A CFer’s Thoughts on Five Feet Apart

NOTE: If you have not seen the movie yet and do not want spoilers, I encourage you to read this post at another time.

This is your last chance.

OKAY. SPOILERS AHEAD.

 

Oh man, y’all. WHERE. TO. BEGIN.

I hope you’ve heard of the most recent film, Five Feet Apart, that officially comes out today, March 15th. If you haven’t-here’s a brief overview before I dive into my personal thoughts:

Two teenagers living with cystic fibrosis (CF)-a genetic, terminal illness-meet during their admission to Saint Grace Regional Hospital. Stella and Will. They are not friends. At first. But then, they become more than friends as they do breathing treatments together, take pills, and do all the things CFer’s must do to stay alive. They do it all together. Well, over FaceTime. You see, it’s strongly encouraged that people with CF stay at least six feet apart from each other. That’s right. Six feet, not five. This is a rule we are encouraged not to break so that we don’t share bacteria or germs with each other and get the other sick. It’s to protect us from each other. This is something that not many people know about CF.

So where does the five feet apart come in to play? Stella recognizes that she loves Will. But they can’t touch. Can’t even hold hands. She finally realizes that CF has stolen so much from her, that she wants to steal something from it-one foot. Just one foot, so she can be closer to Will. So that’s exactly what she does.

I’ll stop there. Really, spoilers are coming. Get out now if you don’t want them!

When I first saw the trailer for Five Feet Apart, I cried. I was just scrolling through my Facebook feed one day, and there it was. I was SO excited. Many people have no idea what CF is, let alone what it’s like to live with an illness that will most likely take your life sooner than you’d like. I was PUMPED to know that CF was going to be the backdrop for this love story.

As word got around about the movie, there were mixed emotions in the CF community. I felt it was half-and-half. Many were excited, as raising awareness for CF is a really big deal for our community. Like I mentioned previously, many are unaware what CF is. In fact, according to the director of Five Feet Apart, Justin Baldoni, only 3% of Americans were aware of what CF was prior to this movie coming out.

However, there were also many CFers out there that thought it was terrible they were using CF in this way. We are being exploited! They are making money off of our daily lives and every day struggles! Yeah. Money is being made. But that’s business. In my eyes, any publicity is good publicity!

Except for when the ad campaign started. Now THAT pissed me off. And it actually made pretty much the entire CF community pretty upset. I won’t go into that here, as I want this to mainly be about my thoughts on the movie. But, if you want more info, you can visit my Facebook/Instagram page, or message me directly!

Another one of the main concerns about this movie coming out, was that obviously, it was going to attract a lot of people with CF. We want to be the first ones to see a movie about our disease! But again, six feet apart at all times, people! So we had to make sure it was known that precautions must be taken.

If you (a CFer) choose to go to the theater to see the movie, you are encouraged to:

A. Wear a mask (a recommended, safe mask!)

B. Gloves

C. Use hand sanitizer

D. Use Clorox wipes to wipe down your seat

E. Wear purple (the color for CF) so other CFers know where NOT to sit

F. Sit at least six feet apart

 

Once tickets were for sale in my area, I made sure to buy tickets to the first showing (Thursday at 7:00 PM), and we got tickets for my parents, sister, Jason and I, with plans for me to sit in the middle, ensuring I wouldn’t be sitting by any other CFers!

I also read the book in preparation for the movie, and I’m so glad I did!

When we got to the theater, we grabbed snacks and I put my mask on. We found our seats and I put on hand sanitizer and gloves, then wiped my seat down from top to bottom. Honestly, I’m probably going to do this any time I go to a movie theater. That seat was NASTY. Literally, the Clorox wipe was brown. Ew.

I watched as a couple of other people with masks came in. People I’ve only seen/talked to on Facebook. Not that I haven’t been around other CFers before. We have our Great Strides walk in May, and the Taste Tour event in October. We’ve talked and waved to each other from afar.

But this was different.

This was a movie theater. I was seeing a movie with other CFers! This is unheard of! We were actually doing something fun together (somewhat). It was, honestly, a really cool feeling. Any time that I heard coughing in the theater, I smiled. Not because it was funny-but because I knew it wasn’t some sick rando- it was someone else who had the same disease as me!

(As a cool side note, a friend of mine, Alex McLennan, also has CF and lives in the Dallas area. We bought tickets for the same show time, so it was really cool to watch the movie at the same time, and then talk about it over text later!)

When the movie started, my eyes already had tears in them. It was so overwhelming!

The movie starts out by showing Stella (Haley Lu Richardson) with her friends in her hospital room. She’s helping them pick out bathing suits for the school trip they are going on, without her. Why can’t she go? She got sick and is now admitted into the hospital-story of a CFer’s life. I’m not admitted to the hospital very often-only twice in the last 20 years for CF tune ups. I’m lucky. But that doesn’t mean I can’t relate. How many times have I missed out on something fun, or had to cancel plans because I don’t feel good? Too many times to count.

Stella then meets Will (Cole Sprouse), who is a rebel and hates doing his treatments. He hates doing them so much, that he just doesn’t do them anymore. He says, “It’s just life. It’ll be over before we know it” and “we are breathing borrowed air”. Some perspective, huh? But that used to be me.

Growing up as a teenager, I was rebellious. Didn’t do my treatments. In fact, I went to severe lengths just to FAKE doing my treatments! Being hospitalized my sophomore year of high school did nothing for me. My parents begged me to do them. I didn’t care. It wasn’t until I suffered from depression the summer before my sophomore year of college, that I finally realized my purpose in life. And I began to do my treatments.

If you know me, you know I’m a planner. I’m organized. I’m what you call, “Type A”. I’m a one on the Enneagram, if you’re into that. I love me some organization! That’s how I relate most to Stella. She is on top of her treatments (and Will’s) at all times! She created an app to help keep her pills and treatments organized. She has control issues and she knows it. Hiiiii. Meet Jordan!

If I wasn’t so organized, I’d probably be dead. Seriously. Okay, maybe not. But I would not be as healthy as I am right now! Organization is key for me to stay on top of my pills and treatments! I haven’t always been perfect at it, but it truly helps, and I’m more on top of my CF than I’ve ever been!

Then, we meet Poe, played by Moises Arias. Stella’s BFF. Poe brings a lot of hilarity to this movie. Jason and I both agreed he was our favorite part because everything he said was hilarious! But, halfway through the movie, Poe dies. Right after he spent time with Stella and Will. He was fine just hours before his death.

And that, y’all, was so real.

I know way too many CFers whose life was taken far too early because of this terminal illness. And you know what? For a few of them, they were fine. Sure, their lung function was declining, but they were fine. When Poe died, all I saw were the faces of the ones I knew and loved with CF who had already passed. Christian Lincoln (my cousin). Claire Wineland. Lea Faraone. Elyse Montanez. I couldn’t stop crying. Tears ran down my face and neck before I could catch them with my tissue, as I thought of those women whose lives were taken by this disease that I still have to live with. It hurts just to write this.

Going back to before Poe passes, Will and Stella go on their first date. It was on this date that there were two sensitive topics addressed between the two. As Will and Stella sit on the hospital pool’s edge, with their feet dangling in the water, they talk about dying and what they think it might look like, feel like. They imagine what that last breath is like. Will says he thinks about it all the time. Here are Will’s words, taken directly from the book:

“That’s how we are going to go, isn’t it? We drown. Just without the water. Our own fluids will do the dirty work. ”

“I think about that very last breath. Sucking for air. Pulling and pulling and getting nothing. I think about my chest muscles ripping and burning, absolutely useless. No air. No nothing. Just black.”

Shivers run down my spine when I read those words. But truly, if CF is what takes me home to Jesus, that’s how it will be. That’s what happens.

AH! This is getting intense, and a little sad. But, y’all wanted to know my thoughts! When you live with a terminal illness your entire life, you have the right to have thoughts like this and it be okay. I’m okay! I promise!

The second sensitive topic during their first date, is in regards to the scars. Will tells Stella how beautiful she is, and how much he just wants to touch her. Stella is shy and tells Will she doesn’t want anyone to see her. She has too many scars. She has a feeding tube. She isn’t sexy.

Girrrllll. I feel ya! I’ve always been thin. I remember once, my freshman year of high school, a peer of mine asked if I was anorexic. You can imagine how that made me feel. I don’t have a lot of scars like Will and Stella have, but I do have the feeding tube. And I agree. It’s not sexy.

But it saved my life. And you know what? I got engaged two days before I received my tube. I got married a year later! My husband loves me and thinks I’m gorgeous and sexy. Do you know how I know? He tells me all the time. He loves me for me, and not what I look like (or don’t look like). It’s the best feeling to be loved by someone in this way, and I thank the Lord daily that he gave me Jason.

So in all, what did I like the least about this movie?

They need to teach those actors/actresses how to cough like a CFer! Those coughs were so pitiful y’all.

That’s it. That’s my only complaint!

What did I like the most about this movie?

It was real. Raw. Powerful.

