It’s hard to believe I haven’t written in over 5 months! With COVID-19, it seems like 2020 has already flown by (and thank goodness!). Jason and I have been very busy with paperwork, trainings and inspections as we prepare to be licensed foster parents! We are excited to say that we have completed everything, and are just waiting on our home study to be scheduled! We started this process in December 2019, so it has been a long six months to get here!
As far as Coronavirus goes, I had the privilege of starting to work from home the day after the first cases were confirmed in Lubbock. Since I am a healthcare worker, I wasn’t sure this would be possible. But I have great bosses that advocated for me and health. Normally, since I work at the UMC Cancer Center as their registered dietitian, I am in clinics and in our infusion center seeing patients. But at home, I would just call patients and could either email or mail them handouts. I was really thankful for all of the nurses, doctors, nurse practitioners and other healthcare providers I work with that were extremely supportive of my working from home, when they didn’t get to.
Thankfully, Jason was able to start working from home the same day I did. We both have our separate desks that allow us to have some time apart from each other so we can actually get some work done, lol. Poor Jason. I often would come into our bedroom, where his desk is, and bug him. Especially since he works all day and my hours were only 10 am – 3pm! I had to find things to keep me busy while he worked. I made sure to keep a routine and continued to exercise most days, read my bible and other books, do puzzles, FaceTime my family and watch Hulu/Netflix.
Currently, I just started back at the cancer center this past Thursday, which also happened to be the day I started my new hours! This past year was my last year teaching the health sciences program at Idalou High School so I could focus more on my patients at the cancer center. Now, instead of working part-time, I now work 30 hours at the cancer center. This allows me more time to focus on my patients and get work done, while also continuing to care for myself and have more time to spend with our foster children, when that time comes. We are all very happy with my new schedule, and the fact that I only have one job-haha! Jason is still working from home currently, and was glad for me to get back to work.
Now I want to get to the good stuff-what I really wanted to write this post about.
It’s been a while since I’ve written an update about my health! If you follow me on Facebook, you may remember my last health update that was posted on January 8th-the date of my last CF clinic visit in Fort Worth. My lung function was stable at 100%, but my weight had dropped well below my normal range and I was down to 105 pounds. It was scary and really hard, because we know that when someone with CF has a drop in weight, their lung function is sure to follow. The hard part about that was, I was doing everything I already knew how to do-tube feeding every night (and sometimes more during the day), eating all the high calorie foods and even exercising 4-5 days per week. I just didn’t have an appetite.
I’ve never liked nutrition supplements like Boost, Ensure or Scandi-Shake. I would drink Carnation Instant Breakfast, but it just doesn’t have a lot of calories or protein unless it’s mixed with ice cream, which I just didn’t have time for and got tired of pretty quickly. So my dietitian gave me some samples of a nutrition supplement that I had never heard of before, called Enu. I now drink it every morning for breakfast because it is so tasty! Honestly I’m so thankful for it!
Not only that, but I started the new “miracle drug” called Trikafta. It is a CFTR modulator therapy that is taken twice daily with high fat foods. Here is some information about Trikafta taken from the patient brochure itself, “CF is caused by mutations in the CF gene. These mutations lead to defects in a specific protein called the cystic fibrosis transmembrane conductance regulator (CFTR) protein. As a result of these defects, the CFTR proteins don’t work the way they should. The most common mutation is the F508del mutation (both of my mutations are this type).
Trikafta has been the medication that the entire CF community has been talking about in the past 6 months or so. One of the reasons why is because about 90% of the CF community has one copy of the Delta F508 mutation, meaning 90% of the CF population is eligible for Trikafta. With previous CFTR modulator therapies, only certain populations were eligible for them, so this is a big deal! Honestly though, I wasn’t too pumped to start taking it when it first came out. I had been on two other CFTR modulators before, both of which never really did me any good. But a friend of mine with CF (shout out to you, Alex!) really encouraged me to at least try it, because she could see a big difference, almost immediately! This gave me some hope. January 25, 2020 ended up being my first day on Trikafta. My hopes were to see an increase in my lung function and an increase in my weight, as many people have said that’s what they see on this drug.
I thought some people with CF who said they could tell a difference within just a few hours of taking Trikafta were crazy. And then I became one of the crazies.
I first noticed that I was coughing more and having shortness of breath, which many have called “the purge”. I’ve never really been one to cough a whole lot, or even cough up a lot of mucus. But I was! I even had to use my inhaler a few times a day, which I never have to do!
Previously, if I ever coughed up mucus, it was typically a light green to a dark green color (which indicates infection). Day 2 and 3 of Trikafta, I was coughing up CLEAR mucus. I have never coughed up clear mucus before. I was still coughing quite a bit and continuing to use my inhaler. Not only that (prepare yourself for the honesty you’re about to read), but mucus was coming out in my stools and I would often find it…uh… elsewhere, shall we say. I was shocked.
