Dear Tanya,
When I was first diagnosed it was very difficult to absorb. I was only 8 years old. That day, my mom took me to the pediatrician due to an extreme headache. Who knew that day would change my life forever! I still remember sitting in his office while he took my blood pressure, telling my mom he needed to get a different machine…he thinks this one is broken. Then, he had a horrifying look on his face. I will always remember the look on my mom’s face as he told her to call my dad and get me to the hospital right away.
With all the hustle and bustle, this was one of the scariest moments of my life. As my parents rushed me to the hospital, I remember sitting in the front seat as my mom clenched onto me tight, crying. Once we arrived at the hospital, it was even scarier. They had an entire medical team waiting for my arrival! They started hooking me up to monitors and poking me with needles. At eight years old, that was not something that I had experienced before. As I stayed in the hospital for the next 7 days, my mom stayed right by my side, sleeping in the chair next to me. My dad also spent hours at the hospital. When my biopsy results came back, my parents looked at me with fear in their eyes like no other. They had the fear of the unknown and possibly the fear of losing their baby girl. At this time, I learned I would need a kidney transplant someday. This was scary because you just didn’t hear of kidney transplants back then.
I was one of the rare people in the US diagnosed with IgA nephropathy. Many of my friends didn’t understand my restrictions and being so little, school was very hard. I was held back in second grade due to missing so much school and, all the friends I made were moving on without me.
My body was going through a lot of changes and mentally, I was changing as well. If I could tell you anything at that time, it would be that you will be okay. Yes, you are different, but you are wonderfully and beautifully made by God. I would tell myself that it would get easier, but I would also have been lying to myself. Kids can be mean! I was always picked on in school for being so small. Because of my dietary restrictions, I always had a hard time gaining weight. This added to my mental strain. Not until after high school did I stop worrying about what people said about me.
Then, I ran into a new challenge that I would never wish upon my worst enemy. In July of 2004, Darrell and I found out I was pregnant with our first child. Oh man, this brings up all sorts of emotions! I was going to a high-risk OBGYN and I wish I would have known to ask more questions around IgA nephropathy and how it would affect my pregnancy. On Oct 8th of 2004, I was 5 months pregnant with our son Christian. I had gone to lunch with my parents. I was experiencing contractions since early that morning. I called the doctor, and they told me it was probably Braxton Hicks and if things got worse, I should go to the ER. The contractions did not get worse, however, they did not stop either. So, my parents drove me home and when I stood up to get out of the car, my water broke. I was only 20 years old, so I was not sure what was happening to me. My mom and dad rushed me to the hospital and Darrell met us there. I don’t remember much about the next couple of days - I was very sick, but eventually my contractions stopped. On the third day, they had to induce me and I delivered our stillborn son. Why didn’t I just go to the hospital when my contractions started? This is the biggest regret I have in life. I would tell myself now to just go to the hospital! Maybe they could have saved my son.
Fast forward to February 2005. We are a newly wedded couple with many challenges that we had already faced and will continue to face in our first year. This time, I find out that I only have 13% kidney function and need to have a kidney transplant. I had many questions at such an overwhelming time in my life, but I will make it through. The last 18 years have just flown by. If I could go back, I would say be your own advocate for your health. This is so important! Make sure you are eating nutritious foods and drinking plenty of water. Do not waste a moment, they go by so fast, and you cannot get them back! Make many beautiful memories with your loved ones. No matter how little or small you think it is, it is still a memory you will look back on one day. Live every day like it’s your last! Laugh hard and love even harder!
Tanya
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