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!