To Breathe or Not to Breathe

My highly accurate illustration of what my lungs look like

Here are ssome of the things that are hard to do with a paralyzed diaphragm:

Sleep, go up stairs, pick up something off the ground, most yoga positions, walk the dog, walk farther than 1/4 of a block, swim, hike, get ready for the day, dance, keep up with children and puppies, stand up from a chair, hurry, carry things, go shopping, stand for more than a few minutes.

Instead of swimming, I kick around in the pool. I don’t even try basketball or tennis. Sometimes, when I’m someplace like Costco or Walmart, I forget I can’t breathe and set off at my pre-surgery pace. Somewhere around the clothes section at Costco or kitchen goods at Walmart, I realize my mistake as I run out of breath and get lightheaded. The fatigue is deep and all-encompassing. It’s unnerving to go from going about your day to feeling like you might collapse on the spot. I stop going places alone because I am never sure I can get there and back safely. 

One day I might be able to sustain a near-normal level of activity, but the next it will take all I have to go from the bed to the chair. I almost always have a headache and a stiff neck. The chiropractor tells me it’s because of all the work my body is doing to breathe. The weird thing is that I don’t notice the effort it takes to breathe until I am already out of breath. At the end of the day, my Apple Watch tells me I did 30 minutes of hard exercise; all I actually did was walk from my car to my office and back. Does it count as exercise if my watch thinks it was?

*****

The one thing that was abundantly clear from all of the Mayo appointments is that the loss of a functioning diaphragm in my left lung is having a sizable impact on my life and health. Everything else going on is manageable, but the diaphragm is an issue. When I did a “sniff test” (perhaps the easiest and shortest medical test there is), I saw a video of what my lungs do when I breathe in. The functioning diaphragm dutifully pulls downward, increasing lung capacity. The paralyzed one that is already crowding out my lung pushes up, lessening the capacity even more. Talk about useless!

It may seem obvious that losing half of a lung would make it hard to breathe, but, apparently, there are people who live perfectly happy lives without a phrenic nerve. They reach a point where they experience no significant difference between their pre- and post-surgery activity level. At my surgeon's urging, I’ve spent the months since surgery trying to push myself back to my normal activity levels. I can't even get close. 

I have two options. I can adjust to the limited activity level that is my new normal, or I can have surgery to try to improve things. The surgery* is major (with a 3-4-month recovery time), and the success rate is lower than I’d like. Also, at best, I can only expect things to get 50% better than they are now. I have no idea what that means in practice. Before the mass was removed, my lung function had been reduced to 80%. After the surgery,  sans phrenic nerve, it decreased by another 20-30%. Does that mean my current capacity is 50%, and the surgery could potentially get it back to 75%? No one can tell me for certain. 

I tend to err on the side of not doing surgery. I had carpal tunnel for 17 years before finally breaking down and having it fixed. During those 17 years, I couldn’t hold a phone to my ear for more than a few minutes, my hands tingled whenever I drove, I couldn't carry bags without losing feeling in my fingers, and I woke most mornings to hands on fire. It wasn’t until I could no longer function that I had the procedure. Ditto my tennis elbow. 

I don’t like playing the odds, and I’m not eager to have a big surgery that might not help all that much. But I know that if things are this bad now, they will only get worse as I age. For the pulmonologist, the decision is a no-brainer. Someone my age shouldn't be this limited in terms of lung function. Still, I really don't want to have robot arms forced through my ribcage again. 

This is not how I thought I would be spending my sabbatical semester, but when I am being rational, I can admit that I’m too young to be done with tennis and hiking and walking the dog. I’m too young not to be able to take the stairs. Here’s hoping it helps!

*  The surgery entails folding the diaphragm down like an accordion and stitching it in the folded position. It won’t fix the diaphragm, but it will give the lung a bit more room.