My Story
My name is Rachelle Thomas and I am currently 32 years old. I was born in Douglas, AZ in February of 1984. Within 24 hours of my birth, I developed respiratory distress and was air-vacced to a larger hospital in Tucson, AZ. I had a collapsed lung and spent 8 days in Neonatal Intensive Care before I was finally able to go home. Numerous tests were done, but the doctors could not explain what had caused my respiratory problems. Little did my Mom know, this would be my story until I was 13.
I had chronic ear, lung, and sinus infections. At 11 months I had my first set of what would be 4 sets of ear tubes by the time I was 5 or 6. I had my tonsils removed and numerous other surgeries, trying to “fix” all my symptoms. When I was 5, the doctors diagnosed me with Asthma, but that didn’t really fit. When I was 12, they said it had to be Cystic Fibrosis—and in between they assured my parents I would “grow out of it” when I went through puberty. Needless to say, none of the above was correct and by the time I was 13 I had had 13 surgeries and still no answer.
Thankfully, my parents would not take, “We’re not really sure, but we think it has to be Cysitic Fribrosis” for an answer. In the summer of 1997, we made a family vacation out of going to the University of North Carolina at Chapel Hill to visit Dr. Michael Knowles, and his research team. For 3 days I underwent numerous tests and at the end—we FINALLY had our answer. One of the tests was a “Mucual-ciliary clearance test”—I had to breathe in radioactive parts and for the first 4 minutes of every 10 minutes for two hours, they X-rayed my lungs to see how much of the particles my lungs would move out. Normal lungs move out about an average of 30% of the parts in those two hours—mine only moved out 8%. I was diagnosed with Primary Ciliary Dyskinesia (PCD)—a condition in which the little hairs in my ears, lungs, and sinuses don’t function properly. There is no cure and it is a progressive disease—you simply have to try and prevent and manage infections when they come. This is typically through utilizing antibiotics, inhalers and air way clearance therapy.
At the time, I was still a child and I’m sure my Mom and Dad felt more relief in finally having a diagnosis than I did. We finally knew what we were dealing with---and that it was never going to go away. As a kid, I fought Mom on doing my medicines—I would cooperate for a bit, but I would get tired of taking all the medicines and I didn’t like how the inhalers made me feel and would avoid those at all cost. Now that I’m older, I recognize how I might have prevented some of the lung damage I have now—or at least put it off a bit longer if I had done my treatments on a regular basis. Thankfully, I know God is sovereign and in control and has a plan for our lives—even when we mess up or don’t do what we’re supposed to.
In high school I had a relatively “healthy period”, thus giving me more reason to avoid my inhalers. I met my husband, Jordan, when we were 18 and we got married when we were 20. Right about the time we were married and moved into town, my health started spiraling downhill. At first we thought it was living in an apartment and in town—I had grown up out in the country away from the constant cars and trucks and mold that was probably in the older apartment complex. Within a year of being married, we moved into a suburb of Tucson to try and get away from as much pollution as being in the middle of the city. We have since added on to the house to get air-conditioning with a filtration system and got rid of all carpet to keep dust and other things down. In spite of doing all this, my health has still gone downhill.
I am now up to over 30 surgeries and countless hospital stays. I have breathing treatments and chest percussions that take an hour three times a day. In December of 2010 I almost died from a severe reaction to steroids and the antibiotic, Levaquin, that I was using to treat PCD. I am off and on IV antibiotics, oral antibiotics, and inhaled antibiotics in an effort to prevent and get rid of infections I do end up getting. Since 2010, I have had many severe reactions to medication—there have been two times when I have gone into the hospital walking and come out in a wheelchair, unable to walk on my own and have had to go through intensive rehab for months. When I get a cold it can quickly become a bad infection that could lead to Pneumonia or more lung damage. I now have Bronchiectasis, which is the hardening of your airways, which was caused by the numerous infections I had. Some of the surgeries caused me to lose 80% of my hearing, but thankfully with a hearing aide I am able to hear pretty well. My husband and I have also been unable to have children, we believe in large part because of everything my body is constantly fighting. I also have some other pain that the doctors don’t know what’s causing it—it only goes away when I lie down. My energy level is definitely not that of a normal 32 year old and I have to carefully watch what I plan in my days and try not to overdo it, as I can become sick so easily.
By God’s grace, this has not affected my ability to enjoy the life He has given me. I must confess—there are days when I grow weary and tired of all the doctor visits, medicines, and having to say no to activities that I really would enjoy because of my health. However, God has granted me incredible joy in the midst of this suffering and an amazing husband who loves me through more sickness than health. I know He has an eternal home for me—that this life is but a vapor as He says in James—and that I will one day have a heavenly body that works perfectly! Until that day when He calls me home, I pray I can be an encouragement for all those like me suffering with a rare disease…it can be so isolating at times, but together we are strong! Share my story and others on Monday, February 29th with the hashtag #RareDiseaseDay and lets show the world just how many people are living with a rare disease.
The last 5 years since my first Psychosis have been incredibly difficult. I am currently having to be on a low dose of IV antibiotics 24/7 for a total of 21 days because of those reactions. I am so thankful for Jesus--without Him, I wouldn't have hope in the midst of all the chaos that surrounds PCD and life in general. No matter what happens, God is still on His throne and in complete control and working everything together for your good and His glory with the wonderful promise from Philippians 1:6 that "He who began a good work in you, WILL complete it." So encouraging! Please "Share the Rare" stories I'm going to be sharing on facebook and pray for all of them as well. Thanks friends!
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| Mom and me on my birthday in the hospital last week. And of course Snuffy had to be there...he is my hospital and surgery buddy who just turned 30 when I turned 32. :) Mom got him for my second surgery when I was 2 and he always goes along with me. :) |
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| I need an extra arm right now LOL...trying to take a webcam shot with a PICC line while holding your ambulatory IV pump is interesting. |
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