Life is precious. I am so blessed to be alive.
This is a little bit about me that most people don’t know. I generally don’t tell people about my past struggles because, honestly, who wants to hear about anyone else’s problems. Don’t we all have enough of our own?
Well, yes, but I wanted to share this with you to let you in, to let you get to know me, to help you understand why I do what I do and why I’m so passionate about it.
This story really begins when I was 9 years old. I remember my dad was in Residency at a hospital in Iowa and we lived in the housing they provided. It was a tiny townhouse for the six of us, but we didn’t mind. We thought it was magical. There was a playground outside of our front door where we would hang out with the other neighbor kids and our backyard was massive with a forest just waiting to be explored. I’m sure it wasn’t easy for my parents, but for the 4 of us kids, it was a blast! I never complained, life was so happy and care free, why would I?
We went to church every Sunday. One day, we sat in the very front row – super close to the board declaring the hymn numbers. I literally couldn’t see it. I couldn’t read the huge numbers that were only 6 ft away. I turned to my mom and asked what page to turn to, she quietly told me.
A few weeks later, I couldn’t sleep. I couldn’t get comfortable and I was in so much pain. My back hurt more than I could stand. My eyesight and my pain had progressively gotten worse and it wasn’t going away. The next morning, I told my parents about it. They were shocked.
We went to a couple different doctors. Both of which declared that nothing was wrong with me. The third doctor they took me to checked my blood pressure. It was a jaw dropping 312/295 – I should have been dead. (A normal blood pressure is 120/80.) They whisked me away immediately and put me on all kinds of medicines. We found out that my kidneys weren’t functioning how they should be. They were irreversibly damaged. They were able to function, but not even close to full capacity.
My next stop was an eye doctor because even though my blood pressure had been regulated, my vision had not improved. I remember sitting in a cold, dark office with my mom. After I attempted to read the chart, the eye doctor told me that a lot of kids my age wanted glasses, apparently so badly that they pretended to have bad eyesight. He told me he thought I was lying so I could get glasses. Really? What 9 year old kid wants to wear glasses?! He dilated my eyes and left the room. I remember looking at my mom -she knew I wouldn’t lie- I ran over to her and gave her a big hug. The doctor returned, took one look in my eyes and gasped. He apologized profusely and told us that I was (and still am) nearly completely blind in my left eye. The massively high blood pressure put so much pressure on my eyes, it caused scarring and irreparable damage to occur.
For a couple of years, I was ok. I had to take blood pressure medicine daily, but that wasn’t so bad. We moved to Omaha, Nebraska, got a dog and life was good. When I was 11, we found out that my kidneys had taken about all they could handle. They called it quits and shut down. This was the first time we went to the Mayo Clinic in Rochester, MN. It’s an amazing place. The doctors and the care I received were (and still are) top notch. I have been to my share of hospitals and I can honestly say that nothing compares to the Mayo Clinic.
Your kidneys are vital organs. They help clean your blood. They remove waste from your body and remove excess water in the form of urine. Every day your kidneys clean about 200 quarts of blood and get rid of about 2 quarts of waste and excess water. If your kidneys don’t work, your body gets really toxic really fast. As toxins build up in your body, you feel gross and, if they’re not taken care of, you can die. That’s where dialysis comes in.
I started dialysis soon after this. I had to go to school, but since there were no pediatric dialysis places in Nebraska back then, we found a regular dialysis clinic that would take care of me. I had to go 3-4 times/week for 3-4 hours. I had a permanent dialysis catheter. Basically it was a big tube that came out of my chest with two little tubes attached. Dialysis is the process of removing your blood through one tube, sending it through the dialysis machine (which cleans your blood) and then sending the clean blood back into your body through a second tube. Because you’re relying on outside forces to clean up your inner toxicity, you have to be careful about what you put in your body. There is a very strict diet that must be adhered to when you’re on dialysis. I really had to watch my liquid intake. I could only consume 1 cup of liquid/day. I had to have low sodium, phosphorus, calcium, potassium and low protein. This meant that I had to measure everything out and weigh it. It was very calculated and I followed it to a t.
