If you have made it this far, you may be aware I was diagnosed with pulmonary arterial hypertension, PAH for short. After a severe episode making my stealthy PAH obvious, and a heavy let down of a curable treatment option, I knew I couldn’t live life the way I was headed. I was miserable, swollen, and dependent on everyone around me to get my basic needs met.
I began a new medication, Remodulin, which is helping tremendously. However, I knew I needed more. My endurance was so low. My heart rate would sky rocket from me just standing up and doing my basic necessities. I’m talking getting dressed and brushing my teeth. I would feel my heart pounding out of my chest doing my laundry.
I’m 31 years old. I had been through a hell of a year, and I was determined to not go down with the sinking ship. After scouring the internet for treatment advice, I asked my doctor if I could be referred to pulmonary rehab. I was somewhat familiar with it in my educational background in Kinesiology and through my short career as a physical therapist. At this point, I was desperate to try anything.
The First Visit
I was so excited to start rehab, I felt like a kid on Christmas day. It took a while to get in, and get insurance approved. For some reason, most private insurances don’t like to approve pulmonary rehab for PH. Fortunately (I guess) in my case, I also have some breathing restrictions on my pulmonary function test, so that got my foot in the door.
During my first visit, I sat down with a respiratory therapist. We went over all of my medical history for what felt like an hour. I took a few outcome measure surveys so we could have a baseline, and I expressed my goals. Realistically, I had no idea what was actually achievable or where I was physically. I had no restrictions from my doctor, just the “listen to your body” lecture.
All of my vitals were taken, and I did a 6 minute walk test to measure my endurance. We took a quick tour of the gym, and went over some expectations before my first visit 2 days later.
First Things First
I was so anxious for my first visit, I didn’t really know what to expect. Prior to exercise, I have to weigh myself right when I walk in. I place 3 electrodes on my chest and am hooked up to a monitor. Then my vitals are taken and a respiratory therapist listens to my lungs. The program is supervised by respiratory therapists and exercise physiologists. There is someone sitting behind a desk constantly monitoring my EKG.
The first visit was low key and meant to get a feel for where I was in my cardiovascular fitness. The gym is filled with cardio equipment – bikes, treadmills, ellipticals, steppers, a rower, and some weights. I started off slow and gradually built up my tolerance. I remember thinking the stationary bike was the hardest thing I have ever done in my life.
One month in, and something just clicked. Suddenly, I noticed myself being more productive at home with fewer rest breaks. I was willingly walking 2+ miles around my neighborhood. I didn’t dread walking through the grocery store. Rehab was becoming easier, and I found myself progressing. Now, I do the bike last because it is the easiest for me.
What Does It Mean?
So in reality, rehab is more than just exercise. As I mentioned, I am constantly being monitored which gave me the confidence to recognize my abilities and limitations. There are quite a few objective measures that are also being monitored beyond my heart rate and oxygen levels.
METs or Metabolic Equivalent, in short, is a measure of energy expenditure. One MET is defined as the amount of oxygen consumed while sitting at rest and is equal to 3.5 ml O2 per kg body weight x min. Had to read that again?
As activity increases, more oxygen is needed to supply energy for the contracting muscles. 1 MET is the rate of energy spent while sitting at rest. At 10 METs a person is working 10 times harder than when they are at rest.
Now there are fancy labs and tests to measure true METs, but in rehab we go by estimates and equations. My rehab goal is to exercise at 4 – 4.5 METs. Sounds easy enough, but it is actually pretty difficult for me. Here is a chart on the approximate MET values for different activities.
METs are used in rehab to prescribe the exercise I am performing and the parameters. For example, it is used to determine at what speed and incline I exercise on the treadmill. So based on my weight, if I exercise on 1% incline at 3.3 mph speed that is approximately equivalent to 4 METs for me.
Basically watts is power. This is used to determine which resistance my exercise is set. A certain amount of watts or power, is required to overcome said resistance. My watts are also recorded with each exercise to determine how hard I am working.
I Do Have A Say
My opinion does matter! There is a subjective scale that is recorded with each exercise known as the RPE scale, or Rate of Perceived Exertion. Exactly how it sounds, it is a scale that I can gauge how hard I feel like I am working. Don’t ask me why, but it is rated from 6 – 20!
I typically stick to the 12 – 14 range, which is ideal when exercising in my case.
What Does It Look Like?
I exercise with multiple people at the same time. There are usually 2-3 of us at the hour that I go to rehab. I am the youngest by far, but I like to refer to them as my rehab friends. We are all in the same boat, motivating each other to do our best.
Some people use oxygen throughout, some only if needed, and some, like me, not at all. We all use the most of the same equipment, but exercise at our own levels based on our needs. After my exercise routine is complete, I have to sit and rest (much longer than others) waiting for my heart rate to return to its baseline or within 10 bpm of baseline. It usually takes me a good 10 – 15 minutes to recover to my resting heart rate, which is trending lower and lower!
My current program looks like this:
- Treadmill: 1% incline at 3.3 mph x 14 minutes
- Seated Elliptical: Level 6 x 14 minutes
- Weights: Seated Leg Extension 20# 2 x 12, Rows 20# 2 x 12
- Aerobic Step: 2 blocks x 2 minutes
- Arm Bike: 10 Watts x 6 minutes, alternating forward and backward each minute
- Rowing Machine x 6 minutes
- Recumbent Bike: Level 3 x 10 minutes
After typing all of that out, I must say, I am really proud of myself. I couldn’t even walk to the end of my driveway without a break at one point in my journey. It started off really hard, and completing those exercises is no easy task. I am usually wiped out by the end of the day, sometimes needing an afternoon nap.
Worth The Work
I must say the hard work is definitely worth it. As I mentioned, a switch just went off and I found it so much easier just to live my life again. I had so much hope restored. I gained confidence in myself, and was able to see what I was actually capable of. Before starting rehab, I was terrified to do too much. I had no idea what my future would even look like. I’ve gained so much more independence, and that alone restored an ounce of hope. Even if this is my peak, and I plateau from here it was definitely worth it.
I hope sharing my experiences with rehab can help you make decisions and answer any uncertainties.