Weight For It ...

Wednesday was transplant clinic day. I was not looking forward to this appointment because of the early start. I'm used to having clinic in the afternoons and now my clinic is in the mornings, bright and early. Tom and I live fifty miles from Stanford Hospital and with California traffic that means a long time in the car, no matter the time of day.

My appointment was to start at 7:30 am, which meant leaving the house at 6:15. I thought foolishly that we could actually make it on time because who the heck is on the road at that time!? Well, it seems a lot of people are trying to get to work and beat the "rush hour." It's always rush hour here! With starting so early there is no way I was going to get up any sooner than I had to, so I prepared my treatment for the car the night before and decided I was going to go in public shower-less. Up at 6 am, in the car by 6:15, it was a doozy, let me tell you.

After arriving fifteen minutes late, getting stuck with a needle in my artery, doing my breathing test, and walking for six minutes to measure how many feet I could walk in that amount of time, I was ready to see my transplant team. I was in for a treat (or not). I found out that I had lost some weight and because I felt like being honest, the team found out I was not being as stellar as I could be with managing my care. Let's just say I got a good dose of tough love and embarrassment on my part.

Some people might think staying at home sounds like a dream, but staying home to keep myself healthy is agonizing, depressing, and lonely. After clinic and a few hours of reflection, Tom and I took action to help me solve my non-compliance issues. We decided that I not only needed a routine to my day, but I also needed an hour by hour chart outlining my goals for the day. I'm the first to admit, reluctantly, that I'm not a self motivator and don't have much discipline in my life outside of being diligent about my breathing treatments. A chart and routine are more than necessary to get me to transplant.

Tom and I planned for me to get up earlier and go to bed a little earlier while making sure I eat five times a day, exercise, check my blood sugars, do my treatments and still have time for rest, grocery shopping, and TV time. Thinking about this routine for the next however many months until I get new lungs is so overwhelming, I tear up just thinking about it. Imagine having a perpetual cold and the feeling of having just eaten too much from Christmas dinner ... it really is miserable feeling exhausted and full from food all of the time. Right now, the future is too much of a burden to focus on so right now all I can process is hour by hour, checking off my goals on my chart and feeling good about accomplishing those tasks.

As my doctor said on Wednesday, if there are no complications from my transplant, my weight won't be a huge issue. However, if there are even the slightest of complications (which there will be) I could be in serious trouble when it comes to my body healing or ever recovering. Putting weight on and showing my team that I can be compliant is a life and death issue at this point.

I broke down in the middle of the kitchen on Wednesday night, crying and having a "why is me" moment. "Why do I have to work so damn hard to keep this body going!?" Tom consoled me and after letting it all out, I felt much better. The stress of the day got the best of me and in that moment I wanted nothing to do with fighting to keep this body as healthy as possible.

Today is day two into my new routine and I am feeling positive and motivated. It is hard to eat five times a day, but I'm getting into the groove of just keeping my head down and accomplishing my goals. I'm keeping my figers crossed that all this hard work pays off and that we will see some improvements by January at my next clinic appointment. Until then, we will just have to weight for it.