On the first anniversary of the transplant, we had a special dinner to celebrate. The second anniversary was less formal. I was in Mexico and my aunt/donor was in Ireland. A bunch of us exchanged text messages and in that moment, I felt an intense sense of freedom. Freedom is a funny thing, here today, gone tomorrow.
The third anniversary is approaching and was something I had been looking forward to. Three years of uninterrupted freedom was a milestone I really wanted to reach. But I didn’t quite get there.
At home, the pain was all consuming. I couldn’t watch TV. I couldn’t sleep. It was around eleven o’clock when my father entered my room and found me writhing in pain, groaning at the impossibility that this could be happening again, after everything we have been through. It felt as though I was being plunged into darkness. The level of despondency and sense of abandonment I felt was overwhelming, for I knew my streak of staying out of the hospital was over.
Dad and I both suspected a bowel obstruction and because I have had a kidney transplant we didn’t want to play with fire. The look of solemn dread on my mother’s face as Dad and I left the house for the ER will stay with me forever.
Of course, the ER was packed. The people around me gave me strange looks and moved away when they heard me groaning, curled up on two chairs pushed together. Eventually, I was escorted to a small room for an interview. I don’t remember very much of it. I am sure I mumbled through my long and extensive medical history but that is lost on me. The only thing I remember saying is that I’ve had a kidney transplant and that I needed pain medicine, stat.
After the interview, we ended up in the hallway because there were no rooms available. Every time I groaned I can’t do this, Dad was there to comfort me, remind me that I have survived worse.
At one point, Dad walked away to phone the UCLA Transplant Hotline and came back saying that they suggested a CT-scan without contrast. Contrast puts a lot of stress on your kidneys. It should only be used in dire circumstances. Circumstances beyond the present one. So that’s what we did. When the results came back our fears were confirmed. A bowel obstruction was diagnosed.
After the CT-scan, we waited and waited in the hallway. Still no rooms available. Then a lady approached to draw blood. The blood test results would reveal if my kidney was okay. I was terrified it had or would suffer damage. Or worse, be lost. All I could do was shoot a quick arrow prayer asking God to protect it from harm. I handed over my arm with trepidation and looked away as the nurse swabbed it with an antiseptic wipe.
“Ah, FUCK!” I shouted before turning my head to see what she had done to my arm. It was as though I wasn’t myself. “That hurts like hell!”
“Shh,” Dad said with authority and I immediately snapped out of it. When the needle was withdrawn, my forearm swelled like a balloon. And was black and blue within an hour.
Eventually, I was wheeled into a room in the corner of the ER. An IV was inserted. I was given morphine. And a fog rolled over me. Through the effects of the medicine, I couldn’t shake the feeling that something wasn’t right. Bad vibes were everywhere.
After being admitted and taken to another room, I told Dad that I didn’t want to have surgery here. “Don’t worry,” he said. “I have already emailed Dr. Kaiser.” Dr. Kaiser is a brilliant colorectal surgeon at Keck School of Medicine of USC and has operated on me in the past. We trust him.
Dr. Kaiser replied to Dad’s email promptly that morning. He advised staying put until we knew for sure that I needed surgery. Many bowel obstructions clear themselves.
Super Bowl Sunday started off with good news: my kidney function was within my normal range. The rest was a blur. I was high on morphine and in and out of consciousness. There were people in my room and the game was on, this I know. But that is about it.
At some point, later that night, my nurse asked if I felt the urge to urinate. There was no urge. There hadn’t been an urge. “Why don’t you try standing,” she volunteered knowing it had been about a full day since I had urinated. When I stood, only a few drops came out. Another panic attack washed over me.
What if the kidney isn’t producing urine? I thought. Oh, God. What now?
I fired off prayer after prayer as my nurse wheeled in a small ultrasound machine and homed in on my bladder. My abdomen was so swollen.
“Do you think the swelling is pinching my bladder off or something?” I asked when she discovered my bladder full of urine.
“Must be,” she replied. “We will put in a Folly and drain it that way. That should alleviate some pain, too.”
Monday was the day I began throwing up. Soon after, the dreaded NG-tube paved a path through my gastrointestinal tract. It’s a tube that goes up the nose, down the nasal cavity and throat, and into the stomach. It sucks out the sick looking green fluid that is unable to pass through the gastrointestinal tract because it is blocked off.
By Tuesday it was clear I needed surgery. The surgeon assigned to my case gave it to us straight:
“I am not looking forward to performing surgery on you,” he said hedging his position. With clipped speech and stern eyes, he added insult to injury. “It’ll be a minefield in there. Really complicated. There is no telling what it will be like. Your anatomy has been severely altered from all your previous surgeries. There must be a lot of scar tissue in there as well.”
There’s a saying: It’s not what you say, it’s what people hear.
What I heard was, you are no longer treatable.
When the surgeon left my room Dad and I both looked at each other in disbelief. I was devastated. I’ve fought for so long, endured the unendurable and it was finally over.
