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.

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