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!