Sarcoidosis-That Rare Disease
The End is Near...Might as Well Have Some Vino?
This is the End
It was March of 2004. The symptoms? I couldn't breathe.
Seems like quite an important function, doesn't it? That whole breathing thing. In and out, in and out. Moving oxygen safely into the lungs and expelling carbon dioxide.
It's the process we've been doing our entire lives. No one ever taught us how. No one stresses over how it is done, unless of course, you can't do it.
It's at this time when we are convinced the end is near.
I Must Be Dying
It was midnight. 12:00 on the dot as my eyes popped open. The day had been a normal one, work from eight to five, dinner, dog walk, a little television, and then light's out. Nothing strenuous, nothing stressful, nothing that would cause me to have trouble breathing. And certainly nothing to wake me from a deep sleep.
I looked around the room, trying to trigger a memory. The first thing I thought of was that perhaps I had a violent nightmare. The ones you see in gory horror flicks. The one that wakes the innocent person from a dead sleep causing them to gasp for air before an axe-murderer steps out from the closet and hacks them into little pieces.
There was nothing. Not that I wanted a psycho taking residence in my closet!
While I couldn't breathe correctly, I was still breathing. After all, twenty minutes had passed and I was still conscious. But, something was amiss.
The second thing I thought of was that I was having a heart attack. My imagination began going to the dark side. Elephant sitting on my chest? Check! Then I thought about the other symptoms. Loss of Breath? Check! Shoulder pain? No. Sweating? No. Choking? Not at all. The rhythm of my breathing, while fast and panicked, was fairly normal.
Go Back to Sleep
Go to sleep. That might be someone's advice. But my mind wouldn't relent. I thought of every disease, every ailment, every remote possibility. As a matter of fact, I stayed up the entire night trying to catch my breath, trying to figure out what it was. Someone else may have suggested calling a doctor, or rushing myself to emergency, but...I was breathing.
To give an accurate description, it was the continual feeling that I had to yawn. If you know the deep breath that accompanies a yawn, this was what I was aching for.
But the continual in and out motion of breath was completely fine. If you've ever had a yawn interrupted, then you may realize the feeling I am speaking of. Now, imagine that feeling for hours on end. It was at that point that I realized what a powerful tool our mind is.
That I-have-to-yawn feeling, coupled with my mind's imagination caused anxiety to get folded into the mix, joining together a nice recipe for complete and utter panic.
Time to See a Doctor
The Doctor is In
I waited until morning and I drove to work still trying to catch a good deep breath. Every now and then, my body gave in and granted me that wish. It was the most euphoric feeling in the world, but then it would disappear, replaced by the constant effort to take in air.
Toward mid-afternoon, I gave in. I had to go to the doctor. I made an appointment and they took me in that day. They took some X-rays, diagnosed it as pneumonia, gave me antibiotics and sent me home. Pneumonia. Now, I've never had pneumonia before, but from what I knew about it, it usually consists of a heavy cough, lethargy, fever, headache, and chest pain. All of those symptoms of which I had none, however, I wasn't a doctor, so I heeded their advice.
After a week's worth of meds, I wish I could've reported that I was cured, but if at all possible, it became worse.
It just goes to show you doctor's do not know everything. No one does.
You Have What?
Have You Ever Heard of Sarcoidosis?
You May Have Boop...
"We Just Don't Know"
Upon returning to the doctor, I was met with a grim, "I don't know what is wrong with you." Apparently, my illness wasn't in the medical books yet. We tested for tuberculosis and other breathing abnormalities. I was sent to a pulmonologist immediately. Normally there is a waiting period, but I was taken in the next day. We did bloodwork, more X-rays, breathing tests, pulmonary function tests. You name it, we tested for it. The doctor literally had a textbook on his desk, skimming through the pages.
"You might have BOOP." Of all diseases, I get BOOP. What the heck is that?! I'll tell you what it is, but I don't know if it will be any clearer than its acronym. It is Bronchiolitis obliterans organizing pneumonia. I can tell you it's something I didn't want to have, but aside from that, I didn't know much more.
The doctors weren't sure either.
We did tons of CAT scans, MRI's. More CAT scans and more MRI's. More X-rays. More bloodwork. Six months worth. We tried inhalers, different antibiotics and nebulizers. Nothing worked.
I researched every breathing disease available online. I created spreadsheets detailing my symptoms in comparison with other diseases. Nothing matched.
Visit me on Facebook!
Up until this point, I had never been hospitalized. I was happy about that. I didn't want to ever be hospitalized. The powers that be, however, enforced that exploratory surgery was necessary. I got a second opinion. He agreed. So did the third. I had been living for six months trying to catch my breath to no avail. My activities had been limited. I had to agree. It was time.
The first was an outpatient procedure. A bronchoscopy. A procedure to take a nice look at my lung. I was in and out and had no issues. Except, they couldn't find anything. This meant a more invasive surgery.
It was scheduled for July 24, 2004. I won't give details for those who hate medical procedures as much as I do, but I was in intensive care for three days.
My surgeon was incredible as the moment I regained consciousness, he pacified my fears and told me it wasn't cancer. My one moment of relief in an otherwise tumultuous year.
The Results are In
Sarcoidosis. For us who have it, sarcoid for short. It's a rare auto-immune disease. The X-Rays of the lungs look black with spotty 'granulomas' throughout.
I explain it as it simply looks as though the lung is made of Swiss cheese. It's just easier.
Now, this was 2004. Ten years ago, there was basically nothing upon this disease. I could more or less recite to you what each and every website said. "There's a 5% chance of fatality. Occurs in women over age twenty. Can heal on its own, leave scarring or get worse. It can come back at any time or never come back at all. Many people have this disease and don't know it. It's not hereditary. It's not contagious..."
There was a diagnosis. That was all I cared about. My anxiety lessened at the news. While still a very serious and potentially deadly disease, I now knew what it was. So, now all I had to do was find a cure.
Someone You Know?
Do you know anyone with sarcoid?
Here's the fun part. There are varying degrees of Sarcoidosis and in the beginning stages, the symptoms might not be debilitating. The anxiety from not knowing was a contributing factor in the shortness of breath, as once I found out, I actually breathed a little easier.
The treatment, which I tried for one month, is prednisone. I could easily list the side effects of that drug, but it would take up the entire page. There are many. I describe prednisone as putting out a fire with gasoline. It may cure one ailment, but create many others. I stubbornly decided to only use it when I needed it, and then once I discovered you had to wean yourself off, I decided never to use it again.
It is advised to avoid Vitamin D or keep it to a minimum.
It's been ten years and I've learned to simply take it easy on the days that I have difficulty breathing. That method has worked nicely for me so far, and I plan to use that method as long as I can.
Do You Have Sarcoid?
If you or someone you know suffers from this rare disease, it may be wise to seek advice from different doctors. Some are more experienced with it than others and can now offer more insight than they could almost ten years ago. It's not a fun disease, but compared to where my imagination had taken me, it's one I will live with.
That entire experience wasn't a waste, however, as when I thought I was dying, I learned to appreciate living.
Thanks for reading!
~ Elizabeth Parker
"Bringing awareness about dog adoption and rescue, one dog at a time!"
Author of Finally Home, Final Journey, Paw Prints in the Sand, Paw Prints in the Sand: Mission Accomplished, My Dog Does That!, Bark Out Loud, Unwanted Dreams, Phobia, Evil's Door and Faces of Deception. All books are available in Kindle and paperback format on Amazon.com.
© 2013 Elizabeth Parker