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

Fingers across the keyboard

Dear Friends,

This is a follow-up to my last post on Sept. 19th, and I’m typing as thoughts pour out, so this is more raw than edited. As you may remember, I’ve had a medical issue that landed me in the hospital over a month ago, and I’ve been anticipating a procedure that hopefully would’ve brought answers. Well, the procedure was last Thursday, an ERCP. It’s where a tube passes through the mouth, esophagus, and stomach into the first part of the small intestine. Then a catheter goes into the bile duct to detect causes for high liver enzymes (all non-alcoholic related), severe abdominal pain and jaundice. The doctor injects a dye so that x-rays can be taken of the biliary ducts. I’ve provided an image below if you’re interested. 

Image result for bile duct and liver anatomy

Surprisingly, the doctor (a bile duct expert) couldn’t get the instrument all the way down, in fact, barely down at all because my common bile duct is so scarred. I’ll spare the gory details, but long story short, it was incomplete. This means I have to repeat it next month. Honestly, when he spoke to my husband and I after I had been in recovery and I found this out, I felt depressed. I felt my shoulders drop, knowing, first of all, that I still have no answers, secondly, he still can’t rule out some scary diseases (one of which my daughter has), and thirdly, I have to do this procedure again. 

Everyone was so nice, though, and I’m grateful for an awesome team of doctors – doctors who we know because of our daughter’s experiences. And my doctor was genuinely disappointed with the turnout. But he’s also performed enough of these that he knew when to stop trying before causing complications. I thank him for that.

So, the symptoms I’ve had can be caused by gallstones in the bile duct (gallbladder is out), Primary Schlerosing Cholangitis (PSC, the auto immune disease my daughter has), or Bile Duct Cancer. I admit to being scared and have had some emotional moments. I hope it’s just stones, which are dangerous alone. Any of these causes affect the liver because if bile isn’t taken from the liver through the bile duct into the small intestine, the liver then becomes “sick” and begins to fail. Liver failure is fatal. For PSC, the only cure is a liver transplant, which is what we’re anticipating for our daughter in the future – a future that holds so many uncertainties. 

So why I am blogging about this? I don’t know. Maybe part is to bring awareness to the bile duct and how rare some medical issues can be involving it. Until our daughter was diagnosed, I didn’t give the bile duct a second thought. Nor my liver because I’ve never been a big drinker. This whole thing has been surreal – the fact that I’m experiencing everything similar to my daughter’s symptoms. She doesn’t drink alcohol at all, so it’s just an auto-immune disease that chose her. Ask anyone who knows me..I’m a lightweight when it comes to drinking. So, it’s all a case of being unlucky just like those who are diagnosed with cancer or some other horrible disease.

The upside to sharing what I’ve been undergoing is that in spite of the continued anticipation, the unpleasantries of another ERCP, or fear of the unknown and known, for that matter, life goes on. I feel better physically, although my throat still hurts, but it’s better than yesterday and the day before that. My mindset is healthier, and that doesn’t mean I’m not realistic either. The outcome will be good news or it will be daunting news. Regardless, I want answers. I want to know what’s going on inside me. However, I’m not trying to burden you by posting about this. Maybe what I’m going through will resonate with someone and be of some help even in a small way.

Selfishly, though, I ask for your ongoing positive thoughts and prayers. And I thank you for reading this longer-than-planned post. 🙂

Image result for moving forward

Moving forward with hope in my heart and love for my family and friends who have provided tremendous support. Lauren xoxo
p.s. The title of this post is credited to my son.
p.s.s. Both images are from Google.