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:

Related image

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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5 thoughts on “It’s Not Just About the Lungs

  1. Hey my name is Melody and I have colostomy bag. I have had it for 11yrs. It’s something to get use to. If you want to know more email me at smokey276@gmail.com and I will let you more but it’s people that don’t even know I have one and I still wear my clothes.

  2. Thanks for your amazing honesty and strong faith. You are an encouragement to many. Love and prayers continue.

  3. Hi there! I really don’t know very much about feeding tubes (my CF symptoms seem to be opposite yours – fine GI performance but terrible lung function!), but do you watch the Frey Life? Mary Frey has CF and she had a J-tube placed a few months ago. Once her site healed, her surgeons were able to place a button that is very low profile (I think it’s a “Mini”?). When she’s not hooked up to her feeds, it’s very flat and she doesn’t have tubes hanging down. Again, I know next to nothing about feeding tubes, so sorry if I’m totally missing something here, but it might be worth a watch if you haven’t already seen her story! πŸ™‚ Here’s one of their vlogs that specifically shows the new button – https://www.youtube.com/watch?v=XWT5ENOB3r8

    Good luck with your “resting” project! Remember, it’s ok and not “lazy” to let yourself just take some time off to sit around and not stress about doing anything every once in a while. πŸ™‚

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