Kidney Disease Isn’t a Death Sentence

 

One of our first “dates” was McDonald’s to go. I brought it to her while she was receiving hemodialysis in the Davita clinic. Goodness, what an eye-opening experience that was. We chatted for awhile. My thought was if I could help pass the time in a mundane, clinical setting, then that’s what I’ll do.

I wondered: What the heck does this machine do? 

It was obvious I had a lot to learn. And trust me, I’m still learning. When I met my wife, Kim, she told me right away that she was in a struggle for her life. She didn’t tell me this in a dramatic way. Not in a “poor me” way, either. Nope. I learned right away not to pity her. She doesn’t like that.

“Poor me” gets you nowhere when you’re faced with end stage renal disease. What does help is education, a tremendous support system, and world class medical care.

Kim has had three kidney transplants. One is difficult. A second is certainly uncommon. A third is very rare. Late in the summer of 2016, things began to turn for the worse. A fourth kidney transplant? Now, that’s a whole new territory. So what is a 40-year-old wife, mother and step-mother to do when you get the news that you, once again, need a life-saving kidney transplant?

You cry. You sit quietly in disbelief. You cry some more. “I was devastated,” Kim said. Before getting the official doctor’s diagnosis, Kim knew things weren’t good. She had been sick for weeks and she’d felt this way before. She had missed a ton of work at her job at Blue Cross Blue Shield.

“I knew on the drive from Quincy to St. Louis I was rejecting (the third transplanted kidney),” she said. Her doctors at Barnes-Jewish Hospital in St. Louis confirmed the gut feeling. Reality began to sink in once again. “I struggle with the dialysis. Mentally it is draining. When I’m on dialysis my self-esteem is really, really low. I can’t stand the ‘you don’t look like you feel good’ comments,” Kim said. “I knew getting a fourth transplant was going to be difficult.”

“Normal” for Kim is being sick. It’s all she has known. Born eight weeks premature, Kim was always sick and struggled to put on weight. No one knew what diagnosis was coming, but Kim’s mother always knew things weren’t right. “She was just always sick,” Bonnie Jansen says. A Quincy doctor detected protein in the urine — a definite red flag. A visit with Quincy nephrologist Dr. Dan Evans led to scheduling an appointment with University of Missouri Hospital in Columbia, MO. Doctors there confirmed what had begun to be suspected: Kim’s kidneys were failing. She was just nine years old.

The technical diagnosis was Focal Glomerulosclerosis. The kidneys wouldn’t fail overnight. It’s a gradual thing. In fact, Kim was able to live a relatively normal childhood before the disease began to really take its toll. By age 16, however, dialysis treatments were needed. It was during this time that an act of selflessness was being discussed by Kim’s older brother, Kurt Jansen. Testing began and Kurt decided he would like to donate one of his kidneys to his sister. While Kurt was just a three antigen match (out of six) doctors at the time believed he was a good match to donate.

TRANSPLANT #1:

Transplant surgery took place in Columbia in May of 1993. Unfortunately, the new kidney was never a good match. By fall of 1994, the transplanted kidney became nephrotic and an infection developed. Without a living donor in place this time, it was time to get put on the transplant list. This would be done through Barnes-Jewish Hospital in St. Louis.

TRANSPLANT #2:

If you know Kim, you know she sometimes does things in a unique way. Getting a kidney transplant would be no exception. In 1996, Kim was driving back to Quincy after visiting a friend in Kansas. Being on the transplant list over 20 years ago meant always carrying a pager with you at all times. Keep in mind cell phones hadn’t taken over the world yet. So driving down the highway with the T-tops off and music blaring, Kim couldn’t hear the pager going off multiple times. There was a kidney waiting for her in St. Louis and time is of the essence in these situations. But wind and 90’s rock music were standing in the way.

What’s a parent to do in this helpless situation? “I called the police,” said Kim’s mother, Bonnie. Her decision paid off. Once told of the situation, Missouri State Police sent out an all points bulletin — usually reserved for criminals. When an unmarked police car spotted Kim’s car east of Palmyra, MO, Kim wouldn’t stop at first. This was during the craze of reports of people impersonating cops. “I was scared to death,” Kim laughed. It wasn’t until a marked car caught up to her that Kim stopped.

“The first thing he asked was if I had my pager on”, Kim said. It was then she realized things were about to get dramatically different in her life. With no time to waste, police secured her car in a nearby convenience store parking lot, put her in the police car and drove with lights and sirens on all the way to Barnes Hospital in St. Louis. “I remember looking down and we were going 110 MPH,” Kim said. “That freaked me out a little bit.”

The second transplant fared much, much better. It was from a deceased donor. This was an individual that made a decision to help save someone’s life upon the end of theirs. Such a simple but enormously important decision.

While never 100% physically, it was during this time post-Transplant #2 that Kim began living a somewhat “normal” life. “My quality of life was much better,” Kim said. She had two children, two boys now 18 and 15. Everyday struggles were real, though, and compounded by her illness. Relationships were hard. “People found reasons they’d want to be gone.”

By 2009, Kim was a single mom of two young boys, and was living with her mother. That’s when Transplant #2 began to show problems. While the kidney never technically rejected, it began to fail. Thirteen years for a transplanted kidney is a pretty significant period of usefulness. But its time was up. “It was explained to me like this: think of it as a battery and the juice ran out,” Kim said.