They had medical professionals on set to make sure that what was included in the movie was realistic. They did a great job! The pills, the AffloVest, the names of medications, the procedures, risks of procedures-it was all great! One thing I will point out though, was that the nurses did not follow HIPAA-the Health Insurance Portability and Accountability Act. This act basically provides data privacy and security provisions for safeguarding medical information. Essentially, don’t talk to patients about other patients. This was broken quite a few times! Also, I work in a hospital, and not many CF patients are placed on the same floor and allowed to roam the halls at all times. It could be different at other hospitals.

So, what are some things to keep in mind about this movie?

It’s not a documentary. Five Feet Apart is a chick-flick. It’s an American romantic drama. It’s not 100% about CF and it’s not 100% accurate. It’s about two teens who fall in love and just happen to both have CF, making it impossible for them to be together.

I’d also like to point out that CF affects every person living with it, differently. Some of us live in the hospital. We may be on a lot of the same meds, but not all of them. Some of us live long enough to contemplate starting families, going to college and working full-time, while others of us die way too soon. Some of us need double-lung transplants before we turn twenty years old. We are all so different. There is no way that the director could have included stories completely similar to all of ours. This is just a snapshot.

Another thing to keep in mind that my cyster, Alex McLennan pointed out, is that yes, these two teens weren’t allowed to be in a relationship because of the six feet apart rule. But the reality is, we can’t even have face-to-face friendships because of this six feet apart rule. We are forced to get to know each other via social media platforms, texting, FaceTime and other apps, like Marco Polo. Let me tell you. Nothing hurts worse than not being able to be around the only people that know what you’re going through. All we want is to be able to go get coffee, have lunch together, GO TO THE MOVIES-you know, just be able to do normal things that we do with the rest of our friends. But if we want to stay safe and not get yet another lung infection, or end up in the hospital, we must stay away. We are forced to stay away. Like my friend and cyster Alex said to me tonight, yes, Will and Stella fell in love. But I love my friends with CF…

Another thing-taking pills in chocolate pudding is gross. I tried it. No thanks.

 

Lastly, what do I hope you take away from this movie?

I hope you know a little bit more about what cystic fibrosis is and what some of our realities are as people living with this disease. It’s rough. Really rough. Some days are harder than others! Some days are completely normal. But every day, I take approximately 40 pills. I do 3-4 different breathing treatments. I have a vest that I use for 20 minutes/day to help loosen mucus. I cough up mucus. I tube feed at night. I s.t.r.u.g.g.l.e. to gain weight. Yes, even with the feeding tube.

But I hope you also know that I don’t want your pity. WE don’t want your pity! We don’t take any day, or any breath, for granted. We celebrate life on a regular basis! We love each other well, even from afar. We take challenges head on. We fight to live the best possible life, because anything is better than living with CF. We love deep, laugh often, and cry a lot.

I loved Stella’s idea to steal something back from CF. After all, it had already stolen from her. CF does put a lot of restrictions on us at times. Like Stella says, we are basically doctors by the time we are 12 years old. CF becomes our life. But, only if we let it. I choose to steal my life back from CF. I chose that several years ago, actually. I choose to live every day fully and without regrets. I’m not saying I do that every day, but it’s definitely a goal. I choose to steal joy back. It can’t take that away from me, even though it tries hard to every day!

I hope you are encouraged to read more about cystic fibrosis. I hope you share what you know about CF with others, because awareness is a big deal! Get involved with fundraisers/events in your area to help raise money for a cure for CF! Did I mention that? There isn’t a cure. We could really use one.

If you feel led to give to the Cystic Fibrosis Foundation and help fund research for a cure, please visit https://www.cff.org/ and DONATE!

I’d love to hear your thoughts on the movie, and as always, please feel free to reach out to me if you have any questions on Five Feet Apart, my life living with CF, or cystic fibrosis in general.

**Please note, this film is rated PG-13 for thematic elements, language and suggestive material.

 

Facing Anxiety Head-On

If you know my story, you know that I suffered from depression about 7 years ago when I was hospitalized for the second time (that I can remember) and was put on IV antibiotics for a month. It was a very hard, painful and trying time for me. So hard, that I considered taking my own life. I was so tired of the pain that CF was causing. But the Lord used people in my life to show me the truth-that I was significant and I had a purpose in life.

Since then, I haven’t struggled with depression, or so I thought.

Yesterday was my quarterly appointment with my CF care team in Fort Worth at Cook Children’s medical center. I had a 3:00 PM appointment (which is late for us), so I went to school and taught my normal two classes, headed home, and we were on the road before 10:30 AM.

The entire car ride to Fort Worth, I was thinking about how I had told my mom I was going to Waco with her the next day to watch her Varsity Girls basketball team compete for State. This is the second year that my mom is taking her team to state, so it’s very exciting! I already had off Friday from both school and UMC, and I had a sub already for Thursday at school since Jason and I would be getting back from Fort Worth so late, so really I just had to make sure I could get off Thursday from UMC and I would be good to go! So I did just that!

But it wasn’t long after I had committed to going to Waco, that I started to feel uneasy about it. I couldn’t explain why. I tried to talk to Jason about it, but he didn’t understand. Which is okay; we are different people, and it is much easier for Jason to relax and do things on a whim than it is for me.

So, on the way to Fort Worth, I tried to pinpoint where my anxiety was coming from regarding this trip. We got to Cook’s, and I checked in by myself while Jason went to grab me food from the cafeteria (I don’t eat when I’m stressed, and I stress a lot-hence the feeding tube lol-so I hadn’t eaten since breakfast that morning about 7:30 AM, and it was now 3:00!). Since I was one of the last appointments of the day, I was quick to be seen and put in an exam room.

As soon as I was alone in the exam room, I started to cry. I didn’t know why. It just needed to be let out. Of course, as soon as I did, my nurse walked in the room with a second nurse that was shadowing her. She asked if I was okay, and I apologized for my tears and just said that I was “having a bad day”, as I didn’t know what else to say. I quickly wiped away my tears so that we could get down to business.

She asked how I had been feeling and what was new. As we were talking, I noticed my packet of papers that I get with every appointment. This packet shows who I will be seeing and what tests I need to have done on this appointment. I noticed that I was seeing my social worker and that I would need to get a chest x-ray and an oral glucose tolerance test, all of which I don’t do unless it’s my yearly appointment. So I asked if it was my yearly, and she said that it was. I made sure to tell her that this seems to be an appointment too soon, as it was in April last year. I told her that I hadn’t prepared for it to be my yearly. She said it was okay, and that I could get all of my labs done at home, for which I was thankful because I would not have had time to get them done!

I then did my pulmonary lung function test (PFT), and I blew a 97%. My last PFT was 99%, and my baseline is 98%, so 97% is pretty stable! Since it’s my yearly, I then have to do a breathing treatment, wait ~15 minutes, then do another PFT to see how my numbers change. While I waited for the second PFT, my social worker came into my exam room. She always asks the same questions:

“Any abuse or neglect in the home?”

“Do you ever feel like hurting yourself?”

“Do you have any feelings of anxiety or depression?”

She asks some other questions as well, but I typically always answer “no” to all of them. Except for today.

When she asked that last question, I paused.

I then opened up and told her that I normally cope well when I am stressed, but that I have not been able to cope with this issue, and it’s weird for me. And it doesn’t make any sense that I am stressed about this.

She asked if I have been sleeping well. I told her that it’s been at least 2 years since I’ve slept well and that’s something Dr. Burk and I have been working on. I told her I take iron supplements to help increase my ferritin levels, as we think that could be causing me to feel fatigued all day, every day. She suggested I try talking to Dr. Burk about it again today, and said that when we get enough sleep, our brain is able to tell us that we are okay when we are stressed, but that if we aren’t getting enough sleep, our brain is too tired to tell us that, and our coping mechanism is the first thing to go. She then gave me two written tests that I get every year-one for depression and one for anxiety.

I filled out both of them and when she looked at them, she said that I do have moderate anxiety and showed some signs of depression. She suggested I call my insurance company to see what providers are covered and that I see a counselor so that I can just have someone to talk to. I probably would have been a little more freaked out, except that I have seen a counselor before and really enjoyed it. I am really good at talking lol.

Next, Dr. Burk and his nurse prac, Cindy, came in. We didn’t have too much to talk about, as my lung function is good and my weight was up 3 pounds from last time (back to my stable weight of ~110 pounds). We talked more about my fatigue and sleep troubles. We want to see where my ferritin levels are at when I get the labs drawn, and if they are still low, they want to look at doing IV iron. Cindy explained that sometimes, since CFers do not digest food well, we cannot always absorb iron from an oral supplement, so getting it from an IV could be more beneficial. I don’t know what that would like, but it doesn’t sound like fun, so I’m hoping I am able to absorb the iron from the oral supplement! Dr. Burk said, that in the meantime, I could try L-Tryptophan to help me sleep. Tryptophan is what is found in turkey that makes you sleepy. It’s a precursor to Serotonin, a chemical that helps to regulate your body’s sleep-awake cycle. So I’m going to Drug Emporium today to grab some and see if it helps!

