Ken DeSieghardt, photo by Craig Campbell
We celebrate and give thanks for the dates we wed our spouses and when our children enter the world. God gave me another date to be eternally grateful for: June 8, 2019.
This date starts when I first showed up a few decades ago. I was born with a genetic condition called Alpha-1 Antitrypsin Protein Deficiency. Alpha-1 is produced in the liver and feeds the lungs to help them recover from respiratory illnesses. Being deficient in Alpha-1 can mean that the lungs end up permanently losing some function every time you have the flu, pneumonia or other respiratory-based illnesses.
Some people who are deficient in Alpha-1 develop no symptoms. They are simply carriers of the condition. I was not so fortunate.
Beginning in 2017, my lung function began deteriorating rather rapidly. I no longer got just the flu; it would always turn into pneumonia. I missed family vacations, had short hospital stays and struggled to keep working – though fortunately I have worked from home since 2001, so my hours were flexible.
Last year, I worked a full day and then sat down with my daughter to watch some sports. By that date, my lung function was so low that we had two portable oxygen concentrators – one on each level of our house – and long enough tubing on each one so that I only had to be off a machine for about 15 seconds as I moved from one to the other.
My wife came down to help me up the stairs and I said I needed to use the restroom first. But instead of making my way to the restroom, I opened the door to the laundry room instead.
Perplexed by where I was and why I was there, I gazed over at my wife. She gave me a choice – she could call 911 or she could take me to the hospital. I chose the latter.
At Shawnee Mission Medical Center, they diagnosed me as suffering from acute respiratory failure. I was intubated and sedated. At least that’s what I’ve been told. From the time we got to the hospital and for the next two months or so, I have no memory of what took place. The CO2 level in my blood was so high, that I was hallucinating and dealing with a lot of confusion.
The next day, I was taken by ambulance to Barnes Jewish Hospital in St. Louis, who had placed me on the list for a lung transplant on December 20, 2018. I don’t remember the ride.
I don’t remember any meals (for three months, I had a feeding tube, but I continued to lose weight). I don’t remember any therapy I received. I don’t remember when I was able to be taken off of oxygen. Most of all, I don’t remember most of the hallucinations.
My wife has told me several of them, some funny and some frightening. One of the funny ones was when I wrote a note to a nurse (I had a tracheotomy and couldn’t speak above a whisper) asking, “Am I in Costco right now?”
Once I was stabilized, the hallucinations began to fade and I became more depressed. The only thing that lifted my spirits were the regular deliveries of cards and notes from home – and the sense that a lot of people were lifting me up in prayer from our Knox family. Being four hours away from home meant that visitors were limited, making the long, repetitive days of waiting even harder to take.
The lowest point came on June 1, when I had to watch my oldest daughter graduate from college via an online link. At that point, I told God that I was starting to wonder if His plan was for me to get new lungs or not.
June 7 was just another day in the hospital until about 7:30 p.m. My main physician in St. Louis walked in, still in a dress shirt and tie – which seemed odd at that time of the evening – and he said, “We think we’ve found a match.”
My wife and I completely lost it. I don’t remember much of what he said after that, except that surgery would be the next morning, if they were right and it was a match.
June 8, I was lung transplant No. 1,741 at Barnes-Jewish. We have all been blessed by God, and our donors, with this amazing gift. I know little about my donor, except that he was in his mid-20s and that he gave five people the gift of life through his donations.
I learned later my doctor initially told my wife that there was only a 5% chance of finding a match, because of all the antibodies in my blood. I previously heard that I would be a “hard match,” but never had heard that 5% number. Upon reflection, that is probably a good thing.
I almost gave up, which would mean I would just be waiting to die. My lung function on June 7 was 8%, so I assumed it wouldn’t be much longer. But, I waited and held out hope, buoyed by a card coming at just the right moment and the feeling of prayers enveloping me. If you don’t think prayer makes a difference…I am still here, blessed with the lungs I needed.
Now, I can look forward to life events and family gatherings, because ours is the God of 5% chances!