Diet and Exercise as a PF Patient

[Charlene Marshall]

Hi Kim,

Like usual, this is a wonderful column and one that I am confident will help so many people! Thank you so much for sharing it. I can already see some areas where I could improve my own healthy eating habits and increase my exercise and fitness options despite my breathlessness, weakness, etc. due to my IPF.

Best wishes to you and keep the wonderful columns and posts coming as you can! You are inspiring so many of us.

Warmly,
Charlene

[gil]

Kim,

Thank you for the good advice and for the links, I will check out Dr Noah Greenspan’s work.

gil

[Charlene Marshall]

Hi Gil and Kim,

I hope you are both going well!

Gil, are you on Facebook at all? If so, the group Kim mentioned in her column that Dr. Greenspan runs has been really helpful. I just joined it as well and have been “quiet” thus far, mostly just watching the questions circulating the site but even this has been helpful. Here is the link again if you were interested: https://www.facebook.com/groups/UltimatePulmonaryWellness/

 

Kim, I read through this wonderful column a couple of times and just wondered: do you find yourself hungry with only consuming 1000 calories per day? This seems quite low to me, but I know your team approved it so I trust their advice, of course. I kind of want to try this as well, although I just worry I would be hungry on consuming only this many calories per day. How do you curb that hunger, like with what types of snacks that are low-cal and don’t put you over the 1000/day? I try to substitute water to curb my hunger sometimes, or at least help me  determine if I am really hungry vs. just bored. This is good for me regardless because I have a tendency to become dehydrated quickly, although I don’t know if I could manage 1000 calories per day without feeling quite hungry. Do you find you are, and if so, how to you curb that?

Thanks again for a wonderful post!

Warm regards,
Charlene

[Kim Fredrickson]

Thanks Gil and Charlene! So glad my column was helpful. Charlene, good question about getting hungry. I was surprised how much you can eat for 1000 calories if you watch your food choices. I have a protein shake in the morning with a banana, and a big salad with low cal dressing for lunch, usually including chicken. For dinner I usually have some kind of protein and vegetables. I snack on vegetables dipped in low cal dressing, or hummus. I record and measure everything I eat, which really seems to help.

You’ll need to play around with it to see what works for you!

Blessings,

Kim

[Charlene Marshall]

Hi Kim,

Thank you so much for your reply! I am always grateful to hear from you, and how you’re doing 🙂

Your column was definitely helpful and I think I’m going to try and follow your plan of consuming about 1000 calories / day. I have downloaded the MyFitnessPal app and am going to see if I can follow it closely, although it is a bit hard when my day gets skewed from work appointments and meetings. I always have a protein shake for breakfast as well, usually with a banana and blueberries so this will be easy to incorporate into the planning. Which type of protein powder do you use? I really like the Isagenix shakes (for the taste of them) and the macros are pretty good as well, as they are a full meal replacement. The one thing I could do without in these shakes though is the glucose content. I may consider switching, as the shake alone (without the banana/blueberries) is 240 cals. I’ll have to do some playing around though, but your outlining your meals throughout the day is really helpful, so thank you for this. I’m going to try on Monday and see how it goes.

Hope you continue to do well Kim!

Warm regards,
Charlene

[gil]

Kim, Charlene,

I am not on facebook, maybe sometime in the future I’ll return to it.

Kim,

I shared your article with my “best friend” who has RP, retinitis pigmentosa. and it is causing her to go blind.  She is now legally blind and  currently there isn’t a cure.  We talked about how the issues you face are similar to issues she faces and perhaps these issues are common to all who have an incurable illness.  Maybe next time you visit this subject again you can call it “Diet And Exercise For People With An Incurable Illness” or something like that.  It can be an inspiration not only to people with IPF but others who struggle with similar outcomes from an incurable disease.

gil

 

 

 

[Charlene Marshall]

Hi Gil,

Thanks so much for your reply, and I am so glad to hear that your friend who has RP found Kim’s column helpful. I know you’ve talked about her before, and that you really care for her!

