One year ago today (Feb 8, 2019), I was in the hospital donating a kidney to my sister. It was one heck of an experience but of course 100% worth it to help her regain a (mostly) normal life. I had meant to write about it then but different things put it off so here we are a year later already. Here’s how all this came about, how it felt, and the recovery. I’m hoping this will provide some insight for others who are considering such a donation.

Background

My sister has had IGF Kidney necropathy for several years. Her kidneys have been slowly declining and along with it her strength, energy, and overall health. To this day we don’t know exactly what caused it, but we’ve known that at some point she would need a kidney transplant and/or dialysis. Dialysis patients don’t tend to do quite as well as transplants so we wanted to keep her from having to go down the dialysis route if at all possible.

Once your kidney function drops to a certain level you go on “the list” to receive a donor kidney. Depending on your priority level a person can be on the list for months to years, waiting for that lifesaving donation. However, if you have people willing to be tested then once that kidney function drops, and not before, they can start the test process.

While my sister’s nephrologist was at Johns Hopkins, the actual transplant occurred at University of Maryland. Other hospitals may have a different process but this is what we experienced.

Testing

This started with the expected questionnaires and forms – many candidates are weeded out just from this process alone before any tests occur. The transplant team’s first priority in finding a donor is that removing the kidney will not cause undue harm to the donor. Basically, if you are unhealthy, have kidney issues already, or other risk factors you will not be considered a valid candidate.

The transplant team’s first priority in finding a donor is that removing the kidney will not cause undue harm to the donor.


Transplant Team

This is a team of doctors, nurses, and patient coordinators that work together for the health of the donor and recipient. The surgeons review test results as a team and determine a donor candidate’s health and suitability for donation. In my case, several tests

Once I got through the paperwork I was able to start the test process and was assigned a donor coordinator. This was my contact person, and my sister had her own coordinator as well.

Blood Work
The tests started with blood work – around 14 vials one time! They check every aspect of your health. There were several stages of bloodwork so it wasn’t just one visit.

Kidney Volume
Then we went to kidney volume tests – basically 2 days of peeing in a container. Fortunately I was able to work from home during that period – carrying urine around at work didn’t seem ideal! Unfortunately my numbers came back lower than they would like. When my coordinator first took it to the team they rejected me as a possibility. I knew I hadn’t been hydrating well and was able to convince them to let me do the test again. They also knew I was on a higher protein diet at the time and they could see that in the tests. After the second tests they were willing to accept me as a donor.

Bladder Ultrasound
Of course, that meant even more tests! I did a bladder ultrasound – basically checking to see how the ducts work and watching the kidneys produce urine, dumping it into the bladder. You have to drink a large volume of water prior to the test to make sure your kidneys are processing, then they do the ultrasound. They can actually see where kidneys connect!

Contrast Scan
We went on to a contrast scan of the kidneys. Fortunately my team warned me about the “pee feeling”. What happens is you get an IV put in and they run a special flood into your veins. When it reaches your kidneys you actually feel a warm rush as if you had peed yourself! Then they do the scan while the contrast is in the kidneys, helping them to get a better look at the insides of the organs. In my case they found a stone in the left side, but that wasn’t enough to stop the process.

Social Work
Amidst all of these tests they also had me meet with a social worker. She asked me about my feelings on the subject of donating, what I thought I’d feel like after, how I thought my life might change. She asked about why I was donating and offered counsel before and after the actual donation.

Night before with clothes laid out. Surgery isn’t ideal but we try to make it fun!

Surgery & Hospital Stay

The day of the surgery we went in early, and, I assume because we were siblings, were given a preop room together. I have to say I was thankful for that. All of our family were able to be there in one place and it did help ease the nerves.

We had the requisite meetings with the surgeons and anesthesiologist, spent some time talking to family and friends who dropped by, said a family prayer, and went off to surgery at about 9 am.

Day 1 (Surgery Day) – Thursday
I first woke up around 2 pm and was interacting by 4. We actually have a short video of me at 2 pm, which I’ll include in the video once I finish putting that together. I was definitely hurting and I had a catheter in. My throat hurt from the breathing tube and everything – my whole torso – felt odd and weird and shifted. Eww.

