On November 9th, 2011, I donated a kidney to a friend. As the days following the surgery progress, I found myself forgetting some of the details of my experience and decided to record them here both as a reminder to myself and, hopefully, as a resource to anyone who is considering being a living kidney donor. I have written elsewhere about my decision to donate a kidney, and even shot some videos with the my pastor at my church in Richmond. This post will deal with the few days leading up to the donation and a few weeks after. It is long and I probably left a lot out. But, I hope it is helpful.
The Monday before my surgery I went in to the hospital for some final blood work and to meet with the transplant team. By this point, being poked, prodded, and peeing in things is second nature, so much of it was just more-of-the-same.
Driving into the appointment I remembered that my wife and I had not finished reading and filling out the medical directive and power of attorney paper work. So, on our way in she read aloud all the fun medical paperwork that boils down to “if everything goes wrong, what do you want us to do?” Thankfully my wife and I were already on the same page with this stuff, so we chatted about it, made a joke or two to lighten the mood, and then signed the docs when we go to the hospital.
At the hospital I started with blood work and the I met with my nurse who covered a lot of the logistical details of the surgery day. There wasn’t much new information, but it was a great opportunity to confirm we understood each step of the surgery day and how it would unfold. I had my wife with me for this and if you’re a potential donor, I highly recommend that you bring whoever will be your main help on the day of the surgery. Also, bring a list of all your final questions. We brought a list of questions, many just logistical, and it was a big help.
In the meeting with my surgeon I was reminded of the severity of the endeavor I was undertaking. I’ll note that I always found it reassuring and helpful that my surgeon consistently reminded me that I didn’t need this surgery and that, unlike the recipient, this surgery was ultimately harming me. He, as a surgeon, took this very seriously. I didn’t “need” to have this done. The gravity with which he communicated was greatly appreciated. The last thing I wanted to hear from my surgeon was “Relax, this is a piece of cake. No big deal.”
After meeting with my nurse and surgeon we met with a nurse from anesthesia. Sadly, their department was having computer issues and we had to wait for over an hour to be seen. Once in, the nurse was obviously rushed and frazzled by the technological glitch and resulting backlog of upset patients. Despite this, she walked us through the process, listened to our concerns (like the fact that anesthesia made me really nauseous last time I had it), and answered our questions.
Following this we headed over to the pharmacy to pick up the special soap for washing the night before the surgery and… wait for it… the “bowel prep” drink.
The Countdown Clock
Despite the fact that the recipient was allowed to eat the day before the surgery, I was told to fast the entire 24 hours before the surgery. It was a “clear liquid” diet only. Thankfully, coffee is considered a clear liquid.
About half way through the day I was instructed to drink my “bowel prep” medication. I’ll be honest, I was terrified of what this might do to me. Visions of sprinting to the bathroom and making it “just in time”… or not, had me all kinds of nervous. Top it off with the the nurse warning me how horrible this 16oz drink was going to taste, and I was not looking forward to it.
Thankfully the drink just tasted like a fizzy sweet-tart and the impact it had on me was no where near what I had feared. While it surely did the job of cleaning me out, it was far less dramatic than I imagined.
As the day wound down and I prepared for bed, I followed the nurses instructions and washed with some magical soap that was supposed to kill anything living on my. After that, it was off to bed.
Rise and Shine
I guess I should say that leading up to the surgery, I had never been the least bit nervous. When I woke up on surgery day, it was no different. Perhaps there was a little excitement, but mostly it was a “normal” morning. Of course, I was on a no liquid and no food diet that morning, so by this point I was a little week, but nothing too bad.
My wife, infant son, and I were picked up by the recipient’s parents and we headed into the hospital. It was an enjoyable (early) morning.
