Jon & Emmalee Day Family: Kidney Transplant

In the later part of 2022, we learned that Jon's older brother Matt was in End Stage Kidney Failure from Polycystic Kidney Disease. Early 2023 began the search and multiple rounds of testing for a viable living donor. In August we learned that Jon was the last viable living donor. On September 19th, 2023 Jon underwent surgery in Dallas, Texas for the removal and donation of his left kidney for his brother Matt.

It was a crazy and emotional process from for all involved but, through all of it, Jon never wavered that-despite his hesitations, worries, fears, etc.- letting his brother suffer when he had the ability to help was not an option. I've always known I married a pretty good guy, but watching him go through this deepened my love and respect for him even more. I am so incredibly proud of his selfless sacrifice!

From the beginning we knew that it was a good likelihood Jon would be the donor and that this would be no small thing. Still, we went ahead with each round of testing- just taking the next step and trying not to think too far ahead on all of this. Being in the position to be a potential living organ donor is an interesting one full of lots of different emotions. We wanted Matt to get the help he needed and knew we wouldn't back out if it ended up being Jon that needed to do it. At the same time, surgery is big and intimidating and scary and we would be lying if we said we didn't hope someone else would be a better match. But that's not how things worked out. Pretty quickly it came down to Jon and his brother Mike being the only two remaining options. They both went through the first several rounds of tests and eventually Mike was ruled out for a couple of tests that came back abnormal. That left Jon. Even after it was only Jon left, the reality of it still took awhile to kick in.

For Jon, it kicked in for him when he flew down to Dallas a month before the surgery for his last round of testing. He flew down by himself for a long day of all sorts of tests including a CT scan with contrast dye (which he hated) and the whole thing really settled on him and he started getting a bit freaked out by it all and wished he'd had me go down there with him. The results of those tests came back a week later and we got the call that the hospital had approved Jon as a donor and the surgery date was set- Sept. 19th. For me, it didn't set in until the day of pre-op appointments and surgery day, Monday and Tuesday- Sept 18-19. But I'll come back to that...

We left to drive down to Texas on Saturday the 16th- late afternoon after Katie's 10U softball tournament. I was helping coach her team and they did really well this year and made it almost to the championship game so we got a late start heading on our way to Texas. Jon's brother and mom, Mark and Janice, drove to Ankeny to watch our kids while we were gone and Jon and I headed on our way about 5pm and drove as far as Kansas City the first night. The next day we finished our drive to Dallas. We had a nice drive to Texas and tried out listening to some true crime podcasts which actually ended up being a little depressing, go figure, haha. We stayed in a hotel Sunday night and Monday morning early we met up with Matt at Dallas Medical City for all of our pre-op appointments! Jon tested negative for Covid which was actually kind of surprising because he got one of the worst colds he's had in years the week before the surgery and was still coughing a decent amount at this point.

The most enlightening appointment was the meeting with the surgeon who went over exactly how everything was going to go and showed us diagrams of everything he was going to do and what all of the potential risks were. This is where things started getting real for me. The surgeon- Dr. Cha- explained that, left kidneys are more risky to remove than right kidneys because they have more attachments to other things in the body but that right kidneys are really hard to attach to a recipient because the vein attachment is much shorter on the right and it makes it very difficult to sew it in. Jon's left kidney was higher than normal- he said this occurs in about 20% of the population- so the risks were slightly higher. The left kidney is attached to the adrenal gland and right next to the pancreas and intestines. Dr. Cha explained that the risk was still low but if they accidentally nicked or burned any of those things it could cause damage, internal bleeding, or other problems. But, he said, they were going to go slow and take their time to make sure that didn't happen. (Dr. Cha and Matt's surgeon Dr. Malloy worked together on both surgeries going back and forth from room to room during the most difficult parts to make sure they had no errors.) He estimated Jon's surgery would take about 2-2.5 hrs, but from start to finish from when they took him back to put him under anesthesia until he was out of recovery it would be about 4 hours. Matt's surgery would start first (opposite of normal) because they were removing both of Matt's native kidneys before the transplant (rare) because they were so bad, and then Jon's surgery would start once Matt's was underway and they'd made good progress. He also explained to us all of the restrictions after surgery and the risks if we didn't follow those directions. Jon shouldn't drive for at least 2 week because of the pain killers and also just the pain which would slow his reaction time to traffic. He shouldn't have any ibuprofen or other NSAIDS for the rest of his life. He needed to forevermore watch his protein intake. He can't exercise for the next 2 months. No lifting more that a milk jug for 2 months. Jon had one chance to let his incisions heal correctly and if he tried to cut corners or do too much too soon, he would create gaps in the fascia which would grow larger over time and cause hernias and other problems and they would never be able to repair back to 100%. They were going to make 3 incisions- one small one by his rib case to pump gas into the abdomen during surgery, one small one just below that to insert the laparoscopic tools for the surgery, and a 3-4" incision just above his belly button for the surgeon to literally stick his hand in and pull the kidney out.

