Admittedly, I had periods of even in better lung health where I slacked on exercise or failed to maintain consistency with a routine because of my energy levels.  Some of the issues I faced had to do with me just getting built up, going into a cycle of sickness & surgery, & then taking a while to come out it of it. I would get easily frustrated with losing everything & having to continually start from square one & feeling weak.

Some of it also could be attributed to the fact that I put my job at the forefront of everything for awhile. This included exercise & personal relationships. 

I see the error in this thinking now since my transplant journey commenced.

Once I noticed my breathing was getting worse, the first attempt I made was to be more active even on my own.  I knew sitting around taking 65 plus calls daily in a call center for a few years was not doing me any favors, so I would try to take a few more breaks & do some wall sits or a few exercises in those break times. (I even made a point to continue after I was promoted & was released from that being chained to a desk my entire shift. It’s easy to get sucked into that or get in a rhythm in certain jobs.  Then, as a result, forget to get up periodically if you don’t tell yourself to or remind yourself somehow.)

I also started going to my community center more frequently.   But once I dropped some extra weight, I knew something else was at play when it didn’t make a difference like it had every other time.

I started paying attention when I would try whatever exercise (home videos, the center, just walking) & started noticing that I had a harder time handling more intense exercise or periods over 15 minutes without getting a splitting headache, but it took me a minute (since I was distracted) to equate that to low oxygen levels. I probably should have been exercising with oxygen a bit sooner than I did, but like I did when I was young, I usually attributed any breathing difficulties to being a few pounds overweight or being poorly conditioned due to inconsistent exercise. (I will also say that a certain point after my lung disease manifested I had become getting used to being short of breath or sounding so ragged & not being able to hide it after certain tasks. It didn’t overtly concern me after awhile. Unless it was a noticeable increase over & above what I had experienced normally.)

However, when I went to LAMposium at the end of March (after a long hiatus),  I had heard about an exercise study. I decided to enroll because I know research usually serves a healthy push for me to better advocate for myself. Since I saw exercise as one of my weaker areas of self-care I knew this study would be beneficial to provide an extra push.

I was off to a rocky start at first, had a few ups & downs, but overall having someone to report activity & data to did definitely help me make more of a concerted effort to stay consistent or be active more frequently, no matter what my schedule was like.   This was also good because it was designed more like training sessions so there was enough variety to keep me motivated.  If I didn’t like or was too bored with something, I could try something else.

Then once my doctors started putting transplant talk on the table, I knew that exercise could help my stamina if nothing else.

I also realized I didn’t have the luxury of “feeling up to it” as an excuse anymore.   I just spent a few months being frustrated while I figured out what my body could or couldn’t handle, & how much oxygen I needed to to enable my body to exercise better.

I think I finally found a combination that worked, although it did take time & some occasional restarts. Yet the difference this time was I didn’t allow excuses or distractions to factor in.

Then I had the car accident in October & had pulmonary rehabilitation in a nursing home after because I severely weakened. It was hard (not going to lie, felt like even more work than previous rounds of rehab I had undergone in the past post lung collapse or after surgery) & that was the first time I really keyed in to how sick I was feeling some days.  I knew it.  Yet, I still hung with exercising & continue to.

I have another local friend who had his double lung transplant in May & is doing well. I explained my frustrations with exercise & he could relate.  As I was recovering & my stamina was shot, sometimes I’d text him during workouts for a little pep talk to keep going.   That encouragement helped me focus more on still being able to do, rather than being discouraged over  what I couldn’t still do.

Yet, my persistence paid off. This past week even with extra appointments I still managed my 3 days a week & did things I hadn’t been able to do in a while. I’ve maintained that routine pretty consistently  (or at least more consistently than in the past) at least since May.

I also noticed changes in my breathing for the better. My lungs felt more open afterwards.  I had a bit more of a stamina boost.   I was actually also doing slightly more activity than I was doing prior to the accident (also with more variety).   I still need continuous oxygen to do it & the oxymizer, but it’s getting done.   I’m doing at least 25-35 minutes of activity at those times.   That may not seem like much but I’m going hard in that time frame.

I know this will build my reserve after surgery. It’s a tad sad that it took me to get to this level to stop making excuses. Yet, like most people, I am human.  It’s never too late to start.

I credit many women in my LAM community (we hold an accountability group each year to promote healthy habits), my friends I live with, & Dr. Lowder for all staying on my tail & giving me healthy pushes to keep going when I need them.

I’m going to run that 5K after my recovery….I’ve been on the treadmill alongside runners & have visualized myself doing it.  That imagery will give me motivation on tough days & incentive to keep going until it actually is reality.

I also see articles like this & it drives home the importance of honoring that commitment I made to my transplant team too, of exercising at least 3 days a week minimum.  I know the more I build up prior to surgery, the more it will help my recovery.  There’s also a reason why the transplant post-surgical rehabilitation period is around 3 months.

I have people like Ronda Rousey, Steve Atlas, & a few others with great habits I can look up to. They are relatable people as athletes, trainers, & coaches of others but also on general principle.  (That relatable factor does help my motivation.)

I also have LAM sisters, friends, & family who run, swim, bike, power lift, do ironman races, trail runs, & tough mudders, & some pretty amazing cross-fit feats that have me in awe.

I realize that this strategy doesn’t work for everyone. Many people with chronic illness, invisible illnesses, or disabilities have to develop their own strategies or modifications to cope with their limitations & stay fit.  I can only say that this approach has helped me adjust & cope with being physically sicker. It still gives me some semblance of control in my life & normalcy if I can do it on a consistent basis.  I get up daily setting a goal to do what I feel like I can do (at some point during that day). If it’s only 10-15 minutes that day, so be it. If it’s more, then great.

I actually now do feel quite amazed at what I can still accomplish with less than 30 percent of my lungs & with some oxygen.  I’m grateful for that but look forward to the day when I can do even more.

Maybe I’ll even do the Transplant Games at some point. It’s fun to think about.