Exercise

[julie61554]

This may be a stupid question but I'm curious...My transplant team wants me exercising which I am doing but I absolutely hate it! I walk on the treadmill 5 days a week and I do it first thing in the morning to get it out of the way but I just can't seem to get to a point where I don't feel like I have to work so hard at it. And I'm not even walking that fast....only 2.3 mph. I have been able to work up the amount of time I spend walking. I am now at 50 minutes but I don't feel like it is getting any easier. I thought that as you build up, it gets easier and then you have to adjust the workout to make it more challenging. Is it different for people with lung disease? Just so you know my fev1 is 21% and I use 2.5 liters of oxygen while walking.

 

[mom2two]

Yep, I can imagine that 50 minutes 5x a week on just a treadmill is pretty darn boring. You're at Duke, right? I'm pretty much in the same place I think, regarding FEV1. When I discussed exercise with Duke pre-transplant, they said that they wanted me doing 20 minutes on the treadmill, 20 minutes on a stationary bike, 20 on a Nu-step, and free weights at least 3 times a week, preferably 5. Basically I was to go as fast and hard as I could, while keeping my sats above 90, and i could use as much O2 as necessary. So that's what I've been doing. Breaking up the official "hour a day" workout by doing 20 minutes on different machines really helps with boredom, as does having a workout buddy. Do you keep logs of what you do, set goals? Sometimes that can help. Music or TV can also be useful distraction. What is your maximum heart rate when you walk? That can be a good way to tell if you are pushing yourself enough, or too much.

Question for you. If you use more oxygen and exercise a shorter period of time, can you go faster, work out harder? The point of the daily exercise, as I understand it, prior to transplant, is to get your body (heart and major muscle groups) as strong as possible, so you can recover as quickly as possible from the surgery. In some cases where people have not regularly exercised prior to Dukes workup, it may improve FEV1 or FVC enough to postpone transplant. But in general, once your lungs are trashed in the low 20's, exercise wont help your capacity much, although it is great for clearance and improving QoL. The transplant surgeons I have spoken with were all crystal clear that the stronger I could get my heart and major muscle groups, the quicker I was going to get back home post-transplant, barring complications.

I dont if any of this helps, but if you're frustrated, contacting your Duke transplant coordinator is a good idea for suggestions. They're usually really helpful.

 

[julie61554]

I am at Loyola in Chicago. It's not so much that it's hard to do because of boredom. I do have a tv that I watch to try to take my mind off of it. I just feel like I am breathing so hard. I don't cough at all or very little and with o2 my sats stay around 95-96%. I kind of thought after so long it would get a bit easier. And actually we just got a weight machine so I can do strengthening exercises and we also got an elliptical/bike. But the elliptical/bike I can only do 2 1/2 minutes of each at a time and my legs start feeling like noodles. Lol I guess I have to build my strength up in those muscles. On the treadmill, I walk at 2.3 mph (which I know isn't too fast) and I walk at a 7.5% incline. My heart rate can vary a little day by day but usually runs between 135-145. So I am working at about 80% of my max heart rate.

I could try working out harder and shorter periods at a time. Last year I could walk at 3.2 mph and still have my heart rate in the same range as it is now but I haven't tried working out that fast since I got back into my routine. My PT at my local clinic told me to concentrate more on duration rather than how fast I was going so that is one reason I haven't tried. But my transplant team told me that exercise helps with recovery time as well. They wanted me to do pulmonary rehab and I went to a couple visits in January and at first the insurance denied them. So I quit going until that could get straightened out which just did about 3 weeks ago. But since I am on hold for transplant and doing well, I would rather just do the exercise at home and not have the extra appointments until I need to, which they are okay with.

Thanks for your input!

 

[mom2two]

Hmm, I wonder why I thought you were at Duke. I have to ask, since I am very curious, but are you walking at that high incline for the whole 50 minutes? If you are, goodness gracious! What happens if you have only 1-2 degree of incline, can you walk faster, mix it up more? Sounds like your sats are staying quite high on just a small amount of oxygen and with that incline no wonder your heart rate is 135-145. The first rule of exercise is that you got to do something you like or it wont last long-term. I think you should try and find something that you actually like to do. Can you walk outside with your oxygen during some times of the year? Water exercise ? (with the tank on the side of the pool) Stationary bike? (if your legs felt like noodles, build up slowly, or check the settings and make sure you're not trying to do too much all at once). I personally love the Nu-Step, dont know if your place has one, but I turn on some music and get into a groove. Also, dont discount all that running around, laundry, cleaning, etc that moms do every day. That's a lot of "exercise" too! How old are your kids? Mine are 16 and just shy of 12.

 

[scanboyd]

Good morning ladies. Working out takes time and is not easy when you have a low Fev1. This will help us post pone as well as get through the transplant and speed up recovery time they say at UT Southwestern Dallas. The wife and I work out three days a wk. and have been doing this since 2004; more fun if you have someone to exercise with. My Fev1 is 23-25, use 2 Liters O2 for sleep and 2 liters for exercise, sats stay around 95 with exercise and O2 with out O2 they will drop below 90. Not on O2 on a regular daily basis except for exercise. Between exercise and breathing hard while exercising will wear you Out! I try to time my exercise when there is something on TV that I enjoy watching, like Price Is Right or mid day news. If those are not on I surf the internet, U tube some project I am working on. You are not alone! Good luck praying y'all do well.

 

[julie61554]

Yes I was walking at that incline for the whole 50 minutes. Yesterday I set it back to 6.5% which seemed a tad easier. I don't recall that I have ever had the incline set to 1-2 but I will have to try it and see what I can do with a lesser incline. I honestly don't mind the walking, it is just how it makes me feel. I kept expecting that it would get easier but thinking on it more, I guess that is probably not going to be the case unless somehow my breathing improves. I do like the idea of water exercise. That is something I may have to check into. I've never done it, but it sounds fun.

As far as my kids, my oldest is 27 and my youngest just turned 18. So they don't keep me as busy as they used to. lol

I hope you don't mind me asking but I don't recall you saying.....are you actually listed at Duke or are you going through the process of evaluation?

 

[julie61554]

Scanboyd....it sounds like you have had an exercise program going for quite sometime! That is awesome! I do need to get a program going that I like and I wish I could find a partner to exercise with but I don't know anyone. I like to exercise in the morning so I am free the rest of the day. My hubby works during the day so it doesn't work out with him and all my friends work during the day as well.

Your status sounds so much like mine. My FEV1 runs between 21-25% and I too only use 2 Liters of oxygen for sleep and exercise. My sats stay around 95-95% with the oxygen for exercise and at rest I run from 95-97%. I was always curious how my FEV1 could be so low but I don't require oxygen. My doctors don't seem to have an answer and are somewhat puzzled as well. Have your doctors gave you any indication how you do so well without oxygen with that low of an FEV1?