I had a hole in my heart. That could be it! It would explain the other weird things that have showed up on tests!

He was quick to schedule a treadmill EKG and a Transesophogeal Echocardiogram (what a mouthful. That was a pun. The name is a mouthful and the procedure requires a probe to go down into your esophagus while you are still somewhat conscious. Now you can laugh with me about the pun). I was so thankful for the way he put me into his schedule so quickly.

img_2281When I arrived in the cardiac lab the nurses who did my right heart cath said, “you’re back? They still haven’t figured you out?” They remembered me—some just by seeing my name—and I can’t describe the love that conveys when you are in a place of such exhaustion and vulnerability. Thank you nurses who care for your patients deeply.

“Everything was normal. The last thing I can do for you is a cardiac MRI.”

I mourned that normal result the next day praising God that it was a teacher work day and I could hide in my best friend’s office.

Then I decided that the MRI had to be it. My hand gripped the end of my rope praying that it would be ok if it were truly the end. I’d have an answer and I could let go of the rope.

Results were late (very late) and amidst the waiting past the waiting, I convinced myself that it had to be it.

“Everything was normal on the MRI.”

More tears. I dropped my rope with no solution and I was standing in the dark with no answer.

“There is something going on. This isn’t in your head. I’m sure it feels like it is because one day you’re fine and the next you’re not, but something is wrong. You’re not making it up.” It was one thing to hear this from myself, friends and family, it was another thing to have both doctors say this to me to remind me that this was something I needed to keep pursuing.

I debated on whether or not to give up. I decided if I gave up it would be out of fear that I’d keep being normal to more doctors. Fear wasn’t going to win. So I made an appointment with Cleveland Clinic for May 22, 2018.

I’m definitely not normal.

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