We arrived at the hospital and made it to the surgery center where the recipient, his wife, brother, and sister-in-law were all in the waiting room. We signed in, took one last trip to the bathroom, and circled up with everyone for a moment of pray. We then followed the medical staff back the pre-op. Halfway down the hall we dropped the entourage off at a special waiting room, as only one person is allowed back in pre-op with you. At this point I gave Ryan a hand shake (maybe a hug?) and said something like “see ya in a little bit.”
In the pre-op area I donned my beautiful hospital robe and climbed into the gurney. We then spent about an hour and a half being visited by various nurses and anesthesiologists. I got a few shots and hooked up to an IV. Along with that I was given some compression socks to help prevent blood clots.
During the pre-op I was asked the same questions over and over again each time a new person came in the room. I could see how some people would get annoyed with this, but I like that hospitals are careful to make sure you’re the right person and everyone is on the same page. It is also fun to answer the question, “In your own words, what are we doing to you today?” My standard answer was, “Cutting me open, taking out a kidney, and putting it my friend.” Some nurses liked it, other less so.
Laying there waiting was interesting. My wife and I held hands and chatted about normal stuff. I cracked a joke or two to lighten the mood. Eventually, it was go time. I looked my wife in the eyes, told her a loved her very much, and off I went.
A Long Strange Nap
The ride back to surgery was weird. The hospital was doing construction at the time and the hallways leading to the surgery room had lots of yellow tape, unfinished wall, and “stuff” everywhere. In my exaggerated memory, it was like something out of a bad horror movie. In reality, it was just a ride down a hall.
We entered the surgery room and I couldn’t help but think about how strange this all was. I was about to hop onto a bed, take a nap, and have a major organ cut out of me. However, at this point, I was still really relaxed about the whole thing. I was confident that God has brought me safe the far and He would care for me and the recipient through the surgery.
My surgeon greeted me and filled me in that they were, in fact, going to take my left kidney (it hadn’t been officially decided at the time of our last meeting). He handed me a piece of paper to sign off on the left kidney and I hopped (er, scooted) onto the operating table. Of course, at this point, everything gets hazy as the drugs started to flow. The last thing I remember is the mask. The put it over my mouth and nose and said, take some deep breaths… and like that… nap time.
Hit by a Mac Truck
Coming out of anesthesia, I realized very quickly that I had grossly underestimated the amount of pain I’d be in post-surgery. Sure, I thought it would hurt a bit… but I simply wasn’t prepared for the pain. Now, if you’re a person thinking about donating a kidney, don’t let this scare you. When it comes to pain, every person is different. I have a pretty high pain tolerance. So, the pain (on my pain scale) wasn’t that bad. I simply didn’t think it would be what it was. I guess the only thing I can say is that it is major surgery and you’ll be in pain afterwards. You’ll have meds, and they will help you. But, if you think you’re going to be chilling out in your bed, watching the game, and laughing with family after your surgery (which may or may-not have been what I thought) don’t plan on it. You’ll be hitting the blue button (for your morphine drip) a lot that first day. I did.
Drugs, Drugs, Hiccup, DRUGS!
The first 24 hours after surgery I took a lot of drugs. I was given a button to hold that controlled my pain med. After every 7 minutes I was allowed to push the button and it would release morphine to ease the pain (and usually put me to sleep). So, most of the first day involved me waking up for a few minutes, realizing that I was in a bit of pain, hitting the blue button, and going back to sleep. Between my “naps” I would try and talk to family in the room and nurses that came to check on me. Fun drug-induced conversations will undoubtedly ensue, like, “How do I use this catheter? I feel like I need to pee, but how does this work?”… blue button.
The majority of the pain I remember is the fact that anything requiring abdominal movement just hurts. So, the more still you can be, the better. Everything, like changing your position in the bed, will remind you that you have been cut open. But, for me, the kicker was hiccups.