I wonder if many of the things mentioned in Kim’s column, as you say, are common to people with many different types of chronic illnesses. I suspect Kim titled her column, and geared it towards people with PF because this is what she has, and can say definitively that the diet and exercise tips she is sharing helps her as a PF patient? However, it is certainly good to know that it applies to others as well. I think because it helped your friend with RP, that I am going to share it with my friend who was just newly diagnosed with Sarcoidosis as well. I hope it helps her too!

I hope you’re doing well Gil, and thanks as always for sharing your thoughts with us 🙂

Cheers,
Charlene

[Kim Fredrickson]

Hi Charlene,

Thanks for your response to Gil and myself.  Good luck! I drink Atkins premade shakes. I especially like “Milk Chocolate.” It is 160 calories, 5 carbs and 15 protein. The cheapest place I’ve found is on Target online. I have them shipped to me. They don’t sell the powder, just premade. Hope this helps!

Kim

[Charlene Marshall]

This is very helpful, thanks so much Kim!

We don’t have Target here in Canada anymore, but I will look into where they might have them around where I live. The macros that you have described in the shakes sound really good so I’m going to look into them further for sure!

I haven’t been feeling well at all actually the last few days, and sadly my medical team thinks I might have a concussion from a car wreck I was in when I visited NYC in December. So, my appetite has been gone due to the nausea and dizziness I’ve been experiencing with this terrible headache and neck/jaw pain. I have a CT scan tomorrow to confirm what is going on. Once I feel a bit better, I’m going to start the reduced calorie days 🙂

Hope you’re doing well and thanks again for taking time to respond.

Warmly,
Charlene

[Kim Fredrickson]

Hi Gil,

Thanks so much for sharing my column with your friend. I hope it is a help. The reason I often have PF in the title is that I’m hired to write a column for pulmonary fibrosis news about issues patients deal with. I’m so glad they are a help to others as well. I can add a tag, “incurable disease” to future columns, that might cause my column to come up on an internet search for incurable diseases. Thanks so much for the great idea!

Kim

[Charlene Marshall]

That is an excellent idea Kim! I think I will try to be more mindful of this in future as well… thank you so much Gil for helping bring this to light for both of us 🙂

Hope you’re doing well Gil.

Cheers,
Charlene

[gil]

Kim, Charlene,

You are welcome and thank you for the kind words.

Charlene,

It sadden me to hear about the accident and your headaches and neck pain:  I wish I could do more than pray all turns out well.  Best wishes tomorrow and I hope you recover soon .

 

[Charlene Marshall]

Hello Gil, my friend,

How are you doing?

Thank you so much for your kind words about my headaches and neck pain. I am so thrilled to say that it does feel like it is subsiding (thankfully!) and that I think I’ll have some good answers soon since I just had my head CT done this morning. If I have mostly good days, I’ll take them, as I can manage a few really bad days like I had been having, if they balance out with good days. Thank you again for your kind words, they really mean a lot to me and I hope you are doing well.

My trip to Vancouver is 1 week away, and I’ve already been thinking about the different pictures I am going to try and capture for you so I can show you some of my trip 🙂

Cheers,
Charlene.

[Kim Fredrickson]

Hi Charlene,

So glad you are getting a little better. Have a wonderful trip!!!

Kim

[Charlene Marshall]

Thank you Kim. I’m really looking forward to it 🙂

Warm regards,
Charlene.

[gil]

Charlene,

It seems part of our IPF is having periods of bad days and then we go on the upswing. What I’ve noticed is that those bad days seem to get worse for me and last a little longer and are compounded by other stuff we may have such as allergies or other ills such as the flu.  I also noticed that the sun still comes out the next morning and it is always a plus reading your column. Both you and Kim are inspirational, I am glad I ran across this forum.

I am glad you are going to Vancouver, it is in my bucket list.  Take many photos and share with us lessons learned such as what obstacles one encounters when traveling that are due to our IPF as well as solutions you discovered.

Enjoy your trip and keep us posted.

gil

 

 

 

[Charlene Marshall]

Hi Gil,

Thanks as always for your reply!

