My Diet and Exercise Are More Important than Ever

My Diet and Exercise Are More Important than Ever

Just breathe, passionate help for the PF journey

Trying to stay fit is extremely important for a PF patient. This is easier said than done. It is difficult to lose weight when you don’t move a lot, and it is hard to exercise when you feel tired and worn out all the time. I’ll bet you know what I mean.

I’ve had some recent success in both of these areas that I’d like to share with you. I’m motivated because I need to lose 37 pounds as one of the requirements for lung transplant consideration. I’ve lost 16 so far.

Eating

The transplant dietician at the University of California, San Francisco (UCSF) told me I could eat 1,000 calories a day as long as I got in 60 grams of protein, and ate lots of vegetables and fruit. I’ve been able to follow this plan, for which I am grateful. I record my weight and everything I eat on a free app for my phone called MyFitnessPal.

I learned a lot once I started tracking what I was eating. Although I already ate fairly healthy at meals, I was eating lots of calories and snacking on carbs during the day. I’ve been able to substitute cut up vegetables, fruit, and protein bars when I get hungry.

Exercise

This is where I have made the most changes. I used to go to a pulmonary rehab gym two to three times a week. About a year ago, I had an exacerbation, which is an intensified sickness. Before this, I was using 6 liters per minute (lpm) of supplemental oxygen while sitting and 8 lpm while walking. After the exacerbation, I began using 8 lpm while sitting and 10 lpm while walking. Going to the rehab gym and exercising for 40 to 60 minutes really wore me out, and I couldn’t do much the rest of the day.

When I told my doctor how much the rehab gym was wearing me out, he suggested that I exercise at home, in short amounts throughout the day. I’ve been doing this for three months, and it has helped to build stamina and increase my weight loss. I now exercise for 15 minutes three times a day, employing interval training. With this way of exercising, I work really hard, then rest, and repeat. You’ll see what I mean below. While exercising, I increase my oxygen to 10 lpm and wear an oximeter on my finger to monitor my heart rate and oxygen concentration. I have a list of exercises I pick from:

(Photo by Kim Fredrickson)
  • Bicycle: I peddle as fast as I can until my O2 gets to 92 percent, then I rest until it gets back up to 97 percent. I repeat this cycle for 15 minutes.
  • Walk in the house: I have a 25-foot cord for less restricted movement. I use this cord to quickly walk around my house until my O2 gets to 92 percent, then rest until it gets back up to 97 percent. I repeat this cycle for 15 minutes.
  • Grocery shop or errands: I always wear an oximeter when I do errands to ensure my O2 levels and heart rate stay in the safe range. I have been told by my doctor not to go below 90 percent oxygen saturation or heart rate above 120 beats per minute (bpm).
  • Weights: I’m pretty weak, so I use 1- or 2-pound weights to exercise my upper body. It is especially important to improve upper body strength because it helps us breathe better.

I try to spread out these short periods of exercise throughout the day. I’m losing weight more quickly, feeling better, and have decreased my need for oxygen to 6 lpm when sitting. Before my exercise program, I was using 8 lpm. I still need 10 lpm when walking.

It feels good to know that even though we have the deck stacked against us as PF patients, there are things we can do to increase our fitness level. Any progress is very meaningful. When I started this exercise program, I didn’t think I could do it. I did it anyway, though, and then started seeing some changes.

Great resources

(Photo by Kim Fredrickson)

I’ve been inspired and helped so much by Dr. Noah Greenspan, a doctor of physical therapy who specializes in cardiovascular and pulmonary diseases. He’s also a pulmonary clinical specialist. He has dedicated his life to helping patients achieve the best pulmonary health possible. He wrote a book that I bought called “Ultimate Pulmonary Wellness.” I have really benefited from his work, as well as his website, which has a lot of wonderful information and videos. His book is available to read (but not download) online. Here is a link to his chapter on exercise. He also runs a Facebook group that I’m in. In it, he provides answers to patients’ questions, plus provides wonderful webinars about pulmonary health.

