Valentines day is a kind of an anniversary for me. Not for any romantic reason sadly. But because in 2018 it was my last day of attending IU Methodist’s pulmonary rehab… as an idiopathic pulmonary fibrosis sufferer. Not by choice mind you. But my next visit would be a little shy of three months later as a Bilateral lung transplant recipient.
I’d begun to deteriorate more rapidly. My five liter per minute home oxygen compressor had been replaced by a ten liter unit. My refillable tanks collected and a large liquid oxygen setup left in their place… Who needs chocolates and roses when you can have O2 delivered?
I went into rehab that day and started doing the normal routine. Stretches, sit to stands, etcetera. Normally followed by half an hour on the treadmill. A half hour on the stationary bike. Then a cool down with resistance bands.
I didn’t quite manage to do all that… not even close to half of it. I made it through the warm ups, but my lungs just weren’t having any of the treadmill that day. What’s the old saying? The spirit was willing but the flesh was weak?
I’d stepped onto my normal treadmill. The one with the large oxygen tank next to it… Because the smaller tanks, on the little pull carts, didn’t push enough liters per minute for me anymore.
I made it less than a minute, my stats went haywire, my oxygen saturation tanked, and one of the therapist rushed to bring me a chair. Monitoring me as I slowly recovered. I’d love to say my fluttering heart and breathlessness was due to one to many valentine candies…
But it was my body giving out. In my normal stubborn fashion I didn’t see myself as down for the count yet. I told her I wanted to try again when asked. She moved the chair from the treadmill as I got up. Standing beside me when I pressed the start button.
I lasted a grand total of thirty seconds. Struggling the whole way. The therapist had me sit and recover as best I could. Telling me. “That’s it your done for the day. I’m going to call the transplant team and let them know.”
My lungs had put up a valiant fight, but the fibrosis had ravished them pretty thoroughly by that point. To put it into perspective… the breakneck speed I was attempting that day was less then one mile per hour.
So I was sent home, feeling a different brand of anxiousness than most people experience on Valentines day. The pulmonary therapist contacted transplant and I received a call not long after. There weren’t any rooms on the Intensive Care Unit, but the docs wanted me admitted.
Who says you need reservations to go anyplace nice on Valentines day? A space was going to be made for me until a bed opened up in ICU. So back to Methodist I went, finding myself on the sixth floor, being taken care of by a nurse who brought me girl scout cookies. Because nurses are awesome.
Several times during my stay in the hospital my pulmonary rehabilitation therapists visited to see how I was doing. I’m sure my visage didn’t instill in them much hope that they’d see me on one of their treadmills ever again. But they came and offered encouragement anyway. Because they are pretty darn awesome too.
And that is the whole point of today’s blog entry. To say thank you to my therapist, to praise their hard work, and to encourage others to attend an actual pulmonary rehabilitation program.
I know there are folks that look at pulmonary rehab and scoff at it. Either because they are in denial, not thinking they need it, or because they believe they can get the same benefits exercising at home… maybe the local gym or YMCA.
The thing is… there is a personal touch that comes from going to an actual rehabilitation program. No one is going to make you attend. You’re an adult after all. But if you don’t show… after awhile someone is going to make some calls. Either to you personally or to the hospital to see if you’ve been admitted. Slim chance anyone from the gym is going to do that.
When you attend rehab the therapists are going to push you to have the best workout you’re capable of. They’re not going to hover over you like a personal trainer or try and break you. I’ve yet to see one make a patient do more than they were capable of. But they’ll set goals and help you stay on task.
They have oxygen… blissful wonderful supplemental oxygen and people who understand how to administer it. Oxygen is regulated as a prescription drug. So no matter how amazing the setup at your local YMCA. The likelihood that they’ve got a big ‘ol oxygen tank for you to tap into probably falls somewhere between zero and none.
Your therapists will also get to know you. I don’t mean your favorite color and the names of your kids and/or grand kids. Though there is a good chance they will learn those things too. When I say they will get to know you I’m mostly talking about your health.
They’ll learn your capabilities, what you can handle physically, what a normal day looks like and what your rough days look like. They’ll be able to tell when you can handle a little more speed on the treadmill and when you’re struggling.
Your doctors can’t be at your side every time the treadmill is fired up or you climb onto a stationary bike. But a pulmonary therapist can, and through them your doctors can stay informed about how you’re doing.
Is therapy improving your quality of life? Are you staying steady? Is there signs of decline? What are your numbers at rest? With exertion? How quickly do you recover when your stats drop? How well do you seem to be holding up emotionally? These are things that can be filtered straight to your doc’s ear when you attend physical therapy.
In my case… when it really mattered most. I didn’t have to freak out. I didn’t wonder if I’d need to make an appoint when my stats bottomed out on that treadmill. I didn’t have to wait on hold or leave a voice message. I didn’t have to go to an emergency room. My therapist took my situation straight to my transplant team.
That wouldn’t have been the case if I’d stuck to only using my home exercise equipment. Heck if I’d done that my stubborn butt might have died on a treadmill as I keep pushing myself. But my therapist knew something was up. She knew something had changed.
Now I’m not going to pretend that all pulmonary rehab program are created equal or that all the therapists in the world are perfect. They’re not. Though you’ll have an argument on your hands if you insult mine. Just fair warning.
From my point of view however; I think it is worth the time and effort to go. Currently I don’t have to because of how well I’m doing. (I go back to visit occasionally though.) But I can say in all honesty that if my doctors wanted me to start up again… I’d be there everyday if need be. Cranking those peddles and getting those steps. Hopefully with enough breath left over to tease and joke with my therapist.
If you’re a pulmonary rehabilitation therapist reading this… thank you from a patient who appreciates all that you do. You know what? If you are a physical therapist or a occupational therapist thank you too. Y’all are great also.
But on Valentines day. A massive heartfelt thank you in-particular to my amazing therapists at IU Methodist Pulmonary Rehabilitation.
(Please excuse the lack of photos. I drew pics instead because… well… I didn’t let many pictures be taken of me pre-transplant and those photos I do have from rehad include my therapists. I didn’t feel its my place to be sharing those images on here.)
I enjoy your story. Mine is similar and I agree with you 100%. Pulmonary Rehab can do so much for you both physically and emotionally. Yes the therapists are great at what they do.
My hats off to the whole team at Methodist Lung and Advanced Heart Office and Coltts and Pulmonary Rehab.
Nicholas, please continue with your stories. They are an inspiration.
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