It’s that time again… time for an update on what’s been going on in my life recently, as well as how my most recent clinic visit went! I’ll start with the clinic visit.
This past Wednesday, Jason and I made the 4 hour trek to Cook Children’s in Fort Worth for my three month check-up. We ate in the hospital cafeteria like we always do, and ordered the same meal we get every time (we are both creatures of habit, if you can’t tell). After we checked in, we waited in the waiting room for about 15 minutes to be called back. Typically, we are the only ones in the waiting room, with maybe one other person. But on this day, there were FOUR other people with CF in the waiting room. It was crazy! How did I know they had CF? We were all wearing masks and doing our best to sit 6 feet away from each other-lol. Plus, I listened to some of them talk to the receptionist and I could tell from their voice that they had CF (some medications cause voice changes, and it is super common in CF patients-it is a very specific, raspy sound). Jason and I both agreed we had never seen that many people with CF in the same room together due to infection control.
Once I was called back, they did the typical, weight/height/blood pressure/oxygen checks. My weight was stable (or so I thought) at 112 pounds. Blood pressure and oxygen were normal. Then I was taken back to the exam room where one of my nurses, Deborah, came in to get all the basic information from me. At this point, typically a respiratory therapist (RT) comes to get me to perform my PFT, but no one showed up.
Soon, one of my dietitians came in to speak with me instead. If you’ll remember from a previous post, I typically have a lot of problems with my GI tract (remember when I attempted to go vegan? Let’s all have a good laugh right about now!). So we talked about how everything was going with that. Thankfully, it has been much better! The severe stomach cramps stopped about a month or so after my last appointment in April. I haven’t had to take any Miralax for constipation in about 2 months, although I’ve come close! I attribute this to the extra fiber I have had in my diet with more fruit being in season (I really love me some peaches, nectarines, cherries and grapes when they are in season!). I’ve also done really well at drinking at least 80 ounces of water a day, plus any other additional fluid I get from sweet tea, gatorade, a coke now and then, and even my feeding tube formula. This was something my dietitian really wanted me to work on-not only to stay hydrated-but to help with the constipation as well. I’ve also done well at working out 3-4 times a week, which also helps with constipation.
One thing my dietitian did mention was that she noticed my weight was down. This confused me because at my last appointment in April, my weight was 112 lbs. So I brought this up to her. She said that it was actually 112.6 lbs and today I was 112.2 lbs… this frustrated me, but I told her that I had actually had a cold/sinus infection for a week and half, and I had just gotten over that about a week and half ago. When I have a cold/sinus infection, I don’t really have much of an appetite. She didn’t seem to care. I also told her that since then, I haven’t really been wanting breakfast (she was not excited to hear that, which I knew would be the case). But I also told her that I eat the rest of the day, and Jason agreed (his exact words were, “She eats literally all day long”). So my dietitian wanted to know what I snack on. I started listing off my typical snacks… chocolate pudding, pretzels, beef jerky, popcorn, pickles, cheese cubes, pepperonis, fruits/veggies, hummus…then I realized she wasn’t going to like my answers because most of the options are not high in calories. I was right. She was glad to hear it was a lot of variety, but told me I needed to work on adding more calories. I tried to explain that I add calories more easily when I cook, but she didn’t seem to care, unfortunately.
Now, I understand that she was doing her job. I do need to eat more calories. However, I got a feeding tube 3 years ago because eating was stressful for me and I don’t typically enjoy high calorie food options. I have to be in the mood for peanut butter. I don’t like sweets (except ice cream, chocolate pudding and Dunkin’ Donuts donut fries). I just really love fruits and veggies by themselves. But if I am in the mood to dunk my favorite foods in high calorie dips, then I do it!
After receiving my feeding tube, my weight has been higher than ever and it’s STABLE. That is HUGE for a person with CF! The fact that I had a cold and a very poor appetite for over a week (I lost close to 10 pounds) and was still able to gain it back in time for my appointment was a big accomplishment for me. So all things considered, I’m happy with my weight and can’t say I 100% agreed with my dietitian on this one. But that’s okay. Like I said, she was just doing her job. I will say, since my appointment, I’ve been trying to choose higher calorie options when I have the choice (mainly choosing between what ice cream flavor to have, lol).
I think I’ll choose to just eat my favorite snacks and continue to tube feed 5-6 nights out of the week because it works for ME and I don’t feel stress with food, but instead, I enjoy it (like we all should!).
I brought up switching my enzymes with her as our last topic of conversation. I take Pertzye enzymes-the 16,000 Lipase Unit capsules. Recently, my pharmacy called to let me know that a new version, the 24,000 Lipase Unit capsules were now available. I knew that this meant I could take LESS enzymes with my food. To someone with CF, it’s always exciting to have the possibility to take less pills, because we already have to take so many. Plus, since we have to take enzymes with all of our food, and we eat all the time, taking less is definitely ideal (or none at all, but that’s not fun for anyone!). So, we did some math and figured out how many capsules I would need to take with high fat meals, snacks and before and after tube feeding. Hopefully, there are no issues! I was given a sample bottle, and so far, so good! The new enzymes are slightly bigger, but that was to be expected since they contain more lipase units in each capsule. See below for pics comparing my old enzymes with my new ones!
Next, I was finally called to do my PFT. We always get three tries. The first two tries, I blew 96%, but my third and final try, I blew 97%-same as my last appointment!