I then talked with a dietitian-a new one that I haven’t met before. She was really nice. I told her about my typical routine, what I eat, my tube feeding routine, and my goal to get to 115 pounds and how I’m trying to attain that goal. She felt that I was doing everything correctly, and really had nothing to say-which honestly made me feel good as a fellow RD.

I did my second PFT and got 99%, so we were very happy with my numbers! I coughed up some mucus in a cup so they can test what’s growing in my lungs, then headed down to do a chest x-ray.

Afterwards, we grabbed some Pappasito’s to-go, then headed home. On the road, I called my mom to tell her about my appointment, like I always do. I debated whether or not to tell her about my anxiety, as I did not want to disappoint her. But I still felt uneasy about the trip, and I still didn’t know why.

But she’s my mom. So I told her. And of course, she was very understanding and told me not to go. She said she knows I love her and support her, no matter what. So I chose not to go. And do you know what? I didn’t feel any better. I felt guilty.

I talked with Jason and my friend Bern about what I was feeling. Jason knows how much I stress, and it’s often. Bern suggested that the reason I am so stressed/anxious is because I’ve made some big life choices in the past couple of years.

I left UMC and began a very stressful sales job with Epic Medical Solutions. I finally realized that I didn’t care how much money I made, as long as I was happy and taking care of myself, so I left Epic to work part-time at UMC again. It felt SO good to be back, as I had always loved working there.

Then, I was offered a part-time teaching job with Idalou High School, teaching two classes a day for the Health Sciences Program.

I have always wanted to teach-ever since I was a little girl! So when I was offered this chance, I jumped at it. But y’all, I didn’t realize how stressful and difficult teaching could be! I’ve never taught before, and I didn’t go to school for it. So I’m wayyy out of my comfort zone.

Now don’t get me wrong. I love teaching most days. I love the students! I love watching them have fun as we learn about the human body. But it is stressful. My vice principal comes into my classroom about every other week to find something that I need to work on as a teacher. As a Type A and a 1 on the Enneagram, my desire is for perfection. I hate not being perfect at something that I try so hard at. So I hate that I am not a perfect teacher, as if there is such a thing!

I’m being moved to the Southwest Cancer Center at UMC as their dietitian in April, so there’s another small job change. Jason and I bought a house about 8 months ago, so that was a little stressful. It’s just been a lot. With me not getting very much sleep, I believe my coping mechanism has definitely been depleted.

Thankfully, there is a difference between the last time I suffered from anxiety, and this time. This time, I’m choosing to face it head-on, rather than stuff my feelings and keep them from everyone around me.

This time, I trust that the Lord will bring me through this. I know I can always lean on Him, as he is faithful. And I’m excited to meet with a counselor this coming Tuesday and have someone to talk to about my anxieties/stressors.

Thank you for reading about my most recent doctor appointment and what’s been going on recently. There’s actually still a lot more to update on, but that’s for another blog post 😉

 

“Hope When It Hurts”

Hope When It Hurts, written by Kristen Wetherell and Sarah Walton

I’ve been listening to a lot of podcasts recently. Specifically, the Journey Women podcast. A friend of mine (shout out to you, Sarah Kiriacon!), shared a particular episode on her Instagram story, and I knew I had to listen to it.

I’ve never really been a podcast listener. I just don’t have the time. Or so I thought! Since I started listening to the Journey Women podcast, I can’t stop! I listen to at least one episode a day. It has brought me closer to Jesus as I listen on my way to Idalou, to UMC, and then on my way home. I am constantly growing, and I love it!

Today, I listened to an episode titled, “Hope When It Hurts with Sarah Walton”. I didn’t really choose to listen to this episode today, it was just “next” on the list. Little did I know, that the Lord knew I would need that episode, specifically, today.

Living with cystic fibrosis is hard, frustrating, disappointing and sometimes, it’s heartbreaking. Sometimes it sucks.

The CF community lost a friend today.

Lea was someone that inspired the community to do better, be better. She was a nurse and was someone who dared to live life beautifully.

In the past several weeks, CF reared its head and it took her life.

To say that we are saddened is an understatement.

We are pissed. Heartbroken. At a loss for words.

We are hurt.

You see, it was sudden. Lea’s passing was unexpected to us. We know that we have shorter life spans than the average person. We are aware that we will most likely not outlive our parents, friends or spouses. We know it. No one has to remind us.

It can be really tempting, and really easy, to live in this fear. This fear of dying. Wondering how long we have. Wondering what we will get to experience before our lung function crashes and we require oxygen, or worse, need a lung transplant because our lungs have failed us.

Our lungs can fail. But Jesus doesn’t. He will never fail us. Jesus is the reason that I choose to not live in fear.

Psalm 34:18 tells us, and reminds us, that “The Lord is near to the brokenhearted and saves the crushed in spirit”.

I am so grateful that He knows how I am feeling. He feels for me and what I am trying to work through. I know I can’t go through this alone. I have my husband, my family, even my sweet coworkers who let me cry in the office today and who reminded me that I am strong. And I have God and the hope He gives me.

I have hope that one day, there will be a cure for this disease, even if its not in my lifetime (although I reallyyyy hope it is). I have hope that the Lord will heal me, even if it means I am healed by going home to see Him.

I know the Lord has great plans for my life. I know my purpose is to glorify Him through all I do. I choose to believe that, rather than revert back to my old self-when I lived in depression and chose to hide away from everyone and everything.

The Lord is good, and so sweet. He is sweet to give me more time. He is good, to allow me time to live out my dreams and plan a future with the people I love.

In 1 Peter 1:13, we are commanded to set our hopes fully on the grace that will be brought to us at the revelation Jesus Christ.

Below, I’ve listed a few of my favorite quotes from the Journey Women podcast, because yes, it’s that good.

“If our hope is anchored to Christ, our identity is rooted in Him and His work on the cross. Our joy comes from being invited to enter into His joy, our victory is connected to the power of the resurrection…”.  – Amy Waters, When the holidays are hard, ep. 80

“Those of us who belong to Christ have overwhelming cause to be grateful, regardless of the circumstances.” – Mary Mohler, Gratitude and Hospitality, ep. 79

“If you’ve trusted Christ, your real life is secure in Him. And one day, we will experience true joy in the presence of our Father, unburdened by sin, surrounded by friends, and finally real.” – Catherin Parks, Authentic Friendship, ep. 76

“While your justification cost you nothing, your sanctification will cost you everything.” – Jen Wilkin, The Will of God, ep. 74

And last, but not least:

“We have to go to the cross because that is the essence of our faith. Christ died and rose again so that our suffering wouldn’t be hopeless anymore.” – Sarah Walton, Hope When It Hurts, ep. 73

I hope that you know, that the God I serve is not just my God. He is your God as well. We have a God who can bring purpose to our suffering. What a great God we serve!

If You’ve Been Wondering…

If you’ve been wondering what has been going on with me health-wise lately, I’m sorry you’ve been waiting so long for a blog post! Life has been pretty hectic for me recently. It’s the end of the second six weeks at school so I’ve been busy grading papers, giving tests and preparing for the upcoming weeks before the holidays! UMC is keeping me busy while our boss is taking her maternity leave. We started hosting a college Gospel Community again this year in August, and I’ve had a couple of clients come to my private practice. Thankfully though, I am still taking time for me and my health. I typically have one weekday a week that I teach for a couple of hours and then am home by 10 a.m., where I can rest, grade papers, do treatments and do things for me. However, last week, that one day off was spent traveling to and from Fort Worth for my doctor appointment at Cook Children’s for my quarterly appointment.

 

Before we get into that though, I’d like to take you back about 5 weeks earlier. I chose to spend time during my classes one Friday talking about cystic fibrosis and having a feeding tube. I brought my Vest, feeding tube supplies and my pump to show them what living with CF looks like for me every day. Since these kids are interested in going into the medical field someday, I try to always provide them with real life situations, scenarios, etc., so they know what they are getting into.

 

I took time to pour formula into the feeding bag so they could watch how the pump helps me tube feed. Unfortunately, I did not take time to flush my feeding tube with water after we used it. I was just busy and didn’t think about it. For those of you that don’t know much about feeding tubes, you MUST flush your tube with water after putting formula through it to make sure it doesn’t get clogged.

 

I also typically don’t tube feed over the weekends, just to give me a break. That weekend was no different. So, I went all day Friday, Saturday and Sunday without flushing my tube. Monday evening, I was preparing to tube feed, when I realized what I had done. Immediately, I grabbed my syringe and filled it with warm water and tried to flush my tube. It wouldn’t budge. Thankfully, I worked for Epic Medical Solutions and know a lot about feeding tubes and what to do in situations like this! I began to slowly and gently push the plunger of the syringe back and forth. I did that for about ten minutes, and then I began to push harder and faster. It still, wouldn’t budge. I started to freak out. I had spent about 20 minutes trying to flush my tube at this point. I knew that if I couldn’t get it to flush, I would have to go to the ER and get it replaced, which is obviously not ideal.

 

So I kept trying. I closed my eyes and prayed fervently to God to get my tube to flush! Finally, after 30 minutes of trying, the clog burst through my tube and into my small intestine. I FELT it. It actually scared me because I wasn’t expecting it and it came out hard and fast! But I was so thankful. I thanked the Lord immediately and all was fine.

