Welcome back! This is the second to last part of this story. Thanks so much for sticking around for it! I’m curious, what would you like to see me write next? While I have ideas, I am ultimately here in hopes of helping others. Are you currently having issues with how to tape your feeding tube and looking for a possible new way? Are you scheduled for a procedure in the hospital and want a list of ideas for things to take with you to make it feel more like home? Or maybe you aren’t a patient and have a question about something I’ve already mentioned here and would like for me to elaborate on it? I’d love to hear from you!
Let’s jump back in!
The second trip to Mayo Clinic was just as busy as the first! There were lots of lab draws and running around to see various doctors, but Aunt Retta and I had fun with it!
This time they decided I needed to see one of the geneticists to view my problem from that perspective. People had always asked if this type of condition ran in my family. While I wasn’t aware that it did, I guess it was about time to see if this could have been brought on by some mix of my genes. We talked to the doctor for a long time and I didn’t quite know what he was talking about for the majority of it, but he ultimately didn’t think any of the lines connected to lead to my condition being genetic.
I also saw a nutritionist to discuss potentially trying tube feeds through my J-tube. I was not very excited about this appointment. Afterward, I was hopeful about the whole thing after we agreed that I could start extremely slow (like 8 ounces over 12 hours) to see if it would work for me. We could try different formulas and I could pick the pump I liked. We would make it work best for me as we tried to increase my caloric intake, which would hopefully lead to decreasing my TPN intake a bit.
The last of the important appointments (there were a several more than I listed, they just weren’t quite as exciting) was with the head of the intestinal failure clinic, or in my words, the TPN doctor! He and his nurse were amazing and so helpful. Although I had been on TPN for several years, I’d never had a doctor sit down and detail all of the different types of central lines that were available.
I still had a PICC and he really didn’t love that idea. He talked with me about Hickman lines and really tried to sell me on getting one rather than getting my PICC replaced. My whole problem with this type of line was that its placement scared me. When he told me it would be on my chest, I just really couldn’t vibe with it at the time. (Spoiler alert – I got a Hickman a couple of years later. I saw this doctor at the Oley Conference and took the opportunity to thank him for educating me on the types of lines. In the end, he was right about what I needed!)
I left this visit to Mayo Clinic with my new PICC in, a plan to begin tube feeding to see how it went and a rotation of antibiotics to help with small intestinal bacterial overgrowth (SIBO). I also weighed in at 109 pounds! This was major for me because it was the most I’d ever weighed in my life. I was pretty content with how things went while we were there.
I stayed pretty content for the rest of the spring all the way into July! Tube feeding went pretty well and I continued to put on some healthy weight. My doctor in Dallas was so excited for me and I was just having so much fun! I’m not saying I didn’t have rough days here and there. There were probably two out of four days that I didn’t feel all that great and laid pretty low. I’m going to put a bunch of photos here from that spring and summer so you can see how well I was doing!
There was one particularly important event that happened in June of 2014. Aunt Retta and I visited Bentonville, Arkansas, to attend my little cousin’s fifth birthday party! While we were there, I happened to be on the dating app Tinder and “swiped right” on a sweet man named Anthony.
You might know that Tinder is a location based app, so you can only see people within a certain distance. It was pure dumb luck that I decided to check out the Arkansas boys on the app while I was in the area! Anthony “swiped right” on me as well and our story began with endless messages back and forth!
We talked for about a month before he came up with a plan to come to Texas to meet me and my entire family because I lived with them! (What a brave soul.) I’d been doing so well health wise I didn’t consider that there would be any obstacles to making it all happen! Sure enough, on July 9th, I found myself in the hospital unable to drain my J-tube with tons of vomiting.
How embarrassing! I was supposed to meet this adorable man coming all the way from Arkansas and there I was with an NG tube dangling from my nose!
I cut it super close, but was released from the hospital on July 16th and Anthony arrived on the 18th! But I did it! I was so thrilled to not have to meet him in the hospital. After knowing him though, it would have been perfectly fine had it turned out that way!
It was pretty much love at first sight (or swipe, ha!) I packed a picnic and we met at a local park when he got into town. He stayed in town for four days and we made the rounds and met everyone and just had so much fun!
I drove my little green Fiat to see him in Fayetteville just a week later because I missed his face so much! We went hiking and he showed me all the cute vintage shops in town!
And…I went to visit again after another week! We were in love and didn’t care who knew it! He always showed me the most fun places in town like this retro diner! He let me drive the golf cart while he played a round of golf! We somehow (I don’t know how my body was doing it) went on another gorgeous hike in the Ozarks!
Everything was going so great!
On August 19th, the same problem occurred yet again. The J-tube stopped working and the vomiting started followed by another week and a half in the hospital. This is getting old, right? Well, not even a week after getting released to go home, I was on my way back in for a direct admit because without an NG tube, I went back to where I’d started. I was vomiting non-stop while consuming nothing by mouth.
I remember crying when my doctor walked into my room. I was so sorry that I’d gone home. I just thought I was going to be better for at least longer than five days! Also, I really wanted to get to Arkansas to see Anthony for his birthday. This ultimately didn’t happen because I definitely wasn’t ready to get out of there in time for that.
The NG tube went back down and I was back at square one. The length of time between being unhooked from suction and needing it again had decreased significantly over time. I could barely go two hours without having my NG tube connected to suction while I could go for several hours before.
Anthony was able to drive down a few days after his birthday to see me while I was in the hospital. We got to celebrate his birthday there (fun party, I know!) Aunt Retta and my mom brought the supplies to make him a card and wrap his gifts. I was so thankful to have him there for what was about to happen!
This post is getting pretty lengthy, so I’ll save the next part for tomorrow! I promise things are going to take a turn for the better! Just bear with me!