Dorothy

[Guest guest]

Dorothy,

Welcome to Breathe Support! I have been a patient at Duke under the care of Lake on since December of 07. I'm surprised that you travel all the way to Duke from Atlanta. There is a wonderful program at Emory. Several of our members get their care there.

In any case, you should definitely ask your doctor about rehab. Since you live in Atlanta it might be easier for you to participate in a program there. Jane? Joe and Joanie? I'm assuming Emory has a rehab program yes? If you decide you want to participate in Dukes you will need to live up here for a month.

The goal of pulmonary rehab is to get our bodies in the best possible condition given the limits of our lung disease. Healthy bodies can utilize the limited amount of oxygen that our lungs can supply. It makes our hearts stronger and more able to withstand the extra demands put on it by our lung problems.

If you end up choosing to have a transplant at Duke, you will have to participate in the pulmonary rehab program as it's a requirement. Start making a list of questions to ask. If you're anything like me you forget half of what you wanted to ask when you're sitting there with the doctor. Having that notebook with me helps.

Please feel free to ask whatever questions you have and welcome once again!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 7, 2009 12:48:57 PMSubject: Re: Pulmonary rehab evaluation

Hello Everyone,I am new to the group have been reading all your posts. I was diagnosed through a lung biopsy in July 05.I was happy to see information about Duke Medical posted today. I have been seeing a Pulmo specialist at Duke since Aug. 07 but they never mentioned the Rehab Program to me. I was treated with Cytoxan IV monthly for 6 months, then quarterly for a year. I had some improvement during that time but more than reached my limit for the drug. Now on Cellcept since Nov. 08, but seem to be losing ground slowly. What is the goal of the Rehab Program - does it help?Has anyone ever been evaluated for a transplant? What is the process? I am told that is the only thing left to think about.I live in Atlanta but there were not any specialists for ILD in the area, although Emory Univ/hospital seems to have started one up.I go back to Duke on Aug. 20 and am trying to get some questions, etc. ready to see if the transplant

program is the way to go. I am 66 which used to be out of range, but because I have no other health issues they seem to think I would be considered.Dorothy-Fayettevill e, GAUIP-7/05> > >>> > >> This morning I was evaluated for pulmonary rehab at the Duke Center

for Living-Fitness Center. I met with a respiratory therapist who explained the program and then I had my 6 minute walk. First time ever I did a 6 minute walk on an indoor track instead of a treadmill. I started out at 6 liters and after two laps, the RT upped my flow to 8 liters. I walked a total of 1320 feet in 6 minutes, roughly a 1/4 mile. My sats stayed in the low to mid 90's.> > >> > > >> Then I did an exercise tolerence test which seemed to be very similar to a cardiac stress test but with the added attraction of ABG's both before and after. The fun just never ends huh? LOL> > >> I passed everything with flying colors and the next round of rehab that has spaces available starts 9/9/09.> > >> The program at Duke runs for 4 weeks, 5 days a week from 12:30 to 4:30. Intense...as a matter of fact it's actually called "Intensive

Pulmonary Rehabilita tion". (The RT's at my old pulmonary rehab program referred to Duke's as the 'boot camp of pulmonary rehab'.) It involves walking, stationary bike, weight training, pool walking and educational lectures. I am actually looking forward to it. I need a kick start in the exercise dept. I expect it to be both tough and challenging but nothing ventured, nothing gained right? > > >> > > >> We'll see...by the end they'll probably be mopping me up with a dishtowel. lol> > >> > > >> Beth> > >> Moderator> > >> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> > >Wow Beth that is some Pulminary Rehab. My Pulminary Rehab is nothing like that. I go Tues. and Thur. for 2 hours, for 16 weeks. I see a Respritory Therapist for one hour, 15 min on NuStep and 7 min of hand bike, then 15 min on treadmill.

Then I see the Physical Therapist for one hour, 8 min. on total gym, then 3 min of stair steps, then arm weights. That is all I do. > > >> > >Today I had my 6MW test. When I first got there I was told I was having PFT's. I said no I was there for a 6MW, she said no I was scheduled for PFT's. I said NO I was there for a 6MW. She finially called the DR. and found out I was supposed to have a 6MW sombody had made a mistake and scheduled me for PFT's. She finially did the 6MW. I started out a 96 at rest. At 1min I dropped to 90, at 2 min I was at 85, then I dropped every min, at 6min I was at 76. It took 2 min for my sats to come back up to 96. She said I definately qualify for o2. > > >This afternoon my o2 was delivered. I am on 2lpm with exertion. They brought me 7 tanks that each last about 3-3 1/2 hours, they are in a backpack but the are heavy. I can't imagine being gone for 8 hrs. with these. They told me later I

could switch to something else. I guess this will be a learning experience. I can see why some people never go anywhere. Tomorrow I go to Pulminary Rehab, I will see how this goes. More later.> > >> > >Jo Ann 53 MI UIP 9/07> > >>> > >> > >> >>