Wow! I consider myself a planner and feel like I always do my homework before jumping into things. I study trail maps for hours before hikes. I envision all the medical emergencies I may face when building a first aid kit. I scour nutrition data deciding which foods have the best calorie to weight ratio before backpacking trips. I did all the internet research, talked to doctors, talked to donors, and thought I had a realistic idea what the donation process would be like. I was wrong.
My hope through sharing my story is that a person heading into donation may read this and have a better grasp of what they are getting into, and what to expect in the days after. I believe every person will have his or her own donation experience. Some things will likely be in common with mine, and some things will be very different. This is my story.
My surgery was nine days ago on Wednesday, April 10th, but for me, the real work started a couple days before that. Two days prior to surgery I met with my surgeon for the first and only time. He was nice, confident, and took the time to answer all my questions. He explained in honest language just how brutal this surgery is. Retrieving my left kidney through a 4” hole across my belly button is not a simple task. Our kidneys are located much closer to our backside than our front. In order to retrieve it, my stomach would be expanded with air, and then all my insides gently cut loose and sloshed to my right side. He would then isolate the kidney, sever and staple the various veins and ducts, reach his hand in through the incision, and voila, a baby kidney is born!
This surgery would be orchestrated in tandem with my uncle receiving the kidney. It was explained to me how his surgeon would be cutting him open nearby and preparing his body to receive the kidney. The kidney would be placed up front in his lower pelvis, hooked up, and his belly stapled shut. I was told his surgery would require much less trauma to his body, and that his recovery would be far quicker than mine. My surgeon’s words were, “When you come to, he will likely be walking into your room feeling great and you will want to punch him in the face.”
I was also told I would have a catheter and breathing tube put in while I was under anesthesia, and that the catheter would remain in for at least one night. I was told it would take days, weeks, and even months to fully regain my strength and stamina back.
I listened intently, and slightly scared, to all these words, but the competitor in me was ignited. As an athlete, I felt like this was a challenge, and I love a challenge! I felt confident I would be able to bounce back quicker than predicted.
I planned to stay home the day before my surgery for what my surgeon called “Bowel Prep.” Being a healthy 35 years old, I had no experience of this wonderful event yet in life. My instructions were to purchase two bottles of magnesium citrate and drink one in the morning and one at night. Clear liquids only that day, and nothing after midnight. It honestly wasn’t too bad, and in between trips to the bathroom, I packed my bag for the hospital. Just like all my adventures I carefully thought through all the scenarios. I took several changes of clothes, toiletries, coloring books, reading books, tablet, and food.
I began my journey 5′ 10” at 175 lbs with an athletic build. During the “Bowel Prep” I lost 5 lbs, even with lots of hydration. I didn’t sleep great the night before, but when my alarm went off at 4:15 AM I felt as good as could be expected. I took a final shower with the special anti-bacterial soap I was given by the hospital and picked up by my mom. We arrived at the hospital in Kansas City at 6:00 AM.
We met my uncle and his wife there. My dad was also there and we all nervously waited as we finalized our admission. I was called back into a room, handed a gown, socks, hairnet, and given what seemed like lots of instructions. I met with the anesthesiologist, an IV was started, and vitals were taken. Everything began moving very fast. I tried to remain calm and reminded myself I was just along for the ride. Everything I could do was done. I had prepared the best I could, and the rest was up to the doctors, nurses, surgeons, and hospital staff. I also found comfort knowing my grandma was watching down over my uncle and me and keeping us safe.
Around 8:00 AM I was wheeled out and gave everyone a final goodbye. My living donor coordinator stayed by my side the entire time and helped me feel at ease. We arrived in the operating room and I felt like I was in an alien spaceship. Huge bright lights were overhead, and all types of instruments lined the walls. Many people filled the room. Jokes began about shaving off my prized beard. I saw a nurse pull out a cell phone. She rested it on my belly and I peacefully fell asleep listening to ZZ Top – Sharp Dressed Man. Everyone in that room was great! The surgery took a little over 2 hours.
I came to what I refer to as the “Holding Cell.” A large room with lots of people in beds slowly coming out of anesthesia. It seemed like a looney bin looking at all the characters, in various stages of coherency. I was asked by a nurse how I felt and handed some ice chips. My mouth was dry and the ice tasted wonderful. She asked if I was in pain and much to my surprise I was not. I told her I did not want any pain meds. I do not like taking any meds unless necessary and I was not wanting to take any unless I felt they were needed. I knew they have side effects and wanted my recovery to be as quick as possible. I had been given what the anesthesiologist referred to as a “block” and it seemed to be working. I was told by the nurse I am the only person she has had who did not want pain meds after that type of surgery. I asked about my uncle and was told he was doing fine and recovering at the far end of the room. I dozed in and out for a couple hours before they told me I was ready to go to my room. I asked to see my uncle on the way out and they happily obliged and took a priceless picture of us.
