It’s Not Just About the Lungs

Well friends and fam, here’s the blog post you’ve been waiting for! The past few weeks, I’ve been feeling more tired than usual and short of breath. For me, feeling short of breath is completely not normal. When the fatigue set in and was not alleviated with 7-7.5 hours of sleep every night (my normal amount of sleep), I knew something was wrong.

But that’s not all.

Right before I got married, about a year ago, I started having some bleeding, pain and straining with my bowel movements. Yeah, yeah, that’s gross. But it’s real life and honesty is my best policy.

Immediately, I called and spoke with my nurse who told me it was most likely internal hemorrhoids and recommended a stool softener. At the time, I was in a place where I was not about to add more medications to my daily regimen. I still am, for the most part. But, I chose not to take the stool softener and just drink more water/eat more fiber. The bleeding and pain went away within a couple of days.

Unfortunately, I had bleeding/pain/straining a few more times over the last several months. The third time, I added the stool softener and saw a dramatic improvement, especially since I had also been having constipation, which is very common in CF patients.

I’ve always tried to keep my bowel movements normal with drinking plenty of water/fluids during the day and consuming plenty of fiber with the fruits and vegetables I love so dearly. I’ve said this before, but sometimes, CF doesn’t care when you do things the right way. It has it’s own way of thinking.

Now that I’ve been on the stool softeners about a month and a half and have seen improvement, you can imagine my surprise when the bleeding, pain and straining returned with intensity this past weekend. So Monday morning, I called my nurse again and told her how I was feeling-tired, crappy, short of breath-and asked if there was something else I could do to help with GI symptoms. She let me know she would call me back after she talked to my team.

Later that afternoon, I got a call from my NP’s cell, which is never a good sign. I answered and she let me know they wanted me in clinic the day after next. I was shocked. It’s been a long time since I’ve been asked to come into clinic earlier than expected. I spent the next day mentally preparing to be hospitalized for IV antibiotics. Jason and I packed an overnight bag with everything we needed, anxious for the next day to come.

We headed to Fort Worth early Wednesday morning, ate lunch at the hospital, and went into my appointment not knowing what to expect.

My weight was down, but only by a pound, which surprised me. When I did my PFT, I blew a whopping 97%, down only 3% from my last PFT 2 months ago. I had expected a 10%, or even a 20% drop with how I had been breathing lately. My respiratory therapist commented that I “have something in there”, but it didn’t seem to slow me down.

It was definitely an awesome, God thing that my PFT was so good, but I have to admit, it really confused me. Why am I short of breath? Why I am tired?

When Dr. Burk came in, I relayed all of my symptoms to him. He wasn’t too concerned, looking at my numbers. He commented on how good my cough is. When we talked about my fatigue, he gently reminded me that living with CF is and can be exhausting.

Not what I wanted to hear.

I wanted a solution. I wanted to hear that he knew how to fix it.

That’s not what I got. What I got, was, rest.

Me? Rest?

I’m a go-getter. I work harder than anyone so that CF doesn’t stand in the way of me achieving my dreams. I thrive on being busy and getting things done. I love being productive!

I’m still learning though, that God created rest, and therefore, it is good.

“The Lord replied, ‘My presence will go with you, and I will give you rest.'” Exodus 33:14. Something I re-posted from Proverbs31 ministries the other day said, “Rest isn’t just what God did. Rest is who God is.” God rested, so shouldn’t I?

So, I’ve decided to start pursuing rest, intentionally. Unfortunately, this means more time at home and less time outside of the house. It means not overdoing it and putting my health, and not my social life, as my first priority. I’m excited to pursue rest, but I know it will be hard.

So now, back to the GI symptoms.

Since we were all sure I had internal hemorrhoids, my doctor made sure to check. Unfortunately, he didn’t find any. So then he made the recommendation that I see my gastroenterologist about getting a colonoscopy. He said the bleeding could be coming from a polyp in my colon, or from a rectal fissure tear. He isn’t sure exactly.

