How Cystic Fibrosis Saved My Life

There has been a blog floating around on the web called “How Cancer Saved My Life”. No, I haven’t read it. But I saw the title and immediately knew I needed to write a blog similar to share a little bit of my testimony. I decided not to read the other blog, because I didn’t want to copy it at all. I want my words to be influenced by God and my own experiences-not someone else’s. So, here is the story of how CF saved my life.

From previous blogs, you may have read about when I was diagnosed and what the doctors told my parents almost 20 years ago (March 1994). For those of you who are new readers and have yet to read any of my other posts, I’ll start from the beginning.

Side note: For my 18th birthday, my mom gave me a journal that she started just a month after I was born. She tried to write in it often, so I will recall a lot of my information from this journal, as well as from what I have been told over the years. 

When I was eleven months old, I was diagnosed with Cystic Fibrosis-a genetic lung disease. Basically, both my mom and my dad are carriers of the CF gene, but they didn’t know it at the time (1993 wasn’t a time where they had all of the medical advancements that they have today). So when I was born at 2:05 am on a Saturday morning, I looked like a normal, healthy (precious!) baby girl. However, around my 10th/11th month of life, I started going to daycare. Unfortunately, I was constantly sick while I was there. My parents had no idea that my immune system wasn’t as strong as the other little ones. Not too much longer, and I was (wrongly) diagnosed with asthma. February of 1994 was the first of many hospitalizations for me with a sinus infection and “asthma symptoms”. My mom also wrote that I continued to be sick and not feel well so I slept often (still do this today….) and they soon found out that I was allergic to Ceclor when I broke out in a big rash-all over my body. Again, soon after this, I was found to be allergic to Albuterol Sulfate (a common nebulizer treatment for asthmatics/CF patients) when I became blue around the mouth, lethargic, and was rushed to the hospital in an ambulance. Doctors assumed I was diabetic and wanted to run some tests on me. After testing, my mom went to see my primary doctor to let her know what had happened, and she was sure I was not diabetic. She suggested doing a sweat chloride test to rule out Cystic Fibrosis. This worried my mother, but my doctor assured her it was just a precaution. 

For those of you who are unaware of what a sweat chloride test is, the CF foundation explains what happens during a sweat test: 

“The sweat test measures the amount of chloride in the sweat. There are no needles involved in this test.

In the first part, a colorless, odorless chemical, that causes sweating, is put on a small area on an arm or leg. An electrode is then put over that spot. This lets the technician apply a weak electrical current to the area to cause sweating. A person may feel tingling in the area, or a feeling of warmth. This part of the test lasts about five minutes.

The second part of the test consists of cleaning the area and collecting the sweat on a piece of filter paper or gauze or in a plastic coil. Thirty minutes later, the collected sweat is sent to a hospital laboratory to measure how much chloride is in the sweat. People with CF have more chloride (salt) in their sweat than someone who does not have CF. Once a sweat test is done correctly and the result is positive, e.g. a high chloride level, it is always positive.” 

Once my first sweat test turned out to be positive, a second one was done just to be sure. Today, however, it is required that all newborns are tested for CF-praise God!

So. I was diagnosed in March 1994. “I can’t lose her. I can’t lose her.” is something my mom repeated that day. 

February 6, 1995 is a day that my mom wrote, “Today is the fourth day Jordan has been in Methodist Children’s Hospital. She has a severe sinus infection and has to have intravenous antibiotics, breathing treatments, and chest physical therapy (CPT). She has had a really rough time with the IV. It seems CF patients have bad veins and they are not fluid. Jordan has been stuck numerous times in both hands and arms and feet. It has been very traumatic. I am a detail-oriented person, but I will not go into details about this horrible hospital experience, except to say that after Friday night, I said ‘No more!'” Oddly enough, this has happened several times throughout my life as I have always had difficult veins that are hard, small, and “roll” when a needle tries to poke them. It’s always an awful experience and one that I have to mentally and physically prepare myself for. And would you believe how extremely RARE it is to find a good phlebotomist?! Some things never change. 

So that was basically my early childhood with CF. Sick all of the time, hospitalizations left and right, breathing treatments, pills….and heartache. I am amazed at how well my parents handled everything. They always kept their faith in God. As proof, almost every time my mom wrote in my journal, she mentioned how she had faith that God would heal me and that He is curing me. I am so blessed to have loving and godly parents who never gave up on me!

About age 5, my mom was introduced to some glyconutritional supplements. After three months of being on these products, my doctor told us that I had the lungs of a healthy child. No lung infections, no scarring, no nothing! What a miracle. I continued to take the products daily (except for the yucky chewables-I hid those under my bed and under the refrigerator. By the time I was found out, there were was a whole bottle’s worth-or two-in my room and the kitchen alone! Oops). However, by my freshman year of high school, I was no longer taking the pills. I didn’t want to focus on my health anymore! I felt it was unfair that I had to take so many pills on a daily basis. And so, the journey began. 

I began to cough. That was the first symptom. I hadn’t coughed since I had been on the products, so it was very new to me. Soon after, my first hospitalization since I was 5 (I have previously written a post about this-5 Years and Counting-so be sure to scroll down and read the details if you’re interested 🙂 ). So I was back to doing breathing treatments and CPT every day (I also hadn’t done this since I was 5). It was a nightmare. But I was a rebellious young teenager at the time and I was selfish. I didn’t  care that my family was suffering right alongside me! I continued to suffer, even after my last hospitalization in the summer of 2012. But God had a plan for me.

Foundation camp. Friends. Family. Depression. Pills. Breathing Treatments. CPT. PRAYER. 

These all played a role in the process I had to go through to “see the light”, so to speak. I soon realized my purpose. I knew why God had brought me here. I knew why I was chosen to have Cystic Fibrosis.

It brought me through the valley of death, and God allowed it to bring me out as well. I know what it’s like to suffer on a daily basis. But I know what it’s like to believe in something bigger and better. I know what it’s like to not be able to breathe. But I know what it’s like to breathe normally. I look forward to the day when I know that feeling again. 

So, I guess the title of this post is inaccurate. CF didn’t save my life-in fact, it could have taken it from me, and I realize that it most likely will in the future unless a cure is found or my God has a different plan to take me home. 

Jesus saved my life. He is the only One who can save my life. Cancer doesn’t save your life. CF can’t save your life. Only Jesus. He is my Healer. My Comforter. My Strength. Through Him, I can do anything. (Philippians 4:13) 

Praise Him.

When He heard this, Jesus said, “This sickness will not end in death. No, it is for the glory of God so that God’s Son may be glorified through it.” -John 11:4

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6 thoughts on “How Cystic Fibrosis Saved My Life

  1. “Don’t take the girl” was a popular Tim McGraw song on the radio at that time. It was a difficult time in many ways. Fortunately for us, our family has been grounded in our faith in God and He is always with us.

    Love you,
    Dad

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