While I have no idea if this is normal (I never asked) I got the hiccups 3 times in the first 24 hours. As you know, hiccups are a pretty abdominally involved experience. For some reason, whenever I tried to eat the ice chips they gave me, I got the hiccups. It was HORRIBLE. Hands down, some of the worst pain I’ve ever had. If I was a gambling man, I’d bet I got a taste of childbirth with every hiccup I experienced. Whenever they came on, I simply hit the morphine button, tried to relax, and wait for sleep to come one excruciating hiccup at a time.
That said, I do remember having one hiccup attack when the recipient’s parents were in the room. I could tell that they felt bad that I was experiencing so much pain. I don’t remember what they said, but I clearly remember thinking and saying, “this is a small price to pay.” And it was.
As a living donor you are going to feel pain. The first couple weeks of recovery can be tough. But come on! Why are you doing this in the first place!?!? This isn’t a Hawaiian vacation you signed up for! You’re here to help save someone’s life. Then pain and challenges that you face are for a reason and, I’m not kidding, your pain and discomfort are a small price to pay. So hiccup and press the blue button, your recipient is getting a chance at a new life.
Is it itchy in here?
As I mentioned, I grossly underestimated the pain I’d be in after the surgery. In fact, I had planned to have my wife and mom head home in the evening so I could rest. However, as bedtime approached (indicated by my fussy baby son) my wife and mom realized that leaving me alone was not a good idea. Among other things, I had the tendency to stop breathing when I went to sleep. Apparently this alarmed them both. I remember simply saying that it was because I was so relaxed.
Finally the decision was made that my mom would stay with me over night. Note for potential donors: go ahead and plan for someone to stay the night with you. You’ll need them!
After my wife headed on, I spent the night dosing in and out of sleep. However, as the night progresses, I became increasingly itchy. It was the strangest thing. I can’t remember if it was the morphine or the anesthesia that they said caused it, but apparently it is a common reaction. Thankfully, my mom (who gave me back scratches my entire life) stepped up to the challenge and scratched my head and arms throughout the night. Along the way I also remember my mom getting them to change my drug from morphine to something else. I guess if you say, “He keeps stopping breathing” enough, they’ll eventually try and fix that.
Day 2, Let’s Go for a Walk
It was still “technically” less than 24 hours since my surgery, but it was a new day. And, it was apparently time for me to get to work. Post operation the doctors want you up and moving ASAP. If you’re a potential donor, there is plenty of info on why they want you up and about asap.
So, my kind nurse brought me my walker, grabbed my IV drip, and SLOWLY helped me get into a vertical position. Again, anything that take abdominal muscles will not feel good, but once you’re up, it is smooth sailing.
I slowly shuffled a loop around “the block” and even stopped by my recipient’s room to say hi. Note here, two doped up dudes talking about their surgery has got to be funny to watch for sure.
Over the next couple days I took more and more walks around the unit. Get up and walk… What else was I going to do?
The Tube in Your Penis
Yup… No way around this one fellas. Thank GOD when they put your catheter in the first time, you’re totally knocked out. However, it still needs to come out. I will say that compared to all the other pain I experienced as a kidney donor, catheter removal isn’t that bad. Just don’t watch. Close your eyes and just let the nurse do his/her thing. It will feel REALLY strange… and then it is done. Super quick, don’t even worry about it.
Once the catheter is out, it is up to you to do all the peeing, and my nurse was really clear about that. See, I was still hooked up to an IV, so fluids were coming in and it was up to me to get them out. Quickly I realized that it was time to make some room in the bladder and I headed off to the can. However, after dragging all my gear into the bathroom something happened. EVERY time I started to pee, my entire body seized up and stopped the natural flow of business. Every. Stinking. Time. It was ridiculous. I simply could not get myself to pee like I needed to.
The nurse came in after an hour or so to see if I had peed and how much (you pee into a container so they can track it). She was not happy with my efforts. She explained the amount of fluids going into my body and the amount I had sent out and that the math was not in my favor. She encourage me to keep trying and she ordered an ultrasound to check my bladder.