It also seems that my weight has hit a plateau. Of course, this has all been thanks to the problems with my possible gastroparesis (my stomach doesn’t empty like it’s supposed to). I haven’t been able to tolerate 3 cans of formula, only 2. My doctor asked if I could bolus feed to get more formula in a shorter amount of time. Unfortunately, I learned a long time ago that I throw up every time I bolus feed. So, Dr. Burk suggested I complete a gastric emptying study with Dr. Hancock, as well as the colonoscopy, to check whether or not I have gastroparesis for sure.

I was apprehensive about doing the study, because I’m unsure if it would change how I am currently treating my symptoms. But, Dr. Burk says that if the gastroparesis gets bad, I may need a tube in my jejunum (small intestine), rather than the one I have now in my stomach. This is because with J-tubes, the gastroparesis wouldn’t bother me, or how much formula I could tolerate, so I could gain weight, rather than be stable at where I am at. Sounds like a good thing, right?

I have a different opinion.

They don’t make buttons (like what I currently have) for J-tubes. Meaning, if I got the J-tube, it would stick out a good few inches. A literal tube would be hanging from my stomach.

Example A:

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Nope. No thank you.

I’m truly not very self-conscious about my button. It’s close to my skin, it doesn’t bug me and it doesn’t restrict the type of clothes I wear.

But this? Not close to my skin. It hangs down and would definitely restrict the type of clothes I wear. I know I would be self-conscious about something like this.

So I’m going to visit Dr. Hancock tomorrow afternoon about the colonoscopy and gastric emptying study. I’m not sure what will happen after that. My mind can jump to all kinds of conclusions and assumptions. But, I always try to keep in mind that my God has me. He has a plan for me. If that means having a tube hanging from my stomach and wearing loose clothes, then so be it. If it means continuing to live my life, in spite of CF, I can do that.

So as you can see, CF isn’t always about the lungs. Sometimes, it’s about the GI system too, and this is something I am just starting to truly learn.

I’m grateful for your constant prayers and loving support!

 

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Antibiotics: Hard Pills to Swallow

These last couple of weeks have been a doozy for the Robison household. A couple of weeks ago, I came home from work with a constant need to pee. I would pee, and five seconds later I felt like I needed to go again. I felt a lot of pressure in my lower abdomen as well. I didn’t have to google the symptoms to know what I was experiencing-my first urinary tract infection (UTI).

The next morning, I woke up with blood in my urine. It freaked me out, to say the least! As soon as the CF clinic was open, I called to let my nurse know. It wasn’t long before I had a urinary analysis scheduled the same day.

I had started taking over-the-counter Azo pills to help with the symptoms, so my pee turned bright orange. The next day, my nurse prac called to confirm the UTI and to talk about treatment options. See, I am very sensitive to medications, but especially antibiotics. When I have a CF exacerbation, I am normally placed on ciprofloxacin and bactrim. With UTI’s, cipro is a common antibiotic that is given. However, if taken too often, I can develop a resistance to it and it won’t work for me for anything. So our next step was Amoxocillin/Augmentin. My nurse prac was nervous because of my sensitivity, so she cautioned me to carry benadryl with me in case something happened.

I started the augmentin, and a couple of days go by before my nurse prac calls me again to tell me I am growing E. Coli in my urine. I was floored. She said it was very common, and was unsure on what caused the UTI. She asked how I was feeling-I told her I was back to my normal self and all of the symptoms were gone. She said that was good, but augmentin is actually not resistant or effective against E. Coli. But, because of my sensitivity to medications, she said we would keep me on the augmentin and just do a repeat urine analysis at the end of the two week antibiotic stent.

I have been on culturelle (a probiotic) for a few months now.  Unfortunately for me, even a week of augmentin is not good for my gut. This past Friday, I started having on and off stomach cramps. They weren’t too bad. By Monday night, I was on the floor, in tears, with severe cramps. I couldn’t move. They would let up for a few minutes, but then I was back on the floor, doubled over in pain. On top of that, I had been experiencing severe diarrhea all weekend. Thankfully, Jason was home to help me to bed. We considered the ER, but we knew it was the augmentin. I texted my nurse prac to let her know what was going on and see if she had any advice. She told me to stop the augmentin and to call Dr. Burk in the morning. She told me that the symptoms I was having were typical of augmentin.

Jason held me as I attempted to fall asleep.