While it was good to get a better picture of what we were dealing with, this all really started to freak me out and it hit me- "They are cutting a perfectly healthy part of Jon out that has been keeping him alive for 38 years and now he's just not going to have it anymore?? I really don't know if I like this. Obviously I want to help Matt, but I wanted Jon to be ok too!

After all of the pre-ops we met up with Matt, Ceri, and Levi for lunch and then headed to Matt & Ceri's house for the night. We had some good conversations about this whole thing and what is was going to mean going forward.

Tuesday morning, Sept. 19th, Matt had to be at the hospital at 6am and we had to be there at 7am. So, we woke up early and Jon and I got there and checked in at 7. We spent a lot of time waiting in 2 different waiting areas while they got Matt all ready and his surgery going. They checked Jon's vitals and took one more blood sample (like the millionth during this whole process). The waiting was pretty hard. Jon's anxiety was high and I was just focused on trying to distract him and keep him calm. The anesthesiologist came and talked to us- as well as Dr. Cha briefly. He said there was a slight delay getting in Matt's central line so Jon's surgery- which was supposed to start at 9, would be closer to 9:30. It wasn't until closer to 9:45 that they came and got him, I gave him a kiss goodbye, and they wheeled him off!

I went and found Ceri in the waiting room. We had both signed up for text updates on the surgery so I asked Ceri about what she'd heard and she said all she'd gotten was that they'd started the surgery. Jon had sweet-talked the hotel people from our Sunday night stay to let me come exercise there during his surgery so I was wanting to go do that early on so I could get back to the hospital to wait, but I didn't want to leave until I got the text that they'd started the surgery. I waited half an hour but still no text so I left and went to the hotel. It wasn't until I'd already started running on the treadmill at 10:38 that I got a text they'd started the surgery. I saw the text come through and a big surge of emotion bubbled up and I almost had to stop for a minute because I needed to catch my breath. It was real. He was on the operating table. They were cutting him open. I hated that feeling. I knew I just needed to have faith and keep distracting myself so I focused on the show on my ipad and kept running. I got another update 30 minutes later "The patient is still in surgery" while still running and had the same emotional response. It's funny because I think the updates are supposed to reassure people but it seemed to have the opposite effect on me- forcing me to picture my husband in surgery and freaking me out.

After I finished my run I got dressed at the hotel and headed back to the waiting room at the hospital where, again, I met up with Ceri and we decided to go get lunch 2 floor down. They had a couple restaurants and we opted for asian food. We sat down there and ate and chatted for over an hour. I was starting to wonder what was taking so long. I kept getting texts that Jon was still in surgery but it had been over 3 hours, higher than the original surgery estimate. Then at about 1:50pm, I got a call from Dr. Cha that Jon's surgery had gone well, they hadn't touched or damaged anything else, and that he was heading to recovery. I wanted to go and chat with Dr. Cha- he'd come to the waiting room to chat but I was downstairs still, but he said he needed to go because they were "literally sewing the kidney into the recipient (Matt) as we speak". It was a huge relief to hear that all had gone well with Jon and I headed back up to the waiting room thinking I'd get to go see him soon. It ended up being 2 hours before they finally called saying they were getting ready to move him out of recovery to a room where I could go meet him. Ceri got a call around the same time saying Matt's surgery was done and had gone well and they were moving him to the same area of the hospital as Jon in about an hour (but one floor up because he'd be in ICU. So Ceri and I decided to just walk over together (it's a huge hospital) and wait in Jon's room until she could go see Matt.

We waited in Jon's room about 25 minutes before they wheeled him in around 4:45- 7 hours since I'd seen him last (a lot more than 4!). He was a bit out of it and obviously in pain. He wanted to know what had happened, why it was so late, what was going on, etc. The breathing tube had left his throat really sore so it hurt him to talk and he was getting frustrated with the nurses who kept being a tad impatient and not letting him finish he sentences whenever he tried to say or ask something. Ceri left soon after to go meet Matt in the ICU and I stayed with Jon.