 

But then, I woke up the next day and felt nauseated. Which really wasn’t abnormal for me. I’m nauseated pretty often, but it’s normally pretty mild and goes away when I eat something. But this day was different. I couldn’t look at food, smell food, think of food, nothing. My body was not having it. But again, I thought it would go away with time, so I didn’t think too much of it and tried to drink Ginger tea and suck on Ginger flavored tummy drops. I also tried Emetrol, which did nothing.

 

But the next day, Wednesday, I felt the same. Plus, I threw up in the morning while getting ready for work, when I hadn’t eaten anything. I knew if I didn’t do something soon, I would lose weight, which I try so hard to not do. So, I called my dietitian at Cook Children’s. I told her what was going on and what I had tried. Her first thought was that I was pregnant. Fortunately, that thought had already crossed my mind and I assured her I wasn’t. She was at a loss and told me to call my nurse. I called Candace, my nurse at Cook’s and told her what was going on. She too, was at a loss, but told me to call my GI doctor, since it could be related to my feeding tube.

 

I called my GI doctor and she called in some Zofran for me (an anti-nausea med). I really thought Zofran was going to be the cure-all. Little did I know, it was going to make my problems much worse.

 

I started taking the Zofran on Thursday. On Tuesday, I was still feeling the same and noticed that I had not had a bowel movement in several days. Unfortunately, a side effect of Zofran is constipation. So I called my GI doctor and she had me come in the next day, on Wednesday. During my appointment, I told her that I couldn’t tell if the Zofran was helping or not, since I knew it had caused constipation, which I know can also cause nausea. She agreed, and told me that she thinks constipation was the initial cause of the nausea, not my feeding tube, since it is working fine, and thinks the Zofran just made it worse. Her solution was that since I have CF and having GI issues is a normal and typical thing for us, that I just needed a more aggressive bowel regimen than just Miralax every so often. She prescribed me a medium dose of Linzess and told me to play around the dosage and see how often I needed to take it (she doesn’t recommend this to all of her patients, just the ones that work in the medical field, LOL). We also took labs and did an X-ray of my abdomen. My labs came back normal and my X-ray showed stool in my abdomen, which we expected. She told me to expect the Linzess to give me diarrhea.

The next Monday, when I still hadn’t had a bowel movement, I became concerned. I threw up in the shower that morning, again, without having eaten anything. I started to worry that I had a bowel obstruction, which is also very common for those of us with CF. After leaving school and working at UMC for a few hours, my abdomen became very distended and my stomach was hurting so bad that I could barely move/walk without it hurting. I called my mom and sent her pictures of my stomach. She was also concerned. So I messaged my GI doctor over the Patient Portal. She told me to take two doses of the Linzess every day. She also got me an appointment for a contrast CT scan, which I’ve had done before, and called in a prescription for GoLytely and told me to take half of it when I got it, wait 8 hours, and take the other half. She told me if my distention got worse, to go to the ER. I picked up the GoLytely that evening and was surprised to find that it was 4 LITERS of it. My doctor had told me that I could put it through my feeding tube, which was a good and bad thing. I considered a good thing, because that meant I didn’t have to drink the GoLytely. I already did that once when I was prepping for my colonoscopy and it was, quite literally, the worst. However, since my tube goes into my small intestine, and not my stomach, it physically cannot handle a lot of volume. Small intestines just weren’t made for that! I knew I had to be careful putting it through my tube.

 

That night, I grabbed a syringe, Jason grabbed another, and we took about an hour putting 2 Liters of liquid into my small intestine to try and clean me out. Half-way in, I began to feel sick. But I kept going. My stomach became more distended the further we went. Finally, I only had two syringes left. As I began to put the first syringe of liquid through, my intestines gurgled and I knew what was about to happen. I grabbed both syringes and booked it to the bathroom! And finally, after 6 days, I had a bowel movement. I finished off the last of those first two liters while I was in the bathroom (insert crying/laughing emoji here, lol).

Now, I knew that if I waited 8 hours and then did the second half of the GoLytely, it would be early in the morning, and then I would have to go to work afterwards! So I chose to wait and do the other half the next night. I did, and unfortunately, it didn’t kick in until about 4 a.m. It was a long night, to say the least!

But, I was finally cleaned out.

 

I then had the contrast CT scan. This requires an IV to be placed so the contrast can go in. This is always the hardest part for me. The technician attempted to place one in my right hand, but couldn’t get it. He didn’t understand why I wouldn’t let him place one in my arms. But when you have been poked and prodded as often as I have, you know your body pretty well. He finally got the IV placed in my left hand, and the CT scan went smoothly after that. However, later that night, the vein burst and my hand went red and blue and I was in a good amount of pain for the rest of the evening. My hand remained bruised for a few days after that.

I was still taking two doses of Linzess at this point, and realized over the weekend that I was now having several episodes of diarrhea a day. It was at that point that I brought it back down to one dose of Linzess daily, which helped! A few days later, I headed to Cook’s.

 

I was nervous about going to Cook’s, mainly just because I knew I had lost a lot of weight. During the entire 5-week period, I had remained nauseated and my appetite had been very poor. Before the GoLytely, I was down from my usual weight of 112, to only 104 pounds- severe weight loss in just 4 weeks. Before I went to Cook’s though, I was able to get it my weight up to 108 pounds, and my appetite had slowly started to improve.

 

Sure enough, I stepped on the scale and it remained 108 pounds. I really wasn’t worried about my lung function at all. I had felt good for the past several months. Even Jason commented that he noticed I had not been coughing as much, except when I did my breathing treatments. Sure enough, my first try on the PFT, I got 97%. The second try, I got 98%. My third try, I got 99%! The respiratory therapist asked if I wanted to give it another go-I couldn’t say no! I got 99% again, and my lungs were tired so I stuck with it.

 

Not long after my PFT, my nurse prac and doctor came in. They were very happy with lung function, but, as expected, not excited about my weight loss. Dr. Burk actually was not happy about the new medication, Linzess, that I was taking. Turns out, it was made for Irritable Bowel Syndrome (IBS). But, he said if it works for me, then I can continue to take it (so far, so good). I made sure to tell them that I had not been able to be compliant with either Symdeko (CFTR modulator) or the Iron (taking due to low ferritin levels and fatigue), due to my very poor appetite. Symdeko has to be taken with very high fat meals/snacks, which I couldn’t eat much of. Iron cannot be taken with dairy, and I was eating dairy with anything that I could keep down just to get extra calories. So, we decided not to get labs done because it wasn’t going to be worth it.

 

Overall, Dr. Burk wanted to talk about how we could get my weight up. With a sly smile on his face, he said, “Hm. I wonder where we can find a dietitian to help you gain weight?”. I smiled and asked what he had in mind. At first, Dr. Burk suggested adding Beneprotein to my tube feeds. I nodded my head. I knew the point he was making, but also knew that Beneprotein was not what I needed. Per 1 scoop/1 packet, it’s only 25 calories and 6 grams protein. We use it at the hospital all the time, but mainly just to ensure that patients are able to meet their protein needs. We talked about my goal weight, which, according to my dietitians, is 130 pounds. Now, I personally don’t think my body is made to weigh that much. It’s just not me. According to my height, which is 5’4”, my ideal body weight is 120 pounds, give or take 5-10%. The most I have every weighed is 115 pounds, about 6 months after I got my feeding tube. We settled on 115-120 pounds as my goal weight.

 

Last, but not least, my dietitian came in. We first talked about my weight, and I brought up Dr. Burk’s suggestion of adding Beneprotein to my tube feeds. She agreed that it wouldn’t be very helpful. Instead, we decided to increase the number of cans of TwoCal HN (my tube feeding formula), from 3 cans, to 4 cans, nightly. This would provide a total of 1,880 calories and approximately 80 grams protein. I also had to increase my enzymes with this new change. We then discussed my problem with taking iron. It had been very hard on me, before I got sick, to take iron without dairy. I thrive on dairy products, because, not only are they tasty, but they provide good calories, fat and protein to my diet.

 

When Dr. Burk first told me to take iron at my last appointment in July, he told me not take iron with dairy, and that I couldn’t have dairy 4 hours after taking the iron. As a dietitian, we learn a lot about medication interactions with food. But for some reason, the interaction between dairy and iron was something I hadn’t been around in a while. So, it didn’t hit me until my current appointment, while sitting with my dietitian, that I had always learned you only had to wait 2 hours after taking iron before you could consume dairy again. My dietitian confirmed this. This was going to make it so much easier on me! Now I could take iron with a non-dairy snack when I get home from work (about 3:30), and still eat dinner and add as much dairy as I want to. GAME CHANGER. Even though I’m a dietitian, it’s always so nice to have other RD’s around me to talk to and bounce ideas off of.