Most of the nurses were nice. I think I got spoiled because I was the only patient under the age of 50. I played board games, watched movies and took naps. Most of the time it went smoothly. Sometimes I would start to feel sick. This usually meant they were cleaning too much blood too quickly. I remember going to school (7th grade) with this tube in my chest. I knew I was so different from everyone else, and I was ok with that. I was sure to wear clothes that would cover it up and I had to be so careful to ensure that no one would bump it so it didn’t slip out of place.
While all this was happening, my parents were getting tested to see if they were a match. It is a very rigorous and painful process. Turns out, they were both matches! This rarely happens. They discussed it and they decided that my dad would donate his kidney to me. (I am so incredibly blessed to have such wonderful, loving parents!) We went back up to Mayo Clinic for my transplant. It went smoothly. They made a 10-inch incision in my abdomen (that’s where transplanted kidneys go). I had to stick around for 3 months after, just to make sure that the immunosuppressing anti-rejection medicines were the proper dosage and that everything was working how it was supposed to. My mom stayed with me and we lived at the Ronald McDonald house together. Before my transplant, I had no energy; afterwards I was bouncing off the walls! It was amazing!
The Ronald McDonald house is a charitable organization that allows families with sick children to stay close together. They let you stay mostly for free. It was a lifesaver for sure. This way we didn’t have to pay for a hotel for 3 months. It was clean and we had tons of support from those around us who were facing similar situations. I made a couple of really good friends there. People would come and go. Some kids got better, others passed on. There were many ups and downs in this community.
We went home after the 3 months and dealt with more than a few health hiccups, but everything worked out in the end.
The transplanted kidney from my dad was incredible for three amazing years.
My parents were off celebrating their anniversary in Hawaii. The four of us kids were left in the capable hands of a babysitter named Mary. (I remember this part of my story like it was yesterday.)
It was a Saturday. We were all going to help Mary with a party for her nephew at a pizza joint that was a 10 minute drive away – all of us, except my older brother, Josh. We arrived at the pizza place. I was standing one minute and as soon as I sat down, I felt a strong, intense, radiating pain coming from kidney. It felt like someone was stabbing me over and over and over. I knew something was disastrously wrong. I went into the restroom and tried calling my parents. There was no answer.
I don’t cry. I don’t like the way it makes my head hurt and my nose stuffy and I try to avoid it. And if I do, I don’t like people seeing me cry. I was 14 years old now; I secretly bawled my eyes out in the bathroom, got myself together and came out to the party. I told Mary that I wasn’t feeling well and asked if she would take me home. She told me to go lay out in the Suburban. I did that for a little while, but the pain just kept getting worse. I went back to the party and again asked if she would please take me home. She said she forgot balloons at her house and I could lie down when we got there.
I kept calling my parents, no answer. I was a shy kid and I rarely spoke up, but it was at this point where I really stressed to Mary that I needed to go home. Now. Like not in 5 minutes. Now. She obliged. She dropped me off a couple blocks away and insisted I walk for the remainder of my journey. With each step I took, it felt as if a searing blade was jamming into my abdomen. Tears were streaming down my face.
It felt like forever, but finally, I walked up the last steps to my door. My older brother (then 16 years old), Josh, was home. He saw me through the window and immediately came down and asked what was wrong. I told him nothing was wrong and I was fine. He said, “you never cry Lace, what’s wrong?” Again, I insisted that it was nothing and curled up in the fetal position on my bed. He tried calling my parents. No answer. Josh called a family friend who came over and he decided I needed to go to the hospital.
His wife, Linda drove me to the hospital. Josh told me he’d be there later. So, it was just the two of us. I didn’t know Linda well, but I knew she was nice and that was good enough for me at the time. The doctors got me into a room right away. They drew some blood, ran some tests, did an ultrasound on the kidney and an MRI to boot.