The next morning, I woke up with cramps-not as bad as the ones from the night before, thankfully. I went to work with my heating pad and called and spoke with my nurse. She spoke with my doctor and told me to watch the symptoms since I stopped the augmentin.

The cramps have ceased, I’m just waiting for the diarrhea to do the same. Before the UTI, I had started having other issues with my digestive system that I also spoke to my nurse about. So today, I bought colace, a stool softener.

These may seem like small issues, and really, they are.

But when you have CF and know that these are common issues for other CFer’s, it’s a hard pill to swallow when you experience them for the first time. You see, I’m already on two other antibiotics chronically, meaning I don’t have a choice. One I’m taking to decrease the inflammation in my lungs, the other I take every other 28 days to help with lung function. So you can imagine what adding a third antibiotic does to me.

Sometimes, CF is a tiring disease to live with. I’m tired of worrying about what new meds will do to me. Sometimes, I’m just plain tired.

This past weekend, Jason was at a bachelor party, so I ran a lot of errands by myself that Jason and I normally do together. I came home from going to the grocery store and was wiped. I woke up the next day with sore EVERYTHING. It was quite comical, but again, a little hard to swallow.

Cystic fibrosis is a progressive disease. You can’t stop it. No matter if you do everything you’re supposed to. People die. Now, that’s a lot for just a blog post, I know. But it’s the truth. Unless a cure is found, CF will most likely take my life one day. Of course, I plan on doing everything I can to stop that, and that includes keeping a positive outlook and trusting in the Lord and His plan for my life.

P.S. I did my repeat urine analysis yesterday, so let’s hope the E. Coli is gone!

What It’s Like to Be the Partner of Someone Living with CF

IMG_1657If you aren’t already aware, May is Cystic Fibrosis Awareness month. Originally, I was going to have this post include 31 facts about CF (one for every day of the month). But, I decided I wanted to do something more unique, I just wasn’t sure what. Then, I came across a post where a fellow CFer did an interview with his girlfriend about how CF affected her, and thought this was a perfect idea!

I sat down with Jason a couple of nights ago and asked him 10 questions. It’s hard to get Jason to open up sometimes, so I did my best to encourage him with his answers when necessary 😉

So, here is Jason’s perspective on what it’s like to be a husband to someone living with CF. Enjoy, and happy CF awareness month!

  1. Do you recall when I told you about my Cystic Fibrosis? What was your reaction when I told you about having my CF?

I remember it was a long time ago. I’m pretty sure I didn’t have a big reaction because I didn’t know what it was. We were just friends at the time, but I remember asking you questions about it and you pretty much told me the basics.

 

  1. How does my having CF affect your life? How do you feel it affects decisions you make or feelings you have on a day-to-day basis?

Obviously it’s a big factor in my life because I need to provide for you. So I’m always thinking about insurance, jobs and making sure I encourage you to do treatments and eat more-stuff like that-but not be over-bearing. I have to think about certain aspects if we are going on a trip or things like that. Sometimes it makes me scared if you’re sick or not feeling good.

 

  1. What are the hardest and best parts about my having CF?

The hardest part is the fact that you will always have it and you will always have to take extra care of yourself and that it can hinder things you want to do. The best part about you having CF is all of the opportunities that you have received to help others and encourage them. That’s pretty cool.

 

  1. What is something you wish I would do differently in sharing my life with CF?

I don’t know. Ever since you got out of school, you’ve been really good about everything. You’re really good at taking your pills, doing your treatments and doing your tube feeds.

#winning

 

  1. What do you think is the most important part of being a partner of someone living with CF (or any chronic disease)?

You have to always be supportive and you have to trust that they know best, most of the time.

 

  1. How do you stay positive in facing life with me having CF? Are there tools or strategies you use?

I just remember that you’ve had this for a very long time, but that you’ve always had pretty good health, which is nice. Prayer and leaving it in God’s hands helps cope, as well as the fact that you take good care of yourself; I don’t have to worry too much.

  1. Am I the first person you knew with CF?

Yes, for sure.

 

  1. What advice would you give someone who is starting out in a relationship with someone with CF?

Don’t let it be a detriment to how you view the person. Talk with them about the illness and ask how it affects their life. Ask how they feel it limits them or doesn’t limit them, and make sure you understand the disease.