 

The other issue we talked about was my enzymes. Y’all, I cannot figure out why it is so hard for me to remember to take the dang things. I have tried setting alarms on my phone, placing enzymes in plastic bags and putting them different places-cabinets, my lunch box, purse, cups, etc. Nothing seems to work, and it is so frustrating! I did tell her that I’m pretty good about taking them with breakfast and dinner, because that’s when I usually take Symdeko as well. But lunch time is my biggest hurdle. She asked if I have a supportive work environment, and I immediately told her that I do. The dietitians that I work with are amazing! She suggested that I ask them to help me remember. She encouraged me to continue to get in as much fluids as I possibly could, and then my appointment was over!

At work the next day, my coworkers asked how my appointment went, and I told them. When I asked if they could help me remember to take my enzymes, they were so happy to help! Because of them, I haven’t missed a day with taking my enzymes at lunch! My work family is the best.

 

I’m also trying to spread out the time that I spend tube feeding. 4 cans of TwoCal is a lot of volume for my little body over just 8-9 hours of sleep. I have chosen to use my tube feeding backpack to carry around my pump and formula and tube feed for up to 12 hours (or more) if I feel like it. I even went to a friend’s birthday party with it!

If you’ve made it this far in this blog post, you’re a champ. Seriously. Thank you for taking time to read about my health journey recently. It’s been hard. Really hard. There are honestly times where I want to give up, because I just want to feel good. But then I think about all of the other CF patients who are going through way worse than I am. Hospital stays, IV antibiotics and lung transplants aren’t a part of my life, and haven’t been for several years now. I’m one of the lucky ones.

 

Please pray that the Linzess continues to work so that I do not get backed up again and have to go through all of this a second time. It is not fun at all. Please also pray that I can continue to gain weight, remember to take my enzymes, and continue to be as compliant as possible with Symdeko and iron. I won’t give up!

Got my flu shot! Have you?!

Jason’s “The Office” Themed Surprise Birthday Party

Jason and I got married two years ago, and not long into our marriage, he found out I had never seen The Office. He was so disappointed in me and made it his mission to watch the entire series with me. So, we binge-watched when we had the chance, and I grew to love The Office almost as much as Jason.

Fast forward to the end of June of this year, 2018, and the idea to throw Jason a surprise party with The Office as the theme came to my mind. I knew I had to do it. Since Jason was turning 24, it wasn’t the traditional time to throw a surprise party. Typically, someone might wait until 25, or even 30. But I was so excited that I just couldn’t wait!

Jason and I had just bought a house and I knew my parents’ rent house (which we were living in) would be going up on the market sometime in July, so I didn’t want to host the party at our house. Plus, I wasn’t sure how I could pull that off with Jason in the house. So, I asked my mom if they wouldn’t mind hosting it at their house. Of course, she said yes and was very excited to help. Both my dad and my sister would be out of town the weekend of Jason’s birthday, so it would just be the two of us. So, I planned the party for Saturday, July 21^st, the day before his birthday, and invited 70 or so of our closest friends, Jason’s family and his co-workers. I encouraged everyone to wear professional attire and/or dress up as their favorite character.

I immediately began “pinteresting” ideas for the party.

I knew I had to find an “IT IS YOUR BIRTHDAY.” Banner. Thankfully, during my Pinterest adventures, I came across a blog where this wonderful person put free printables from a party they did, and there was a free banner printable! I easily printed this from our printer and taped it together, rather than spending $15 on one from Amazon.

I purchased duct tape, white paper crepe streamers and black, brown and grey balloons from Amazon as the main decorations.

I made sure and print out some of the best memes from The Office to post around the house and printed out memes to go with the themed snacks we would be serving.

There were many, many snack ideas. I even had some snacks that I ended up crossing off the list last minute because I just had so many. I ended up choosing to get a cake made at Market Street that was as plain as could be and just said “IT IS YOUR BIRTHDAY.” In light brown icing. The actual cake was half vanilla and half red velvet (Jason’s favorite).

I purchased M&M’s to go in Kevin’s Jar of M&M’s, cheese balls from Michael’s time owning his own paper company, Angela’s Double Fudge Brownies, Dunder Muffins (mini blueberry muffins), pretzels (Free Pretzel Day), snack-size Kit Kat bars and last but not least, a stapler in lime Jell-O (Jason’s favorite flavor of Jell-O). For beverages, we had water, Mexican Lemonade, and Virgin Orange Vod-Juice-Ka. We also had a separate Break Room, which was just the coffee bar. I purchased decaf coffee pods for the Keurig and laid out disposable coffee cups, creamer and sugar.

I couldn’t figure out a great way to make the memes stand by the snack they “belonged” to without having to purchase thicker paper. But one day, I was at the Dollar General looking for a stapler (to put in Jell-O, obviously), and I came across a pack of Manilla Folders for $1. I had the idea to put the memes on a folder and stand them by the snack they were referencing, and it worked!

I used pencils, pens, calculators, paper clips and copy paper that my mom and I both already had as decorations for the table of snacks. My mom had some copy paper boxes that we used as other decorations and I bought a letter board at Target for $14.99 to put one of Michael Scott’s quotes on (I had been wanting one of these boards anyway).

One of the things I am most proud of is the “Serenity by Jan” candles that were at the party. This was a very last minute idea that I had while at Dollar General (where all of my grand ideas come from, apparently). I bought two candles for $1 each and printed off the Serenity by Jan logo and taped it on the candles. They were a hit!

I purchased black paper plates, napkins, cups and plastic forks from Amazon for around $35 and had extra duct tape available near the cups with a sharpie so everyone could write their names on the duct tape and then place it on their cup.

I had purchased a card from Etsy to put out near the cake and had also purchased a “World’s Best Boss” coffee mug from Amazon for Jason to use as his drinking cup during the night.

I also planned for us to play Office Olympics, with winners receiving Dundie’s (small trophies I purchased from Amazon for about $10-12) instead of yogurt lids. The first game we played was “Modified” Flonkerton. We didn’t have any copy paper boxes filled with copy paper, so I borrowed a few copy paper boxes from a friend and from my mom and had two players each put their feet directly in the boxes (each player got two boxes-one for each foot). We played outside where I had laid two of my mom’s “laying out” cushions in the yard as an obstacle course. Each player started on opposite sides and was expected to make a full figure-eight through the obstacle course. The fastest person won and moved on to the next round. We had three rounds total, and the winner got a Dundie. This was probably the most fun to watch!

The second game we played was Waste Basket-ball. I bought two round trash cans from Dollar General ($3 each) and grabbed 20 pages of spiral notebook paper. I crumpled the pieces of paper into balls and each player got 10 balls. We found the best way to play this was to see who could get the most balls into the basket, so each player got 10 tries. The winner moved on to the next round, with three rounds total and the winner received a Dundie.

The third and last game we played was one that I titled Cup-O-Joe, because there wasn’t a name for it in The Office when they played it. We had two players who each got a coffee cup full of water. We had them use the same obstacle course as those who played Modified Flonkerton, but they had to make two figure-eights as fast as they could. The winner was whoever had the most water in their cup at the end (the birthday boy was the judge), and they got to move on to the next round, with three rounds total and the winner received a Dundie.

Jason got to give a Dundie to the person who he thought was “best-dressed”, and the other Dundie’s were available to anyone who wanted to approach Jason and give him a Dundie for being a good friend, etc.

I spent two and half days at my parents decorating and preparing for the party. Jason thought I was hanging out with my mom, as she had just come back from a week-long cruise. We do spend a lot of time together, so he didn’t think anything of it. The day of the party, I actually had a baby shower that I attended that morning, and then went straight to Wal-Mart to pick up the snacks I had pre-ordered (thank you Wal-Mart Grocery pick-up!) and then to Market Street to get ice and the cake. I spent the rest of the day finishing the decorating, deciding where all of the snacks would go and putting on the finishing touches.

Jason isn’t much of a celebrator. So when I had been asking him what he wanted to do for his birthday, it was always “I don’t know”, or “I don’t care”. Eventually, he decided we could go out to eat on Saturday night to this favorite restaurant, Triple J’s, which wasn’t going to be open on his birthday, and then we could just do nothing and “relax” (his favorite) on his actual birthday. So, we decided to go eat early, around 5:30 PM, and then head to my parent’s house, where my mom was making him a dessert. I told him that some friends had invited us to come hang out at their house that night so we would have to leave my parents by 8 or so, and he agreed. He had literally no idea.

We went to eat and had a great meal. Unfortunately, we were done by 6:30 (I tried really hard to drag it out), and I had told everyone to arrive between 6:45-7 PM and we would be there around 7:15 PM. So I told Jason I had to go to the bathroom, with a look in my eyes that he knew we would need to go home. When you have Cystic Fibrosis, going to the bathroom in your own bathroom is a BIG deal and Jason knows it. So I sat on the toilet lid for a good fifteen minutes and then we headed to my parent’s house.

We had pre-planned for my mom to call me on our way over and tell us to park in the driveway (which is behind the house), so that Jason wouldn’t see the MANY cars in front of the house. So we did. I taped a meme of Dwight and Jim hanging party decorations on the outside of the garage door for him to see before we went inside. He saw and turned and looked at me and said, “What did you do?”. Then he heard people inside and as he opened the door he said to me, “Did you throw a surprise party??”.

Y’all. He was SO surprised.

He walked in to everyone yelling “Surprise!” and everyone telling him Happy Birthday.

