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

27 thoughts on “Room 506A

  1. I remember reading about this at the time Lauren and although we only know each other virtually I felt so worried for you. It must have been such a very traumatic and difficult time for you all. Sorry to read about your daughters illness, daughters are so very precious. Thinking of you x

    • Thanks so much, Allison. More and more memories have ended up in story form. All is good now and my daughter is doing fine, too. It’s a slow-progressing disease and the future is unknown, so she lives life fully each day. She and her fiance were married on June 9th via Zoom. They didn’t want to wait for Covid to exit, just wanted to be married, so that was exciting and beautiful. II don’t remember if you saw my post. We’ll celebrate in a big way later when safe. Anyway, she’s always lived in the “here and now.” And we’ve learned to do the same. Thanks again. xo

    • It is scary, but that was the easy part for me in 1996. The pancreatitis came out of the blue and was my scary moment, then not knowing if it was the same disease my daughter has and all the emotions stirring with that possibility. All is good for now, though. Take care, Andrew.

  2. Thank you for sharing. I’ve faced down that ol’ grim reaper a number of times. Lots of ER visits, two life or death surgeries. Health is wealth! Prayers to you and your family. ❤️🙏❤️

    • Thanks so much for reading and I’m sorry to hear of your scary experiences, too. You’re so right: Health is wealth! And thank you for the prayers. Take good care! 💗🌷

  3. This is very moving, Lauren. Thank you for sharing your story. I’m so sorry to hear of the troubles you had and of your daughter’s illness. Thinking of you. 🧡💙💛

    • Thanks so much, Barbara. As I wrote to another friend, more memories are appearing in written form. She is doing fine right now; one day at a time. Stay safe and be well. 💗💗

  4. I can remember how much my wife suffered with gall stones until I insisted she follow the doctor’s advice and have the gall bladder removed. Obviously its there for a purpose so there are side issues to deal with after a removal but the quality of life sure is better after an operation. As we get older there are many things to counteract a full quality life so you are absolutely right in observing we need to think positively and be thankful for what we have. Thank you for sharing your experience, it will be helpful to those going through trials like that now.

    • I hope your wife is doing okay, Ian. The pain from gallstones is excruciating and thank you so much for your caring words. You’re right, too: Everyone has stories to tell and sometimes reading those stories helps us to cope with something we’re experiencing. Take care and have a good day.

  5. A moving story Lauren. As a chronic patient, a nurse, and a family member, I know how trying. I did organizing and confusing a mere visit to the doctor or procedure can be let alone weeks of hospitalization.

    I’m glad you only had gallstones and that Stephanie your daughter seems well at the moment and a happy newlywed.

    Take good care.

    (By the way, I have given up on my blog since I could never figure out how to use it. Marty might be able to do it but I haven’t asked him )

    Sent from my iPhone

    >

    • Thanks so much, Barbara. I didn’t know you were a nurse. My sister has been a nurse for about 49 years, now works part-time as a home health nurse. I have great admiration for those who work in the medical field. Anyway, I’m fine and Steph’s doing well now. The disease is slow-progressing and she lives in the here and now, has never let it define who she is. And yes, they’re happy to be married. One day at a time. Sorry about your blog. If we could sit together, I could possibly help you. 🙂 I do appreciate you supporting my blog and writing. Have a good day. 💗

  6. Hospital experiences are never fun, but we’re sure glad they’re there when we need them. I’ve had a couple of things come up like that out of the blue, and they can be very scary.

    • Good point, Binky; I’m glad they’re there, too! I’m sorry to hear you’ve had some scary moments, too, but I hope all is well now. Thanks for stopping by and have a good day.

  7. It’s so very true…. it takes a visit to the hospital or some sort of health wake up call to remind us of how fragile we are and how precious each moment we get here is. I also got the call many many years ago, when diagnosed with an autoimmune. Changed my life, in a good way! 😉 Wishing you a healthy happy life, always! xoxoxoxoxo

    • It won’t happen again. The problem was fixed, but Steph’s situation is different. I guess I forgot that I had posted about this. Short term memory loss. 🙂 I don’t want anyone falling asleep. Anyway, thanks, Michelle, and Happy Friday! Love, hugs, and elbow bumps to you! 🥰💗💗

  8. I remember when you were going through this, Lauren. It’s so good to know you’re continuing to do well now. And in reading through the other comments I’m glad to hear your daughter is also doing well right now. Hugs to you both. 🤗💞

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