I got to my room on the 5th floor and found my mom and an aunt waiting for me. I still felt OK, but the pain was creeping in and soon I was equipped with an IV bag and morphine pump. The catheter remained in me but was not noticeable. I could press the morphine button every 10 minutes but didn’t seem to need it but a few times each hour or less. My stomach felt bloated and I could feel the gas from surgery all through my belly. It rose up under my chest and eventually escaped as painful burps. It was mid-afternoon, and as predicted by my surgeon, my uncle came strolling in thanking me and seeing how I was. I wanted to punch him! How was he up already? I am the athlete. I could not begin to think of getting up. Could the doctors really have been right about my recovery? Was it really going to take days or even weeks?
My mom stayed with me in the hospital that night, and we both dozed in and out of sleep for an hour or less at a time. The morning of Thursday the 11th came and I was in a lot of discomfort, but not pain. I quit hitting the morphine button early that morning and told myself I was done with it. My stomach still felt very bloated and I continued to burp a lot. I tried to nibble at bland food, but my usual huge appetite had vanished, and small bits of yogurt was all I could eat. My surgeon’s nurse came by and suggested I “stay ahead of the pain” and that I should continue to use the morphine. I gave in and continued to press the button a few times each hour.
Later that morning my physical therapist came by and suggested we go for a walk. I knew that is what I needed to do, and it would help with the bloating. I made it to the doorway and then froze in a cold sweat as the room spun and my mouth salivated. My body felt all out of whack. It wasn’t the body I knew. I couldn’t keep going. I paused and then made a retreat for my bed. I wasn’t sure exactly what was happening. I have pushed my body to extremes in the past, cycling over a hundred miles in a day, running for over 8 hrs straight, hiking for days at a time, but this was different.
I lay defeated in my bed resting until lunchtime. My living donor coordinator then came by and suggested I try to move from my bed into a chair. With her help, I got there, and she began telling me how she doesn’t tolerate morphine very well. I listened as she described her own dealings with opiates and I realized then that the morphine there to help me was, in fact, slowing my recovery. The pain was not bad. I could deal with it. I could not deal with nausea though. The thought of throwing up or dry heaving with fresh stitches in my abdomen had me paralyzed in fear.
My uncle continued to recover very well several rooms away on the same floor. He was eating and out walking lots. I was happy for him, but I wanted to be out walking the halls with him. I met with my in-hospital pharmacist who was sympathetic to my feelings. He explained alternatives to morphine and I learned we are one of the only countries in the world that prescribe opiates with such ease, and that in many cases simple Tylenol can do the trick. This was also the first time I was offered Zofran for the nauseousness and it had an immediate impact. I took no more morphine from that point forward and my recovery improved dramatically.
For me, this was a game changer. I made it to my uncle’s room that night and told him he better rest up cause I would be giving him a run for his money the next day. I ate more yogurt and applesauce that night, but the bloating and lack of appetite kept me from eating much. I asked to have the catheter left in another night in hopes of sleeping lots and not wanting to have to get up to use the bathroom just yet on my new found legs. My mom went home for the night at my request. I wanted to make sure she was taking care of herself too.
I took hydrocodone that night, in hopes of sound sleep, and I slept a little better until the early hours of the morning. I woke up with a scary sensation of phlegm in my lungs. Normally a simple cough would get it right out, but the coughing was painful and risked tearing the incision. I called in my nurse and he suggested we walk some. Before I could even get out of bed my body made the painful choice for me and I hacked it up while cradling my belly. I walked some with him, every step feeling better, and helping to relieve the gases in my stomach.
The following morning, Friday the 12th, two days after surgery, I was coming around. I don’t even like grits, but let me tell you, they were tasting pretty good by then. I was nervous about the catheter removal but was assured it was not too bad. It was removed and it was a strange sensation, but not painful. I took some Tylenol to help with the general discomfort, but the pain remained manageable. This would be the last day I took anything for pain. I began walking the halls under supervision with more confidence, and the nurses noticed. With a cut of the scissors, my “Fall Risk” bracelet was removed and I was given permission to roam the halls on my own. My uncle would come “pick me up” or I would swing by his room to “ pick him up” and we began making our rounds together. He was still outpacing me, but I was gaining.