It was January of 2010 when I met Kim through a mutual friend. For me, one of the first things I noticed was her attitude about the illness. Early on she told me her illness doesn’t define her life. “I’m Kim. I don’t want to be just known as someone that’s sick all the time.”

Being new to this, I decided to try and gather as much knowledge about the illness as I could. I chose empathy over sympathy. I wanted to learn as much as I could about kidney disease and believe me, I’m still learning. I’ll never stop learning.

For this relationship to work, and more importantly for Kim to get better, we decided to tackle this together. That meant lifestyle changes and sacrifices. She needed to get back on the list for Transplant #3 before it was too late. Many dialysis treatments and doctors visits later, she was back on the list in 2011. For us, it was hurry up and wait.

TRANSPLANT #3

Growing up, Kim lived in the same subdivision with a family friend named Craig Beswick. Ironically, Craig had kidney failure as well and had received a transplant. He, too, found himself back on the list at the same time as Kim. In April of 2012, Kim received a phone call from Craig. He had just gotten the call and was on his way to St. Louis to get transplanted. “I was so happy for Craig,” Kim said. “I was a little jealous but thrilled he was getting the kidney.”

We went about our day and talked about Craig and his good fortune. We had discussed maybe going to visit him. Little did we know what was in store. About 15 minutes after Kim hung up the phone with Craig, her phone rang once again. This was a St. Louis phone number. A look of nervous confusion was over Kim’s face as she answered the phone. I could only hear her end of the conversation but it was quickly becoming apparent that it was Barnes Hospital on the phone. She mouthed to me “They have a kidney!” while still talking to them. I said “YOU!?” She had just hung up with her friend who was on his way to St. Louis. Was this real? What was happening? How could two friends in the same small town be receiving this call within minutes of each other, when the transplant waiting list is about 5 years?

When you get the call, the emotions begin to bounce all over the place. Joy, fear, sorrow for the deceased, guilt because you realize your joy has been created by the passing of a fellow human being. Name the emotion, you are feeling it at this time.

So, off to St. Louis we went. Kim was a direct admit and before you knew it we were on the 16th floor of Barnes-Jewish Hospital. The transplant would begin very soon. I waited nervously. This is obviously dangerous surgery but I was confident in the doctors. Hours later, the surgery was over. Initial reports were good. When I saw Kim post-surgery she was pretty out of it but was doing well.

The next day we learned truly amazing news. Her friend Craig had been transplanted and was doing well also. Here they were, childhood friends, in the same hospital, having had kidney transplant surgery on the same day. That alone is remarkable. Then we learned that Craig’s kidney and Kim’s kidney had come from the same, deceased donor. The same man. This man was an older gentleman, so the kidneys had some wear on them, but for now they were keeping childhood friends alive. No one had ever heard of that happening before.

Post-Transplant #3

Kim getting some fresh air outside Barnes-Jewish Hospital following her 3rd kidney transplant in April 2012.

For the first 3-4 years, this kidney performed very well for Kim. Her life began to have some “normalcy”. We got married. She worked extremely hard, earned her insurance license and began selling car insurance in Quincy. She later worked very hard to achieve the difficult challenge of getting hired on by Blue Cross Blue Shield in Quincy. These were things Kim always hoped to accomplish in life, but at times seemed unattainable.

“Many people thought I would never be able to get out on my own and lead a somewhat normal life,” Kim said.

Then this vicious cycle took its latest bad turn last fall. So here we are. Kim continued working as best she could but the illness is extremely draining physically and mentally. Blue Cross Blue Shield worked tremendously with her, but after exhausting all PTO and FMLA options, Kim had no choice but to leave her job. This was very difficult for her after working so hard to get to this point.

That sense of losing control is difficult. When parts of your life are lost or greatly altered it’s a feeling of succumbing to the disease. That is rough. “When I’m sick I feel guilty. I should be able to get up and take care of my kids, but I can’t,” Kim said. “I sometimes downplay in my head how sick I am.”

But don’t count her out. A fourth transplant could just be a phone call away or a potential living donor away. She hears what people say about kidney disease. The truth is, with transplants people like Kim can lead exceptional lives. “The myth is if you’re in kidney failure you’re going to die,” she said. “People live full, happy lives. It might be modified some but it’s not always a death sentence.”

Trust me when I say this isn’t easy. And when people ask me how things are going I usually say the same thing. “We take things day by day,” I tell them. While that could be considered a cliche, it’s really true. We enjoy the good days, and endure the bad ones. We just hope for more good than bad.

We just got back from Chicago. A whirlwind trip to visit with one of the world’s leading transplant doctors, Dr. Enrico Benedetti at UI Health. Yes, I said one of world’s leading transplant doctors. It was a bit overwhelming. But we were treated wonderfully and left feeling like things may be trending in Kim’s favor. On the long car ride home Kim and I discussed what’s next. What can we do? We decided we need to get her story out there. Hopefully one person reading this will be helped and know they aren’t alone, or hopefully we’ve educated one person about the importance of organ transplantation.

Kim at UIC

Kim waiting to be seen by the staff at UI Health in Chicago.

Kim hopes to mentor and help in any way she can. Her vast life experiences in dealing with kidney disease are invaluable. We’ve learned so much through this. Most importantly we’ve learned what a great support system we have. And for that all we can say is “thank you”.

 

 

 

 

 

 

 

 

 

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