This week was another clinic appointment… one that we both thought we’d be canceling because I’d be in post-transplant clinic instead. Other than the disappointment of the appointment existing, it was a good visit.
As far as days go, the day before was a “bad lung day” and clinic day was a “good lung day.” I was a bit grumpy about how good I felt after doing my treatments because the evening before and when I woke up included some wheezing and “snap, crackle, pop,” which I finally had explained to me during evaluation as mucus making noise as my airways expand and collapse. It’s a tiny, wet schmuuuuuk sound as a soggy tube gets forced apart under pressure. Doing my treatments and a lot of coughing generally rids me of these symptoms, at least for a couple of hours.
Since getting to clinic is almost a quarter mile walk from the parking garage and then 3 big efforts doing my pulmonary function test (PFT), any audible symptoms are gone by the time anyone bothers to listen to my chest. In the end, they don’t really care about that since it’s just part of the disease at this point and my PFTs were consistent at 23%. My raw volume has barely changed since my hospital admission at the end of January.
They called me “stable!” Ha! If only they knew. I lost my marbles about 35 days ago.
At this point, I’m exactly where they’d want me for transplant. The previous pulmonologist who saw me for the better part of 20 years said I’m the ideal candidate for transplant when the time came around. I can walk for miles with supplemental O2. With my tanks in tow, I’ve changed very little about our lifestyle and have started going out more now that we doubled the number of air tanks we have and I got a double-tank cart and don’t have the anxiety of running out of air. I avoid excess trips or long days in the sun that the rest of the family does, but that’s about it.
That feeding tube
What they did focus on was my weight and my feeding tube. I mentioned again that it’s still seeping goop and I have to wear a gauze pad and change it at least every 24 hours, if not 12 hours and I showed them that one side is still red and irritated. We collectively agreed that the peg between the inside and outside of the part that goes through me is too long, so it’s not creating a seal against my stomach. This is allowing acid to come through the hole while I cough or roll over in my sleep.
They said we’d get a consult in interventional radiology and swap it out since it’d almost been 3 months since it was installed. You’re supposed to change it every 90 days — since I have the J-tube, too, they have to do it as a sedated procedure. If it was just a G-tube, you can pop it out and put a new one in yourself.
So that was our yesterday.
Upon looking at the skin around the opening, the IR nurse practitioner agreed that the stem was too long. I was wheeled into IR Lab 3 about 30 minutes before my scheduled slot and met everyone in the room as they came in and got me situated on the radiology table. I was allowed to keep my contacts in because they didn’t plan on general anesthesia and decided it’d be okay to leave them in if it was an emergency. Either way, it’s supposed to be under 40 minutes total time in the room.
We discussed the situation, they examined it, also, and they pulled the tubes they wanted to consider. One nurse strapped me down so I didn’t raise my arms and knock everything they put on me onto the floor (they treat you like a table), another hooked up the IV bag to my port and acted as “sedater in chief.” Then the nurse on my right side prepped me with a lidocaine gel in some manner that hurt, but that wasn’t a needle… so I have no idea what he used.
Then in strode the doctor. He gowned up, gloved up, masked up, and walked over to me. He introduced himself and the “sedater in chief” pushed in some versed into my IV and I was ready to party! After a few minutes, he was done and they wheeled me back to the prep area. I got a sandwich and juice and waited about 30 minutes, and they sent me home.
I walked in and pretty much just grabbed a pillow and passed out on the floor for an hour or so. When I woke up, it was because the lidocaine wore of all at once and it was mad at me, so I took a Percoset and felt okay for the rest of the day until it hurt again at bedtime. I have no idea how I was so awake at the hospital, but I was pretty much “off” until dinnertime.
Today feels pretty normal other than my energy level being lower than usual.
That’s about it.