“Don’t worry,” Dad said putting his arm around me. “He’s not going to touch you. I have been in contact with Dr. Kaiser and Keck Hospital of USC. We are arranging a transfer.”
The surgeon was active in encouraging the transfer. He seemed relieved that he wouldn’t have to operate on me. This left me feeling terrible, thrust me deeper into the pit. What made matters worse was that I wasn’t given pain medicine with any regularity. So, I was in a state of shock and awe the entire time we figured things out.
That night was one of the worst nights of my life. I still couldn’t urinate. I needed to pee so bad but couldn’t. We suspected the original Folly wasn’t put in correctly. The pain was so bad l couldn’t even lay down. So, I sat on the side of my bed staving off one cramp after another. At one point my nurse put my pillows on my overbed table and gave me an injection of Dilaudid and Benadryl. She wanted me to try sleeping sitting up. When I put my head on the pillows she rubbed my back until I dozed off.
When I still couldn’t urinate the following morning, a urologist appeared to change the Folly. As my bladder drained, he marveled at the botched job the young nurses had done at the other hospital. Urine flowed throughout the day which relieved a lot of pain.
A PCA was installed to my IV tower about an hour or so after the urologist left. The PCA allowed me to manage my pain with a small button. It gave me the ability to give myself smaller, more frequent doses of pain medicine. It was a huge help. I was finally on a solid pain schedule.
Late Thursday afternoon, surgery was scheduled. Dr. Kaiser’s calm and confident personality gave me hope. He wasn’t afraid to operate. And I thanked him from the bottom of my heart for all he had done.
Mom and Dad arrived around noon, nervous as ever. Mom talked and talked. Unable to on my own, Dad helped me clean up. He washed my hair, helped me shave, and wiped my body down with antiseptic wipes. Needing help with such basic tasks is awful. The vulnerability and helplessness leave their mark.
As we were drying my hair the transport arrived to take me to the preoperative station. It was time. They waited for me to finish, and then wheeled me away.
In preop, Mom, Dad, and I were crammed into this little room. Doctors and nurses came in and out asking the same questions over and over. While we waited, I emailed the care pastor at my church asking for prayers. Then I went into a zone, the way athletes do before a big game, readying myself for what was to come.
I have had five major abdominal surgeries, not including the kidney transplant. My abdomen has been reapproximated so many times. After a major surgery, your body is not the same, you are not the same. And you never will be again. I wondered if my body had had enough, wouldn’t be able to absorb any more punishment. Would this surgery be the one to put me over the edge?
I prayed that God would see me through. But as I did an even greater fear crept into my though process. What if I made it? What would life be like? An event like this leaves a huge wake. Every trauma is unprecedented. As bad as the event is, the mental aspect following is even worse.
“Okay, so this will be complicated,” Dr. Kaiser said once he entered the preop station wearing his surgical scrubs. “I wish we could have, but due to your kidney transplant, we weren’t able to conduct some tests. So, we are going to have to explore once we get inside. But don’t worry, you are in good hands. I’ve reviewed your medical records, especially the work we’ve done together. The surgery could take up to eight hours depending on what we find. There is likely a lot of scar tissue we’ll have to contend with. That will take time. But once we are in the OR time doesn’t matter. We will work until the job is complete.”
I nodded anxiously.
“I’d like to put a PICC-line in your arm, so we can feed you TPN. Is that okay? You need nutrition at some point. Five days is a little long to go without, wouldn’t you say?” he said with a gentle smile. “The PICC is a more permanent IV but I am sure you know that already.”
“Yea, if it’s okay, I would prefer a CVC in my neck,” I replied. “As it is, I can’t have a PICC in my left arm because I have an occluded fistula there from when I did dialysis. And I’d like to save my right arm if I ever need another one. If I ever need another kidney transplant that is. If you put the PICC in my right arm it will compromise the vein I may need in the future.”
“Ha,” Dr. Kaiser laughed. “You are so negative.”
“I’m being realistic here,” I said with a half-smile. “I’m young and those kidneys have a lifespan.”
“Okay. I’ll see what we can do,” he said nodding, understanding my perspective. Then he left.
My parents gave me their love and we said a prayer together. We thanked God for getting us this far. We asked Him to watch over the surgery and guide the surgeon’s hands.
“If you need to make a tough decision, make the tough decision,” I whispered to Dad after pulling him in, so Mom wouldn’t hear.
Then transport entered, and I was wheeled away.
I was taken to the bright white operating room. I scooted my body onto the surgical table and was put to sleep. When I awoke, I was in the ICU and in excruciating pain.
“The pain medicine needs to be upped,” was the first thing that stumbled out of my mouth. I was groggy and still out of it, but the pain burned with every breath, with even the slightest movement.
You remember how physical pain makes you feel. But you forget how it actually feels until the time has come.
I wasn’t as happy as Mom was. I was still in shock. The idea that a bunch of strangers had unzipped my body and rearranged things was still settling in. That notion has always been disconcerting. It is a violation nobody should have to experience. Nevertheless, I forced a smile through the fog of pain and drugs.
