Feeding Tube

Over the last 5 yrs my weight has been slowly dropping. There are several factors that play into this. Obviously the big one is that I have CF, which means that I don’t absorb fat, vitamins and other nutrients very well. To help with this problem I take pancreatic enzymes to help digest my food to get the nutrients that I need. Because of this, people with CF often require 20-100% more calories than individuals without CF. The other major factor to my weight loss is lung infections. When I’m sick my body (just like everyone else) burns calories faster and more energy is burned with labored breathing, so I need extra calories to make up for this. That’s easier said than done….how many people feel like eating when they are sick, yet that is when it is most important to eat?! Add into that equation the antibiotics that I take. Most of them make food not taste good, messes with my heartburn, and (one of them) gives me horrible diarrhea…..which overall makes me not really want to eat. When I do get sick, I tend to drop 5 lbs really fast, maintain while on antibiotics, and then slowly start to regain after I’m off antibiotics and feeling better. When I have short period of time in between antibiotic therapy this really doesn’t help my weight gain. (as evident with the sick winter that I have had)

What have I been doing to gain weight? For a long time I have been forcing myself to eat, which is NOT easy when food doesn’t sound &/or taste good. For over a year I have also been taking an appetite stimulant pill in hopes that I would eat because I felt hungry. I have also been drinking some high calorie shakes (mostly Scandi-shakes that contain 600 calories per 8 oz). Even with all of my efforts, I have not been able to gain the needed weight. Before I got really sick, my weight was around 122 lbs (my highest weight in the last 8 yrs was 132 lbs), this year my lowest weight has been 110 lbs.

Anyway, after all that I have been through over the last several months, my lung function is still low Even after having a month to heal from my lung surgery and doing all I could at home to help, my PFTs are still around 30%. At this time Perry (my CF Dr.) suggested that we look into getting a feeding tube to help me gain weight. He reassured me that he knew that I was doing all that I could to gain the weight and he applauded my efforts to take care of myself. He then gave me the pros and cons of having a feeding tube and suggested that we do it soon, but he told me that it was my decision and that I needed to go home and discuss it with Curtis. So after some research, lots of prayer, and discussing this together with Curtis, we decided that I did need to get a feeding tube to help me gain the weight.

So, why a feeding tube? It’s a way to get an extra 1,000-2,000 calories while I sleep. It relives the pressure and worry to eat as much as I can during the day when I really don’t feel like it. Obviously I’m still going to eat during the day, but I don’t have to constantly force myself to eat. (I do still really like food!) Through research that I’ve done, I learned that the benefits of tube feeding include: fewer illnesses, stabilization of lung function, more energy, better mood, fewer fights over eating, increased appetite and less worry over weight. All good things in my book!!!! Some of the drawbacks to tube feeding include: having and healing from the procedure to put the tube into my stomach, doing “one more thing” to take care of myself, and of course there is always the insurance issue….not fun, but all do-able!

How do I feel about all of this? Pretty good actually! For a long time I said that I would do anything I could to keep from getting a feeding tube. However, after battling with my weight for a while, I did start to change my mind. Curtis and I read an article back in December about CF nutrition and feeding tubes. The article listed all of the benefits of feeding tubes that I mentioned earlier. I remember thinking at that time: “Maybe this is something that we should look into.” When Perry mentioned it a few months later I was already thinking about it and felt like the Lord had been preparing me for this. Once Curtis and I researched and prayed about it, I knew that we were making the right decision. My stress level has gone down because I know that I don’t have to constantly worry about food anymore. The one thing that was really hard for me to hear is that I won’t be able to be pregnant if I have a feeding tube (as I would be getting a gastric tube in my stomach and not the one that you put down your nose every night). I know that after a while that we could remove the g-tube and then maybe I could get pregnant….but I also know how much it’s going to help me when I’m sick and on antibiotics and need the extra calories. I have faith that we will be able to have kids someday, even if it is through adoption. I don’t know when it will happen, but I do know that we will be blessed to be parent’s one day. (until then I get to love my nephew’s and all of the babies and kids around me and give them back to their parents when I’m done…..I think it’s a good arrangement!)

As most of you already know, I did get my g-tube placed on April 6th. I’ll post about how things are going soon!!