Tuesday night was pretty rough with Jon feeling pretty groggy, in pain, sleepy, and miserable. He was only allowed clear liquids but he wasn't really hungry anyway. I stayed the night in the hospital with him on a small hard recliner in a cramped space and honestly I'll count it as a miracle that I got some sleep and didn't wake up with back problems. We thought we'd go home (to Matt's) Wednesday afternoon but Jon ended up having a lot of ups and downs with pain, weakness, and nausea so we decided to stay another night at the hospital. We did get up to the 7th floor to visit Matt Wednesday though, which was good for both of them. Wednesday night was also rough. Jon wasn't sleeping well and the local anesthetic they'd injected into the incisions was wearing off, causing more pain. On top of that, the nurses were not the best and kept getting Jon's meds to him late so he'd have bouts of pain building and building without relief as well as nausea without the anti-nausea medication. It was mostly this that made us say Thursday morning, get us out of here as soon as possible because we wanted to be in charge of our own pain meds to keep Jon from having all the dips and delays. We visited with Matt again Thursday before leaving and then around 11:30 we left the hospital and headed to Matt's house.

With Jon not being allowed to drive (and obviously in pain/recovering) I had to drive and I gotta say, driving around Dallas- NOT MY FAVORITE!

Once we got back to Matt's house and were able to start administering our own meds Jon started to even out more. I dragged a recliner from upstairs with automatic functions into the bedroom where we were staying for Jon to help him out. Since then it's been a steady (but slow) climb uphill. Jon is gradually able to do a little more for himself but still has bouts of pain and weakness. Thankfully we've been able to keep the nausea at bay at least being on top of our own medications. He's slowly getting his appetite and energy back, but I emphasize "slowly". We went for a walk Thursday night but only made it 4 houses down the street before he felt exhausted and we had to turn around. The walk back took 3 times as long and he had to hold on to me the whole way. But we're getting there. Jon's cold that he went into surgery with has been an additional pain. The surgery in and of itself causes fluid to build up in the lungs that they need you to try and cough out post-surgery and that plus his cold has meant a lot of coughing. As you can imagine, coughing a bunch when your stomach has been cut open is pretty painful. So each time he has a coughing fit its a bit of an ordeal. Still, I think that is getting a little better every day. One step at a time and we're closer to the normal in the future.

It's been pretty amazing to see how quickly Matt is recovering and how well the new kidney is doing for him! Only hours after surgery the kidney was already producing huge amounts of urine and filtering out a lot of his blood. Pre-surgery his kidney function was only 7% but by day 3 with the new kidney was already at 50% and climbing. Both of his diseased kidneys were like 7-10 lbs each and causing his belly to be super distended and post-surgery his belly was noticeably flatter. He has an 18 inch incision down his middle because they had to make it that big to get his giant inflamed kidneys out. Still, each day he is doing better and better each day and telling us how grateful he is and how life-changing this will be for him in so many ways. We really are grateful that we were able to give him this gift!

The doctors told us that the reason everything took longer than expected during surgery Tuesday Is #1 getting Matt's bad kidneys out was really complicated and a lot harder than they expected and #2 they took their time being super careful on Jon so as not to damage anything else, which I'm super grateful for!

It's still a long road to recovery for both Jon and Matt- Matt even more so- but I know this was the right choice and am choosing to have faith that this will continue to be a positive thing for both of them. It's weird thinking about the details and reality of what has happened to Jon's body, but it's really a miracle that doctors are able to do this surgery. Jon went from 100% kidney function to 50% in one surgery and they said it'll take him about a year for the other kidney to compensate and get back up to 70-80%, which will be his max from here on out. Matt on the other hand went from 7% and falling to 50% in 2 days and continues to climb. I'm looking forward to a year from now to see where they are both at at that point! It will be exciting to see them both back on their feet and living healthy lives!

Pre-op Day, Monday- Sept. 18th

Lunch- pre-op day

Day of Surgery

About to be wheeled back

Waiting room

Right after surgery

The incisions- right after surgery

Facetime- Matt & Jon Tuesday night (day of surgery)

Matt & Ceri

Wednesday morning, up and moving

First Visit- Wednesday afternoon

Kidney shaped pillows from the nurses. They just gave Matt
one but I joked that Jon needed one to compensate for the
one he lost so they got him one too. :)