I had made him, my mom and myself a t-shirt last minute-I purchased $2 white t-shirts from Hobby Lobby and transfer paper from Office Depot for about $21 and transferred the Dunder Mifflin logo onto Jason’s shirt, “Assistant to the Regional Manager” on my shirt, and “World’s Best Boss” onto my mom’s shirt. Jason loved it.

We started with cake and opened up the snack table. The rest of the night we played Office Olympics and hung out with our friends and family. It was a blast and I loved celebrating my sweet and deserving husband! If anyone wants me to plan their next party, I think this may be my long-lost calling. I’m all about the details!

Special thank you to my mom, who not only hosted the party, but cleaned and helped put out snacks/drinks while I was away at dinner with Jason. Also, thank you so much to everyone who came and celebrated Jason. We were honored to have everyone there!

 

Low Ferritin and a Life Update

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!

The new 24,000 Lipase Unit Pertzye Enzymes!

 

Left: one 24,000 Lipase Unit Pertzye Enzyme; Right: one 16,000 Lipase Unit Pertzye Enzyme

7 16,000 lipase unit enzymes (what I would take with a really high fat meal)

5 24,000 Lipase Unit Pertzye enzymes (what I will now take with a very high fat meal!)

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!

Vegan: The Good, The Bad and The Bad

Well friends, most of you have probably been wondering how my vegan journey has been going this past week. Let me tell you, it’s not.

I was SO excited to try going vegan! I read a post from a fellow CFer via the Cystic Fibrosis Foundation, which you can read here, and it was really encouraging. If you know anything about what I’ve been going through CF-wise recently, you know I am tired all time and my digestion is terrible. These two things are what going vegan was supposed to help with.

What is “vegan”, you may ask? Basically, it means no animal products. Some may call it a plant-based diet. No meat, cheese, milk or dairy of any kind, no eggs, fish…you get it. Of course, there are vegans who eat eggs or fish, these are called ovo-vegetarians and pescatarians, respectively.

Since I have CF, I have to get a lot of calories, fat and protein. Thankfully, I’m a dietitian and have a good idea of where to get these things from. Avocados, nuts, nut butters, quinoa and nutritional yeast, to name a few.

As a dietitian, I’m not a fan of any diets. None. I do think some of them can help you lose weight quickly, but it’s not healthy and most are not sustainable. I think you have foods that you eat usually, sometimes and rarely. So for me, going vegan felt like I was going on a diet. Which of course, I did not like.

However, I thought, even if it doesn’t work out, I can at least maybe feel like what it would be like to go on a diet, and I can relate more to my clients/patients.

I told Jason my plan, and he immediately asked, “Do I have to go vegan too?”

I am not a mean wife, so I told him he did not have to, he may just have to cook his own meat, which he agreed to.

So last Saturday evening, we made the menu for the week like we normally do and Sunday after church, we headed to the grocery store.

Y’all, I was SO pumped! We bought fruits, vegetables, peanut butter, nutritional yeast, chickpeas, tons of beans, and several other items. We only spent ~$124, which is typically what we spend anyway, give or take. We even went to Sprouts afterwards and I was able to find some vegan cheese, vegan “butter” and even…vegan chocolate pudding!! If you know me, you know I LOVE chocolate pudding, so this was exciting for me!

**Spoiler Alert: vegan chocolate pudding is chunky and gross.

Now, I’ll take you day by day and tell you what I ate.

SUNDAY:

• Breakfast: We had not gone to the grocery store at this point, so I had my usual Chocolate Carnation Instant Breakfast with 10 oz. Fairlife and 10 oz. Whole Cow’s Milk
• Lunch: We decided to finish off our leftovers from the day before-chicken and veggies
• Dinner: First Vegan meal!! Jason grilled corn on the cob and zucchini, and I heated up refried beans (vegan) and corn tortillas. We had tostadas and they were delicious! Even Jason really loved this meal.

MONDAY:

• Breakfast: You probably saw my facebook/instagram post of my green smoothie that matched my scrubs…lol. It was made with spinach, almond milk, avocados and pineapple. It was GROSS. But I drank most of it to have something higher in fat to take my Symdeko medication with.

• Lunch: I was in the process of smashing some chickpeas to make vegan “tuna” salad, all the while trying not to puke, when my mom called. God bless her. She says, “Would you like some vegan Chick-fil-a?” I almost cried. “YES!” I cried. I threw the smashed chickpeas away. Didn’t even get a picture. So gross. I had nuggets and fries instead.

• Dinner: I’m honestly not sure why I thought this would be good. But I wanted to make something Jason could enjoy. So I made vegan broccoli and cheese soup. How? Cashews. We blended veggies and cashews and some other yummy items in a blender. Yea. Then stuck some broccoli in it and called it broccoli and cheese soup. GAG. Jason actually ate a whole bowl and called it “not bad”. I had one taste and I just couldn’t. Karli, my younger sister came over and she had cereal for dinner. We threw the rest out.

TUESDAY:

• Breakfast: Jason and I tried a new smoothie that a friend had sent me. It contained almond milk, ice, 1 banana, 1/2 avocado, raw cacao, almond butter and flaxseed. It wasn’t terrible, but it wasn’t good either.
• Lunch: I didn’t have time to cook anything, so I went to Chipotle and ordered a salad with sofritas- Chipotle’s tofu. It was okay. Would have been better with chicken lol.
• Dinner: We had already planned to go to Alamo Drafthouse to see Ocean’s 8 for date night, and I was not about to be vegan here! We love their loaded fries and it was Taco Tuesday. So I participated without guilt!

WEDNESDAY:

• Breakfast: No more smoothies. I stuck to an apple with peanut butter and it was fantastic!
• Lunch: I didn’t have anything to take for lunch, and I was just about done with the vegan thing, so I had chicken tortilla soup from UMC’s cafe (it is SO good) and veggies.
• Dinner: We were supposed to have black bean enchiladas…but I still wasn’t feeling vegan, so we decided to go to Timeless Cafe and use our Groupon (really good food if you haven’t been!) I got honey mustard pork chops and a zucchini/corn medley. Oh, and we got mozzarella sticks. YUM.

THURSDAY:

• Breakfast: My trusty apple and peanut butter.
• Lunch: Leftovers from Timeless Cafe and veggies and fruit!
• Dinner: I had a work dinner at Funky Door and I ordered the Chardonnay Chicken. I had hummus with veggies and their delightful cheese sticks as an appetizer, plus chocolate fondue for dessert.

FRIDAY:

• Breakfast: You already know. Apple and Peanut Butter.
• Lunch: Jason made me a delicious salad with spinach, sunflower seeds, shredded cheese and chicken. I added grapes. Plus balsamic vinaigrette. I also munched on veggies and fruit.
• Dinner: Jason and I went to Sonic around 4:30 because we really wanted a late afternoon snack. I had mozzarella sticks and we shared a large order of chili-cheese tater tots with jalepenos. I ended up taking a 3 hour nap and not having dinner. I did drink a tall glass of hot chocolate later in the evening to take my Symdeko with.

SATURDAY:

• Breakfast: officially given up on being vegan.Went back to my regular carnation instant breakfast with Fairlife and cow’s milk.
• Lunch: Jason made chicken, hashbrowns and veggies.
• Dinner: Jason made steak, sweet potatoes and a large spinach salad.

 

So there you have it. Honestly, it may seem like I didn’t try very hard. I think I could have tried harder. But really, I love dairy products SO much and I rely on them for the majority of my calories, fat and protein. It was so hard to stay away from cheese and chocolate pudding. I do really like almond milk though.

How did I feel during the week?

I probably can’t give a good answer to this since there was not a single day that I went completely vegan. I did have regular bowel movements, but I’ve had regular BM’s for a few weeks before trying this. I still had gas and some bloating, but not much. The fatigue? Honestly, I think that’s mainly related to the sleep disorder my pulmonologist thinks I may have.

So as you can see, being vegan is not for me. I’m proud of myself for attempting it and going vegan for at least every breakfast and trying some new things. I’m really proud of Jason for unintentionally going vegan with me when I did. But it was not worth it for me.

I don’t crave vegan foods. Except for fruits and veggies, which is great, but they don’t have calories or protein! I noticed my appetite decreased and I didn’t eat as much this past week. I felt nauseas every day and even had headaches every day because I wasn’t eating enough.

Obviously, this wasn’t for me and I’m okay with that.

I’d also like to point out that I still tube fed every night, and my formula is not vegan. Vegan formulas are available, but the maker of these formulas have made another formula that I have tried and the fiber source did not like me. Lol.

I love cheese and dairy products and that’s okay. I really love chocolate pudding and I’m so glad to have that back in my life! And hey, if I decide to have some vegan meals in my life, cool! But as far as making it an every day, all the time thing? No thank you.

I’d like to take a moment to say thank you to everyone that was so supportive and encouraging. I got so many texts, comments and instagram messages and I was truly grateful and overwhelmed. Y’all are seriously so awesome!

The One Where My GI Tract Hates Me

Hey friends! It’s that time where I update you on my most recent clinic appointment and let you know what’s been going on in my life recently.

