It’s been a few days since my most recent clinic visit on June 5th. Life has been really busy, even with school being out! But, I’m finally taking time to write about life in the past few months and my clinic visit. I’ll start with the part of the title of this post that may be most concerning to some of you-the 3 surgeons.
You may or, may not, remember that I had to have my feeding tube replaced several times last year. I actually lost count, but I’m pretty sure it was 4 times. For some reason, the balloon that is inflated inside of my stomach to keep my feeding tube in my body kept bursting. Meaning, my feeding tube could not be kept inside. So, this meant scheduling a last minute trip to the endoscopy center, where I would fast the night before, then spend 3-4 hours at UMC getting a new tube and recovering before I could go home. It meant no driving or working-for myself or Jason.
That may not sound like a lot, but that’s 4 days that we were taking off of work without notice (as a teacher, this was really frustrating and HARD). 4 days of hard-earned PTO for Jason. 4 extra days out of our lives besides days we were driving to Fort Worth for my clinic visits, or days that we wanted to take a vacation. It became frustrating, and really annoying. So after the 3rd time it happened, I asked my GI doctor if there was something else that could be done. She said she thought that my current tube could be placed into my small intestine, instead of my stomach (where it currently is), and that a surgeon would have to place it.
So the 4th time my tube came out, we replaced it, and my GI doctor referred me to a local surgeon.
A couple of weeks went by, and I finally went in to see the first of three surgeons. Dr. D and I had a good, long conversation about why I wanted this tube in my jejunum (the 2nd portion of the small intestine). But, I became very disheartened when he told me that this couldn’t be done, as the balloon that keeps the feeding tube in the body, is the same diameter as the small intestine. Meaning, if he were to place it, it would obstruct my small intestine. So, he asked me to give him a couple of weeks to do some research and see if there were other options besides your typical J-tube.
Why do I not want a J-tube? J-tubes stick out several inches from the abdominal area. If Jason and I want to have kids in the future, this is not ideal, as it would be really easy for a child to accidentally pull the tube out, resulting in an ER visit to get the tube replaced.
So after my appointment with Dr. D, I went home and did my own research. After working with EPIC Medical Solutions, I consider myself as somewhat of an expert on feeding tubes. I know the different varieties, brands, issues, etc. So I knew that a low-profile (like my current tube) J-tube did not exist. But I still searched.
Eventually, I came across a friend of mine on YouTube. I won’t use her name here, but she has cystic fibrosis and a feeding tube. What I didn’t know, is that she has a low-profile J-tube. What?! I messaged her to get details.
She told me her surgeon did what is called a Roux-En-Y Jejunostomy. The short name: J pouch. If you google this, you won’t find much on it. Basically, it’s a surgery that can be done laparoscopically, and the surgeon creates a pouch with the jejunum for the balloon of the feeding tube to fit, without obstructing the small intestine.
THIS was my answer!
I called Dr. D’s office the next day and told his nurse about my discovery. She made an appointment for me to come in and talk with Dr. D.
Unfortunately, Dr. D had not heard of this surgery and therefore, would not perform it. So, he referred me to one of his colleagues, Dr. P.
I met with Dr. P, who primarily does bariatric surgeries. During our visit, he could not grasp the fact that I have the feeding tube because of my having CF. He kept thinking it was because of gastroparesis. Gastroparesis is delayed emptying of the stomach. I explained that I had never actually been diagnosed with this, but that I self-diagnosed a mild form of it due to symptoms that I have (I feel I have enough education to do this, since I’m an expert on the digestive system!). He also declined to do the surgery, but insisted I get a gastric emptying study done to confirm the diagnosis of gastroparesis. I accepted, and also requested a referral to another well-known surgeon in Lubbock, whom I had met before and liked.
I got the 90 minute gastric emptying study done just a few days before Christmas. I was sent to Covenant, where I ate eggs with a special dye and drank apple juice. I then laid on a table under an x-ray machine for 90 minutes. I listened to podcasts while the machine took pictures of my stomach every 10 minutes. It was the easiest medical test I’ve ever done!
The test results came back a few weeks later, showing that it was “abnormal”. That’s all I was told.
I then got my appointment with the 3rd surgeon, Dr. G, in March of this year. Dr. G didn’t like that I only got the 90 minute gastric emptying study done, instead of the 4 hour study. So, he sent me to complete the 4 hour study. Based on the results of that, we would talk about getting the surgery. Even though there was not a point to get the 4 hour study done, in my opinion, I obliged.
So, I spent 4 hours at UMC one Monday morning. I ate eggs with the special dye, toast, and drank water. I then laid on a table for 10 minutes, 5 times during the 4 hours. The test results came back normal, meaning I don’t have gastroparesis. However, I still have some of the mild symptoms-I get full quickly, but am hungry not long after eating; I am nauseas if I eat past fullness; I cannot tolerate much volume in my stomach, otherwise I get nauseated and vomit. So, I still consider myself to have a mild form of gastroparesis. I know my body better than any doctor!