 

  1. How do you tell other people in your life about me having CF? What have people’s reactions been?

Whenever it comes up and I have to tell people, I normally just briefly explain it-the breathing issues and GI issues. Most people don’t have too big of a reaction because most people haven’t heard of it.

 

  1. What impact has my CF had on your life? Have you had to change your life at all to accommodate certain aspects of CF?

I take off of work to drive you to your doctor appointments and I have to make sure we are being diligent about saving money for health insurance, medications and clinic visits. A big thing is that we are thinking of adopting instead of having our own children.

 

After going through these questions with Jason, he made me realize just how much he truly cares for me and loves me. What a blessing to have this man for my husband!

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Peace Like a River

il_570xN.1063735674_nbx7A hymn that often comes to my mind is one that I write about often. But I never get tired of it! “It Is Well with My Soul” by Horatio G. Spafford is one of my favorites. Horatio was a very successful businessman in Chicago who has a story much like that of Job’s. His only son died right before a financial disaster. He then planned a sort of vacation for him, his wife and his four daughters in Europe. Plans changed when he had to stay in Chicago for a few days longer, so he sent his family ahead of him and was expected to follow a few days later. Unfortunately, the ship his family was on was struck by an English vessel and sank in 12 minutes. The Spafford daughters did not survive. Mrs. Spafford was able to send her husband a message letting him know that she was alive, but their daughters were not. Horatio wrote this memorable hymn on his way to meet his grieving wife.

“When peace, like a river, attendeth my way,

When sorrows like sea billows roll;

Whatever my lot, thou hast taught me to say,

It is well, it is well with my soul.”

I love this story. Horatio lost all of his children, and in the midst of grief and despair, he still chose to praise his Savior. This is the hope for my life; that no matter the situation or circumstance, I also choose to see it through the Lord’s eyes.

As I have matured and grown older, I feel I become better at this. Living with CF, it is hard to take any day I have for granted. I have learned to see living with this terminal illness as a blessing. Because I trust in the Lord and His plan for me, I feel peace a lot of the time.

Just this past week, I had my yearly appointment at Cook Children’s with my CF care team. Although I go to see them every three months, the yearly involves seeing more people, running more tests and just generally spending more time at the hospital. As you can imagine, this might be a time when my peace might falter. But honestly, I felt a lot of peace before the appointment.

Usually, Jason and I just make a day trip to Fort Worth. But I am required to do an oral glucose tolerance test (OGTT) at this yearly exam, so we spend the night the night before. The OGTT test is done to test for diabetes, or even just the risk of diabetes (pre-diabetes) and is done very early in the morning (mine was at 6:45 am) because you have to be fasting for it to be done correctly. They take your blood when you get there for that fasting blood glucose, you drink an orange drink that is 75 grams of carbohydrates, wait two hours, and then they take your blood again. It is joyous.

The past couple of years, I have learned what to do before tests like this to get my blood flowing so they can get blood in one stick and it not be an issue. So Jason and I woke up around 5:15 the morning of the appointment and I worked out in the hotel gym (Jason watched, haha) so my blood was pumping.

Once at the lab, the phlebotomist printed out all of the orders for each test they wanted done. She took a total of 9 vials of blood from me to check my vitamin levels, etc. I also did a urine analysis.

During that two hours of waiting for the second blood draw, I was able to take a nap. I was grateful for that little bit of rest!

The second blood draw was complete in just a few minutes, so Jason and I were then able to head back to the hotel for a late breakfast.

We ate lunch in the hospital cafeteria like normal. They have this amazing pasta dish that I get every time! Once done with lunch, we headed to my appointment. My weight was down a few pounds, but once I did my PFT (lung function test), things were looking up! I blew a whopping 100%! Normal PFT is 120%, and I haven’t had this high of a lung function in about 5 years. I was blown away (pun intended).

I met with Dr. Cox, an endocrinologist due to my thyroid levels being high at my last appointment. She had looked at blood work I had completed a week before, and determined that the first test was just “funky” and that I didn’t need to worry about hyper-/hypo-thyroidism. I was relieved!!