Jason drove me to Fort Worth this past Wednesday for my first CF Clinic appointment of the year. I worked pretty much the whole way up while Jason drove and I annoyed him with my music choices 😉

We always eat lunch in the hospital cafeteria. Their pasta is literally so, so good. We didn’t have much time to eat lunch in the cafeteria because we had a late start that morning.

For the past month, since two days before I received my new G-J tube, I have had these really terrible stomach cramps. I get them randomly, but they can last anywhere from 10 minutes to hours on end. I can’t figure out if there is anything that triggers it, but with the cramps comes really bad diarrhea. Yea, it’s fantastic.

So of course, the night before we head to Fort Worth, the cramps hit. When I wake up the next morning, they are still there. I’m in terrible pain and can barely bring myself to get dressed. But I finally do, and before I knew it, I was throwing up. I have no idea why or what caused that, either. But after I was done, I felt better and the cramps were gone, so we left for Fort Worth with a puke bag in hand!

I managed to eat almost all of my lunch (I had to finish in the exam room) and was still feeling good. They took my weight, blood pressure and oxygen levels-all were great. My oxygen was 98% and my weight was up 2 pounds from 109 to 111. Woohoo!

My nurse, Candace, came in and asked how everything had been going. We went over current medications and I told her all about my stomach cramps. We also talked about a co-pay assistance program that I had been trying to get on for my Tobi Podhaler. This is a medication that I take for 28 days every other month to keep lung infections at bay. Well, I called my pharmacy mid-January to get it for February and the co-pay was a whopping $3,000. Yep. That’s THREE zero’s that you see. So I said “No, thank you” and told them I would wait to order until I could get the co-pay assistance. Well it finally went through 2 weeks later and I just got my Tobi today (Saturday)-thank you Candace for ensuring everything went through okay!

After speaking with Candace, I went and did my Pulmonary Lung Function Test (PFT). I put the nose clips on my nose and put the hand piece in my mouth. I breathed normal for a few breaths, took a deep breath, and blew out as hard as I could and for as long as I could. When I finally breathed in, I needed that air so bad. I coughed until my lungs hurt-what a work out! I then proceeded to do that two more times. Each time, I got 95%. My last PFT in November was 99%, so it had gone down some, but 95% is still pretty good!

While we waited for my dietitian to come in and speak with me, I made sure to cough up a small amount of mucus in my “mucus cup” so they could do a sputum culture and check for anything growing in my lungs we didn’t already know about.

Esther, my dietitian, came in and we talked all about my cramps, constipation and my issues with remembering my enzymes.

So, here’s some information that you may not have known previously about CF. If not, it will be a refresher 🙂

For a large percentage of us living with CF, our pancreatic ducts are blocked by mucus, so the pancreatic enzymes that are normally secreted in you when you eat, are not secreted in me. Therefore, I have a hard time digesting food and getting the nutrients I really need (one of the reasons why it’s hard for us to gain weight). So, we take synthetic enzymes with high-fat meals and snacks to help us get those nutrients and calories.

I will admit to anyone that I have always been terrible at taking my enzymes. ALWAYS. But I never seem to really have the issues that come with forgetting to take them. Symptoms include: greasy stools, gas, bloating, stomach cramps, etc. Sounds so fun, right? Well again, I don’t really have these issues, otherwise I would probably remember to take them!

So when I tell my dietitian that I’m having these issues, and I explain the enzyme thing, she assumes it’s because I don’t take the enzymes. But like I said, I’ve been terrible at taking enzymes for 24 years. We decide maybe I am using a “bad” bottle of enzymes. They could have been stored improperly before I got them, so she suggests switching to a new bottle. We also discuss ways to help me remember my enzymes. So far, it has worked! I keep baggies of enzymes on top of plates, bowls, and cups to help me remember and I haven’t missed any doses so far. So maybe we will see some weight gain as well!

We also discuss a new probiotic. I take culturelle on the reg to help regulate my GI tract. So I told her I feel like I’m wasting my money since it doesn’t seem to be helping. She agreed it could not be helping. So she gave me a sample of a new probiotic that has strains specifically for those of us living with CF! I’m excited to see if they help or not.

We also discussed my water intake. I typically drink 30-60 ounces of water, plus about 30 ounces of other fluids during the day. She wants me drinking at least 80 ounces of total fluids during the day, so I am working on that! I already carry a water bottle around with me wherever I am, I am just being more conscious of drinking from it.

The last thing we discussed was my constipation issues that I have had for a few months now. If you haven’t noticed, GI issues are a common thing for those of us with CF. Like for reals. I have been taking a stool softener for a couple of months, and it seems it has just stopped working. I was afraid she would ask me to start drinking Miralax… and she did. I haven’t tried it yet, but I bought some today so we’ll see… yay.

Then, Dr. Burk and Cyndy, my NP came in. The first thing they asked me was whether or not I have had the flu. I told them I had not! They were excited to hear that and said that literally every other CF patient they have seen has had it. I’m keeping my fingers crossed I don’t get it!

Dr. Burk was not at my last appointment when I was having the major breathing issues, so we pulled up my CT scan and Dr. Burk showed it to Jason and I. It was so cool!!

I got to see the veins in my lungs and what the contrast had shown was going on. He noted a small node on my left lung, and says he’s not really concerned about it, but that we would take another look at it at my yearly appointment in April. He was very happy with my weight gain and my PFT, and he agreed with my dietitian’s recommendations, so he said, “Okay! See you in three months!”

Jason and I grabbed our stuff and headed to check out. The only Wednesday Dr. Burk was available in April was the 25th-the day after my 25th birthday on the 24th. Since it is my yearly appointment, Jason and I will have to drive down on my birthday on the 24th and spend the night since I will have my Oral Glucose Tolerance Test early the next morning. So we have decided we will make it a birthday trip and eat at some of my favorite places while we are there.

One thing we didn’t get a lot of answers on at my appointment was my recent increase in coughing at night. I wake myself up during the night coughing more often than not recently, and not only that, but it wakes Jason up as well.

**Side Note: If you don’t know my husband well, he is a grumpy person when he hasn’t had his 8 hours of sleep, so the coughing isn’t greaaat for our marriage, but he is taking it well 😛

Anyway, I have also been working out 2-4 times a week recently with Tone It Up, so I’m hoping this helps me get more mucus out since I cough more when I work out. Please be praying the coughing goes away soon so we can sleep through the night!

For those who have asked, I have almost had my new GJ Tube a month, and everything is going really well! I have had zero reflux with the new tube and the new reflux medication I am on, and I am still hungry during the day. I did have a clogged tube a couple of weeks ago, so I am learning how to better care for my tube and, in turn, help my feeding tube patients better care for their tubes!

Pulmonary Embolism? No Thank You.

Hello again friends and fam.

This is a bittersweet post. If you follow me on social media, you know I’ve been having some trouble lately.

Two weeks ago from exactly today,  I was in Amarillo for work. My co-worker and I were attending an open house for a Pediatric Hospice center. It was such a cute place! This hospice center was in what used to be a bed and breakfast. We were on the tour and I had just climbed a flight of stairs when I couldn’t catch my breath. I stood there, huffing and puffing, and eventually had to bring out my Xopenex inhaler to help me catch my breath.

I honestly didn’t think too much about it. However, over the weekend, my shortness of breath became worse and it turned into chest pain and chest tightness. So Monday morning, I called my doctor’s office and told my nurse what was going on.

It wasn’t too long after that, my Nurse Practitioner, Cyndy called me and wanted me to start doing my treatments twice a day instead of once a day (which I had already started doing over the weekend). Wednesday (the day before Thanksgiving), she called back and asked if I had started on Spiriva, a bronchodilator that can help reduce flare-up symptoms. I said I had not. Apparently, they forgot to tell me they had called it in to my pharmacy. Haha, oops! So I picked it up and started it that day.

I gave Spiriva a few days to work, and when it didn’t, I texted my Nurse Prac and told her I wasn’t doing any better. My cough had increased, my breaths were shallow and it felt like someone was sitting on my chest. So, my NP called in a small dose of Prednisone, a steroid to help treat inflammation. We are always nervous for me to try new meds because I am SO sensitive to them. But, I was kind of excited to start the prednisone because I had noticed my appetite had decreased some and I knew steroids can cause weight gain and the munchies-all good things for me!

Sunday night, I was sitting on the couch doing my treatments. During my treatments, I felt like I had just run a marathon. I was breathing very fast and was unable to catch my breath for approximately 30 minutes. I became very concerned and knew that my NP had told me to go to the ER if it got worse. So, I called my mom in tears and told her what was going on. We decided I would not go to the ER; they would probably only give me a breathing treatment and I wouldn’t get any sleep there. Well, I ended up not getting any sleep anyway. Apparently, prednisone causes insomnia. Because I had received the steroid that afternoon and took it as soon as I got it, I was awake alllll night. It got better when I took the Prednisone in the morning 🙂

Monday, I had a dentist appointment for a cleaning and a filling. I walked in and my dental hygienist commented that I didn’t look like I was feeling good. I told her what had been going on, and she was great to inform my dentist that I was having trouble breathing. Before the filling, we checked my oxygen levels. They were hovering around 94%, which is still pretty normal, but for me, I am normally at 99 or 100%. My blood pressure and heart rate were high as well. All of this told me that my heart and lungs were working harder to get me the oxygen I was needing.