Just a couple of weeks ago, I met with Dr. G again to schedule the surgery. Or so I thought. He ended up telling me that he wouldn’t do the surgery. The risks outweighed the benefits, in his opinion. He offered to refer me to someone else for a second opinion, but I declined and thanked him for his time.
I was done. 3 surgeons. 6 months. No surgery. No answers.
BUT. My current tube has lasted 6 months-that’s 3 months longer than any of the others have lasted. I think the Lord has shut this door, at least for now. And until then, I think he fixed the issue (whatever it was). For that, I am thankful!
Now, onto the steroid.
If you’ve read any of my previous posts, you know I struggle a lot with fatigue. It hasn’t let up. It got so bad, that my mom recommended I go see a hormone replacement specialist. We will call him Frank (not his real name). Frank is a nurse practitioner here in Lubbock. He sees patients for hormone replacement, and it’s a self-pay business, meaning he doesn’t take insurance.
I went to see him a month and a half ago, and I was wary. I explained that I am research-oriented, and I’m sensitive to all new medications. He explained the physiology behind hormones and what he does, so I decided to give him a chance.
I went and got labs done, which showed that my cortisol was elevated, which meant that my adrenal glands were working really hard to make it. After we got the results, Frank put me on Hydrocort-2.5 mg with breakfast, lunch and right before bed.
Just a couple of days after starting the hydrocort, I noticed a huge improvement in my fatigue. I wasn’t laying in bed for an hour before I could get up, I wasn’t too tired in the afternoon to work out, I didn’t need to nap as often-it was great!
I also noticed an increase in my appetite and noticed I started gaining weight! We’ll get back to that here in a second.
Fast forward 4 weeks later on June 5th, and I’m in Fort Worth for my CF clinic visit. I had already done labs and re-did my oral glucose tolerance tolerance in Lubbock just the week before (all of which came back normal), so all I had to do was talk with my team and do PFT’s. My weight was up from 111 pounds to 119 pounds-the most I’ve ever weighed in my life!! The dietitian didn’t even want to see me. LOL. My PFT was stable at 98%. My clinic just got a grant to have physical therapy (PT) come in during clinic visits, so I got to meet with a physical therapist for the first time, and I loved it! I know there are so many benefits to PT, but because I’m never hospitalized (Praise the Lord), I never get those benefits. So this was really cool!
Dr. Burk couldn’t be at clinic this week, so I saw a different doctor that I had never seen before. I can’t remember his name because it was difficult to pronounce and spell (lol), so we will call him Dr. C. Of course, my NP, Cyndi, was still there.
They asked what I had been up to-I explained why the J-tube surgery wasn’t happening. They asked about my lung function and if my coughing was at my baseline. Then, they asked about my fatigue. I told them about the hormone replacement nurse practitioner, and showed them the medication he had me on. Their eyes widened and they asked if it was long term. I told them I wasn’t sure, and asked why they were concerned.
“Hydrocort is a steroid.”
Wait, what?! I felt so stupid. I know meds. I’m required to know what certain medications do, as a registered dietitian. Hydrocort. Hydrocortisone…ohhhh. Crap. Steroids give you a great appetite. They make you gain weight. They also increase your chances of getting a lung infection. Cool cool cool.
I got emotional at the thought of my fatigue coming back. I’m getting emotional just writing about it now!
“But it works.” I said.
“I know it works. But you need to taper off of it.”
I was bummed. I became really discouraged as I realized that the weight gain likely wasn’t from me doing well, but from the steroid. What would happen if I got off it it? Would I lose all the weight?
I can’t win.
There hasn’t been anything else that has helped with my fatigue. Not the iron; nothing. I felt defeated.
A couple of days after my clinic visit, I went back to Frank and explained the situation to him. He told me to take it twice daily for 2 weeks, then once daily for 2 weeks, then just take one as needed when I noticed that my body needed it. I haven’t discussed if this is okay with my care team yet, but I will. I did tell Frank, that if I end up with a lung infection, I’m coming after him!
Other than my health, things are going well for Jason and I. I am really enjoying being off from teaching, but will go back for my second year in August. Until then, I still work part time at the Southwest Cancer Center at UMC and I LOVE it! I feel like I’ve finally found my niche. If you didn’t already know, Jason passed his professional engineering exam, and now only lacks one more year of experience to be considered a professional engineer. I am so proud of him!
Our best friends moved back to Lubbock from Round Rock, and we have had the pleasure of hosting them at our house the past month until they move into their new place. We have had so much fun with them, and we will be really sad when they move out! Thankfully, they will be just a 5 minute’s drive from us. Their dog, Gus, will be missed by Meredith and Leia!
If you’ve made it this far, hats off to you! Thank you for desiring to stay involved in my life. It means so much to have an amazing support system!