Re: Pulmo Rehab

[Guest guest]

Caro,

The same thing happens to me when I first start any type of exercise. My o2 level goes up- I think because I am breathing deeper. But it goes down a few minutes after I stop the exercise or if I walk more than 10 minutes. My doctor kept telling me I didn't need oxygen until I was tested after walking for 10 minutes and I had dropped to the low 80's. I totally understand about the weight. I am 5'0 exactly and small boned. I am at 150 right now and for me that weight is obese while my daughter who is 5'7 looks great at the same weight. I originally gained 40 pounds from the prednisone, lost 15, gained back 5 and just can't seem to keep it off. If I could only grow a few inches I would be fine! Take care-

Sarcoid/PF 3/2006 California

Pulmo Rehab

Sher,Just wanted to say I went to my first pulmo rehab visit yesterday. Had to the 6 minute walk. The strangest thing happened. I was at 95% sat when I started and it actually went up to 99 after walking!! How weird is that? When I walk outdoors I can barely breathe after 6 minutes of walking. My daughter said maybe I don't need to walk outside. Guess I can go to the mall or something and walk, huh? I can't TOTALLY avoid walking outside, though, how would I get anywhere? HA!! Anyhoo, I think I am really going to like this rehab thing. She told me I can probably start next week, 3 days a week from 1 to 3, Monday, Wednesday, and Friday. They have a dietitian and are going to try and help me drop 20 pounds. I weigh 135, but like I said, am 4'11", so every pound looks like 10. Therapist said after I finish the program, I can join the rehab center for $20 a month and use the equipment any time I

want. Hopefully that, with my Total Gym, will get me in better shape. She said they have oxygen there if I need it and a nurse will always be monitoring my sats while I am on the machines. I think this is just what I needed!! Thanks for all the encouragement! !Hope you all have a great day!Caro

[Guest guest]

Hi Joe,

If you send me their mailing information to my private (well, not so

private) email ls_pulmonaryfibrosis@... I can send them our

patient handbook to have on hand for pulmonary fibrosis patients.

Continue the good work. I think pulmonary rehab is great.

Leanne

>

> THANKS!!!

> I asked 2 of the nurses if they knew difference between COPD

and IPF

> and they seemed to skip around a bit. I hope I helped them learn a

little

> more. Both were real young.

>

>

>     JOE/JOANIE

> JOE 60 IPF1/2008

> GRIFFIN, GA.

> -- Re: Re: Pulmo Rehab

>

> Joe,

> Pulmonary rehab's vary greatly from place to place. It sounds like

the one

> you're enrolled in is pretty basic. You can still gain tremendous

benefit

> from it however. The exercise alone will help get your body in the

best

> possible condition for coping with your lung disease. They are

monitoring

> your sats and vital signs so you know you are exercising safely

which is

> obviously the biggest concern.

> I would keep asking questions of the nurses and respiratory

therapists, the

> squeaky wheel gets the grease. By continually striking up

conversations with

> these people you are showing them that you really want to learn

about how to

> best take care of yourself. Let's face it, the staff at these

programs get

> very accustomed to patients showing up because their doctor

insists and just

> going through the motions. That's not what you're doing. You

really want to

> squeeze the program for everything you can get out of it. Make

sure they

> know that!

>

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> Re: Pulmo Rehab

>

>

> >

> > Hi all,

> >

> > Haven't had a chance to post for a few days but I am back!! I

had

> my

> > second pulmo rehab visit yesterday. I learned pursed lip

> > breathing!! Now I actually know what it is!! She also tried to

> > teach me diaphragmatic breathing and I think I will never get

> it!!

> > It is totally opposite of the way I breathe. She said I need to

> > learn to breathe through my stomach instead of my lungs. I am

> > supposed to push my stomach out when I inhale instead of sucking

> in

> > when I inhale which is what I do. I will never get that one

> right!!

> > I got to get on all the machines they had and they checked my

sats

> > after each one. Did 5 minutes on a rowing machine, sat was 99.

> Did

> > 5 minutes on an exercise bike, sat was 99. Did 5 minutes on a

> > NuStep, sat was 99 (actually I think it dropped a little then

> because

> > she didn't take it right away after I got off the machine. I had

> > rested a few minutes before she took it. Lastly was the

> treadmill.

> > Was SUPPOSED to do 10 minutes at 1.2 mph (not fast at all). Made

> it

> > to 5 minutes and I was like, man this is a long 10 minutes. She

> said

> > if you are getting tired, you can stop. I said no. I was going

> to

> > MAKE myself do the 10 minutes. Next minute went by my chest felt

> > like it was on fire!! She came back and stood beside me and

said,

> > you are just huffing and puffing. We had better stop you at 8

> > minutes. Got off, sat was 91. She said if it was 89, I would

> have

> > needed oxygen or they may have even sent me over to the ER. I

> asked

> > her, " so if I had made the 10 minutes, it probably would have

hit

> > 89? " She said yeah, probably. So I only made it 1 hour yesterday

> > instead of two, but am to go back Wednesday and Friday, so will

be

> > Monday, Wednesday, and Friday from 1 to 3. I knew my sats had to

> be

> > dropping during exercise cuz I get so SOB. I just didn't realize

> how

> > much. So basically, after 20 minutes of exercise, I dropped to

> 91.

