My Cystic Fibrosis

My Cystic Fibrosis:


I don't really find my medical past interesting...

However, here it is...Cystic Fibrosis...

I was born in my hometown, in the local hospital. I was life-flighted to Peoria, IL. I was born 12 weeks premature and spent the first 5 months in Saint Francis Hospital. I weighed 4 lbs at birth, but had to have immediate surgery, due to being born with a intestinal blockage and gangrene in my intestines; they removed 10% of my intestines, so after surgery I weighed less.. I was diagnosed at a few weeks old with Cystic Fibrosis.

When I came home (at 5 months old) I was put in doll cloths and my whole body could fit in my dad's hand. I was on a strict feeding schedule, where mom had to feed me every 15 minutes. (hello, quick naps...)


My eyes weren't very strong, so I  started wearing thick glasses around a year old... I even tried scratching the "lines" (from the bifocals) out of the lens. I didn't quite understand yet.

When I started walking and talking, Mom noticed I walked on the side of my foot, held my right arm funny and talked out of one side of my mouth like Fred Flintstone.

Cerebral Palsy..

I was diagnosed with Cerebral Palsy at the age of 3. I wore a brace on my right foot until I was 9 yrs old. I used to get funky colored straps that matched my outfits..

(Between ages of 3-12)
I thank my parents for the work they did with me! My mom did eye strengthening exercises, and we worked out a lot (anything that would strengthen my muscles). I used to think it was cool that my Dad took me to the playground all the time and ran obstacle courses with me (at the time I had no idea they were having me do Physical Therapy). They entered me in Dance Class, Swimming class, etc. Hated swimming, loved dancing! I gained lots of muscle control over the years!

Seizures...
I had lots of seizures from when I was a baby until about 6 yrs old. Slowly my seizure disorder went away. I had grand mal seizures, and seizures where I would stare into space (my mom could always tell though). I was on phenobarbital for years, then my doctor slowly took me off as my seizures became less common, due to the synapses healing (the damage healing itself). I still have "seizure-type episodes" occasionally. They think it is due to low oxygen levels. Not sure though, but it is pretty rare.

Pneumonia, lung infections, intestines, hospitalizations...
At least once a year, usually up to 2 or 3 times a year, I'm hospitalized for 2-3 weeks for IV meds (pretty common for CFers and I never minded). I have intestinal problems a lot too & my intestines twist up. So lots of hospital stays, which can sometimes led to surgeries...

Surgeries:
Besides the 3 surgeries at birth I have had 3 other surgeries on my intestines (the worst being in 2003, my first year in college). I had a 2 mediports placed in my chest over the years. I  had 5 hernias (due to all my coughing)...  And in 1997 (age 13) I had my G-Tube put in, which was the best decision ever! Then in 2014 I got to have my G-tube removed, had some complications, and had surgery to fix it. In 2016, I had surgery on both of my eyes to fix the muscles. I've had over 14+ surgeries or surgical procedures in my life so far.

Arthritis, Diabetes, Osteoporosis, etc:
I'm not diabetic (knock on wood), even though 30% of CF adults have diabetes.! I have CFRA (CF-related Arthritis) which flares up occasionally, giving me "hive type spots" and making it extremely painful to move. This tends to come and go. Whew. When my joints crystalize it is extremely hard to even sit up or get dressed. I have been monitoring my bone density  and liver levels too, since those have been getting worse over the years. 

LATELY:


Every single day I take over 50 pills, do 9-10 breathing nebulizer treatments, and 3 airway clearance techniques to maintain my current health! I'm trying to keep on top of working out and eating extra calories too with my Fitbit tracker!

I want to be the healthiest I can be! I feel so lucky to have married Andrew and now we would love nothing more than to start a family (via Surrogacy/Adoption) in the near future (so I need to be my healthiest to be a mom)!


-To follow my journey, check out my CF facebook page: Cheriz:My Life with Cystic Fibrosis


(ps. I think when I see a new Doctor, I will just give him the link to this site to record my medical history...lol)





2 comments:

  1. Hi, you invited me to your blog on cysticlife. this is me at 63. When I was born CF was not understood. I was a unthriufty child. I have servived by the grace of God. I now pray that all you young ones enjoy life as much as I have! Live long and prosper, Fibro Bill :-}>

    ReplyDelete
    Replies
    1. Yep! Welcome, Fibro! 63 years old, that's great! Its crazy how many advances have been made just in the last few years! I look forward to seeing what the next few years bring! I love my life and I enjoy it to the fullest! Thanks for stopping by, hope you enjoy my blog posts, etc! Take Care of yourself, Friend!

      Delete