It’s hard to believe I have just over a month left of this semester. I’ve enjoyed being a graduate/teaching assistant for a professor that I had in some of my undergraduate classes and I have learned so much! Working for Allison Childress, MS, RD, LD, CSSD has been such a joy. I’ve been able to assist her on many of her projects, including her research proposal, a poster for a study abroad class that she is teaching next summer, and even assisting on articles she has written for the media. I’ve also had the opportunity to speak to a class of approximately 75 Exercise and Sports Sciences students on nutrition myths and teach them how to find good resources for nutrition information. This week, another TA and myself will speak at a program for students who live in the residence halls on good nutrition and finding nutritious foods on campus. Throughout my time as a TA, I will also be going with Allison to Lovington, NM to assist her with her long-term care patients. This way, I will be able to start some of my internship rotations before I technically start my internship in May.
I’ve also really enjoyed working with other students who are applying for their internships just like I was this past year. I can remember being in their shoes and being so stressed out! I’m glad I can be there for them and give them guidance on their applications, because we did not have someone for those purposes last year! It makes it even more enjoyable because some of my friends are in the class I get to assist with. Even though it is a grading heavy class and I spend a lot of time reading personal statements and resumes, I still enjoy working with dietitians in the academic field and seeing things from their perspective.
Along with my new job, I’ve recently started a new medication, called Orkambi, about 2 1/2 weeks ago. If you’ve read the past couple of my blogs, you know that I was expecting to start this, and that this medication is brand new to the CF world and is a pretty big deal! Studies have shown that it increases lung function by working directly on the gene that causes CF. This drug was made specifically for those that have the gene that I have-the double delta F508. This means I have two copies of the delta F508 gene, which is pretty common. So side effects of this new drug were pretty extensive…
Instructions for this medication is to take two capsules twice a day. So I started on a Saturday morning, and by Saturday afternoon I was feeling like poop. I felt like I had the flu, which is something that I was told to expect. But I felt awful. By Saturday night after the second dose, I had extreme nausea and a fever. The fever broke during the night thankfully, but I woke up with an increased cough that just wouldn’t go away. Now, I’d also like to mention that I had just gotten over a cold from being in the hurricane wind and rain in NYC, and I had already lost my voice from coughing so much. So now, I was coughing yet again, so my voice was still basically gone. I stopped eating. Thank the Lord for my feeding tube so I was at least getting some nutrients at night because I did not have an appetite for a week after starting Orkambi!
But the first week was the hardest and the most difficult. Now after another week and half, I’m feeling like my normal self. I’ve definitely seen a change in my breathing, and although I still have coughing fits when I laugh too much or climb several flights of stairs, I feel that I am breathing better.
One thing that makes it difficult to take Orkambi twice daily is that I have to take it after a high fat meal/snack. So I drink two cups of whole milk with one Carnation Instant Breakfast packet to provide approximately 18 grams of fat before each dosage. The reason we have to do this is because clinical trials also showed that Orkambi was absorbed better with fatty foods than it was when fasting. So far, I have yet to tire of Carnation and I drink about two gallons of milk a week!
Now on to update you on my #journeywithjoey. About a week ago, I woke up in the middle of the night to find my tube had come out of my button. So of course, formula was EVERYWHERE. I mean, it was all over me, my shirt was soaked, and the formula had soaked through my sheets, my comforter, and even my mattress pad. So there I was, at 4 am, doing laundry and taking a shower to get the dried formula off of me. Other than that night, my tube does not ever come out of my button. Now, several weeks ago, I would wake up in the morning and fight formula had leaked onto my shirt and had made a big stain. I called my surgeon and he had said it was normal for it to leak some. He suggested I put gauze around it to soak up the formula that leaks out. So I did. But now, the gauze can’t hold the amount of formula that leaks out, so it continue to leak through my shirt, and sometimes it gets on my sheets. So now I’m washing my sheets sometimes 2-3 times a week! It’s getting a little ridiculous and I’m tired of waking up with formula dried on my stomach and my clothes. So tomorrow, it’s time to call the doctor again. The good news is that I’m still gaining weight! According to my scale at home, I’m about 110 pounds. I haven’t weighed this much since about 3 years ago, and it’s actually the most I’ve ever weighed in my lifetime.
One last thing I would like to update you on, and that’s my season of engagement! Jason and I are really enjoying planning our future together. Sure, we still have a little over 9 months, but it’s still exciting! According to my wedding planning app on my phone, I have 43% of it planned. Which is a lot I feel. I think the hardest part will be planning the smaller details of the wedding, including decorations, etc. Sometimes I feel stressed just because I stress easily, but then I remember that I’m ahead of schedule with planning my wedding and I literally have no need to be stressed right now. I’ve been blessed with a wonderful fiance who reminds me of that daily and I love him for that.
So there’s a quick update on my life. I love graduate school, my job, and my fiance. I’m thankful for my feeding tube, my new medication, and my supportive parents. I am truly blessed, but I’m ready for Christmas break.