Orbit Nerd

On Tuesday, January 10th at around 8:30 pm EST, the NOTAM system (a.k.a. Notice to Air Missions) went down. This system apparently notifies pilots and air traffic controllers of late-breaking alerts that would be too slow through normal communications channels. While the FAA resorted to a phone backup system overnight, it wasn’t able to keep up with daytime air traffic. Eventually the FAA decided to ground all flights into or out of the US on the morning of January 11th. Over 10,000 flights were delayed and over 1,300 hundred flights were canceled. One of those canceled flights was very important to two people, myself and my nephew. But this wasn’t because we missed a vacation or an important business meeting. It meant that the FAA NOTAM groundings caused the cancelation of our paired kidney transplant surgery.

Note: This post deals with a stressful medical event in my nephew’s life. I’ve made every effort to remove identifying details about him in order to protect his privacy. He’s already dealing with enough stress as it is, talking about this could make it even worse for him…even if it is just to receive well wishes from family and friends.

Why I Could Not Possibly Donate a Kidney

Let me back up a bit. My nephew is in end stage renal disease (ESRD), meaning that his kidneys don’t function at all and that he has to be in dialysis three days a week. I contemplated donating a kidney a year and a half ago when I heard that he was going on dialysis, but I decided I wouldn’t be able to do it since I’m squeamish about medical procedures. I’m serious, I usually have to beg out of conversations when they turn to people’s medical procedures. I even had a panic attack while reading the kidney donor information packet. I also told myself that my years of slightly elevated blood pressure would eliminate me as a donor candidate. There were so many reasons (whether justified or not) that I couldn’t donate my kidney.

Seeing my Nephew and How it Change my Mind

Then, my nephew visited a city nearby for a kidney awareness charity event and my family and I got to see him in person for the first time in years. We took him out to lunch and to a museum as a “low key” set of activities on one of his free days. There were a number of signs I noticed throughout the day which told me my nephew really wasn’t doing well.

The first thing I noticed when I saw him was that he appeared very bloated. I’m not mentioning this to be mean, but when you have ESRD your kidneys cannot process the waste produced by your body and a side effect is that you tend to retain water. At lunch, my nephew mentioned how hot it was in the restaurant. It was certainly a little warm, but I wouldn’t have called it hot. The clincher, however, occurred when we went to the museum. Even though we were taking a VERY leisurely pace my nephew had to sit down and rest every 5 to 10 minutes. We’re talking about a person who dusted me when we took a bike ride together just a year before the pandemic started. Now he could barely keep up at “old person with a walker pace” through the museum.

We were sitting in a blue-tiled room with a nautical theme when my nephew told me some things that I’ll never forget. Dialysis only cleans a fraction of the blood when compared to two functioning kidneys. It’s enough to live by, but not enough to live his previously active lifestyle. Dialysis itself is not a joke, you have to sit there for four hours while the machine cleans your blood. It is an exhausting procedure and all you want to do afterward is sleep.

Deciding to Become a Donor and the Donor Process

I had an epiphany in that room; I needed to see if there was anything I could do to help my nephew. The first thing was to get over my own mental roadblocks. The second was to see if my family was on board.

Both of these tasks were surprisingly easy. Spending the day with my nephew deeply affected both me and my family. Am I still scared of surgery and get the willies whenever someone talks about medical procedures? Sure, I’m still me after all. But all I have to do is think about his diminished quality of life and my resolve holds strong. My entire family had a similar reaction to the visit. They’ve been extremely supportive all along. They saw first-hand how poorly my nephew is doing and they know that this surgery will greatly enhance his life. Don’t get me wrong, they also have apprehensions about the surgery, but they agree that it is worth the risks. I wouldn’t have been able to do this without them.

Scheduling a Surgery

I’m not going to go into all the tests and visits that I had to go through in order to get approved as a kidney donor. Let’s just say I’ve had the most complete medical workup of my life, that I’m in excellent health, and leave it at that. We opted for a remote donation where my kidney would be removed locally and flown out to my nephew’s transplant center.

It took a while to go through this entire process and get a surgery date, but we finally had a date, January 11th, 2023. Knowing that weather could be an issue where we live (we are about an hour and a half from the hospital) my wife and I rented a hotel room across the street from the hospital to make sure traffic wouldn’t be an issue. Weather forecasts were all good, COVID tests all came back negative, and we were all ready to get this done!

The Big Let Down

Check-in at the hospital was at 5 AM. The hospital is huge and I got turned around a little on my way to the inpatient check-in location. However, I was there by 5:10 AM and they got me into the prep area almost immediately to take my vitals, give me an IV, and generally get me ready for surgery. They had just finished taking my blood pressure and pulse-ox when a nurse walked in and told us the surgery was canceled. We all just sat there in stunned silence looking at her. How could this be? She said that the surgeon would be calling shortly to tell us what was happening.

He called within a few minutes and told us that the president of the NKR (National Kidney Registry) had called him to recommend that they stop the surgery. Apparently, the FAA had grounded all flights in the US due to some technical glitch. It wouldn’t make sense to proceed without being able to guarantee that the kidney could get to my nephew. There was nothing left to do but pack up and go home. We found out later that the FAA grounded all flights due to the NOTAM outage.

What Now?

Obviously, we were all a bit devastated. Of course we knew that the surgery would be rescheduled, but how long would it take? Shortly after we arrived at home we received a call from my transplant coordinator. She expressed her condolences and told me that they were working to get the surgery rescheduled as soon as possible.

I’ve spoken to my nephew and he seems to be in good spirits. He’s kind of a genius about this, anticipating that something could throw a wrench in the works. I never fully understood why he didn’t want to let everyone know about his surgery date. Now I do understand; I can’t imagine the added stress he would be under if he was getting calls from a ton of well-meaning people to commiserate with him, asking him questions he doesn’t have the answers to.

We’re now in a holding pattern (excuse the pun) waiting for a new surgery date. We’re ready to go whenever they come up with a new plan. Hopefully it’s just a matter of days or weeks, but who knows? Let’s just hope that the NOTAM system stays up, the FAA doesn’t ground more flights, and no other unforeseen events prevent this surgery from proceeding.