March Week 2 Update – Getting Listed

It’s been a bit crazy since last week’s update. Sometimes it seems like everything is working against you, but those who know me know I don’t really think that, though it may be the case for brief periods. This may have been one of those brief periods. Stay along for the end…

The Weekend

We had a nice evening off last Saturday with the boys sent packing for Nana and Papa’s for the afternoon and night. I took a 3-4 hour nap and we were getting ready to go to Busch Gardens to see Daughtry play live. We’d been looking forward to it for weeks.

As the day proceeded, I started feeling really tight in the chest. At 2 hours, we were eating dinner and I was starting to gasp. As much as I hated to say it, I wasn’t going to make it for our date. So with the boys gone, we watched TWO shows instead of one before going to bed at 9pm! Imagine that! Two whole shows and neither of us fell asleep!

We decided to not set our alarms for church. Of course, I got up at something like 4:11 instead of 4:03. Kristin was up half the night with her sleep issues that defy logic or explanation. We decided to just go to class at 11:00. I got a pretty prime handicap spot that made me happy.

We’d planned on the annual foster picnic with the boys as very possibly our last pre-transplant outing as a family. It was the usual good BBQ chicken and hot dogs for the boys and they played for hours. We got in the car and my wife had already decided to drive us home…

I put the O₂ on 3L or 4L (double) and tried to relax. I couldn’t. By the time we hit the interstate, about halfway home, I was gasping, restless, and frankly darn near panic. It didn’t get any better all the way home. I apologized and just came in and laid down on the floor inside the door while Boy ran up to turn on my O₂ concentrator. After a while, I insisted on 5mg of Prednisone. Finally, after about half an hour, things opened up.

We both realized that was it for half-day family outings.

That night, while sleeping in bed with my CPAP, I woke up in a complete panic, unable to breathe. I realized my full-face mask was preventing me from sucking in enough air after a coughing fit at 11pm. I made a decision to come downstairs and sleep on tank air. I woke up when the tank ran out at 4am and I went upstairs to turn on the concentrator (it makes a very loud beep). No more messing around with no O₂ at any point in the day. I’m officially on O₂ 24/7.

The Week

On Monday, my wife told my long-time coordinator how the day before went and we asked to see the doctor at my next clinic or move it up. She said he wants to see me but we’d keep my appointment on the 16th. I got squeezed in, so “plan on staying a while.”

Monday was SUPER productive. I got real, concrete work done and was feeling very much my old work self. My brain was working, I was making for a good time on social media, and Nana brought over dinner, ate with us, and put the boys to bed on Monday.

Monday at dinner, the same symptoms from the day before started, but all I’d done was sit at my desk all day! Another Prednisone, then we ate (I ate a lot), and I laid down on the couch and very much passed out. I missed everything until Nana was getting ready to go. I slept on the couch on the concentrator air and got a very good night’s sleep. I even slept through our toddler waking up 4x, crying down here, my wife watching 2-3 hours of TV, Boy coming down to say he was thirsty, and all of them eating breakfast. Have I mentioned I’m a good sleeper?

Tuesday was the same thing, minus my mother-in-law helping after work, but she did take care of the boys in the morning so I could work during my wife’s doctor appointment. Productive, gasping before/after dinner, Prednisone, slept on the couch.

Wednesday was a sick day for Boy with a stomach bug or food poisoning, so scratch that for normalcy except I migrated a site, got paid, and then slept on the floor from 10p-5a.

This Brings us to Today

Around 9:30 I got a call from the pre-transplant coordinator. She said my coordinator and the doctor were talking about my clinic visit and he decided to present my case to the medical review board this morning and they approved me for listing now. I’m still functioning and “healthy” but my lungs are at that point. It’s time. She’s submitting my listing authorization to insurance and I’ll see the doctor at clinic.

I still needed to get a clean bill from the dermatologist because my scrape biopsy came back “inconclusive” and I still had a big lesion healing from the biopsy. So I scheduled a punch biopsy (basically to cookie-cut it out and stitch me up) an hour later. Yeah, I rushed into town. I got 6 or 7 stitches and it looks like a shark came after me.

Next Week – Clinic and Feeding Tube

So the plan at clinic is to lay eyes on me, do a PFT to see where my FEV1 is at related to the 22%-24% I was at a month ago, and officially list me. I’m ready. I’ll probably be half-giddy by then after all of these weeks of leading up to this. We had a little denial, a big release to trust that’s where I am, then a push to delay it by gaining weight, and now the stark reality of what the situation is. I’m on a knife’s edge, plain and simple.

The next morning, I am finally following through with the doctor’s recommendation from his first meeting with me in November: get a feeding tube. I’ll be getting a G-J Tube. That’s a gastro-jejunal tube. It’s a tube that goes from the stomach to the first part of the small intestine with a small button access on the skin to be low-profile. This will allow me to get high-calorie drinks day or night without filling up my stomach and interfering with my eating that I do get done and enjoy. It will take all of the weight gain pressure off my brute force attempts and really pack on the pounds with Caesar dressing in addition to 6 or 8 360-calorie Boost Plus drinks going straight in every day. Do that math. 🙂

A fat me will be a successful transplant recovery mre. With listing now, I’m 100% going for the most successful situation we can muster, which leads into our last update.

Going Forward – Rest and Health

I wrote in last week’s update how difficult it was to get enough hours working. While it started to look like that was correcting itself this week, now with this news, family has told us it’s most important for Kristin to be in a good mental state of mind and me in the best rest and health state.

We’ll focus on learning the feeding tube situation to maximize my calories to get my weight up and thereby strengthen my lungs’ lives a little longer and get the rest of my body some reserves to pull from as my lungs decline more. In my limited work hours I am going to be releasing another theme (this theme) and expand a plugin I released last week.

My wife is focusing on doing things for the boys, staying healthy herself, and fixing high calorie meals and snacks for me. Some days, I’m just going to suck and fall asleep after dinner and she has to pick up the slack I create because I at least oversee picking up toys and the nighttime bottle time, which I do still enjoy that bonding time.

We could get the call days after listing or several months after. I’d like it to either be a couple of weeks or during early summer so my issues don’t affect school and create all the logistic items with getting to and from school when I’ll be admitted for so many weeks. It’ll be my longest stay in the hospital since before I was in kindergarten.

Thanks for reading this far.