Jump to content
Sclero Forums
peanut

Pulmonary Rehab

Recommended Posts

I just got back from my evaluation for pulmonary rehab. It was very interesting. It was lead by a nice woman who I might nickname sarge because she's so straight and to the point. She told me I do all these things wrong: breathing, using my inhalers, etc. I told her I have difficulties making the bed and vacuuming and I guess they will cover that in the class sessions, so I have lots to learn.

 

As a part of the evaluation, I did a 6MW with my portable helios. We stopped it half way through and had to restart. Apparently I'm not getting enough with 4 liters pulse-I dropped to 74 sat. No good. She put me on continuous 6 liters and we started the 6MW again. I was low 80's, which is a bit better. I guess my 02 script needs adjusted.

 

She also told me I’m at 95 sat resting so I don't need it all the time. She told me that fatigue and oxygen aren't necessarily related. Then why do I get so tired without the 02? She said it's muscle fatigue not lack of 02... hum. I’m not sure about that one.

 

Well that's all for now... it's sure to be an informative 12 weeks.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hi Peanut,

 

12 weeks - that's a long time. Thanks for sharing what goes on in pulmonary rehab.

 

That's interesting about her saying that fatigue and lack of o2 aren't related. It makes sense that they would be. I'm not so sure about that either...

 

Maybe we can conduct a little experiment and take a healthy person and restrict their o2 diffusion and make them clean house or run around after little kids and see if they get more fatigued than they do with perfect diffusion. :P

 

 

Keep us up to date with your progress.

 

Take Care,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

WOW Peanut - sounds like a pretty thorough first day in rehab. That was some valuable information you found out about your O2 sat. I'm glad that you don't need the oxygen when at rest. It sure drops when you move though. Mine use to drop into the low 80s after walking just a few feet, but now it takes more exertion. I think just "doing it" has really helped.

 

It's good that you have all this information so soon after your first cytoxan IV. I'm really cheering for you to see improvement through these treatments and 12 weeks of rehab.

 

Thanks for the update.

 

Big Hugs to you Darlin'

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

barefut,

you are soo funny! your comment about a normal person cracked me up!

 

sarge told me that scleroderma wasn't causing my body to reject my lungs but that my body was creating more thicker fibrotic tissue. weird. she also said idopathic pulmonary fibrosis can go away. i was like really? my fibrosis can go away? hum. i don't think what she said pertains to scleroderma related fibrosis...

 

i still wear my oxygen ft just not as high. its a pain to turn it on and off and on and off. i'm lazy.

 

i will be doing interval training. she said my muscles aren't developing because after 2 minutes they're too busy searching for air to build muscle, but if I stop and rest every 2 minutes it allows my muscles to catch up on oxygen, rest and eventually build endurance. it should be interesting.

 

hearts & health,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hi Peanut,

Hopefully with your oxygen adjusted you'll be feeling better. My dr told me I am exhausted and my legs are fatigued because of lack of oxygen. He said it makes sense because when you are struggling for air your body can't do what it normally does so it is working harder just to do the normal tasks.

 

she also said idopathic pulmonary fibrosis can go away. I am not sure if sarge is up to date with her information. i found this information for you: Idiopathic Pulmonary Fibrosis

 

Please keep us posted on your therapy.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Peanut,

I can't wait for you to tell us more about your pulmonary rehab. I did cardiac rehab in Aspen because that is all the small hospital had to offer. I guess it was basically the same type thing but I didn't finish it because I moved to Denver. I wonder about the oxygen and fatigue too. It is hard for me to trust many people's advice in the medical field, when it comes to scleroderma, because not that many people are that educated about it. That is just another hurdle.

xo,

Jen

Share this post


Link to post
Share on other sites

Hey friends,
I think I'm beginning to get it. I think muscle fatigue is causing my general fatigue more than my shortness of breath. But because my muscles haven't been getting the oxygen they need they can't build so I’m all rubbery now, but not for long. It will be a slow process of building muscles thru interval training but I will get there.

Today was my first exercise day. Everyone was so nice, knowledgable and I went at my pace which was great. Rehab involves both exercise and classes where they teach you how to vacuum and breathe, go to the bathroom and breathe, have sex and breathe. Lots of very practical stuff taught by social workers, dieticians, therapists and other professionals. My classes start at the end of October. My exercises were very light: 2, 2 min reps of 1.7 on the bike… 6 exercises total alternating arms and legs. I feel tired and sore - the good kind of sore - it just tells me that's how atrophied my muscles are.

After my class, I went to a talk given by sarge. It was great to hear that she and the clinic are both known internationally for their work. She said that many pulmonary/cardiac rehabs are only exercise and that classes are very important.

I did notice that I have troubles catching my own pulse. I think the skin is so thick in my fingers and wrist that it takes me a long time to get it.

If you have lung issues it might be something worth asking your doctor about...

Hugs + health, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Peanut,

 

Thanks for another lesson in pulmonary rehab. I find it very interesting. Like Sweet, I didn't know there was such a thing either.

 

Does your rehab therapist know you have nick named her "Sarge?" Would she mind if you actually called her that?!

 

You funny.

 

Love ya,

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

B,

ya know I told her at the meeting and she said well it's a lot nicer than some of the names people have called me. i told her it was a loving nick-name.

 

well I'll keep updating if you're interested :)

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Your class (and Sarge) sound like they will be very helpful to you. I do hope you keep us posted on your progress throughout. And that your muscles will soon reap the benefit of all that vacuuming, etc. :)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Well Friends,

I don't start my classes till the end of the month but I did want to share with my friends who have ILD - as I mentioned before the pulm rehab has me doing interval training. Today, I applied that to shopping. I went to the mall to shop for sandals. I walked for about two minutes then rested letting my oxygen catch up. The rehab people say its better to walk slower for longer... so I walk a really easy pace. Anyway, shopping usually tires me out quite quickly, but today it became a pleasant experience.

 

If you have ILD give it a try... it may help.

 

hugs, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

I forgot... I should share what I learned about oxygen & showering.

Sarge said showering takes a lot of energy and that I absolutely should be wearing oxygen. I also turned up my oxygen and it helps. I asked her about a shower chair and she said absolutely. I had been pricing shower chairs and they're like $40-$50. I didn't want anything super fancy. So I put a rubbermade stool I bought for $12 in the shower and it works fine.

 

just a thought...

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hey Peanut! Thanks for the info you've been posting. I'm having lots of trouble with, well, after reading I'm not sure. I thought my fatigue was/is related to not getting enough air to my body. I'm definitely not on 02 - not bad enough last testing, but it's good to know there are ways to cope & compensate whatever the lung problem. I don't go to pulmo until 10//24. I keep trying to learn as much as possible so I can be an "informed" (consumer) patient!!!! Thanks again,

Michele


Soft hugs your way,

 

Michele

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×