In Your Words: A change for the better

John Clarry gives his IPF diagnosis a workout

In life there are times when you have to change, and it’s a very lonely proposition. But when you do it — and you have to really put your mind to it — it can be very satisfying.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in September 2014. I was really taken aback. When someone tells you that you have two to three years to live, it shakes you up. The thing that I thought of immediately was my wife, and how I was going to break it to her. It was terrible.

The diagnosis was the bad news. The good news was that there’s medication to help treat the disease, which I started taking in November. My doctor also suggested an integrative medical approach, which treats the whole person — body, mind, and spirit — and using every resource available for a healthy change in lifestyle.

My wife says I’m the oldest gym rat alive because I’m there all the time now. I go at least three days a week, sometimes four or five. Some days I’m not feeling as well, so I’ll take time to rest. It’s been an incredibly interesting experience because I know I’m sick, but I actually feel better now than I have in years.

To give the backstory on where I was at that time of my IPF diagnosis, a year earlier I was having knee problems due to osteoporosis. I had been walking with a cane and doctors were talking about knee replacement. I wanted to avoid it any way I could, so they put me on an exercise program through the physical therapy department at Cleveland Clinic.

Today, I do 12 machines, seven of them are lower body and the other five are upper body. I started with lighter weights, about 20 pounds, and I’ve worked my way up to an average 85 pounds (the same as my age). I do two machines that are heavy leg machines, one at 135 pounds and the other at 125 pounds, so I’ve really worked my way up in strength. I’ve gained weight and lost inches from my waistline at the same time. I’ve turned a lot of fatty tissue into muscle.

Before I was diagnosed with IPF I went to my gerontologist because I was tired all the time and not as active. Previously, I had had a very active life. I didn’t retire until I was 70. I got a chance when I retired from engineering to be an apprentice sculptor and I did that for about eight years. It was a wonderful experience. I’m still working in clay and doing sketches. But, other than walking, I wasn’t doing any exercise at all.

I had lost a lot of weight in my mid 60s when I was diagnosed with Type 2 diabetes. My doctor wanted to put me on insulin so I asked if there was an alternative. They said I could lose weight and change my diet. He doubted I could do it. He said if I went back in 30 days and had lost one pound we could talk about it. Well, I went back and I had lost 16 pounds. He was very pleased and I became his star patient. I actually lost about 75 pounds altogether. The Type 2 diabetes and my sleep apnea went away.

If I put my mind to something I can change my ways, and I did. It was the same thing when I started the exercises for the knees. Fortunately, I’m not on oxygen but I see people at the gym who are. They may not be going as fast or as hard as I am, but they’re just as determined. I’m a goal-setter and my goal is to see my grandson graduate from high school. He’s 13, so I’ve got to beat a lot of odds to do that. But, I’m moving up.

When I found out that I had IPF I talked to one of the trainers at the gym where I was going for physical therapy and told him I had a lung problem and I wanted to exercise my lungs. He told me that I could do it by lifting the weights differently. Every weight I lift now, whether it’s upper body or lower body, I do a breathing exercise with it. I take a deep breath, hold, and then exhale. When I’m riding the stationary bike, I’m concentrating on my breathing just as I’m concentrating on the miles and the time. Part of it’s mental and part of it’s physical. You loosen your lungs and exercise them. It does feel uncomfortable for a while, but it goes away; you sort of break through a barrier.

I think that has really helped my lung capacity. My oxygen level when I was first tested was 89 and now it’s 97. That’s a huge change. You can see the surprise on a person’s face when they’re testing my oxygen level. Everyone sees that I’ve had a healthier progression.

With that being said, IPF is a very insidious disease. Some days I don’t really feel that hot, but I still go to the gym, whether I feel good or not. Instead of doing 30 minutes and seven miles on the bike, I’ll do 20 minutes. I don’t want to overdo it. If I’m not feeling well, I don’t do as much, but I still go. You’ve got to keep moving everyday.

When I was younger I didn’t exercise at all. It’s going on two years that I’ve been working out and I’m a great believer in it. My blood pressure, my heart rate, it’s all come down in the last two years.

I’m not as tired anymore, either. Before, I didn’t have the getup and go; I was falling asleep after dinner every night, and that was really annoying me. I’ve kind of reversed all of that. Now I can do about two hours of exercise every day, sometimes longer.

I believe in positive thinking. The first thing I do every morning when I wake up is smile. It gets your juices going. Sometimes it makes me laugh. I think the positive attitude has been survival on my part.  Attitude is so much of life. That’s the same way with having a disease like this. I was really down for about three or four days, and I don’t usually get down, but I was rethinking my whole life. I’ve decided I’m going to stay as healthy as I can to the end.

I attribute my progression to changing my lifestyle. I think a lot of it, too, is that my wife just refuses to even contemplate that I’m not going to lick this. She saw me do it with the Type 2 diabetes. I think it’s her positive attitude about it. If I’m feeling down, she’ll say, “Aw come on, stop being wimpy.” That’s the attitude I’m around. I’m around a very positive person.

My wife has had breast cancer twice and when she told me about her diagnosis the first time it was the same feeling that I had when I heard I have IPF. It’s like, “What? Did I really hear that right? I can’t believe it.” It just would not register. And then I started analyzing it. I didn’t feel doomed, or angry, just intense. I felt very intense. I was trying to figure out how I was going to learn enough about this disease to have a strategy. I was in a strategic mindset. I found I had all these assets: the clinic, a positive wife, a niece in the medical field, and good research, so I think I’ve done as well as I could.

I’ve had a good life. No matter what it is, my attitude is to either get an expert or learn as much as you can, then do whatever you can. If you have a chronic illness, evaluate your assets and your weaknesses. If you don’t feel you have enough assets, get more. Support groups are incredible assets.

Staying mentally positive is the biggest challenge. I have my routine now of going to the gym, meditation, and acupuncture. Having some type of routine is very helpful. Doing those exercises help me feel better and ready for the day, so staying active is really, really important.

I changed my lifestyle. Change is hard, but I stuck to it and I’m seeing results. I feel the results. I feel better — that’s the payoff.

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