Would I have ever been diagnosed...if it weren't for....
I wasn't diagnosed with CF and bronchiectasis till I was 26 years old, I am now 34. All my life, I was always the fun, energetic, out-going, down to earth, hardworking girl you would have ever met. I never had any sort of complications with my health except for I have been hearing impaired since birth. Always going in for surgeries to put those awful tubes in my ears. Which never seemed to do any justice. But whatever the adults assumed will work, then that's the way it goes.
The start of my CF health issues
So... in 2011, when my kids and I moved into this beautiful, 4 bedroom dream house... let me remind you of how perfect this house presented itself. It was every girls dream. It was so amazing. Nothing would ever go wrong, or so that's what I thought. To be honest with you all, who ever would have thought that my dream house would become my very own deathbed. "The end of my life, at age 26 was here, why?" I was so sure I was going to die.
I didn't have any answers as to why me, why now, why so sudden? It drowned me in my own bed every single day and night. I just wouldn't have the energy to get up. For almost a whole entire month, I would stay in bed. I only got up to use the restroom. I paid my roommates money to help get my kids up to school, and to also fix me some food to eat. Because I just couldn't get myself out of bed at all. So, after looking like I've been severely beaten up and ran over by a semi-truck or two...my mom finally makes a visit to come see me.
She wakes me up in such a distraught and worrisome way, forcing me to get to the emergency room. So I did. After that trip to the emergency room, there were so many more emergency room visits to still come afterward. So many referrals to doctors and specialists. And lastly, the very one thing I hated and still hate the most till this very day were the thousands of stabbings of the needles for lab testing and as well as the IVs for medications. I sincerely hate, and I mean hate being poked with needles. It's one thing to poke me once or twice, but really... 20 times or more in a day is extreme.
Getting tested for cystic fibrosis
Ok. I might be over-exaggerating but just a little bit. Because they literally poked me enough in a day's time for weeks/months that it has caused me to have severe anxiety/nervousness, maybe even causes me to have some sort of depression or something. It's a problem now let's just say that.
Ok. So after a couple of years of detrimental damage to my health, and all the horrible symptoms, and many of thousands of pokes with the needles for lab testing; they finally did the test for CF where they wrap this watch like band around your forearm and test your sweat for 2 hours. Come to find out, I'm the first one in my entire family on both sides to have cystic fibrosis. Aren't I the lucky one?! Not! Just asking why me? So, skipping through all the madness I've been through along with millions of other Cfers across the world.
The financial issues I encountered
I want to explain why I went from having all the energy in the world to lying in my bed for months. Why I went from working my tail off every day, full time, to not having a job anymore, to lying in hospital beds for weeks at a time. Why I went from having no financial problems to experiencing the worst financial crisis I have yet to witness in my 34 years of living on this Earth.
Since I moved into the most beautiful 4 bedroom home. My boys and I lived there for 6 years. And the second year of living there, I had noticed something wasn't right with the house. Well, once it started raining on me in my own bedroom, I knew I needed a whole new roof. But something had me pull down the drop ceiling in my bedroom for some odd reason. And when I did, there was this humungous hole in the ceiling. It was so huge. And it was being covered by the previous owners who put up the new drop ceilings. So I informed the landlord of the needing a new roof since it was raining on me because of the hole.
The landlord finally puts a brand new roof on the house. Which was amazing. And job well done. But then my health, my breathing, worsened. 20 times worse. Oh, man. I witnessed my very first asthma attack. And it was serious. Thought I was going to die literally. So then I knew it had to be the house. Seemed like If I would be getting better if I went to my dad's house in south Missouri. Or went and stayed at the hospital. But as soon as I went back home, I was going through it all over again. So I knew then for sure something was wrong with the house.
Noticing issues with the house
After 6 years of living through just hell, I then, finally moved out. Seems though as if I've been gradually getting better each year. Slowly but surely. I do take Trikafta which helps with the drainage of mucus to be able to come up and out, instead of going straight into my lungs. But still, something wasn't right. I had to see what exactly was in that home. So I was able to get into contact with the landlord and I did a mold testing kit.
I started the test down in the basement of the house and waited 24 hours to find some small specks of mold, some being black mold. Then I decided for the next 24 hours I would put the same petri dish on top of the refrigerator in the kitchen. Which happened to be a room right next to the master bedroom where I lived and placed my head for 6 years straight.
So, I came back to see what I thought was disgusting and discouraging. The whole petri dish filled with at least 10 different types of mold. One that had the most, which was black mold. If I could put pictures on here I would show you all. That it literally ruined my life. So the moral of the story is.... yes there is a such thing as CF but in all reality 50% of us that have it probably only know about it by being flared up due to like in my case, I'm allergic to certain molds and black mold being the death of any and everyone. It's insane. That's my story. And God bless everyone through this hectic time in our world
Have you (or a loved one) been experiencing any negative side effects from Trikafta?