I continued my efforts for another 45 minutes with better progress, but as the ultrasound showed, it was all for not. I had a LOT of pee in me and my body was not going to let it go. Then came some of the worst words I have ever heard… “We need to put the catheter back in.”
The Second Tube in Your Penis
Yeah. There is nothing I can say to explain how much hearing that news sucked. Unlike the first time I had this done, I was going to be fully awake for this one. There was absolutely nothing I could do. I was getting a catheter.
I do want to pause here and thank my nurse. As much as this SUCKED for me, there is no doubt in my mind that it sucked for her too. No way she woke up that morning thinking, “Man, sure hoop I get to shove a rubber tube up a dude’s junk while he writhes in excruciating pain… that’s a lot of fun.” Hell no! No one involved in that process is having fun.
So, I took a deep breath, reminded myself that “this is a small price to pay” and we went at it. Let me say, this was the most painful thing I have ever experienced, hands down. Pure and utter pain. The real bitch in it all? She couldn’t get the catheter to engage! After drilling the pipeline all the way to the bladder, the catheter wouldn’t “hook” into place and after what felt like 3 days, but was probably closer to 2 minutes, she abandoned ship and pulled the catheter out. We were ALL traumatized at that point and I have no doubt that she went home after that shift and had a couple shots of tequila to shake off that experience.
After the failed attempt we all agreed to take a break and reevaluate in an hour (after the shift change). Apparently, either due to the terror of doing that again or the “drilling of the water way”, I was actually able to pee a lot in that hour. My next ultrasound showed that I was getting rid of my pee at an acceptable rate and… deep breath… no catheter needed.
Say Nope to Dope
After the catheter incident I continued my regimen of short walks, resting, and trying not to cough, laugh, hiccup, or do anything that required my abdomen. So long as I wasn’t moving, the pain really wasn’t that bad. Within the first day or two I was off the hard drugs and moved to the pain pills.
Prior to the surgery, I had planned in advance to get off the pain pills as soon as possible. I was willing to deal with a little discomfort in order to not get used to taking pain pills all day. I know my weaknesses and I was honestly a little afraid that if I was on the pain meds too long that I’d want to extend my usage, potentially longer than I needed. So, I cut them out asap. Over the course of a week or so, I used them on occasion as needed, but (essentially) after 3 days I was completely off pain meds.
You Aint Gotta Go Home, But You Can’t Stay Here.
The third full day after my surgery I was doing pretty well. My appetite was starting to come back a little (I don’t think I ate very much at all for my whole stay) and I was doing pretty good with my walking, so after meeting with my medical team, I was cleared for discharge.
It was a surreal experience to be rolled out of my room and out to the car. I kept thinking, “they just took an organ out of me and now I’m heading home 3 days later… there’s just nothing normal this.” Of course, everything was fine. I gingerly got into the car, said a prayer that we hit no bumps in the road on the way home, took a deep breath, and told my wife to take us home.
Thankfully, the ride was very uneventful. Easy and no pain.
Wake, Nap, Wake, Nap, Wake, Nap
Getting home, I took a big nap on the first couch I could find. It was good to be home, but I was beat.
I slept on the couch for about the first week. I found that the couch was a great place to sleep because the back and armrest gave me props to use whenever I needed to move. Rolling, sitting up, or doing any movement was still difficult, and the couch seemed to be much more easy to use than the bed.
My first few days we’re all about the same. I’d wake up at about 4 or 5 in the morning, unable to get back to sleep. I’d lay on the couch until I could find the energy to get up. Slowly I’d squirm out of the couch. Remembering my doctors orders to walk as much as possible, I’d usually do 20 or so laps around the downstairs of the house. I’d also fill my water jug to make sure I drinking lots of water.
My family wakes up around 6 or 7, so they’d come down and have breakfast and I’d join them from the couch. I will say that it wasn’t until about the 4th or 5th day home that I actually wanted a cup of coffee (I typically drink it every day).