Day 4 of Trikafta, I’m no longer coughing during a work out. I could do a work out filled with cardio and weight-lifting and not cough AT ALL. I also gained two pounds and was up to 110 lbs at this point. Still coughing up clear mucus and continuing with “the purge”, but it’s not as much.
Day 5 of Trikafta, I gained two more pounds and was up to 112 lbs. I also noticed I was sleeping a lot better and not laying in bed for long periods of time in the morning. I also noticed an increase in the amount of energy I had during the day! I was really, really excited about this.
Day 6 of Trikafta, I noticed a HUGE increase in my appetite. I don’t normally have a great appetite, so it was pretty crazy. I ate the biggest breakfast, lunch and snack of my life this day-lol! My snacks actually started to look like mini-meals.
Day 7 of Trikafta: At this point, it has been 2 days since my last breathing treatment (oops, but definitely not normal for me). I didn’t do them because I was rushed, which happens sometimes! Normally, if I don’t do a breathing treatment, I feel tightness in my chest, cough a lot and feel like I need a breathing treatment. But just in these two days, I still felt really clear. I did a breathing treatment anyway on this day, but just didn’t feel like I needed it.
I stopped doing daily updates because I stopped having daily changes, but the positive changes still continued!
Day…14?? of Trikafta: Not coughing at all when I work out, or really ever. Also noticed that when I sweat, I no longer have salt crystals that form on my face (which was completely normal for me).
Day…21?? of Trikafta: Noticed a decrease in my appetite and food never sounds good anymore. This was the hardest to deal with because I love food so much and plus, I need to gain weight! I relied heavily on my Enu shakes, tube feeding and bean and cheese burritos.
March/April 2020 on Trikafta: I started having a lot of gastrointestinal issues. I had very loose and oily stools several times a day-like, guys… I couldn’t trust my farts. I know you think it’s funny now, but it sure wasn’t then. If this makes you umcomfortable, sorry boutcha. I talk about poop regularly in my profession so I really don’t care, haha! I talked to my dietitian, who said this was a normal side effect and we may just need to wait it out. Cool. Thankfully, my weight was stable! This side effect lasted for two whole months!! There have now been several days that I’ve gone without a breathing treatment and still feel great. But I felt guilty not having my doctor’s permission to do that, so I started back on them…but not consistently. I still felt great and wasn’t coughing AT ALL. Towards the middle of April, my appetite did eventually pick back up, thankfully.
May 27, 2020: I had my first CF clinic visit since starting Trikafta via Telehealth (4 months after starting Trikafta)! I took my lung function and weight at home. Lung function was stable at 100% and my weight was up to 118 lbs (that’s 13 lbs more than I weighed at my last visit in January)! It was truly a very exciting day and my dietitian was SO proud! I talked with my nurse practitioner about not doing breathing treatments and was very honest with her. She said I’m definitely not the only one not doing most of my treatments. She mentioned there is research in the works to see if this is a possibility for us in the future, however, there are not any current recommendations to say whether or not I should stop them. But…she said she can’t really make a case against me not doing my treatments if my lung function is good and stable, if I’m gaining weight and not coughing at all…so that’s where I’m at.
If you’ve been following my health updates for the past several years, you know how big of a deal this is. Breathing treatments are the things that have let me live a normal life, and I don’t “need” them anymore. It’s almost like I don’t have CF. I still take a lot of pills and take enzymes with all of my meals and snacks, but it’s truly not a big deal.
One of the things I have to make sure I do is take Trikafta with high fat meals/snacks. So in the morning, I take it with my Enu shake, but I was really struggling with what to take it with at night, because I honestly don’t eat a ton of high fat foods at night (the night dose needs to be 12 hours apart from the morning dose as well). So I started taking it with a shot of 2 oz of whipping cream-lol! But it’s 200 calories and 20 grams of fat so I am not complaining!!
One other thing I’ve noticed recently is hair growth- I have lots of tiny hairs that hair spray just can’t keep down!
So there it is-everything that’s been happening in my life since the beginning of the year, all wrapped up in this one blog post! If you’ve made it this far, you are a champ-for real! I hope that the next update I share with you involves Jason and I being licensed as foster parents! We are definitely praising God for Trikafta and my great health!
If you’d like to pray with us and for us, we are currently praying for a good caseworker, for our upcoming homestudy, for the children that the Lord will bring into our home, and for the families of these children that are broken and the situations that have led to these little ones coming into our care. Please pray for our hearts as we prepare to step into this brokenness!
If you have any questions, please reach out to me! Blessings to you all!