Please check with your doctor before employing any diet or exercise routines.

I’d love to hear from you

What jumped out at you from this column? Do you try to exercise regularly? What benefits have you seen? What other types of exercise do you do?

Please leave a comment below, and share with those who could benefit.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

20 comments

  1. Elayne Lemanow says:

    Hi Kim. Two questions: 1. I am interested in knowing what equipment you have and use at home for your workouts. 2. What type of oximeter and how do you manage to wear it effectively during exercises and walking?
    I am on oxygen and have not been able to effectively use my oximeters during walking/exercising. Any tips greatly appreciated.
    I enjoy your encouraging posts and greatly admire your health maintenance spunk. Thank you.

    • Hi Elayne,
      I use 2 pound weights, and the little bicycle there is a picture of in the column. I use a “ChoiceMMed” oximeter. I ordered it off of amazon. I keep it on my baby finger when walking either continually, or check it at intervals. Thanks for your encouragement! You can do it!

  2. Beverly K Kunkel says:

    I so thank you for your article and introducing me to the Wellness Center with Dr Noah Greenspan. It is exactly what I have been searching for. I am sure you know the difference finding him will make in my life. I have already implemented many of the tools that he speaks of but seeing his book (available from the website) and approach has already relaxed my mind/heart and given me validation I am on the right track. Thank you.

    • Hi Beverly,
      I’m so glad finding Dr. Noah has been so helpful to you. He sure has helped me too. It is so encouraging to know there are things we can do to be as healthy as possible. You can do it!

  3. Susan Scott says:

    Kim, thanks so much for sharing your exercise regimen. I alternate my treadmill, stationary bike and weights. I was doing it for 20 minutes a day. I have to up my o2 to 16-18 lpm to exercise. I think I need to do at least 2 20 minute sessions daily. Thanks!!!!

  4. Pammi Wunder says:

    Kim, thank you for posting this. I am also a member of Noah’ S group UPW and it has been a lifeline for me. His book, posts, information and the webinars are very very helpful! I like your 15 min workouts 3x daily and that you track diet and exercise. You are certainly on the right track and I admire your approach. I can testify that this sort of approach does work as I have implemented many changes in diet and lifestyle in order to manage and live better with HP/PF. Keep up the great work!!!!

  5. Susanne Greene says:

    My daughter just sent me your blog and the PF news site. I am really happy to know about it. I am almost 6 years into the IPF journey. It is only in the last year that I have felt real progression. Now I have a concentrator that goes to 5cf and for outside I use an inogen at 5 with a backup battery. I am thinking I need more as I am really sob with any exertion. So I hope to get the liquid 02 set up. Thank you for your encouraging blog on fighting to get that. I am glad my daughter found you!

    • Hi Susanne,
      So glad you found us! It’s great to have you. It was a fight to get the liquid O2, but worth it. You need your doc to prescribe it, and then fight for it. Don’t give up. Just keep working up the chain. Threatening a lawsuit is finally what worked. You can do it!!!

  6. Christine Gabler says:

    Thanks for all of your information & posts! I need to lose weight to even be considered for the transplant program. I have been trying Weight Watchers and exercising. I really appreciate your sharing! Thanks so much and best of luck to you.

  7. Gary Teh says:

    Hi Kim,
    My wife was diagnosed with PF 6 years ago and she was on supplemental oxygen and lots of medication. However we were able to get her off the medication and supplemental oxygen within 6 months. She is doing very well now and are able to run and do aerobic routine daily.
    My advice would be to seek a good functional medicine doctor and try to eliminate whatever toxins that could still be in your body. Optimizing your body to overcome this disease is the best long term solution. There must be a reason why the scarring occurs.Our immune system doesn’t just attack the lung for no reason. Take care and best of luck to you

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