It’s possible that I can contribute my stable weight and PFT to Symdeko, the new gene therapy med for those of us with the Double Delta F508 gene mutation. I have been on this now for almost three months. I will also say (and I am not proud of this), I have been lazy when it comes to my treatments these last few months. Since working part time, my schedule is not the same every day and I’m used to doing my treatments with my “work day” schedule. It is still taking some getting used to, but I am working on it.
Next, my NP, Cindy, and Dr. Burk came in. After my last appointment in April, I took two weeks to fill out a sleep journal and about 10 other pages of information on my sleep. Even Jason had a page to fill out-things like if I snore, sleep walk/talk, etc. So at this appointment, they brought in the paperwork and Dr. Burk said it definitely looks like something is going on with my sleep. He asked a few more questions to see if I had Restless Leg Syndrome, which I don’t, and then Cindy told me that my Ferritin levels were pretty low. My Ferritin level was 44, and Dr. Burk told me it should be between 150-200, preferably closer to 200.
Ferritin is a protein in the body that stores Iron and releases it when our bodies need it. So if Ferritin is low, Iron levels can deplete quickly and an iron deficiency can develop. This then, can cause unexplained fatigue. So what could be causing the low ferritin levels? Not consuming enough iron can cause it (I highly doubt that’s my problem), but conditions that affect intestinal absorption can also cause low ferritin levels (more likely for me).
So, the solution? Taking oral Iron. Yes, another pill! When taking Iron, it’s important that it is taken with ascorbic acid (vitamin C) to help with absorption. Some iron pills come with ascorbic acid in it already, so you don’t have to worry about that. But, it’s also important to avoid any alkaline (dairy) products with the iron and 4 hours after consuming the iron so it is better absorbed.
Cindy told me it’s very important to take the Iron right in the middle of a meal so it doesn’t make me nauseous. Dr. Burk told me to buy several small bottles of different brands and try each one, one week at a time and see which one affects my GI system less.
I was excited, because this is a possible answer to my constant fatigue! It will be hard, because I love dairy products and rely on dairy for the majority of my calories. But, I think it will be easiest for me to take the Iron with my lunch, and hopefully not worry about the dairy.
I also took the opportunity to be honest with Dr. Burk and Cindy and let them know that I have not been compliant with my Tobi Podhaler. They asked why, which I knew they would, and I let them know that the medication makes me cough incessantly and Jason always says it sounds like I’m dying. Lol! Jason was sitting in the exam room with me and said, “It’s pretty bad!”
Dr. Burk told me to always ask how I can make my treatments better if they aren’t working for me. I love that he encourages honesty! And now that I’ve been honest, they have offered me another solution that could work for me-there is an inhaled version, rather than these capsules filled with powder that irritate my lungs. Yay! So I’ll be trying that in the near future instead.
So overall, this was a great appointment. No blood work, good results and possible answers to things I have been struggling with! I’ll go back on Halloween for hopefully, an even better appointment!
Now, for an update on what’s been going on in my life recently.
I stopped working for Epic Medical Solutions in late May, and started working part time at UMC, the hospital I was working at previously. I have LOVED being back! The dietitians there are some of my really good friends and they make working at UMC a blast. Plus, I feel like a dietitian again, and not a sales person.
I’ve also been given the awesome opportunity to teach part time at Idalou High School, which I am so excited about! I’ll be teaching Medical Terminology and Health Science Theory. I have never taught before, but anyone who knows me well, knows that teaching has been a long time dream of mine. “Long time” meaning, since I was a little girl. I was the girl that asked for school/teaching supplies for Christmas-haha!
I’ve also opened my own private practice-Joyfully Eating-where I work with clients to better their health and lifestyle. I try to do what my clients request, but I like to teach Mindful Eating over any kind of diet and even over eating less calories. I don’t have a lot of clients right now, but I’m also not really trying to grow my business right now since I’m about to start teaching and have no idea what I’m doing!
But I have to say, it has been SO nice working part time this Summer. I have been able to rest and feel like a human most days. I have been reading more, and spending time taking care of me, which I don’t normally do. But it was needed. The nice thing is, even when I start teaching this fall, I will still be able to take care of me, and also do something I’ve always dreamed of doing.
Another exciting thing is that Jason and I just bought our first home! We have been renting, and were asked to find another place to live by March/April of 2019. Jason and I hadn’t planned on moving until maybe end of 2019 or even 2020, but we had peace about this and felt the Lord was pushing us to fulfill our dream of buying a home earlier than we had planned! We started officially looking at homes in early June, and by the second week of June, we had a house! The market in Lubbock has been INSANE, so we found and put an offer on our house within 12 HOURS of it being on the market. There was even a bidding war, and we were chosen because we could be flexible with when we could move in. The family living in the house now are building a home that is not done until end of September, and they are expecting their third child around the same time as our closing date ( we close tomorrow, July 31st!). So we do not move in until October 1st.
Jason turned 24 a little over a week ago, and I threw him a surprise party that was The Office themed! He was so surprised and had a blast!
This week, we are headed to Santa Fe, NM to celebrate our second wedding anniversary! It’s honestly really hard to believe we have already been married for two years. Time flies when you’re having fun! It’s been a joy to be married to my best friend.
Well, that’s what has been going on with us. Please pray for me during these next few weeks as I start taking Iron and try to figure out this teaching thing. Pray for Jason and I as we prepare to move into our new home in a couple of months and that things will go smoothly for us!
I also just wanted to say that recently, I’ve been made aware that there are many of you that follow my blog that I have never even met. I just want to say thank you so much for taking time out of your day to read my posts and pray for me and my family. I appreciate each of you so much!