About 10 AM I’d take a nap for an hour or two. After the nap the family would eat lunch and I’d, again, try to build my appetite back up.
I’d hang out on the couch, taking the occasional walk around the downstairs till dinner. I’d take a nap in the afternoon and then have dinner on the couch. I’d usually be able to stay up until 9 ot 10 and then go to bed.
Bloated and Bubbly
As I mentioned previously, post surgery my stomach was bloated. The strange part was that every time I rolled over I could hear and feel all the air roll around inside. It wasn’t painful, but it was a bit uncomfortable and just weird. This was the norm for the first several weeks.
Not Eating Small
During the day time I usually had smaller meals, but at dinner time I often wanted to really eat. I quickly found out that eating too much was a very bad idea. I’d often eat and shortly after dinner I’d have increased discomfort in my abdomen. For donors, after surgery, ease back into eating bigger meal.
Tickel In My Throat… Are You Kidding!?!?
Let me be clear, despite being off the pain meds, there were still moments of intense pain. Laughing, hiccuping, sneezing, or coughing were intensely painful. That said, it is best to not watch anything remotely funny on TV and to tell your family to keep jokes to an absolute minimum. One thing though that you can’t control is body functions like coughing.
It was the second day home when I first felt the tickle in my throat. You know the kind. The one that you feel in your throat and you think, “I just need one good through clearing or cough to get rid of this.” The only problem is that doing that will cause your stomach to feel like a 12 inch needle is being stabbed into it. I was terrified.
I managed to attempt some very small windy coughs, which hurt. But, I soon realized this tickle wasn’t going down without a fight… I had to cough… twice.
Thinking the worst was over, I rolled on. Sadly, over the next week the tickle returned 3 or 4 more times. Each time it was as painful as the last. Coughing (like hiccups) after surgery sucks. Avoid it at all costs.
Week #2 Begins
Week two was more of the same. I was feeling a little better and would take some time to catch up on work emails and the like. As usual, I was trying to walk around the house as much as possible, drink lots of water, and rest.
This week I took three big steps. The first was leaving the house. My mother and father in law had taken our two oldest kids out to sight see around Seattle. My wife and I decided to live on the edge and drive down the street to have a lunch date. I put on “real clothes” for the first time since the surgery and gingerly walked out to the car. Much like the ride home from the hospital I was nervous. Mostly I was afraid of sudden turns or stops that would lock the seat belt down on my stomach. Thankfully it was all good and we were able to have a nice lunch.
The second big step was going outside for a walk. Up until this point all my walking was doing laps around the inside of the house. For the second time I put on “real clothes” and my wife and I took a stroll up and down the street in front of the house. I ‘m sure it was humorous to watch as we were walking quite slowly and just went up and down the block like 20 times. It was nice to get some sun, fresh air, and probably the most exercise I’d had in weeks.
The final big step of this week was that I was able to chuckle. Not laugh mind you. But I was able to find a way to chuckle when something funny was said that didn’t shoot pain through my abdmonen. So, that was nice.
While it was a good week in general, the lame part was catching a cold towards the end of it. Thankfully it was just a head cold (nothing that involved sneezing or coughing), but it did ruin some travel plans we had for our second to last day in Seattle.
Post Op Visit. Time for Goodbye. Time to Fly.
After 20 days in Seattle it was finally time for my post-op visit to see if I was good to go home. The regular blood and pee tests were conducted and the highlight was running into my recipient. It was great to see him, but at the same time it was hard. For as rough a time as I had, the recipient end of the deal is dramatically more difficult. His spirits were good, but it was a clear reminder that his road to recovery was significantly longer and harder than mine.
My meeting with the nurses and surgeons were pretty uneventful. We talked, they asked questions, had a quick physical examination, and that was about it. I was clear to go home.
