Room 506A

As sudden as an earthquake, I ended up in the emergency room several years ago because of severe abdominal pain. It turned out to be pancreatitis. I didn’t know anything about this condition but later learned it could be life-threatening. Pancreatitis is often caused by excessive alcohol consumption, but since I rarely drink alcohol, this wasn’t possible. The culprit turned out to be a gallstone found in the bile duct and the pain felt like a million knives doing the twist. Since my gallbladder was removed decades ago, gallstones never again entered my mind. Apparently though, if the gallbladder is gone, the gallstones have nowhere else to go.

It was an autumn Friday morning and I had just enjoyed a good cup of coffee with my husband when those knives started dancing. My husband comforted me as I laid down, but he felt helpless unable to take away the pain. After a couple of hours, I knew I wouldn’t be going into work. Maybe stubbornness played a role in my decision to ride it out. I didn’t want to go to the hospital. I wanted to enjoy my morning routine and have a productive day at work. Later I’d celebrate that it was Friday and the weekend was just around the corner.

However, things don’t always work out like we plan. That afternoon, I took in the sight of the emergency room where an IV was started, blood was drawn, and questions asked such as, “Are you allergic to any medications?” and “How would you rate your pain?” In full agony, I barely whispered, “It’s a ten.” The nurse gave me medication through the IV; soon the dancing knives ended their performance, although I wondered why it began in the first place.

While I waited for results, I couldn’t help think about the auto-immune liver disease my daughter was diagnosed with several years back – Primary Sclerosing Cholangitis (PSC). So far, my symptoms were parallel to hers. Could it be that I’ve had PSC all these years? As hard as I resisted, tears welled up. I kept thinking I had passed this horrible disease on to my daughter which made my heart ache. I was letting my darkest thoughts grab the reins and spiral me into a deep emotional funk. I fought back though, sliding these thoughts under the hospital bed. I had to remain calm and continue to breathe deeply, otherwise, I’d turn into a big mess.

If anyone has ever spent the night in a hospital, they’re aware of the constant nightly interruptions. Just when I fell into a soothing sleep, the nurse would come in and cheerily say, “Hi Lauren, time for labs,” or, “Hi Lauren, I need to check your vitals.” I know they’re only doing their jobs, but when I’ve fallen into a wonderful, deep sleep and woken up abruptly, it’s like entering an alternate universe. I’d roll over, hold out my arm with eyes closed while they poked and prodded. Then I’d fall back into my much-needed slumber.

By Sunday, I was raring to go home. The noise had taken its toll; a headache was coming on like a tidal wave from the high-pitched beeping. That deep longing for my own bed would not vanish. I woke up early and walked a few laps around the hospital floor. I had to prove to the doctor I was in good enough shape to be discharged, so I took each step slowly in a forward fashion. I was decked out in my blue hospital gown, tied securely so as not to put on a show. The red, traction hospital socks were the final touch to the classy ensemble. The venture was successful.

When I returned to my room, the nurse came in to share some bad news – that I was slightly jaundiced. This fed my anxiety because I thought jaundice was an end-of-liver-disease symptom. I’m right; it is, but it’s also a common indicator for other causes. Regardless, I was still well enough to go home, but since we still had no answers, I had to endure more tests. The most logical was an Endoscopic Retrograde Cholangio Pancreatography (ERCP). This procedure is risky since I’ve had pancreatitis, but it was the only method that could detect different causes, including cancer. Even though I was hesitant because of the risks, I agreed to the ERCP. On a stormy day in October, I walked through the hospital doors for the 1:00 pm procedure.

One memory that remains vivid from this procedure was the seconds of sedation consciousness. One of the medications slowed down my heart rate which concerned my doctor enough to halt what he was doing. It was during this time that I felt something down my throat, thought I was going to choke, and tried to get my doctor’s attention. In my mind, I tried to lift my hand but it wouldn’t budge. Just when panic was setting in…so did the sedation. Next thing I knew, I was waking up in recovery. I was happy to see my husband, who was relieved the procedure was over, and then my doctor walked in to share the results.

“Unfortunately, I wasn’t able to get the camera all the way down, Lauren…your bile duct was heavily scarred…I’m so sorry,” he said.

What? I felt my shoulders drop. The bottom line was to repeat this procedure, but I had to wait until the end of November, a six-week wait. I wasn’t about to tempt fate, so I dealt with the anticipation as best I could. The nameless cause morphed into an elephant in the room. Everywhere I looked, there it was. I had to maneuver around it in order to live life.

The clocks on the hand seemed to move at a slower speed, but the day of the procedure finally arrived. I felt relieved, but as I sat in the cold hospital room, surrounded by machines and medical staff, nervousness overpowered my relief. To calm myself, I said a silent prayer – that the doctors would have steady hands and sharp eyes to bring solid answers, for strength on my part, and for a “third time’s a charm” not to be necessary.

Once again, my thoughts returned to the days of numerous tests my daughter underwent when the doctors remained dumbfounded as they were unable to come up with a diagnosis for her. It took three years for one doctor, who was head of the Gastroenterology department, to finally give it a name. During those years, my husband and I lived in a cloud of disbelief that our daughter could be very sick; everyone has that invincible thought at some time “it won’t happen to us.” And while sitting in the office listening to the doctor speak, I felt time stop on the spot. The world may have kept spinning, but our family’s world became suspended.