Wheeeee… off we go

They put me in a special donor recovery room. The hospital has two of these and they are special extra large, extra fancy rooms. It’s still a hospital room of course, but it is designed to feel a bit less sterile and provides ample room for guests.

Breathing was an issue the first few days. I definitely had a lot of fluid when I fully expanded my lungs. They give you a spirometer to use regularly and this helped quite a bit. Basically you breathe through a tube connected to the device and get a little ball to stay in the right place. It helps you open your lungs up again. Unfortunately it also meant a lot of coughing and spitting up really gross stuff, but it helped.

Sister Status and Doctor Comments
As early as Thursday my sister (in an adjoining room) and I were texting back and forth – “How are you?” “I hurt.” “How are you?” “Same.” But it wasn’t long before Erika told me she wasn’t feeling nauseous – for the first time in months!

Meanwhile, the doctor was thrilled at how the surgery had gone. They took the left one (the one with the stone in it – haha) and he said it was an enormous kidney. It was so big and powerful they said it started to work as soon as it was connected, and the quote they kept using was “It was like putting a jet engine in a Cessna.”

It was like putting a jet engine in a Cessna

Day 2 – Friday – Pain
I don’t remember much of day 2. This is where we had a problem. Somehow the nurses misunderstood what we told them about my previous use of pain medicines, which had been for a surgery the prior year. They somehow interpreted what we said as my having an addiction to painkillers! This led them to hold back on my pain meds the day after I donated a kidney.

I was out of the bed sitting up in a chair trying to stay relaxed, but the chair gave me something to squeeze as I was in so much pain. When the doctor came in that day he was gently horrified – meaning he got to fixing that quickly but he had such a good bedside manner it didn’t get more upsetting for me.

I know the catheter came out and I was able to go visit Erika next door, but the rest of the day is a blur. There were visitors and Jo never left my side, taking great care of me the whole time, and through this entire process.

Day 3 – Saturday
Still a blur, I was able to walk around and started thinking more clearly. My body felt odd, but it was time to go home. We didn’t get there until around 6pm, but Jo took great care of me.

Recovery

I was blessed to work somewhere that had special donation leave available. I set it up ahead of time and was able to take up to 8 weeks off work to recover. I ended up gently getting back to work around week 6, but I eased in.

Some of the key items for this recovery period included:

  • Don’t lift anything more than 10 lbs
  • No NSAID pain killers like ibuprofen (Advil) or naproxen (Aleve)
  • Lots of rest
  • No twisting or straining
  • Easily fatigued

The incision and your body in general are extremely sensitive during the initial recovery period and you really need to be careful with movement.

The other thing that surprised me was the level of fatigue I experienced. Walking across the room became a huge effort and it stayed that way a long time.

Days 4-7
These were tough days. There was more pain at home, but I was able to stay on the couch and Jo was right there helping me every second. I had more visitors which helped to pass the time. I thought I’d be able to write but I just wasn’t thinking clearly enough.

One thing that was frustrating was the bathroom:
1.) It was hard to tell when I had to go
2.) I was really blocked up; you can tell how happy I was from my post on “Poo Day”.

Oh Happy Day! (Day 6)

Other strange things – I kept feeling a weird “slosh” like a large amount of fluid was moving around in my torso. It also felt like my organs were moving around a lot which was strange and uncomfortable.

Thankfully I was able to get off the serious painkillers pretty quickly, but there was still a surprising amount of pain.

Days 7-14
By this time I was able to get up and about more easily. My organs and torso still felt odd and the incision continued to heal, but was still sensitive.

The weekend after I got out of the hospital we were able to (very carefully) attend a Christian comedian show that had been postponed from the prior year. After I insisted quite a bit, Jo agreed we could try going. With help (and some explanations to people) I was able to get around, and I used a small pillow to press on the incision site when I laughed. I was the only one in the room saying “Stop making me laugh!” We had a fantastic night.

Aside from that one event I rested a great deal and caught up on movies.

