Reality Hits
I shivered and wondered whether it was because of the cold air in the hospital waiting room or my own fragile nerves. I looked around at the muted blue shades and tan décor of the second-floor waiting room, which overlooked the hospital's first floor. We were surrounded by other families waiting on their loved ones, and I was grateful I had my mom and my husband’s parents beside me.
The four of us attempted to keep the conversation light, but our thoughts were quite heavy.
The longer we sat, the larger the knot in my stomach felt. My husband, Reid, had gone through these procedures before—several of them—but this time, it was taking too long.
I tried to keep my composure and hide the immense worry I felt through my entire body. I really needed to pee, but I couldn’t go now. What if they came to give us an update and I wasn’t here?
I massaged the spot of my hand behind my left thumb. I heard that helps with nerves before public speaking, so maybe it would help now. I shifted in my chair, trying to get comfortable but truthfully wanting to be anywhere else.
Then, a hospital volunteer called for the family of Timothy Reid Gray, and when we stood, she escorted us to a private waiting room. The room was just off of the main waiting area, and the plaque on the outside read “Family Waiting Room.” It was much smaller, with only six chairs. I immediately felt more confined. My heart sank. This can’t be good.
After what felt like forever, a nurse finally walked into the room. “Mrs. Gray? The doctor is ready to talk with you now.” She tried to remain as stoic as possible, but I could sense the seriousness of the imminent conversation. I wanted to bring my mother-in-law back with me because I knew I wouldn't want to relay this information myself, but only one of us could go back. For a split second, I debated sending her instead. Was I ready to hear what the doctor had to say? Did I have the strength to absorb this information and then walk back out to tell our family? Buck up, Abby. You can do hard things.
Dr. Reddy met me at the front of the recovery area, which he had never done before. Every other time, I was allowed to go back to Reid's bedside and see him, and then the doctor would give us both an update. But this time, they weren’t allowing me to go back and see him yet. The news must be bad, I thought, if the doctor wouldn't even tell me in front of my husband, the patient.
Reid and I knew this doctor well. He had been a great support to us, and we trusted him. He was always a straight shooter, and I expected this time would be no different.
I sensed that this information would change the course of our lives together.
We stood in the open area, leaning on the front edge of the reception desk. I looked around at the drawn curtains of the recovery bays, wondering if my husband was behind one of those curtains. Dr. Reddy asked the nurse for a piece of paper from the printer nearby, which she grabbed quickly. On that paper, he drew bile ducts and a liver. I watched closely as he scribbled inside the bile ducts to show me exactly where Reid had major blockages instead of open passageways into his liver.
While I appreciated this visual, I just wanted him to skip to the point. What are we dealing with here? How bad is this, and what does it mean for our future?
Reid’s disease had progressed significantly after only a few years of us thinking maybe he would need a liver transplant someday.
Dr. Reddy finally imparts the dreaded words. “It's time to call the transplant center and start the process to get him listed.”
Tears filled my eyes as I stood there trying to absorb every word that came out of his mouth so I could relay it to our family and Reid. My head was already spinning as I thought about what the transplant process would require and questioned how we could be having this conversation about my 31-year-old husband.
Then, the doctor wrote a percentage at the top of that same piece of paper. 90+%. He stared at me intently and said, “90+%. This is Reid’s chances of developing cancer in his bile ducts – cholangiocarcinoma – if he doesn’t receive a liver transplant soon.”
I knew his health had declined, but I still wasn't mentally prepared for the gut punch Dr. Reddy had just thrown my way. This was not a routine Spyglass procedure (an endoscopic procedure to closely examine the bile ducts in his liver). We were here in the hospital because, for the second time in a month, Reid had to be hospitalized due to excruciating pain in his abdomen. His body was trying to fight off a cholangitis infection that had developed in the bile ducts of his liver, and the pain was unbearable. Reid’s liver was trying to kill him.
Reid and I had been married for three years, and we were trying (with difficulty) to start a family. Now, we were told he needed to be listed for a liver transplant, and he also had a 90+% chance of developing cancer if he didn't get that transplant soon.