My living donor coordinator stopped by to check up on me. I thanked her for sharing her experience with morphine with me and how my recovery had improved so drastically when I stopped taking it and lost the nauseousness. She then surprised me by bringing in the entire transplant team from the hospital and they presented me with a plaque and lots of kind words. My uncle, his wife, and my mom were all there and it was an emotional moment indeed.
I ate more for dinner, but much less than my normal self. I began to pass gas which was a good sign, and my attention began to focus on my next big task, a bowel movement. For a person that is very regular like myself, I have never had to even think about this. It had been 3 days since I had pooped. My stomach was just so bloated and full feeling I could hardly eat. I took stool softener pills and drank lots of juice but it was not happening.
The nurses told me I would be going home the next day, and my uncle was on pace to go home the following day. We were both ecstatic. The daily tests were showing excellent kidney function for him and his urine output was proving it.
I spent Friday night pacing the halls, finding comfort and relief in walking and trying to get my bowels moving. They wouldn’t budge. I woke up early Saturday the 13th in anticipation of going home. My mom came back up to the hospital to take me home. We began gathering my belongings. It was then I began to realize just how unrealistic my expectations of this recovery were. The well thought out backpack I had packed full of what I thought would be useful supplies had not even been opened. I had packed like I was going out of town for a few nights. This was no vacation.
I went by my uncle’s room to check on him before I left. He had gotten his daily labs back and they were not good. They showed a slight increase in his creatinine level, which could be a sign of what everyone feared the most, kidney rejection.
The first few days had gone near flawless and this news took a lot of wind out of our sails. Everything we had worked so hard for would be lost if his body rejected the kidney. I had felt so excited to leave and go home but now felt like I was abandoning him. I knew his team of doctors were incredible, and they would do everything they could. They ordered an emergency biopsy of the kidney to determine exactly what was going on and hoped to have results by Monday.
I got home around noon and cannot tell you how amazing it was to feel the sun on my face and smell spring in full bloom in my neighborhood. My buddy who had been watching my dog brought him over and life seemed to be getting back to normal, except for pooping. I sipped on a new bottle of magnesium citrate that just a few short days ago I had forced myself to consume for my bowel cleanse. This time I wanted it to work to its fullest!
My appetite was slowly returning and I wolfed down some leftover pizza for dinner. I slept on the couch and in bed some that night. The next morning, Sunday the 14th, my neighbors offered to take me to a regular spot of ours for breakfast. I ate my favorite waffle and had my first cup of coffee, and that did the trick! My bowels were moving at last!
I felt good and walked around the block that morning. I rested the afternoon, went to my neighbors for a hamburger that night, and took another stroll around the block. I wanted to be at the hospital the next day for the biopsy results so I set my alarm and had my uncle’s wife pick me up on her way there.
I hung out at the hospital all morning Monday the 15th, only to find out the results were delayed and would not be available until the next day. We were all saddened by this news and continued fearing the worst since daily labs were not showing improvement. I went home mentally and physically wrecked. I had been warned not to overdo it, but I was just beginning to learn my new body. The two trips around the block the day before, along with no nap had left me exhausted. I slept all evening and well into the next morning.
Tuesday the 16th I vowed not to overdo anything and just rest. I soaked in the sun and felt my spirits and body rejuvenating. By that afternoon my uncle called and asked if I was sitting down. I feared the worst. I inquired about the biopsy results and he simply replied, “It’s all fine.” Never has such a weight been lifted with so few words. My emotions poured out as relief set in. The kidney was diagnosed with ATN, acute tubular necrosis. It more or less is just inflamed and not behaving as it should but will return to normal function within a couple weeks. The doctors were confident the kidney would fine, he could continue his recovery from home, and he would be leaving soon.
I slept even better yet that night and woke up Wednesday, April 17th, just one week after donating a kidney feeling stronger still. My pre-surgery six-pack abs are gone, hiding under a strange swollen stomach. My weight has slipped to 163 lbs, and I walk like an old man. I can feel my insides rolling around when I move, and there is still noticeable discomfort at times. I can already tell it is going to take many more days and weeks and maybe even months before I feel as good as my old self, but my uncle came home today, and he has a new life, and that makes it all worth it!
This was my first surgery, and hopefully my last, but if by some miracle I sprouted a new healthy kidney where my old one was removed, I would give it away again, without hesitation, just with a little different planning!