Diagnost at 6 months of age. As a baby I seemed to be sick all the time, but my local docs said i was fine and my mom was over-reacting. She just knew something wasnt right so she went to a specialty clinic and they diagnonsed me with CF.
Treated with IV antibiotics for almost 2 years.
My 'wish' was to go on a family vacation to Disney World. Mom, alyssa, Mal, and me all went for 5 days or so. We stayed in 'Give Kids the World' Village and had everything paid for!
Amakacin, antibiotic, took my hearing.
same surgery as the feeding tube placement, Placed on my uper left chest area.
"After a week in the hospital and three weeks of home IV I still feel not very good. Like I feel a lot better from when I first went into the hospital, I couldn't breath without O2 ( O2 levals withouth it was 79%) and I had really bad chest pains. I couldn't even go upstairs to my room without completly feeling like I was gonna die! It was bad!" -Alyssa had to pretty much pack for me, I was gasping for breath just sitting down holding onto alyssa hand everytime i went into a cough attack, I had my oxygen tank on full blast. I finally got to the cities though and during one treatment i swear my windpipe/airways closed up for a minute and i thought I was gonna need a breathing tube place. Thats how incredible sick i was and conjested. The sputem was so thick and such a large amount it was clogging up my airways. SCARY!!! Oh, also I had started to twitch uncontrollably(mainly my head and legs i think) and my sis and I kinda joked if off as if i had torretts but it was terrifing.
First Bronc done, they go in to see your lungs up close and personal. Also take samples to test from the lungs.
FVC-66%, FEV1-57% after 12 days in the hospital.
1st time on my own. An apartment with Sara. Lasted 6 months.
coughing up a good amount of blood
4 horrible days in Jamestown Hospital. They were mean, gave me hand ivs that got swollen several diff times, they wouldnt work with my doctors in Minn. and they almost refused to discharge me so I could go to the cities and get proper care. Was coughing up blood so I went into the ER
Second port! Removed the uper chest port and put a new port on my lower left rib area.
In September I had a very scary thing happen to me. One day I was feeling fine, nothing out of the ordinary. I took a nap when no one was home and I had a sleeping pill earlier that day. I dont' remember much after falling asleep. But I remember waking up from the nap in between and feeling funny. I was dizzy and had a tingly feeling all over. I remember coughing a lil but, like i said, nothing out of the ordinary. Each time I came into consciousness I felt out of control and very incoherent. Like a dream where your trying to run away but are unable to do so. Like I couldn't move or get up to get to the phone, and I knew that something was wrong but i coulnt do anything about it. Anyway, my sister later came home from work, it being three hours since this eppiosed started happening, and found me lying on the couch covered in blood and blood everywhere. She didn't realize it at first and walked past me to go into the kitchen but aparently I was calling her name and thats when she finally came in the living room. She called the ambulence. By the time the ambulence got to my house I was completely numb. They then took me to my home town hosputal. Where they, shortly after I arrived, said I had to be rushed in ambulence to Bismarck. And off I went to Bismarck, where they told me a blood vessal in my lungs had bursted and said they had to go in and stop it through surgery.
Heart stopped for a few minutes as CPR was performed by shannon until Paramedics came and shocked me back to life!
Also, another lung embolization where they nicked a major artery in an attemp to get to the left lung. I was out for about 4 days. I have very little memory of the ordeal.
Was coughing up blood, smaller amounts, for about 2 hours. Bismarck hospital. It took about an hour and a half. Then you are bed ridden afterwards
4 weeks and 1 day, longest stay ever. Did a ton of video diaries.
Was treated for blood clots during the longest stay ever. They thought they might have originated from my line(port) and they moved to my lungs making my heart do a ton more work than usual.