March
By mid-March I was working my way back in to the office. I started with a few days a week mostly from home and did more and more until I was back to regular work weeks.

April
Around April we did two things: we signed me up for a 4-month membership to start Tai Chi, and we got an elliptical. The elliptical was a wonderful way to get some exercise carefully and without walking around outside – if I got worn out I would just sit back down. And I did get worn out quickly.

Tai Chi, meanwhile was a huge surprise. While it is a slow, careful, balance and breathing-focused style, I felt a great deal of pain the several days following my first lesson. I had been so immobile that I was very tight, and my insides were all mixed up – I’m glad I started with this, though, as I believe it helped prepare my body for more work later.

May
May 5th was the 12 week mark, where I was finally allowed to lift more than 20 pounds. I started lifting very carefully. My focus at this point was to do very low weights and just a few reps. I wanted to do planks but quickly found that I wasn’t ready for that. I needed to build core strength but the incision site was still healing.

With my shoulder surgery I was able to get started much more quickly. It was interesting to see the impact difference. The shoulder was much more isolated and meant I could do a lot with the rest of my body. When they pulled out the kidney, though, it affected everything. I was much more easily fatigued, but I also couldn’t stabilize as well because core activation was both painful and uncomfortable (imagine the feeling of seams coming apart, but it is your actual tissue).

On the other hand, May is when we took a trip to Tennessee and visited Crossfit Mayhem! I guess I should be thankful we did the “Triple 3s” – 3000m row, 300 double-unders, 3 mile run – since it was all movements I could do, but boy was that tough just three months after a kidney donation!

I was also able to start getting back into some light jiu-jitsu, owing solely to the fact that I trusted my experienced mat partners. I wouldn’t have done this in a regular class where I might have to fight someone’s ego.

August
In August we went to the Crossfit Games where we participated in several classes and workouts), walked around Madison, WI, and generally had an amazing time. My strength wasn’t back to full here, but I was able to do anything I could do before the surgery, albeit lighter.

September
In September we ran a Savage Race – about 7 miles plus obstacles, and the next week I spent three days on the Appalachian Trail with a friend, and while my feet hurt (gotta figure out my boots), physically I felt great!

November
In late November I felt comfortable returning to Masada Tactical for krav maga. My energy is different but I’m hoping these very aggressive, combative classes will help me acclimate further to life with one kidney.

There’s a lot there, but you can see how the progression went. It was very slow at first and you really need to give your body time to heal. It will adjust to missing a kidney but it is a slow process. Once your remaining kidney has caught up and your wounds have healed, you can really start making progress towards recovery.

  • Classes at the CF Games
  • I really liked using the plate carrier.
  • Workouts at the Games
  • Yes, doing this still hurt.
  • Get a little strongman in
  • Workout end of summer
  • Savage Race
  • In Harper’s Ferry on the trail

And today? Specifically today? My sister and I celebrated by going rock climbing. Here’s to many more yearly celebrations.

How to celebrate a year? How about rock climbing?

Life Changes and Going Forward

There are some things that have stuck with me, even a year later, and of course some lifestyle changes that need to be made.

Energy – I don’t have quite the same level of energy I once had. It’s not bad, but it is noticeable.

Medications – You shouldn’t take NSAIDs like ibuprofen, aspirin, or naproxen sodium with only one kidney. This means Tylenol (acetaminophen) only for me.

Protein intake – I usually maintained a paleo diet which included a fair portion of proteins, as well as the occasional protein shake. Since excessive protein puts a strain on the kidneys, nutritional balance has to change quite a bit. Since I still want to avoid grains and carbs, I’m testing a keto diet.

Do I have to pee? – For some reason I still have to pee quite frequently and can’t always tell. It’s weird, but not a big deal.

So that’s my story. To anyone thinking of donating – I hope this helps you get a better idea of what it can be like and how it will impact you.

– Matt Miller

Resources for Donors

University of Maryland – Living Donor Kidney Transplant

National Kidney Foundation – What to Expect After Donation

American Kidney Fund – Kidney Donation

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