My nurse checked my blood sugar level, which they don’t normally do, and it was 57, which is pretty low! I was feeling shaky and a little dizzy, so it made sense I was low, but I wasn’t sure why since I had just consumed a lunch full of carbs about an hour before. They didn’t seem too concerned about it, so we went on with the appointment.

I met with my dietitian, who was concerned because of the weight loss. I had switched to the new Peptide-based Kate Farms formula and was unfortunately, having a LOT of GI issues-stomach cramps, diarrhea and the like. I was really upset about it, because Nutren 2.0 had given me a lot of reflux and nausea, and the Kate Farms formula was really helping with that. But, my dietitian and I determined it wasn’t worth it if I was losing the weight. So I am now on TwoCal HN, which is the equivalent of Nutren 2.0, it’s just made by a different company. So far, so good!

I wasn’t able to see Dr. Burk, so I met with another doctor, Dr. Gilbey, and my NP Cyndy. Jason and I had previously chosen to talk with them about taking me off of the antibiotic that I had been on the last 6 months, seeing as how it is expensive and easily causes GI issues. Dr. Gilbey and I agreed that I could trial being off of it, but that if things got worse, I would get back on it. Jason and I decided we could live with that.

I also requested a new portable vest! This is something that I had previously been looking into. My current vest is great and works fine, but I am required to be hooked up to it in one spot for twenty minutes. Now, this may not seem like a big deal; but to someone who has to do this every single day, plus other treatments and live a life, it’s a bigger deal than you may think. So, the new portable vest would run on batteries and would allow me more freedom while doing my treatments. I hope to get it this summer!

A few other people on the care team came to speak with me about making sure my medications were affordable, new research and trials I could participate in. Soon I was allowed to leave and go and do my chest x-ray. The x-ray took maybe 5 minutes, and then Jason and I were headed home.

Last week, my dietitian called to let me know my vitamin levels had come back and were actually high. She wondered if I had been eating a lot of foods rich in fat-soluble vitamins, and I told her I was. She decided I should take my multivitamin once a day instead of twice a day and we would check levels again at my next appointment. My nurse called later to let me know that my chest x-ray was normal, but that my OGTT was a little abnormal. My fasting glucose level was normal, but my two-hour glucose was high, which indicates an increased risk for diabetes. This is not something I am worried about though, as this has been the results of my previous OGTT’s over the past few years. I’ll always have an increased risk of diabetes while I have CF.

So now you know how my last appointment went. As you can see, I really had nothing to worry about, so I am so glad I trusted in the Lord and chose not to worry! I am learning to trust in the Lord and His timing with all things. I hope that it will always be well with my soul; no matter if I have peace, or if the sea billows are rolling.

It is Well

Last night, I was standing in line at a concession stand to buy two waters-one for me and one for my mom. We were at a Mercy Me concert for a mommy/daughter date. As I stood in line, I scrolled through my Facebook feed like every other person, trying to look like I wasn’t bored (the line was extremely long). It wasn’t long before I saw a post about a fellow Cyster (other women with CF are “cysters” and men with CF are our “fibros”) in Lubbock who passed away early yesterday morning from CF complications. I was in shock.

This sweet friend was just a few years older than me. We had never met in person, due to the infectious risk of both of us having cystic fibrosis, but we had talked several times over social media and were able to connect that way (as most of us with CF are forced to).

It never gets easy. It’s never easy losing anyone, whether it’s a family member or a friend. But sometimes it seems it’s even harder losing someone that has the same chronic illness as you. It’s easy to see yourself in that loss. It’s easy to think, “That could be me” and wonder when it will be your turn.

It’s a hard road that no one wants to walk down, and one that no one should.

I’ve had a few people tell me they’re not sure how I do it. How do I still put my faith in a God that allows me to have this illness and suffer from it? That allows friends with the same disease to pass so young, with such full lives ahead of them? It’s a hard thing to swallow sometimes.

That’s why it was so easy for me to fall into depression just a few years ago, because I was tired of dealing with CF.

So how do I put my faith in a God like this? Why did I eventually choose a more optimistic perspective on living with a disease that will most likely take my life one day?

Because I know God created me for a higher purpose. I’m here for a bigger reason than myself-we all are.

