Since my last post, there have been a lot of exciting things that have happened in my life lately! April 12th, I was matched with a dietetic internship at the Texas Tech University Lubbock site. This was my first choice because it means I get to stay in Lubbock! I turned 22 on April 24th, and I graduate with my Bachelor’s degree in Nutritional Sciences and Dietetics this Saturday! So many new changes are coming up in my life and I couldn’t be more happy for what the Lord has planned for me. Most recently though, I had my yearly check-up with the CF care clinic in Fort Worth at Cook Children’s. I didn’t get any good news, so let me go into further detail…
First of all, I’d like to start out by telling you that I’ve been sick with an upper respiratory infection since last Tuesday and it’s slowly going away now that it’s been over a week. So I knew going into this appointment that it wasn’t going to be my best one with all the extra coughing I been doing. Not to mention all the stressful things I have endured over my last semester as an undergraduate trying to get an internship and pass my second Medical Nutritional Therapy class, I knew I hadn’t gained much weight either.
So when I was told I had lost another two pounds since my last visit and my lung function was back down to 85% from the 95% that it was in January, I wasn’t surprised. However, that didn’t mean that I still wasn’t disappointed.
I had decided that this appointment would be my first appointment by myself. I made my dad sit in the waiting room for the full three hours as I dealt with everything on my own. I thought it would be scary and lonely, but it wasn’t. I normally have to wait around a lot to see everyone in the clinic, but this day I was not alone for more than five minutes throughout the whole visit.
They did my lung function tests first. So I blew my hardest into the mouthpiece and on my (bonus) third round, I finally scored an 85%. I did two more lung function tests before the respiratory therapist (one that I had never met before) gave me a breathing treatment. Unfortunately, this RT didn’t read my chart well enough because he almost gave me Albuterol before I told him I was deathly allergic to that and needed Xopenex instead. He seemed surprised. Fifteen minutes after the breathing treatment I did another lung function test to find that it went up to 88%, so not a significant difference.
Soon after I was taken back to my exam room, Dr. Burk came in. We talked about the issues that had occurred over the past couple of months, including infections and one episode of me coughing up blood. I informed him of how I had been feeling the past week and that because of time restraints and energy levels over the semester, I had done my breathing treatments consistently once daily instead of twice daily. I knew he needed to know everything in order to assess how I was really doing. He was glad to hear that I had not had any pain/pressure in my sinus cavities and that I hadn’t had any chest pain/pleurisy. He did encourage me to rinse out my nasal passages frequently, which I hate doing, but oh well.
He then brought up the subject of the asthma component that I possess. He said he didn’t feel like we had really addressed it much in the past few visits and he wanted to see if it would help with lung function. So he asked if I get out of breath easily and I said that yes, I do. Going up one flight up stairs causes me to breathe heavier than normal. So he is having me do a six-week trial of Accolate to see if it helps at all. Thankfully, there was no talk of a hospital stay before he left the room.
Next, the dietitian came in the room. I knew the lecture that I was going to get from her. My BMI was now a 17.4-well below the minimum 18.5 to be considered in the normal/healthy range. I can’t remember the last time I went to a doctor appointment where I had gained any weight. I knew I was continuing in a downward spiral.
When Rachel, the dietitian, asked me why I thought I had been losing weight, I was very transparent with her. I told her how stressed I had been over the past semester with applying to internships and trying to make it through MNT II so I could graduate. I told her that when I’m stressed, I don’t eat. I also told her that I had really been struggling with feeling apathetic toward a lot of things over the semester, including school, my relationship with Christ and others, and especially my health. I just kind of let myself go because I was tired and ready to be done. I’m also not very good at remembering to take my enzymes with high-fat meals and snacks, therefore, I do not absorb a lot of the nutrients I need to gain weight.
Rachel told me that she couldn’t understand exactly how I felt, but that she had an idea since she had once been in my shoes applying to her internships as well. She was glad to hear that my appetite had picked up quite a bit since I had been out of school, but she was concerned for the future because she knows how stressful graduate school and the internship can be.