Josh showed up a couple hours later. He brought me a stuffed frog and some candy. It made my day. I let him eat the candy while I snuggled the frog. That meant the world to me. He was my cool older brother and I was just the little annoying sister. But at that moment, I felt cool too.
At that point, were just waiting for results. It was super boring. He left after a little while. The doctor came in after an hour or so and told me that I needed to go to the Children’s Hospital downtown, they were the ones who could help me.
Linda took me to my house, I packed a toothbrush, my new stuffed frog, a couple other things and then we headed to the Children’s Hospital. I was admitted right away. The nurse came in and was asking me question after question. I knew the answers to most of them, but I wanted my mom and dad.
Linda left after a while – she had kids to look after. So it was just me. I felt so alone. I was scared. I didn’t know what was going to happen. I was all alone.
A doctor entered my room. He laid it out for me.
“This hospital doesn’t have the proper resources to take care of you. You need to go to Mayo Clinic. We’re going to life flight you there. If you don’t get there in time, you will die.”
OK, thanks for the amazing bedside manner doc! To say I was freaked out would be an understatement. I knew I couldn’t do this alone. I said a prayer, “I can’t do this alone. I need help. I need my mom. I can’t do this alone. Please help me. Please help me feel comforted. Please help me to be ok.” The simple, honest prayer of a helpless scared child.
The paramedics rushed in and put me on a stretcher. They whisked me down to the ambulance. “Please help me, I can’t do this alone.” I silently pleaded. They shut one of the doors and were about to shut the other one when we heard a yell, “WAIT!” Who was that? “WAIT, STOP!” It was my mom!!!!! I was in complete unbelief! She made it! I didn’t even think she knew what was going on, let alone where I was!
I vaguely remember the ambulance ride, and the life flight to Mayo. I finally had my mom there so I didn’t have to be so alert. I settled into an exhausted slumber.
They did more tests when we landed. My team of Doctors told us that the artery that they attached to the kidney was too long. This artery had twisted around the kidney, cutting off the blood supply and causing it to die.
They gave us devastating news. I needed another transplant.
It was back to dialysis for me. During this time, I turned 15 years old. I was so excited to get my driver’s permit! I remember passing my tests with flying colors. I wore a shirt that was baggy enough that it wouldn’t show my dialysis tubes. They took my picture and handed me my permit. No questions asked. I was so excited!
Luckily, this time around went much faster than the last. My mom had already been tested and was a confirmed match. In November 2003, I got my 2nd kidney transplant.
We stayed at the Ronald McDonald house for the second time. This time was much different. My first transplant occurred in the summer. My second was in the winter. Let’s just say, I would never wish a Minnesota winter on my worst enemy.
I had an 11-inch gash in my abdomen that was healing; my mom had her kidney sucked out of her body lapriscopically. We were quite the sight to see! Every day we had checkups to make sure we were doing ok. Every morning, we went outside in the freezing cold, hunched over in an attempt to stave off the pain, trying to avoid slipping on ice, with the frigid winter wind whipping around us, and snowflakes that felt like daggers hitting us in the face as we tried desperately to reach the car.
There have been more than a few health complications since then. But, it’s coming up on 11 years since my second transplant. I’m happy to report that my little kidney bean is doing well. I haven’t been admitted to the hospital for over 2 years! That is a huge feat for me.
Health is everything to me. I take 21 pills every day just to stay alive. My anti-rejection medications lower my immune system. Because of this I have to be very careful to avoid situations where sick people are involved. I get sick very easily and when I do get sick, it lasts longer than it does for normal people and there’s a much higher chance that serious complications may arise.
Needless to say, life is precious. It’s a gift. To be healthy is to truly live. I am so happy and grateful to be alive! I love helping others find their health and happiness. Are you ready for the next step? Are you ready to feel healthy and radiate happiness?