Yes, I completely agree with you regarding the good days and bad days. I tend to have longer stretches of good days still, so I am thankful for that and hope it lasts for a long time yet to come.

I am sorry to hear your bad days seem to be getting longer and more frequent, or influenced by things out of your control such as allergies or viruses. It is so tough when we do everything that we can to remain healthy and yet, things out of our control can contribute to such a decline for us. This is what scares me most about an exacerbation… sometimes it is entirely out of our control and the impact can be detrimental to our health. However, as you say: each day is a new day to begin anew and hope for a good day compared to the previous one! I am so grateful you have joined us in this forum too Gil, and thank you so much for your kind words.

I absolutely will take lots of pictures and share some of my experience with you when you return. I have this visual of being “on top of the world” when I stand atop Whistler Blackcomb. My friend just bought us the Peak2Peak tickets at Whistler (have a look on Google if you can) and the scenery looks stunning. I’ll do my best to capture it in my mind and camera, and share when I return.

Chat with you soon and as always, reach out anytime my new friend.

Cheers,
Charlene.

[Christine]

I know how hard it is to diet and exercise with IPF. I did very well last year but I was very motivated trying to meet the BMI requirement for a lung transplant. I met the goal but was turned down anyway for other reasons. I had lost 18 pounds in 3 months. In the last 6 months I have gained back I pounds but have been maintaining my weight.   When I was dieting, I didn’t count calories. I just stayed away from sugar and carbs as much as possible. I use to eat bacon and eggs with toast frequently for breakfast. I stopped the toast and only ate some bacon once in a while. I usually ate a salad with grilled chicken or some other protein for lunch with balsamic vinegarette. Other times I would make a shake with some plain, 0% fat Greek yogurt, a little milk, and blueberries. Or if I wanted a more savory flavor, I would use sundried tomato and basil instead of fruit. I would add collagen peptide powder for extra protein. It dissolves easily and has no flavor. For a snack I might eat a sliced apple with a tablespoon of natural peanut butter.  Dinner would be whatever I usually would make (protein, veggie, and starch) I would just eat a smaller portion and not deny myself. If I are dessert, it would be a sugar free pudding or jello cup.

The biggest help was that I wrote down EVERYTHING that I ate. I also weighed myself every morning before breakfast for the best comparison.

At that time I was going to a pulmonary rehab twice a week to exercise. I began exercising using 6L O2 but couldn’t exercise hard enough to be effective at that rate. I eventually got up to 10-15L with a mask to workout. Once I got turned down for the transplant, insurance didn’t cover it any longer.  I now exercise at home with a treadmill, mini-cycle which also works as an arm bike and I have Thera bands and small free weights. When I exercise, I use a mask and 12-15 L O2.
I Fortunately I have been accepted into a different transplant program and have been listed a couple of weeks ago! I can maintain an O2 sat of 92-93 on 2L if I am sitting still. However, if I stand up and walk I need minimum 6L if I move real slow but 8L is better.  Currently seasonal allergies are making breathing much more difficult.

[Charlene Marshall]

Hi Christine,

It’s nice to hear from you! Thanks for contributing your thoughts to this thread 🙂

Wow, good for you for the weight loss and hitting the BMI for the transplant assessment. Sorry to hear that program didn’t work out, but I am thrilled that you were accepted into another program. Congratulations!

Those are really good tips, as I actually find counting calories quite daunting for me (but I can and have done it). I like the apps where you can scan the nutrition label and identify the portion you’ve had and it inputs all the data. However, I like to make a lot of my meals and I find it harder to track everything by hand. That being said, I’ve done well this past week with a reduction in calories. Weight loss isn’t necessarily my goal, but it certainly helps us all feel better so I figured if I just started eating better then I’d feel a bit better. Your diet above sounds totally manageable for me, thanks for sharing some of your ideas with us! 🙂

Did you write down what you ate just to be able to look back and reflect on anything that you could do differently? Or did you write it down to get a bit of an idea of the amount of calories you’re taking in? Just curious as to the reason behind why you did this, if you’re comfortable sharing…

Thanks also for sharing your experience with exercise and O2, I know a lot of people wonder about this! I’ve been able to maintain and exercise regimen, although my fatigue after a full-days work makes me not want to do much in the evening. I know it is important that I do, so thank you for sharing how to manage it and make it work for you. Again, so happy to hear you’ve been accepted into this new transplant program. You’ll be in our thoughts and prayers. Sending you nothing but best wishes!

