Vincent's Story

Here's a little background. My 26yr old daughter has "IgA nephropathy" (nuh-FROP-uh-thee), which according to the Mayo Clinic is also known as Berger's Disease and is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in your kidneys. This results in local inflammation that, over time, may hamper your kidneys' ability to filter wastes from your blood. There is no family history, no environmental factors that can be pointed to, and no lifestyle factors.

In high school, she was diagnosed with high blood pressure and because (at the time) she was overweight and smoked, the Dr. pointed to those as the contributing factors to the high BP. As it turns out, it was the beginning stages of nephropathy. Five years ago, Morgan (my daughter) had a serious bout with pneumonia which left her hospitalized and they also diagnosed the nephropathy. Her kidney function slowly deteriorated until May 2016 when I got the gut wrenching phone call, "Dad, I need a kidney transplant."

To say I sprang into action is an understatement. The 1st place we contacted was Johns Hopkins, the obvious choice. The testing and typing of a living donor takes a while and I found that you have to be your own advocate. The donor team can't talk to the recipient team (and vice versa) even when it's the same family. And the pace was so much, much slower than I wanted — but it's very precise. I was matched as a donor for Morgan and was asked if we'd be willing to enter into the Paired Kidney Exchange. When it was explained that it A.) could result in a better/closer in age match, which would last longer (transplanted kidneys have a shelf-life) and B.) we could have a part in saving someone else's life, it wasn't a hard decision. As I look back, this has been an amazing journey in a very, very short period of time. My daughter's surgery was on December 22nd - less than 7 months after the diagnosis. The kidney came from a living donor in California. The Donor’s surgery was the night of December 21st and then the kidney was put on the red-eye to Dulles and driven to Baltimore. There was a bit of a scare when the flight was delayed for FIVE hours (if you need a kidney — don't fly United!) but everything else went off without a hitch. Her recovery has been amazing. Morgan was on 2 different deceased donor transplant lists (MD/DC & DE/PA) and her husband said it was so cool to call the coordinator and say "remove Morgan's name, move someone up the list".Here’s the most amazing part... every time someone gets a kidney from a living donor it removes them from the deceased donor list. So, in essence the person who gave my daughter a kidney saved 2 lives. My daughter and whoever the person is who takes her place on the list.

Since I was the IOU — my surgery would normally be scheduled within two weeks of the recipient (Morgan) but [and here’s where the amazing God directed journey is so apparent] I was told during my pre-op that I was no longer healthy enough to donate. I had gained 1.5 stone in weight. Doesn’t sound like much until you do the conversion… 21 pounds! In addition to the weight, my blood pressure had increased to the point of requiring medication and glucose levels were in the high range.

I remember the ‘punch in the guy feeling’, knowing that someone somewhere in the United States was going to get a phone call and be told that they were NOT getting the lifesaving organ they were promised. Because of my behavior, I had impacted someone else in a way I can still not comprehend. I immediately knew what I had done on this destructive path. It was a combination of two things. First I had started “doing the wrong thing” by snacking. Just a little in the beginning (maybe a dessert here and there) and then every night. I convinced myself it was ‘healthy’ (organic popcorn with Himalayan salt) but it was every night and to excess. The second thing I’d done was “stop doing the right thing”. I’d slowly stopped going to the gym. Always telling myself that I’ll get back there tomorrow or I’d run 5 miles on Sunday since I’d missed running 3 on Saturday. I never followed through with either.

I’d also found that I’d changed other priorities. Besides not going to the gym first thing in the morning, I also didn’t spend time in the Word. I was falling behind in my Bible plan (also telling myself I’ll get back there tomorrow). No question there was a pattern!

Back to the wake-up call. I reached out to God, a nutritionist, and a trainer (in that order). By changing my priorities after being reminded how I was impacting others, I was able to reconnect with God. He is patient and welcomed me back. In 2 months from being told I couldn’t do what I had committed to I was able to lose 25lbs, lower my blood pressure, and glucose and most importantly get healthy enough to donate my kidney. On March 21st I gave my kidney to someone in Minnesota and have been told it’s performing like it should. That person was also able to remove themselves from the deceased donor list.

This experience has shown me the power of God when I follow his guidance and the foolishness of myself when I try to do it alone.