I tried to focus on all the information the doctor had just blindsided me with while also trying to keep my composure. I needed to deliver this news to our family, but how? How could this be where we were in our life together? Lately, we had been so focused on creating a family together, but now I questioned whether Reid would even be around to be part of that family.
I wiped the tears streaming down my cheeks and thanked Dr. Reddy for the information. He hugged me and advised me to share the news with our family in the waiting room. Once I passed on the dreaded news, I could head back to see Reid as he was still waking up from the anesthesia.
I began walking back to the waiting room, but before I could get there, my body pushed me against the stark white wall of the hallway, and I burst into tears. I stood there trying to stop the tears and urging myself to keep walking. I knew our family was waiting. They were just on the other side of those sterile double doors, and I didn’t want them to hear my cries. By this point, I figured they had a hunch it wasn't good news, so I knew every second I kept them waiting was excruciating for them, too. I gathered myself, or so I thought.
I walked into the private waiting room and tried to shut the door. This news shouldn’t be shared with an open door just off a crowded waiting room.
My father-in-law’s chair prevented me from closing the door to the already cramped room, but I couldn’t even mutter the words to ask him to move. Instead, I just motioned with my hand. I then realized I was holding my breath, trying not to cry, and as soon as I opened my mouth, no words came out. Only sobs. Pull it together, Abby, I thought. This is only making it harder on them. You've got to get through this, and then you can have your breakdown. They need to know what you know.
My mom grabbed a chair for me and placed it in front of them so the three of them could see my face. I looked at my mother-in-law, whose tear-filled eyes pleaded for the information. She had pulled her strawberry-red hair into a low ponytail, and the worry had obviously taken over her entire body. My mom, wearing a t-shirt instead of her usual cute outfit, watched me closely, and I felt as though she was silently trying to send me her strength to help me through this. The room was quiet as I wiped tears from my eyes and took a few deep breaths to calm my nervous system.
I finally pulled it together enough to speak and started with, “Reid is out of the procedure and okay at the moment. But…” All the information Dr. Reddy shared with me poured out as I tried to remember every detail. My mother-in-law, Tinker, had been a medical researcher for many years. She usually asks many questions, so I wanted to ensure I answered as much as possible when explaining. My numb body switched into auto-pilot as I continued sharing the grim details.
My mom reached for the tissue box on the table beside her and passed out tissues to each person.
I could see the disbelief in my mother-in-law’s face and empathized with her reluctance to believe the news I was sharing. My head then turned toward my father-in-law. He had his head down, and I could see the tears slowly streaming down his face.
When I finished sharing the doctor's information, we all sat there in silence, stunned, not knowing what to do with it.
What else was there to say? When was the right time to get up and see Reid in recovery? My heart ached to be with him after his procedure, but I also didn’t want to share this information with him until he was fully awake. Every other time he’d had a procedure, I would have to repeat the doctor’s update several times as the anesthesia wore off. Repeating those details would have torn me apart.
After sharing the procedure results with our family, and we had our time to shed tears, I went to see Reid. As I walked back through the double sterile doors, I leaned on that same wall to catch my breath. I needed to put on a brave face. I don’t hide my emotions well, so I knew Reid would know the results weren’t good by the look on my face.
I went to the recovery bay and pulled back the curtain to see the nurse leaning over his bed, asking how he was feeling. Reid was groggy, and it was apparent he had just woken up. I gave him a half-smile and felt we somehow had an unspoken agreement. He didn’t ask, and I didn’t tell. He just knew. He didn’t know fully, but he knew. I sat in the guest chair beside his bed as the nurse looked at me and asked, “Dr. Reddy talked to you, right?” I nodded to her and sucked in my breath to keep from breaking down again.
Reid looked at me as if to ask for an update, so I told him, “The procedure went well, but it just took a little longer. I will update you more as soon as you can remember.”
When the results were good, I always shared them right away. I didn’t mind repeating myself as many times as I needed to while he came out of his haze. “All is good, no major progress. We’ll be back in a few months for another procedure,” I usually respond. That wasn’t the case this time.