She then told me that if I didn’t start gaining weight soon, we would need to start talking about a G-tube, otherwise known as a “button”. This gastrostomy tube would be inserted surgically through my abdomen and lead to my stomach. Feedings would then be provided through this to give me added calories and nutrition that I otherwise couldn’t get by mouth.
It was then that it became very real for me, and I started to cry. I told Rachel that I hate that I have such a hard time practicing what I want to be able to preach someday. I don’t want to be the dietitian that has a g-tube because she can’t take care of her own health. How could I be entrusted to help someone be the best that they can be if I can’t do it for myself?
I told Rachel that I definitely was not ready for a feeding tube. She was glad to hear that I wasn’t just going to give up. So we went over what I could do better. Taking my enzymes is the main thing. I’ve always been a worrier, and when I worry about something, that something is constantly on my mind. So in my opinion, because I will most likely worry about taking enzymes and having a feeding tube, taking my enzymes will be on my mind a lot, therefore I will take them most often, making it more of a habit. Maybe that’s not the most positive way to look at it, but if it works…
I also need to take the initiative to find foods that I can have as my go-to snacks for when I just don’t feel like eating but know that I need to. Keeping a list of snacks that I have on hand will also help. Prepping meals and large snacks once a week for the whole week will also be helpful. If I start trying to fix this now, maybe I can continue to build on these small steps even when I am feeling stressed. Rachel said I have a lot of room for improvement, so we decided to set a goal of gaining at least 7 pounds by the time I go back in 3 months. I know this will be so challenging for me, but I can do it.
After visiting with the social worker and yet another nurse about insurance, I was finally ready for the dreaded blood draw. By this time, I had already been at Cook’s for three hours. At 4 pm, I went in for my blood draw. Thankfully, the phlebotomist I got was very nice (which I think is rare). She actually listened when I told her that my veins are small, they like to roll, and my blood does not flow fast at all. I also told her that they always have luck getting blood from my hands and rarely ever my arms. She stuck me once in the right hand and got it the first stick (also rare). After a minute or two, the blood was flowing so slowly that it started to clot, so she had to take the needle out and stick me again in the left hand. Blood started flowing more quickly this time, so we got a few more vials before it again started to clot. But we still had three vials to go. There was a second phlebotomist in the room helping the first with the blood transfer, so they switched positions and she found what she thought was a really good vein in my left arm. Unfortunately when she stuck the needle in, the vein kept rolling away from her and when she kept digging in my arm trying to stick the vein, it hurt so bad that I started crying and she had to take the needle out. Because they were so nice and accommodating, I allowed them to stick me a fourth time. They found another vein in my right hand, but when the needle went into the vein, blood didn’t come out…it was like I literally had nothing left to give. So they took the needle out and said they would just send what they had to the lab. So at 4:45 pm, I was left with four giant bruises, tender hands, and a very tender spot on my left arm. The band-aids were pretty though.
So overall, the appointment could have gone better. But what a blessing it was to be able to go home that day and not be admitted. My dad even took me to Pappasito’s to eat my favorite meal before we headed home.
I think what I’m struggling with most is the fact that I’m not doing well. I cried a lot of tears at the thought of having a feeding tube, because in my opinion, that’s a last resort option, and I’m not ready for any “last resort options”. I’m not ready to give up. But at the same time, I get so tired of fighting sometimes. Sometimes it is really hard to stay joyful and stay positive through the pain. I hate having cystic fibrosis.
But I am also reminded that God has a plan for me. He can bring all of my broken pieces together and make something beautiful out of them-only He can do that. I’m reminded today to put this in His hands and let Him take care of it. Of course, that does not mean I can just sit back, do nothing, and hope it all gets better. I have some work to do.
I’m called to do everything I do with excellence, and that is really hard sometimes. But what a blessing it will be when my hard work pays off!