When I waited for my diagnosis, was I afraid I could have cancer? Was I scared of having PSC? Sure, but mainly, I wasn’t concerned about myself. I simply didn’t want to be a burden; I wanted to be healthy so when my daughter needs me in the future, I’ll be able to comfort her. That has been my primary wish – that nothing happens to my husband, my son, or to me, so that when her disease progresses and becomes life-threatening, she knows her family is right beside her. Although bile duct gallstones can be serious, this is the primary reason I was grateful that neither cancer or PSC weren’t found.

Because of this painful experience, I’m reminded of just how fragile life is and that no day is guaranteed. I was fully aware before, but this fact became even clearer. It’s so easy to take even the simplest of tasks for granted. I even had moments when I could’ve easily lost sight of optimism and hope if it weren’t for the support circle of family and friends. I admit to still getting annoyed at little things, but my moments of annoyance don’t linger as long. My perspective is changed because I’ve tiptoed on the other side. Moving forward, I am grateful for the blessing of these positive results and hope for many tomorrows ahead.

Lauren Scott (c) 2020

Working on “Finding a Balance”

Dear Friends,

I am embarking on a new adventure and this is an introduction. My second poetry book, “Finding a Balance” is almost ready for publication and it’s nice to not be such a novice the second time around. This book isn’t just about sharing more poems I have written. It’s not only about me. It holds a deeper meaning; the new adventure part. The proceeds will be donated to an organization for a purpose close to my heart and my family’s. I’ll begin, though, with a back story…

Part I:
After three years of abdominal pain and ongoing tests, on October 4, 2012, our daughter, Stephanie, was diagnosed with Primary Schlerosing Cholangitis (PSC). She was 21 years old. Her doctor was the head of the Gastroenterology department and was extremely competent. He didn’t beat around the bush. He told us this wasn’t good. Below is a brief description:

Primary sclerosing cholangitis (PSC) is a very rare condition where the bile ducts inside and outside the liver become inflamed, leading to scarring, narrowing and blocked ducts, potentially causing a build-up of bile in the liver, and in some cases cirrhosis. Patients with PSC are at a high risk of developing liver cancer. Symptoms begin gradually with abdominal pain and itchiness and include worsening fatigue and, later, jaundice. Liver transplantation is the only cure for prolonged life. This is usually needed within 10 years of the diagnosis, but each patient’s case is different. 

I’ll try to keep the drama at bay, but I’m sure you can imagine our reaction. Our daughter doesn’t drink or do drugs so there is nothing she did to provoke this diagnosis, which is why it’s called an auto immune disease. This was a shock to our entire family. My husband and I had many emotional moments, wishing we could take her place. We were paralyzed of doing anything that didn’t need doing for the rest of that year, except for the necessity of living. We asked God why…why Steph? She has a heart of gold and is simply a nice, caring individual. Many have asked these same questions and there are still blanks waiting to be filled.

Since 2012, she has had symptom flare ups with several ER visits, but otherwise, on the outside, she’s beautiful and looks perfectly healthy. The doctor told her to live life to its fullest. That was his profound advice. She has a stellar attitude. She lives in the HERE AND NOW and there is no other option. She is due to graduate this year with a Bachelor’s Degree and has been busy with school, friends, her boyfriend and of course, family, with no time to sulk. She is human, though. She has broken down at times, but I think, as her parents, our score is higher.

So…I’m telling you this not for sympathy but to bring awareness to this horrible, slow progressing, life threatening disease and most importantly, the need for organ donors.  

Part II:

All proceeds from my book will go to The Chris Klug Foundation (www.chrisklugfoundation.org), also found on Facebook.
Chris (born November 18, 1972) is a professional alpine snowboarder. After receiving a liver transplant in 2000 to treat PSC, he went on to compete in the 2002 Winter Olympics in Salt Lake City, winning a bronze medal in the Parallel Giant Slalom. This was the first and so far only time a transplantee had competed in the Olympics. He also won a bronze medal and lit the torch at the 2002 National Kidney Foundation U.S. Transplant Games. In 2004, Chris released a book called To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder. (Wonderful book of inspiration and hope)

chris klug foundation

Below is an overview and mission of his Foundation:

Founded in 2003 by liver transplant recipient and Olympic snowboarder Chris Klug, The Chris Klug Foundation is dedicated to promoting lifesaving donation and improving the quality of life for donors, donor families, organ transplant candidates and recipients.
CKF is passionate about sharing the message of donation, and educating people on the impact one person can have on the lives of so many others. Over one hundred and ten thousand people are currently on waiting lists for solid organ transplants across the U.S.A. CKF is devoted to making a difference to those waiting for a second chance. We are also there to help promote the message of organ donation.
Working with young people across the nation, CKF provides campaign materials and information for “Donor Dudes” chapters in high schools and college campuses. People everywhere are touched by organ donation and transplants, and we want to get the message to everyone.

The publication for my book will be at the end of this month or beginning of February. I’ll do a separate post when it’s available and again, I’m very excited for this new collection to have a greater, deeper purpose.
Our life now is about “Finding a Balance” between PSC and all the good things!

Someday Stephanie will need a liver transplant so becoming an organ donor is an unselfish way of giving another soul a second chance. 

Thanks so much for reading and I wish you all Happiness and Good Health!
If you’re so inclined, prayers and positive thoughts
for Stephanie will be greatly appreciated.

Lauren
♥ ♥ ♥