We sat silently as I tried to think of something else to say. Reid was quiet to avoid being laughed at. Because of his illnesses, he underwent regular colonoscopies and endoscopies and is always entertaining with his funny remarks while coming down from anesthesia.
Once, after a colonoscopy, he mixed up which procedure he had just had, telling me, “My throat doesn’t even hurt this time!”
I belly laughed and responded, “That’s great since they went in the other end today.”
After another endoscopy, he proudly told the nurse, “I dreamt I was one of the Avengers!”
When she inquired about his superpowers, he shook his head disappointingly and said, “I wasn’t a very good superhero.”
After quite a few procedures together, he had enough self-control to stop himself before saying things that would make me and the nurse laugh at his expense. Instead, he would give me a “thumbs up” with a knowing look, which he did then. I swear the look was, “I refuse to give you more ammunition,” it made me laugh a little.
We are those people who are constantly joking, no matter the situation, so I tried to keep it light-hearted. But this time, my heart was not light.
He finally looked at me and said, “Okay, I think I’m ready to hear it. You may have to repeat it, but I’m mostly aware.” I honestly can’t tell you how he responded when I told him the news because my head was now in a complete fog. Reid is pretty stoic about health stuff, so I imagine he didn’t have a big reaction. He took the information in and sat with it.
I tried to focus on the things I could control. I’m a “doer” and like to have control over the situation, but this was unchartered territory. I thought of what I could focus on, such as calling the transplant center. I also needed to share the latest news with our support system – at this point, we had come to rely heavily on them.
After what felt like forever sitting in an uncomfortable hospital guest chair, Reid’s nurse said they were moving him back up to his hospital room soon, and I could walk with them. I texted his mom to tell them they could start heading that way, and we’d see them back in his room.
On the way up to his hospital room, we passed by my mom, sitting in a small waiting area just outside of Reid’s room. She was on the phone and crying. When she looked up and saw the nurse pushing Reid’s hospital bed, I could see her panic. She attempted to hide her tears, but it was too late.
Then, we met Reid’s parents in his room. As we walked in, they frantically tried to wipe the tears streaming down their faces since they weren’t sure how much he knew. I looked at them and said, “He knows.” I did not want them to feel like they had to hold back.
Once the nurse situated Reid’s hospital bed into the empty spot in the room, his parents went to his side. The room was still dark from when we left earlier that morning, and the only light was shining through the large windows that lined one wall. Somehow, the room felt smaller than it had just that morning.
As Reid lay in his hospital bed absorbing the unwelcomed outcome of his procedure, my father-in-law, a mighty football coach, went to his side and held his 6’8” son and cried. That picture of a father’s love and pain is forever etched in my mind. He wanted so badly to protect his son and remove the hurt and hardship.
Reid tried to hold back his tears as the news sank in. His parents stood by his bedside as I sat down on the couch. This unfamiliar feeling had me crawling in my skin, and I didn’t know what to do. The room became silent since none of us knew what to say at that moment.
Reid’s parents then offered to give us time alone to process our future fate together. As soon as they left, I crawled into bed with my husband, and we both let go of the tears we were choking down. I whispered to him, “We will be okay. We will figure this out.”
Both of us knew the fight ahead would be a big one. We had yet to learn what the future would bring and whether our dream of building a family would ever become a reality.
When Reid’s initial diagnosis of liver disease, Primary Sclerosing Cholangitis, was given, we felt a lot of uncertainty surrounding what life with this disease would look like for him. Maybe one day, he would need a liver transplant, but maybe he wouldn’t. We knew that with this disease (and his simultaneous diagnosis of Ulcerative Colitis), he was much more likely to develop cancer, either in his bile ducts or in his colon.
After we wrapped our heads around the news together, I found my in-laws and my mom standing in the hallway just outside his room. Their tear-streaked faces and red eyes couldn’t hide their anguish.
I asked them to go sit with Reid since I needed to start making phone calls. The initial shock had worn off, and I had pivoted into “action” mode. I needed our troops to rally, and I needed to figure out how to save my husband.
This was not going to be how things ended.