So, they put the nitrous mask on, and I do NOT like feeling out of it. Eventually, because I was laying down and was already having trouble breathing, it got too much for me and I started to hyperventilate some. Before he started the filling, my dentist took the nitrous off and gave me oxygen instead. This allowed me to calm down and bring my oxygen levels back up. It was not a fun experience.

I then let my NP know that I was still not doing well. We decided to wait until the next day (Tuesday) to see if I needed to come into clinic on Wednesday.

Well, Tuesday came around and I felt worse. So we decided it would be better for me to come into clinic and let them see me before the holidays.

**Side note: Jason and I bought a new car Tuesday night! I loved having my Toyota 4Runner, but we bought it when I was working at UMC every day. Since having my new job these last couple of months, I am in my car a lot more and have learned just how terrible gas mileage the 4Runner gets. So, we decided to trade it in for a car with better gas mileage. ENTER my new 2017 Nissan Murano! I LOVE it and am so grateful the Lord allowed us to get a car that will better fit me and my new job.

Wednesday morning, my dad came and picked me up at 6:30 am. He got to drive my new car to Fort Worth (he said he really liked it). We arrived and ate lunch at the hospital cafeteria (I love their food). I then went for my chest x-ray. Afterwards, I went into my appointment.

My oxygen was 98%, but my heart rate and blood pressure were high again. My weight was 109.5 pounds, which was stable from when I was at clinic last month (THANK YOU TUBE FEEDING). Now, the next test really blew me away (quite literally, LOL). My lung function test was 99%. WHAT?! My last one in October was 98%. I couldn’t believe it. With all of the issues I had been having, I was sure it was going to be 20-30% lower. I started crying and my respiratory therapist had to calm me down. I told her what had been going on and how I had just been really nervous for my PFT.

I took a short nap while I waited for the doctor and my NP to come in. I was seeing Dr. Gilbey because Dr. Burk was not in the clinic that day. I had seen Dr. Gilbey before and I think he is a great doctor! So, when he had heard mine and Cyndy’s perspectives on what had been going on with me, we started talking about what to do and what could be causing it all.

Turns out my chest x-ray looked good, but he wanted me to get a contrast CT Angiogram done to check for blood clots (pulmonary embolism). All my symptoms lined up with this, so that was scary!

He also said it could be caused from aspiration (inhaling food into my lungs). I told him the issues I have with reflux and keeping my head of bed elevated when I tube feed at night (it is necessary to keep your head elevated at least 30 degrees to decrease the risk of aspiration). So, it could be possible that I refluxed and then aspirated on it and that caused my airways to be inflamed and caused the increased cough as well.

The third possible cause is the awesome Lubbock wind/weather. It’s Ginning season, so there could be an allergen that I inhaled that is also causing the symptoms. However, I’m not having any other allergy symptoms at all, so we didn’t really think this was the true cause.

So, I headed down to radiology to get the angiogram completed.

After registering, my dad and I were taken to a waiting room where I filled out some paperwork. A nurse came by to get me and we went to another room for him to place the IV where the contrast would go in.

Now, most of you probably know that I am an extremely hard stick when it comes to needles. So I let everyone know that and I make sure and tell them they are only allowed to poke me in my hands because there is nothing for them in my arms. Most of the time they try to argue with me and they want to look at my arms anyway. Hello, I’ve been doing this my whole life, I think I know best! So, I picked out a vein in my right hand and told the nurse he could use that one. He decided he would use a cool tool called VeinViewer that would allow us to see my veins! (pics below)

He ended up using the vein I had originally picked out 🙂

He was good at his job though, because he got the IV with the first stick!

Then, my dad and I waited over an hour to actually go and do the test. We were brought into a room where this giant machine was (pic below).

I laid down on the machine bed and they started flushing my IV with saline. IT. BURNED. So they called the nurse who had placed it back in and we took a few minutes to make sure the IV was working. They flushed over 30mls of saline through it and it had blood return, so we knew it was working. Eventually, the stinging went away and it was just a cold feeling.

Next, they laid me back down and the bed was moved to where my chest was in the machine so they could take pictures of the veins and check for blood clots. When they started the contrast, I just about jumped out of the machine. I screamed. My entire right arm was immediately in intense pain and I was crying and struggling even more to breathe. The nurse in the room yelled for them to stop the test and the contrast. They pulled the bed out and had me sit up so I could breathe better. They called in a radiologist to check my IV again. The nurse who had been watching the IV said that once the contrast went in, my hand had blanched and turned a completely different color. They had been infusing the contrast at 4mls/second, so it was decided that was too much for my venous system to handle and the rate was cut in half.

That made the test bearable and I made it through. By this time, it was about 4:45 and my clinic was closing. So we were told to stay in the radiology waiting room until we got the results. If it was positive for a pulmonary embolism, I would need to keep the IV in and be admitted. If it was negative, they could take the IV out and I could go home.

My dad and I waited 30-45 minutes for my Nurse Prac to call and tell me that I do NOT have a pulmonary embolism. The angiogram showed I have mild bronchiectasis, which is damage to the airways from CF. She expected to see this. It also showed I have atelectasis from mucus plugs, but this is normal for someone with CF. So the bottom line is, the angiogram came out normal for me.

So we think all of this is mainly caused from aspiration. THANKS A LOT REFLUX.

Dr. Gilbey recommended I switch from Ranitidine to Nexium to help with the reflux and to take Claritin or Zyrtec to help with symptoms in case the Lubbock weather is contributing at all.

So, my dad and I spent 6.5 hours at Cook’s to find all of this out. We got home at 11 pm last night.

I am so thankful I did not have to stay and be admitted, but man am I frustrated.

Writing this post this morning, I am still struggling to breathe. My NP called me to check on me this morning and thinks it will all go away with time. It probably will.

But please remember, I’ve already been struggling for two weeks. How much longer will I have to struggle to BREATHE? I have such a great care team in Fort Worth and I am so grateful for them. I just wish we could have found a quick fix.

Doing treatments three times a day did nothing for me, so I’m going back to my regular once-a-day regimen and I will see what happens. I’m going to pick up some Nexium today and I’m starting to taper off the Prednisone.

SO. Please, please continue to pray for me. I am feeling a little disheartened by all of this and that I’m back home with the same problems. Praying for answers and that all of these issues go away.

Thank you all for your support and encouragement. It means the world to me!

When Life isn’t Fair

Since I was little, I’ve always loved to write. My family can attest to that. Since I started this blog a few years ago, I’ve found healing when I write. Whether I write it all out and don’t post it, or if I’m journaling to God, or if I write and do post it, I always find healing. Today is no different.

We’ve all had those days where life just isn’t good to us. Where it’s hard to get out of bed in the morning, or you lay in bed crying your eyes out.

I’ve had a few of those days recently.

If you follow me on Facebook, you may have read a post I posted this past Saturday evening. I got a call from my mom that night telling me Christian Lincoln had passed away suddenly. I was heartbroken. I couldn’t breathe. You see, Christian had cystic fibrosis, like me. She had just gotten out of the hospital not long ago. She was my cyster.

Not only was she my cyster, but she was also my great cousin. We told everyone we were cousins, because what is a great cousin anyway? We weren’t close like you would think cousins would be. That’s due to us both having this same disease. As most of you probably know, people with CF can’t be around each other in order to keep the other safe from any bugs growing in their lugs. We’re contagious to each other, but not others. CF is an isolating disease.

When someone with the same deadly disease as you passes, it’s a feeling like none other.

Memories flooded me.

When I worked at UMC as a dietitian, there would be times I saw Christian in the hallway or the cafeteria from afar. We would wave and smile at each other, and move on. One time when she was in the hospital, I brought her chocolate cupcakes and had one of my fellow dietitians deliver them to her room while I waited outside. There were a few times when Christian was admitted to my floor. Of course, I couldn’t go and speak with her, but I had one of my interns or my fellow RD’s visit with her and make sure she was okay. We texted about her wedding plans and we texted when she was in the hospital.

Since we never hung out in person, I won’t physically miss her presence.

But, I’ll miss that someone to talk to. That someone who knows exactly what I go through because she went through it too. I’ll miss her positivity when I was in a negative state of mind.

At her celebration of life today, many people there talked about CF. There was a poem read about CF that hit home for me. I wish I could remember it so I could recite it here.

Anyway, the point is, when someone you know dies from CF, it’s really hard not to picture yourself in their shoes.

It’s hard not to see yourself and imagine that you’re next. It’s hard to realize that you have the same disease that took another’s life.

But I can’t keep thinking like that. There is a positive side to this negative tragedy.

Christian went to heaven and I know she has perfect lungs and can finally breathe normally. Now I’m jealous! She got to meet Jesus and is not feeling anymore pain. Praise God!

So, when life isn’t fair, let’s remember that there’s always a silver lining. There’s always a positive outlook, you just have to find it.