John 11:4 says, “When He heard this, Jesus said, ‘This sickness will not end in death. No, it is for God’s glory so that God’s son may be glorified through it.'”

I believe fully that with or without CF, I am here to glorify God. I am here to further His kingdom, in whatever way God has planned for me. My desire is to be His faithful servant.

Does it get hard sometimes? Duh. God never said living a Christian’s life would be easy. We know that many Christians have been persecuted, simply for doing God’s work. In fact, I consider cystic fibrosis to be my thorn. In 2 Corinthians, Paul talks about his thorn. 2 Corinthians 12:9-10 says, “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Wow. Such a powerful couple of verses. Paul also tells us that he begged God three times to take away his thorn. But God didn’t. Could He have?

Our God created us. He breathed life into us. If you’ve read the bible, you know God can and will do anything He wants to. He is almighty, powerful, and sovereign. Can He take away our thorns? You bet He can. Does He choose to take away our thorns? Sometimes. But sometimes He doesn’t.

There are many thorns the Lord has graciously removed from my life. Cystic Fibrosis is not one of them. It definitely sucks.

At the Mercy Me concert, the performed a song I had not heard before called, “Even If”.

“It’s easy to sing, when there’s nothing to bring me down. But what will I say, when I’m held to the flame, like I am right now?”

But the most powerful words are in the rest of the song:

“I know You’re able, and I know you can, save through the fire with Your mighty hand. But even if You don’t, my hope is You alone. But God when You choose to leave the mountain unmovable, give me the strength to be able to sing, it is well with my soul. I know the sorrow, I know the hurt, would all go away if You’d just say the word. But even if You don’t, my hope is You alone. You’ve been faithful, You’ve been good all of my days. Jesus, I will cling to You. Come what may, ’cause I know You’re able. I know You can. It is well with my soul.”

Even though I know He can, if God never chooses to take away the burden of cystic fibrosis, I will always choose to serve Him. Sometimes it is scary. It’s hard living a life, knowing that your death could be sooner than you wanted. No one wants a life expectancy of 38. But that’s mine.

The Lord has been gracious and so good to me. I am confident I will live longer than I am expected to, because I’ve already done it once! When I was diagnosed 23 years ago, I was only given 18 years to live. The Lord is so good.

It is well with my soul, because I know who my God is.

Pressing On

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Well friends, it’s that time again! Time for an update. My last update was a few months ago as my last appointment was disappointing, to say the least. I was having a difficult time with my tube feeds and was therefore, not gaining weight. I was having so much reflux and was forced to decrease the volume of my feeds at night. Fortunately, I figured out a way to increase my calories without forcing myself to eat so much food.

It’s so much easier to drink calories than it is to eat them, so I started making smoothies! Jason helped me a lot by making them the night before using my recipe. We used fruit, ice cream, whipping cream and whole milk. Each smoothie was 850 calories and about 24 ounces. I drank one a day for several weeks until I honestly just got tired of them. I stopped drinking smoothies for a couple of weeks and started to see the weight drop little by little.

I don’t think anyone understands how frustrating it is to consistently lose weight when you already try to gain it. Then to be even more frustrated when you have to be consistent with high calorie meals and snacks. Sometimes, I just want to eat an apple without peanut butter, or eat my cucumbers without cottage cheese or ranch. I crave fruits and vegetables, and I hate that I do. Thankfully, I have enough information that I can still have my fruits and vegetables when I want them. It’s just hard sometimes 🙂

In December, you may recall that I announced my desire to write a cookbook for the CF community. I was so excited about it! I did a lot of research on it after I passed my RD exam right before the new year. I talked to a contact at TIME Magazine who gave some really great pointers. But I soon realized that I wasn’t motivated in the least to write this cookbook. Plus, I’m not one to really create my own recipes-I enjoy taking others’ recipes and modifying them to make them higher in calories. I began thinking about and researching all of the recipes that I thought I would want to include in my cookbook. I immediately became overwhelmed and my motivation vanished. But, the desire remained.

