So I decided that I should post a little bit more about me and my CF. In other words, brace yourselves.
I was diagnosed with my CF ( delta F508 gene ) shortly after I was born. At only a couple of day old I had an abdominal atresia repair surgery, which left about a 5 inch scar across my stomach. I took a digestive enzyme called Creon every time I ate and did handheld treatments with nebulizers each day. As I grew I had hospitals at least once a year for IV antibiotics. Before the age of 10 I contracted MRSA , Pseudomonas, and achromobacter. These thing were very hard to treat, and even though after hospital stays I felt better they always seem to find their way back.
When I was younger my PFTs were always great most of the time in the 100’s but within the last 5 years they have slowly declined, but as of right now are stable.
Also when I was younger I really struggle with my weight, they threatened to give me a feeding tube, and that was really hard. When I was little I was really busy with sports, school and activities I just thought I would never have time for one. I also didn’t like the thought of having another surgery. So I stepped it up. I ate like a mad man. (I won’t continue on with the rest of this because I plan to post about my journey with weight within the next week.)
Half way through my 6th grade year I was at a checkup and my doctor noticed polyps in my nose. I went to a sinus doctor and I had to have them removed. It was a hard time because I had to start doing sinus rinses, and I did not enjoy that. It took me awhile, but after sometime I just got used to them. After several months of doing them I stopped… I should not have. My polyps are back and my doctors are now talking about another sinus surgery in the next few years.
Something else that I had to have 3 times was tubes in my ears. I was always getting ear infections when I was little and the way to solve it was by getting tubes. I still struggle with altitude changes though. My ears always hurt like crazy when we take-off in a plane and after we descend I cant hear a thing until the next day. I also can’t go very far underwater because my ears pop, and doing that too many times I will end up with an ear infection.
So now fast forward to when I was going into my sophomore year. It was only a couple of weeks into summer and I was feeling awful, body aches, headaches, coughing until I was puking, sweats and chills, the whole nine yards. I was admitted into the hospital for a 2 week course of antibiotics. As the end of my 2 weeks approached I wasn’t seeing major improvements so they decided to keep me on them for a little longer, but agreed to let me go home.
When I left the hospital I hadn’t eaten in several days and was very weak, but stayed positive. After only being home for a day or so a friend invited me to go boating for the day at a lake about an hour a way from home. My parents were hesitant to let me go, but so fat my summer hadn’t been all I had hoped. So they let me go, but they made me promise to be very careful, drink plenty of water, and take care of myself. I stilled had my PICC line in when I left, but after 15 years of this I knew how to properly and carefully take care of myself. We spent the day on the lake and playing board games. By evening I still hadn’t had anything to eat and all food was making me nauseous. When we loaded up to go, I felt awful! The whole way home I shivered ( even thought I had a sweatshirt on and a blanket ), My stomach was feeling worse and I knew that I had a fever. When I arrived home ( around 10 pm ) my mom took my temperature, 103 degree fever. That’s when she knew something wasn’t right. I was on 2 of the strongest antibiotics, and since I had a fever that was not a good sign. My mom feared that it could be an infection in my blood. I wasn’t sure what that was, but when I asked her if that was a really bad thing to have, she responded, ” well it’s not good thing to have, and you shouldn’t have a fever when your taking all these medicines.” It wasn’t what she said, it was how she said and the look in her eyes when she said it to me, but I lost it. I am not an easy crier, but for some reason I thought this was it and I guess I was scared, of dying. My mom took me to the ER, the whole way I sobbed, I was for sure that this was going to be it for me.
When we arrived at the ER in our home town ( not my usual doctor, my main doctor was at the children’s hospital in NE ), they checked me in and took blood sample, but it took them 4 pokes before they finally got something, and that did not make me feel any better. I was still in tears, they would ask my questions but I wasn’t even able to respond. They told us to head home and check in in the morning. We got home around 1 and I fell asleep with tears rolling down my face. When I woke I remember feel okay, but nothing like my usual self. When my doctor at children’s called us back they told us to head to the hospital right away. So I packed a bag and we hit the road.
When we got there they told me that I was feeling that way because I was very dehydrated and my kidneys were slowly shutting down, they called it an acute kidney injury. Luckily I still had my PICC line so they didn’t have to give me an IV. They pumped a bullet of saline water through me to help with the dehydration. I finished out 3 three weeks on IV antibiotics there and then headed home.
After my kidney injury, it messed with my blood pressure. They were much higher than normal so I met with a nephrologist about it, and she prescribed me a medicine to help. Another thing I did to help with my blood pressure was start taking one of my lansoprazole a day instead of 2, because that medicine could affect my blood pressure, but it was one of the only ones that helps with my acid reflux.
So now present day my last hospital stay was in March and my PFTs are stable. I am on top of my weight and I haven’t felt this good for this long in a very long time!