Now, prior to going out to Seattle we had decided that we’d catch the red-eye for the flight back east. We were traveling with a 6 year old, 5 year old, and a 5 month old. Knowing that I wasn’t going to be much help on the flight, we thought that at best the kids would sleep and maybe my wife could even get some rest. We simply thought trying to fly during the day when kids might be restless and I couldn’t help hold the infant just wasn’t going to work.
So, we headed “home” to pack up and get ready to go home.
That evening we had a very special dinner where my recipient, his wife, his parents, and some other family came over. It was a very special cap to an amazing few weeks.
After dinner we headed off to the airport and caught our flight. Thankfully, everyone got to sleep on the plane… except me. But, I was ok with that. I knew that once we got home I could nap all I wanted, but my wife would have to take care of me, the kids, and the house… so, I was happy everyone else got some sleep.
Home at Last
When we got home it was perfect timing as it was the week of thanksgiving. That allowed me to have some extra time off from work, which was good because I wasn’t ready to get back. However, by the end of the third week I was ready to head back to the office. While I couldn’t do any lifting, I totally felt up for getting back to work.
Back to Work
90% of my job is at a desk, so that was easy. The hard part was the 10% that requires lifting and lots of movement. Thankfully my coworkers didn’t give me too much crap, as it was UTTERLY frustrating to keep having people tell me I coudln’t lift stuff.
6 Weeks to 80%
I’d say that it took me about 6 weeks to get back to the realm of normal. By this point I was able to do most everything I could do pre-surgery and my body started feeling more or less normal. The majority of the pain and discomfort was gone and I was able to lift most things in the 30-40 pound range (aka, my kids).
Milestones over these six weeks were things like driving by myself, holding my kids, eating full meals, not having bubbles in my stomach, and being able to sit up without massive effort.
10 Weeks to 95%
I’d say that it took about 10 weeks before I got back to “real” normal. At that point I could do just about everything I could do before surgery. There were a few times I’d do something and think, “nope, not quire ready to do that” but in all life was the same as it was pre-surgery.
Parting insight, advice, or whatever.
Well, you either sat through that whole post or you just skipped to the end. Either way, I hope something in my post was helpful. While there is so much more that I could write (and probably forgot to write) I’ll leave you with this:
It is worth it. Hands down, 100%. It is worth it.
This point has hit me two very specific times since the surgery. The first time was about a month after when my recipient sent me a text letting me know his creatinine levels were down to 1.4. It was a huge deal to let that number sink in. Prior to surgery his levels were at like 13 something, which is essentially kidney failure. It was the first time that it really hit me that this worked.
The second time it really hit me was about 3-4 months after the surgery. My recipient sent me a message to let me know that his levels were down to 1.2, he was back to work, he had resumed his deacon role at his church, and he and his wife were talking about becoming foster parents. The penny dropped. My recipient was able to have a normal life. No more dialysis. No more feeling tired all the time. The kidney transplant was giving him exactly what we had hoped. A more normal life.
At those two moments I was crystal clear to me that it was worth it and I’d do it all over again.
Wouldn’t feel entirely right here if I dind’t say a few thanks. First, I thank the God who saw fit to send me and my family to WA for a few years so that we could meet my recipient. Thanks to the awesome folks at University of Washington, especially Kami, Paige, and Dr. Baktha. Thanks for my recipients parents who moved out of their house for almost a month and braved crazy cats and drooly dogs so that we could occupy their house. Thanks to my mom and mother & father in law who were more help that we ever knew we would need. Thanks to the people of Redemption Hill for loving and praying for me and my family. Thanks for my friends and co-laborers who not only covered for me at work, but were my true brothers through this.
Finally, thanks to my wife and kids who walked through this entire process from the very first day. Together we prayed for our recipient for over a year. It was an honor to be a part of God’s “yes” with you. I love you.
Post ’em in the comments and I’ll try to answer. Lots I didn’t cover above, but would love to help if I can.