The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.