Chapter 3 – Now What?

So we finally have an answer. We have an answer to why I was failing to thrive, why I wasn’t growing, why I was so miserable, why I had the worst bowel movements in the entire universe, why I nothing I ate nourished me, why I was wasting away.

cys·tic fi·bro·sis
/ˌsistik fīˈbrōsəs/
  1. a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infection.

There you have it. Now what in gods name does all this mean for me? None of us knew. So within one day of our appointment we packed up and flew to Vancouver General Hospital to the infectious disease department. There wasn’t an official CF clinic there until 1979. Here mom and dad were put through a boot camp of sorts. I was introduced to pancreatic enzymes which I was forced to take every time I ate. More on this in a bit. I was put into 12 different positions (upside down, on my back, on my side etc.) while my parents learned how to “beat” me to loosen and help expel the abnormal amount of mucous. This was to be done twice a day for the rest of my life. We were introduced to the limited antibiotics available to me at the time for any colds or inevitable infections. Mostly, mom and dad learned that I would most likely NOT reach elementary school.

We returned home and life as we knew it was gone. Answers were given, treatments started and disbelief set in.

This was the beginning of my dysfunctional relationship with food. One I, to this day, still have. Why you ask? Well because I did not have natural enzymes leaving my, mucous blocked, pancreas to digest my food so I had to ingest synthetic ones. At this time the only type of enzyme was a powered form that needed to be mixed into jello powder and water. We tried mixing it with juice and milk and it would just curdle! I was then force fed this disgusting goo. It was a true nightmare. It tasted terrible and I needed to inject, what seemed to be, a copious amount of it, all after I had eaten. I was traumatized by this. I was 4.

The diet I was supposed to eat was to be non-dairy as doctors thought that dairy created more mucous. Apple juice to the rescue…again. Shortly after this, doctors realized they were wrong and that CF patients needed a high fat, high carb diet so milk, ice cream, cheese, butter was back into my diet. It physically hurt me when digesting my food. Even with the enzymes I was only getting 70% of the nutrition. The other 30% was expelled as diarrhea. I remember so many nights writhing in pain, even to this day. So to me food=enzymes=pain.

Added to my life was my twice daily beatings. It was boring and at the time non-productive. It was confusing to me and to this day I don’t remember what my parents told me as to why they had to do it. It didn’t traumatize me. In fact, Mom said I often fell asleep. I wasn’t full of mucous in my lungs. Despite this I was forced to these treatments. Mom and Dad were not taking any chances. We had to follow doctors orders or I will die. My entire extended family was brought into my treatment. We all lived close to eachother so it was nothing to have my uncle shove the enzyme ick down my throat or my Granni to do some beating on me. It takes a village that’s for sure. Thank God.

So now when I got a cold it was like “all hands on deck”! We have to tackle this bout and do everything in our power to get me better. She might die! We had nothing to go on so it was chaos. I got whatever I wanted, I was demanding and cranky. My mom would set up the “mist tent” and I would sleep in this bubble of bacteria filled humid -tropical- forest like environment. It was decades later when doctors realized that these mist tents actually caused exacerbations in the lungs to worsen due to said bacteria breeding in the perfect moist environment. As I said, this disease was not on anyone’s radar so we were all learning about it together, including the doctors. In fact, we are still learning.

I was subsisting on lots of cough syrup/antibiotics. I remember coughing all night every night for days on end and mom or dad staying up with me rubbing my back. It was relentless. I would then sleep all day. Once I was in school I just missed days at a time to recover. It was humidifiers, mist tents, Vick’s vapour rub, steam showers, and beds made on the couch. A cold was not just a cold, it was an event. It still is.

As a youngster, my biggest issue I had, after we got me sorted out, was recurring polyps in the nose due to the build of mucous in the nasal passage. This rocked my world. I dreaded the surgeries as they neared and I would put myself into quite a tizzy. My first polypectomy was at the age of 5 in Vancouver. I was terrified. I would go on to have 6 more.

Enter ‘Sleepy’ my stuffed puppy given to me during this first admission. He was brown, super soft and had long droopy ears with a long droopy face. He looked sleepy so that is what I called him. Side note: he has been with me for all procedures, hospital stays and surgeries to this day. The thing that terrified me the most was any type of needle. I am pretty sure that the IV’s in the head earlier in my life gave me PTSD. Sleepy was the only thing that could settle me down when my family had to leave me. I left him at a relatives house once on a trip with my Grandpa and Jan through BC and I was devastated (I lived in Saskatchewan at this time). I couldn’t sleep until I finally got him back 5 days later! He had to have an eye transplant in 1990, during my first year of University while I was living in Rez, due to his kidnapping but more on that in a later chapter.

So now that we were finding a routine and finding a path to follow I started school with bated breath…

Chapter 4 – The School Years

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