Warm regards,
Charlene.

[Christine]

Hi Charlene,

I did write down my daily weight and everything I ate for the entire time I was dieting. It was the only way I could be sure I as accounting for everything I put in my mouth. You know how easy it is to forget that “spoonful of ice cream” or those “couple crackers” you ate to satisfy your cravng or hunger. Those things add up if you ignore them. I kept a small note pad with the info.  If my weight went up I could see why. Sometimes it would be water weight if I had eaten too much salt. In any event I would be more careful of what I ate until my weight dropped. It worked for me.

Since you said you get fatigued after a full day of work, you must still be employed. I am a retired senior citizen. But I still try to stay as active as possible. I still do housework, grocery  shopping and go to my grandsons’ sports games. Although not as much as I used to. My husband has really stepped up to make life easier for me. I also belong to an art league and take 3 art classes a week. I just have to carry a lot of O2 with me. I’m not ready to just stay home. The important  thing is to keep moving particularly if you’re  older.

 

[Charlene Marshall]

Hi Christine,

Thanks for your reply, and for clarifying the thought process behind writing everything down … that makes sense to me! Maybe I’ll start doing this, and keep a running tally each day or some sort of log in my phone so that I always have it readily available to jot things down. Did you find when you did this dieting that you were hungry, and if so, what satisfied that hunger? That is one of the things I struggle with when dieting, is feeling hungry and between this and medication switches, I randomly feel nauseous and hate that feeling. I’m still looking for a good and healthy solution to resolve when I am feeling hungry but don’t necessarily need to eat something again.

Yes, I am still employed full-time and actually only just started my career as I just turned 30 this past fall. I’m so glad you’re able to do still do things that bring you joy, even if it is on a smaller scale. I need to do a bit more work-life balance I think (and I have the flexibility to do this, for the most part) to prioritize exercise. I think maybe I’ll try to do that this week!

Thanks for sharing 🙂
Charlene.

[Christine]

Wow, you are so young to have to adjust your lifestyle to accommodate your disease. In perspective I  have been fortunate to have enjoyed an active life for 70 years before my diagnosis. That was 2 years ago. I still stay as active as possible but it is difficult when you have to carry a lot of O2 with you.

While I was dieting I mostly just  endured to hunger until my body finally felt satisfied with less food. I would drink water to help me feel full and lessen the craving to eat. I could only suggest that you have some cut up veggies to snack on when you must eat something.  I have been fortunate that medications have not made me nauseous.

You didn’t say what kind of work you do but any kind of exercise you can get during the day is helpful in both burning calories and keeping you fit. If it’s sitting at a desk just standing up and sitting down several times in a row increases your heart rate and strengthens  your leg muscles. This can be done several times throughout it day. It also encourages good  circulation.

Wishing you good health,

Christine

[Charlene Marshall]

Hi Christine,

Yes, unfortunately I am one of those “rare” and “lucky” ones in getting to deal with this disease as a young adult. To say it has been difficult on all levels – physically, emotionally and socially, is an understatement. I am still relatively active in terms of getting through my day, but have had to give up many of my favourite sports and active hobbies, which was tough. I agree, it can be very difficult to be active with lugging around oxygen. Glad to hear you’re striving to stay as active as possible 🙂

I’ve been working on drinking more water in general, both to remain hydrated (I became dehydrated and with my meds, it was a mess requiring hospitalization) as well as help me feel full when I know that I shouldn’t be hungry. I’ll continue to work on this I think, as I know your stomach does shrink and adapt to less food.

Mostly I am at a desk, but do work with families so I am in and out of meetings, their homes and my office. I’ll keep your tips in mind for small, but helpful exercise ideas. Good circulation is also important for me, so your suggestions are definitely beneficial for me. Thanks!

Regards,
Charlene.