A couple of weeks ago, I met with a Registered Dietitian at the Health Sciences Center about a possible job opportunity. Although the potential job wasn’t for me, she lent me a book titled, “A Dietitian’s Cancer Story”. I had told her about my cookbook idea and how unmotivated I was. In this book, the dietitian who wrote it talks about her story living with her cancer diagnoses. But, she also includes nutrition information, shopping lists and much more. I am so thankful for this RD that gave me a new perspective! Now, I am not writing a cookbook, but a book, for the CF community. It will be my story of living with CF, but will include nutrition information, tips and tricks and so much more for those living with CF. I’m not sure if there is anyone more qualified to write this book than me, a Registered Dietitian living with CF.

Now, about my latest appointment at Cook’s.

Jason and I drove in about 11:30 am Wednesday morning and ate lunch with a friend in the hospital cafeteria. When I was staying at Cook’s for my first hospitalization (that I can remember), I was in high school. Every day for at least one meal I had a Starbuck’s frappuccino from a Starbucks in the hospital and a pasta dish from the cafeteria made with penne pasta, chicken, garlic, spinach and alfredo sauce. Fortunately for me, they still have this delicious dish! I get it every time I come to the hospital now.

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I was feeling really confident about this appointment. I was right to feel that way, because I got a great checkup! My weight was up to almost 112 pounds and my PFT was up to 92% from the previous 85%. My doctor was extremely happy. I met with my RD as well, who I consider a good friend. She was happy with my weight gain and was excited to hear about my book idea. She agreed to be a sounding board for me for things I don’t feel I know much about, such as CF infant nutrition and CF-Related-Diabetes (CFRD). My RD is also expecting her first child, so that was extremely exciting to hear about!

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I told my doctor that I had just accepted a position as a full-time RD at UMC, and he was very happy for me! I was worried that he might have concerns about me working in the hospital due to the possible high risk of infection. I think, because I am doing so well and will spend most of my time in an office charting, he trusts that I will be okay.

One thing though. A few weeks ago, Jason and I completed a health screening at his work place for our insurance. We got the results of our blood work a week before I went to Cook’s and it showed my TSH (thyroid-stimulating hormone) to be high, which could indicate hypothyroidism. This makes a lot of sense to me because I have been extremely fatigued lately and my body temp is really “off”. I showed the results to Dr. Burk and explained my symptoms, and he wants my TSH re-checked, along with my T3 and T4 levels. He wants these checked a couple of weeks before I go back to Cook’s in May. I will then meet with an endocrinologist that works specifically with CF patients at Cook’s to see if next steps need to be taken. Of course, we are hoping they don’t need to be! Honestly, I would love an answer for my fatigue that seemed to have come out of nowhere, but this could just be from CF. Having a disease that causes your lungs to work extra hard can be tiring I guess!

So overall, it was a great appointment! I have stopped with the fruit smoothies, just because I got tired of them, and am instead drinking a milkshake made with Carnation Instant Breakfast (chocolate), whole milk, whipping cream and ice  cream. It’s so good that I actually crave them and sometimes drink more than one a day! These have 740 calories so I am getting a lot in, especially with the extra 1,000 calories I am getting from my new Kate Farms tube feeding formula.

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It’s a lot of work, gaining weight and keeping it on, but I desire to breathe well, live a long life and grow old with my husband. I must press on with the strength the Lord has given me! I am excited to enter my new journey as a registered dietitian nutritionist at a Level One trauma center, and to start on my book!

 

Progressively Choosing Joy

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Well friends, I’ve got quite the update for you. I’m a week and a half away from finishing my dietetic internship and am in the process of studying for the RD exam and finishing my last class for my Master’s degree. Last Friday, I successfully passed my exit exams, which means I get to graduate in a month! It’s all very exciting. Health-wise though, it’s been a rocky road lately.

About a month and a half ago, I started to experience reflux with my tube feeds, which is pretty abnormal for me. So I started taking Ranitidine (Zantac) 75 mg before and after my feeds. It helped for about two weeks. At the same time that I was experiencing the reflux, I got sick and had a runny nose, sore throat, congestion and increased cough for about 3 weeks. I started on Flonase, which helped a lot with the cough. Then, the reflux started to get worse. It woke me up in the middle of the night. It got so bad, I started to throw up my tube feeds in the morning, and it didn’t help that I was coughing so much. So I stopped tube feeding for a couple of weeks because it was so uncomfortable. But soon, I started to lose weight, and FAST. I was back down to 104 pounds in no time from my usual 115 pounds. I knew I needed to start tube feeding again, so I did, but was having the same issues.