Then Dad added the technicalities he knew I would want to know. He said the colon blockage was the result of a small twist in my bowel, not scar tissue build up as everyone suspected. It was bad luck. “Only a small section of it needed removal,” he said measuring inches with his thumb and pointer finger. “The resection went well.”
We talked as though we were friends. The nurse-patient relationship was set aside. She asked about my medical history then listened intently. She absorbed everything that came out of my mouth. She responded with empathy, rather than retreating behind a stone wall.
Then I told her the story that led me to her. “Wow,” she said. Her eyes went sad. “How are you coping with everything?”
I replied honestly, telling her that I wasn’t doing so well. I told her I thought this episode was going to ruin me emotionally. It has taken me nearly three years to start trusting life again. And now, it felt as though that was out the window.
“Yea, you know,” she replied in a quiet, restrained tone of voice. She seemed a little nervous. “I Just think it’s not what happens to you, right, it’s how you handle it.”
Admittedly, her reply blew me away. In the fire, you forget yourself at times. In the darkness, God is with you. No matter how you feel. In fact, it may be at times such as these that He is closest.
I smiled nodding my head because she was right. You can’t control what happens to you, but you can control how you respond. I wanted to respond in a Godly way, a faithful way.
It’s about this time that things became more spiritual than physical. I reached out to my support network, which over the years has grown rather large, to start praying. I restarted my daily devotionals – reading two chapters of the Bible each morning. I read the book of John, too, because we had been studying it at church.
The good news was that my kidney was performing well. In fact, better than before I was in the hospital. I found that strange. So strange that I asked the transplant nephrologist looking after me about it. He speculated that it may be because I had lost twenty pounds since I had been in the hospital. He said that meant that the transplanted kidney didn’t need to work as hard. Whatever the reason, I was relieved.
The days became rote, mechanical. All the same. A routine that remained until I left. They began around six a.m. and usually ended around midnight. I consulted my doctors. Read my Bible. Prayed. Walked as much as I could. Updated my Facebook page. Became friends with all the nurses on the floor. Welcomed visitors. Binge watched Netflix.
Valentine’s Day wasn’t very romantic. I read and watched movies on my iPad. That night, I walked the 9th-floor corridor with my aunt and cousin. We talked about life on the outside.
My bowels began making subtle, slow moves around the thirteenth or fourteenth day. Then they went back into hibernation. That’s when we got more aggressive with the laxatives and a #prayforpoop emerged on my Facebook page. On the sixteenth day, we pulled the NG-tube and I began drinking a limited amount of fluid. I tolerated it well – I didn’t throw up or experience any nausea or cramping.
Frustrations surfaced. The unity between doctor and patient fractured as my bowels remained uncooperative. Dr. Kaiser felt it would be best to put a PICC-line in my right arm and send me home to feed myself intravenously. He thought my bowels needed more time to heal and figured I would do better at home. I resisted, not wanting to go home with a catheter and an IV tower, and I was still reluctant to damage a vein in my arm.
“You have been in the hospital too long, Sam.” Dr. Kaiser said on the morning of the seventeenth day. “We need to put the PICC in and send you home. At this point, it’s more dangerous for you to be here than not. I realize you have been traumatized but it is what’s needed.”
We had gone around and around like this for a few days. I took his advisement seriously and I truly appreciated him taking my concerns to heart. Dr. Kaiser is a thoughtful man and I value him as a person and doctor. On the morning of the eighteenth day, we came up with a compromise. We would give it one more day and if I didn’t poop the PICC would go in.
My nurse entered my room not long after Dr. Kaiser left, and we got to work. I stacked two kinds of laxatives. One pill, and one liquid. Mom and Dad said they would bring prune juice and two of mom’s “special” natural laxatives, too.
My Aunt Carole arrived around noon. She was carrying what would amount to a Big Gulp of green substance and a smile as wide as I’ve ever seen. “I had the girls throw in a shot of ginger,” she said with a wink and a nod. “They said it will get you going for sure.” I drank the ginger spiced pressed juice and walked with her around the corridor.
By six o’clock there was no real movement, but I thought I felt something brewing. My nurse gave me more laxatives. Then Mom and Dad showed up with the prune juice and “special” pills. I took one of them and saved the other for later.
About an hour after my parents went home I started going poop. It was only a little bit, not nearly enough to demonstrate to Dr. Kaiser that I was fully functional. But it was something.
I couldn’t sleep that night. I was so worried.
Then, out of nowhere, in the middle of the night, there was a major movement. I had the blow out we were all praying for. What a relief. God had once again shown his faithfulness to us; our prayers had been answered.
On the morning of the twentieth day, one of my doctors entered my room. She peeled off the thick bandage covering the left side of my neck and snipped a few stitches. Then she asked me to hum. When I did the five-inch-long catheter was pulled from my neck. And just like that, it was over. After twenty days, freedom reigned.