> > I feel like I am going to be seeing oxygen in the very near

> future,

> > if nothing else for now during exercise. The thought scares the

> hell

> > out of me!! I know so many of you are already there and I have

> been

> > fortunate to have made it this far without it. I have been

trying

> to

> > get a cold the last couple of days. Started with the sneezing

and

> > cough Saturday, coughing more yesterday, coughing even more

today

> > with sinus drainage. YUK!! That is all I need. Weird how this

> > disease sometimes stays dormant and you forget you have it. I

> have

> > been fairly well the last few weeks, then boom the bomb drops on

> you

> > again and you realize all over -- HERE WE GO AGAIN!! I am sick

> > again. I REALLY REALLY HATE THIS DISEASE!!! My Birmingham date

> is

> > getting closer and closer (June 17) and I am excited about that,

> so

> > that is keeping me pumped up somewhat.

> >

> > I hope all is well with everyone. I have been trying to keep up

> with

> > the posts but this is the first chance I had to actually post

> > anything. Have been swamped with work but keeping busy. Maybe

> why I

> > got sick again. I am just exhausted.

> >

> > Well, I hope you all have a wonderful day and a wonderful week!!

> I

> > think of you all each and every day!! Hugs from me!!

> >

> > Caro

> >

>

[Guest guest]

IS THERE A GROUP OF YOU MEETING IN BIRMINGHAM? JOE AND I ARE ABOUT 3 HOURS AWAY SOUTH OF ATLANTA AND WE ARE LOOKING TO MEET SOME OF THE PEOPLE FROM THE WEBSITE...NOT TRYING TO BUTT OUR WAY IN, BUT IT DOES SOUND LIKE THAT DOESN'T IT? HA HA

JOANIE

-- Pulmo Rehab

Went for another pulmo rehab visit today. My sats didn't drop but she said my heart rate is still too high. She made me sit and rest afterwards before I could leave. My weight has dropped from 143 to 139-1/2 today. I am so excited about that!! I would really LOVE to get to around 120 or 125. It is so hard to lose weight when you don't feel good anyway most of the time. Had a sore throat all day yesterday and have this heavy feeling in my chest today with a productive cough. I got on the exercise bike and broke out in a sweat so bad they had to get me a towel! How embarrassing!! Only after 10 minutes. The nurses were great, though, and I don't think they were really worried about the way I looked, but I was!! They sent us home with homework -- actually it is just practicing breathing and we have to write down when we do it and how often. Don't have to go back 'till Wednesday due to holiday, so hopefully I can keep the weight off I have already lost. I have to work Monday, so won't be doing any holiday cooking, so that should help. Guess they will be telling my pulmo soon and I will have to go get the ole ticker checked out. GREAT!! Birmingham is only a little over 3 weeks away.Caro

[Guest guest]

Oh PLEASE, I wannnnna do it sooo badly. Wouldn't that be great??? !!!! Peggy, ipf 6/04 Florida  Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Joanie,I think Caro is referring to her upcoming evaluation at UA Birmingham. I'm not aware of a get together but it's not a bad idea at some point. There are bunches of us in the southeast. Pretty much the same group that met in Chattanooga last October! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive        Pulmo Rehab Went for another pulmo rehab visit today. My sats didn't drop but she said my heart rate is still too high. She made me sit and rest afterwards before I could leave. My weight has dropped from 143 to 139-1/2 today. I am so excited about that!! I would really LOVE to get to around 120 or 125. It is so hard to lose weight when you don't feel good anyway most of the time. Had a sore throat all day yesterday and have this heavy feeling in my chest today with a productive cough. I got on the exercise bike and broke out in a sweat so bad they had to get me a towel! How embarrassing! ! Only after 10 minutes. The nurses were great, though, and I don't think they were really worried about the way I looked, but I was!! They sent us home with homework -- actually it is just practicing breathing and we have to write down when we do it and how often. Don't have to go back 'till Wednesday due to holiday, so hopefully I can keep the weight off I have already lost. I have to work Monday, so won't be doing any holiday cooking, so that should help. Guess they will be telling my pulmo soon and I will have to go get the ole ticker checked out. GREAT!! Birmingham is only a little over 3 weeks away.Caro <1.470949879>

[Guest guest]

J & J, Trust me if there is a meeting anywhere you'll know and don't need an invitation. It is all Family.  ;)I hope we have another one soon. I would love to get to go to one more..   Peggy, ipf 6/04 Florida  Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. On May 24, 2008, at 10:11 AM, JOE & JOANIE LAMENSKIE wrote:IS THERE A GROUP OF YOU MEETING IN BIRMINGHAM?  JOE AND I ARE ABOUT 3 HOURS AWAY SOUTH OF ATLANTA AND WE ARE LOOKING TO MEET SOME OF THE PEOPLE FROM THE WEBSITE...NOT TRYING TO BUTT OUR WAY IN, BUT IT DOES SOUND LIKE THAT DOESN'T IT?  HA HAJOANIE  --  Pulmo Rehab Went for another pulmo rehab visit today. My sats didn't drop but she said my heart rate is still too high. She made me sit and rest afterwards before I could leave. My weight has dropped from 143 to 139-1/2 today. I am so excited about that!! I would really LOVE to get to around 120 or 125. It is so hard to lose weight when you don't feel good anyway most of the time. Had a sore throat all day yesterday and have this heavy feeling in my chest today with a productive cough. I got on the exercise bike and broke out in a sweat so bad they had to get me a towel! How embarrassing!! Only after 10 minutes. The nurses were great, though, and I don't think they were really worried about the way I looked, but I was!! Theysent us home with homework -- actually it is just practicing breathing and we have to write down when we do it and how often. Don't have to go back 'till Wednesday due to holiday, so hopefully I can keep the weight off I have already lost. I have to work Monday, so won't be doing any holiday cooking, so that should help. Guessthey will be telling my pulmo soon and I will have to go get the ole ticker checked out. GREAT!! Birmingham is only a little over 3 weeks away.Caro <DA2F2AD9-9965-4848-86D3-DD093F344DF2>