So I called my gastroenterologist. They set me up to come see them on November 8th and told me to do the Ranitidine in the morning after my feeds and to do Omeprazole (Prilosec OTC) before my feeds at night. I called and spoke with a dietitian at Cook Children’s who told me to decrease my rate and work back up to my regular rate. This was about a week and a half ago, so we decided to check in with the dietitian when I went to my appointment in Fort Worth with my specialist.

So for the past week and a half, I have done 2 cans of Nutren 2.0 at night with the medications. I have tried to do my normal 3 cans, but I experience reflux. It has been very frustrating.

Yesterday was the 8th, so I talked with my gastroenterologist who thinks I have gastroparesis-which basically means my stomach isn’t emptying food correctly and then it gets upset. The treatment for this is to avoid fatty foods and eat 6 small meals a day. Well, if you know anything about CF, you know that we NEED fatty foods and big meals in order to gain weight! He said he could start me on Reglan, which helps with gut motility, but because I am so sensitive to medications, he didn’t want to do that. So none of this worked for me.

Today, thankfully, I had my appointment with Dr. Burk at Cook Children’s. My weight was 108 pounds-so up since I had started back with my tube feeds, but down 7 pounds from last visit, which is not good at all. My PFT was 84% at my highest. At my last visit, it was 85%. But if you looked at my trend, my PFT’s have been trending down for the past year. For CF patients, when your weight and lung function are both down, it’s never a good sign.

So we had Rachel, my dietitian, Cyndy, Dr. Burk’s nurse practitioner, and Dr. Burk all in the room with Jason and I. Together, we talked over my options.

Option 1: Increase my dosage of Omeprazole and Ranitidine and get back to 3 cans of Nutren/night. Get on a new inhaled medication called Tobi (that I have been on before) that I will need to do daily. Start Azithromycin to help with the inflammation in my lungs 3 times weekly.

Option 2: Because I don’t like to add medications if I can help it (and Proton Pump Inhibiters like Ranitidine and Omeprazole can cause other issues if you’re on them for an extended period), I can decrease my rate and still do 3 cans of Nutren/day by doing continuous feeds. This means, I do my feeds for 24 hrs/day. Dr. Burk said I could do 18 if I wanted, or 16 hours, or whatever is best for me. But this ensures that I don’t have to take the extra meds and I don’t get the reflux since my rate will be lower. If I do this, I have to keep a log and bring it to my next appointment so they know what I have been doing. The other issue with this, is that I am still doing my internship, and feeding all day could cause a decrease in appetite for actual food.

But y’all. I am seriously sensitive to medications and I don’t want to be on these long-term. So, I’m going with Option 2 for now. I will be wearing a backpack during the day with my pump and feeding bag inside. It’s a big change, but one that I think is best for me right now. I can unhook when I want to, as long as I still get a good amount of feeds in. If I end up not liking this option, I can always go back to Option 1 of increasing the meds. Someday, maybe I won’t need my button anymore, and then I won’t have to worry about these issues.

Rachel, my dietitian reminded me too, that most CF patients have been on PPI’s since they were babies. It’s like a natural thing for CF patients. I told her that I remember being on them when I was little. But you know, it’s so frustrating to be going through this. I am very blessed, because I have relatively little health problems, especially when you compare me to other CF patients. It is so easy to see myself as invincible. It’s easy to say that CF won’t catch up to me. But CF is a progressive disease. You can do everything right, and still, CF can rear its head out of nowhere. It’s unfair.

Truly, I hate this disease. But I know the Lord has a greater plan for me. One that sometimes, I don’t understand. He is greater and bigger than this disease. I am thankful that I didn’t need antibiotics and that my lung function wasn’t worse than it was. My weight is still going up. And best of all, I’m almost DONE with dietetic internship and school! There are so many good things to look forward to that I can’t let CF stand in the way. I can’t let the thoughts of what could be get me down. I choose to take each obstacle as they come and to let the Lord take away my anxieties and fears. I desire to progressively choose joy.