As I previously stated I had one of my 2 unforgettable moments in the bag and this is the one that shook me to my core and saved my life.
Preface: Having Cystic Fibrosis comes with a boat load of problems and one of them is keeping weight on. It has been proven that proper nutritional status and high BMI is directly correlated to stable lung function. When weight drops below a certain point the body starts to eat itself and the lungs start to fail from having to try to get the nutrition they need to function properly. The immune system becomes severely compromised. This turns into many lung exacerbations, IV antibiotics and a downward spiral.
The Story:
In my third year of university I had my first exacerbation and my first hospitalization. It was awful. I lost 10lbs and was coughing up cups full of lung butter (aka mucous). It was a very hard 2 weeks. The bright spot was that I bounced back really fast as I had never had IV’s before so my body was very receptive to kicking some CF ass. I went back to school and back to life. I did not change any of the behaviour that was contributing to my weight loss and decline in lung function. Those behaviours were eating crap, drinking coke, not exercising and not being compliant with my medical treatments. Once in awhile I would go for a run or play some rec basketball. I was partying a lot and drinking a lot. Food was not important to me at any level. Partly because I had and continue to have a very bad relationship with food (that’s another post), I had no appetite, and I had lost my sense of smell in 1992 from my 7th nasal polypectomy.
As I continued on this downward spiral I was truly struggling. For every clinic visit I went to, in those couple of years , I was losing weight each time and each time my team was strongly suggesting I get a feeding tube. I even resorted to putting weights in my pockets to get them off my back. It all came down to a pivotal moment in time. I was in the hospital for another polypectomy which ended up being postponed because I was too sick. This hospital stay was the worst one of my life. My team asked my parents to come for a private meeting (behind my back) and with them confronted me about needing a feeding tube immediately. This was 6 weeks before my wedding. I knew I needed one but I could not fathom having a garden hose sticking out of my gut for the rest of my life. I was already self conscious with my anorexic looking body and to add something that I could not easily hide was devastating.
This is what was happening to my body in medical terms.
Eventually as the fats are used up, the body will begin to break down its own proteins—its muscles and tissues—and convert them to fuel.
“An organism which is consuming its own protein is truly struggling,”
Catabolysis is a biological process in which the body breaks down fat and muscle tissue in order to stay alive. Catabolysis occurs only when there is no longer any source of protein, carbohydrate, or vitamin nourishment feeding all body systems; it is the most severe type of malnutrition. – Wikipedia I was literally wasting away.
While in the hospital, there was another patient in that was willing to show me his feeding tube. I went to his room and he was just sitting there without a shirt on and this disgusting, long, medical tube hanging out of his stomach. I know that I almost died right there. I was beyond devastated knowing deep down that I had to have that “thing” surgically placed immediately. I felt my will to live just disappear. I was crying hysterically and told my fiancé “you’re not gonna wanna marry me anymore!!” The only thing that kept me going, was my soon to be husband, who said he would love me no matter what. He had fought for me from day one. When I was trying to gain weight in the months leading up to this moment, Dean (my fiancé at the time) would wake up at 3 am, mix me a high calorie milkshake and bring it up to me to drink, all the while rubbing my back and hoping I wouldn’t throw it up. He was unbelievable. Can you imagine dealing with that crap weeks before you’re walking down the aisle? He was a wonderful man and still is even though we are not together anymore. We managed to last 15 years together.
So the decision was made, the surgeon was in to talk about what he was going to do and then the anesthetist. I had heard somewhere that kids got to get a skin level feeding tube and not the garden hose for fear of a small child pulling it out. I asked my surgeon and he said, oh yes you can have one after a few months as the track sets (like an earring hole). I was shocked and elated at the same time. I was also very pissed off at my CF team. Why the fuck didn’t they tell me this was an option? I was told by them that I was just going to have to live with the garden hose. No other patient even questioned them. After I found out we could get a skin level tube, clinic got on board and every other patient after me who needed a feeding tube was told that they would be able to get a skin level after a few months. This.Was.Huge.
I actually would have gotten the tube sooner if I had known that. To all my Calgary CFers needing a feeding tube in the late 90’s – you are welcome.
Now I have to add that I was so sick at the time that I had to sit down with my family, my fiancé’s family, my doctor, my psychiatrist and the social worker for the transplant talk. This was May of 1998. Holy shit!! This was just too much to handle. I vowed then and there that I was going to get my weight back on and get better. I owed it to myself and I owed it to Dean and our future together.
Long story short, it took me 11 months to gain 40 pounds. I went into that surgery at 74lbs and circling the drain. The pain of the surgery was pretty gnarly. It felt like I was stabbed but the knife was still in. I couldn’t walk straight for a month. This was due to all the muscle wasting. They cut through nothing but sinewy wasted muscle. Healing would be long. Recovery was long. It was so hard to get that weight on because my stomach had shrunk to the point that I would take one bite of a French fry and want to throw up. It was really bad. My feeds were 24 hours a day for the first few weeks. Basically I was hooked up to a bag of food, much like an IV, attached to the feeding tube in the stomach and machine would pump in the very high calorie food. It was going in at a rate of 1 Tbsp. Per hour and at times that would make me vomit. It was a very hard road because I had gotten to the point of catabolysis as noted above and that made this process extremely difficult.
I despised looking at myself, I could hardly look at the tube to hook it up and I didn’t want to have a shower because of the way it felt just hanging off my body. I was in a constant state of anger and frustration all the while planning the last 6 weeks of my wedding. I had a friend, Andrea, sew me this kind of cloth cradle so that I could tensor bandage the tube to my body so it wouldn’t tug and pull on stuff. It was very helpful until I finally got the skin level feeding tube. I was fighting hard to get better and get down the aisle.
I did make it down that aisle and I can honestly say it was one of the best days of my life,despite all the obstacles we overcame to get there. I hadn’t gained any weight yet but I did have energy and that was amazing.
20 years later I still use this tube every night and depending on my workouts I can add a couple extra cans of food to gain the muscles I am making. I wear bikinis with not one care about what anybody thinks about it. It has saved my life and continues to save my life. If I don’t feel like eating, which is often, I just take a syringe and a can of food and manually inject myself with 500 highly nutritious and easily digested calories. I call these my steak dinner in a can.
I have left out a lot of the bad because I don’t ponder it too much and it really serves no purpose. It made me a warrior and that’s all that matters. I have since been asked many times to tell my story to a CF patient needing a tube but hesitating. I tell them my story and hopefully they see what a benefit it is on so many levels and decide to get one. I don’t know one patient who has regretted getting the tube,me included. I still hate eating and I will share that story another time.
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“Get busy livin’ or get busy dyin'”
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