Oxygen needs and other stuff

[Guest guest]

Hi folks. I was interested in reading the wide

variations of oxy needs. I can be on 4 at rest but need to be on 8-10

for activity. In order to do the treadmill for 23 minutes at 1.5, I need

to be on 10 with a re breather mask. I see now I am not alone on the wide

variation of o2 needs. Good reminder from Bruce, I need to do that

overnight test too –I am using a CPAP machine.

One tip I offer when showering—when you get out of the

shower, put on a terry cloth robe and slippers –it’s easier

than having to use the towel to dry off.

On my last pulmo visit, my PFTs again showed some

improvement – but I can’t see where it’s making any

difference in my being sob. That is discouraging

to me. I want so badly to get rid of this

oxygen. Doc is going to up my cellcept dosage to 3000 mg a day with

the hope that it will get me off prednisone (currently at 5 mg per

day). Anyone else taking that much cellcept? Also doc ordered

an echocardiogram with bubble – anyone ever heard of that? I

am waiting to hear when that is scheduled.

Thanks for listening.

Sue D.

62 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

Hi Sue

My transplant doc suggested that I ask my pulmonary doc about cellcept. I forgot to do it at my last appt. The next one is in Nov. What can you tell me about using cellcept instead of prednisone?

I like your suggestion of using a terry cloth robe after your shower. I don't have one, so i can't try it until i buy one.

Pink Joyce IPF 3/06 Pennslvania

Subject: Oxygen needs and other stuffTo: Breathe-Support Date: Tuesday, October 7, 2008, 9:50 AM

Hi folks. I was interested in reading the wide variations of oxy needs. I can be on 4 at rest but need to be on 8-10 for activity. In order to do the treadmill for 23 minutes at 1.5, I need to be on 10 with a re breather mask. I see now I am not alone on the wide variation of o2 needs. Good reminder from Bruce, I need to do that overnight test too –I am using a CPAP machine.

One tip I offer when showering—when you get out of the shower, put on a terry cloth robe and slippers –it’s easier than having to use the towel to dry off.

On my last pulmo visit, my PFTs again showed some improvement – but I can’t see where it’s making any difference in my being sob. That is discouraging to me. I want so badly to get rid of this oxygen. Doc is going to up my cellcept dosage to 3000 mg a day with the hope that it will get me off prednisone (currently at 5 mg per day). Anyone else taking that much cellcept? Also doc ordered an echocardiogram with bubble – anyone ever heard of that? I am waiting to hear when that is scheduled.

Thanks for listening.

Sue D.

62 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

Sue

Echocardiogram with Bubble. They simply inject a saline solution through

an IV to help them see and measure the flow of blood better.

Glad your PFT's are better. Now, the reason you may not feel that is

that there are variations from testing. The long term trend is more

important than a single test. A little side issue is that we actually

seem to develop more skill at PFT's which improves our scores sometimes.

Still, stable is a very good word, one of our favorites.

Your shower tip is excellent.

Now, the " I want so badly to get rid of this oxygen " sort of disturbs

me. Do you want to stop eating or stop sleeping or stop doing other

things so essential to your life. Try to focus your desires on

reasonable goals such as " I want so badly to remain active even with the

use of supplemental oxygen. " Oxygen is our friend. Yes, its a pain

sometimes but we adjust. I laugh at hotels when I have them take my

reservoir in that I'm " Have Oxygen, Will Travel. " You can either hate it

or embrace it. But the oxygen isn't the bad. The disease is what we

hate. Disease=bad, Oxygen=good. The problem is that the oxygen is a

reminder. But, I thank my oxygen for every day that I'm able to function

when I couldn't without it. Think of life without it. I know mine. I

would not be able to move around without using a powerchair, even in my

home. I wouldn't be able to do anything except sleep, eat, watch tv, and

use my computer. I'd even need someone to bathe me. Oxygen gives me life

both figuratively and literally. Name your tanks if it helps, or get

them cute covers. They are there to stay so please try to find a way not

to let them be an unpleasant reminder but just a part of living.

>

> Hi folks. I was interested in reading the wide variations of oxy

needs. I

> can be on 4 at rest but need to be on 8-10 for activity. In order to

do

> the treadmill for 23 minutes at 1.5, I need to be on 10 with a re

breather

> mask. I see now I am not alone on the wide variation of o2 needs. Good

> reminder from Bruce, I need to do that overnight test too -I am using

a

> CPAP machine.

>

>

>

> One tip I offer when showering-when you get out of the shower, put on

a

> terry cloth robe and slippers -it's easier than having to use the

towel to

> dry off.

>

>

>

> On my last pulmo visit, my PFTs again showed some improvement - but I

can't

> see where it's making any difference in my being sob. That is

discouraging

>

> to me. I want so badly to get rid of this oxygen. Doc is going to up

my

> cellcept dosage to 3000 mg a day with the hope that it will get me off

> prednisone (currently at 5 mg per day). Anyone else taking that much

> cellcept? Also doc ordered an echocardiogram with bubble - anyone ever

> heard of that? I am waiting to hear when that is scheduled.

>

>

>

> Thanks for listening.

>

>

>

> Sue D.

>

> 62 yr old, Fibrotic NSIP dx 9/07, VA

>

[Guest guest]

Extremely well said, Bruce. Everyone comes into this thing thinking (like I did) that to be on O2 is to be defeated. The way you and others have presented the use of oxygen as a new lease on life has lessened my fears about my eventual use. I want to live! The tubing and tanks will be a way to do that more efficiently.

Elisa

Subject: Re: Oxygen needs and other stuffTo: Breathe-Support Date: Tuesday, October 7, 2008, 11:52 AM

SueEchocardiogram with Bubble. They simply inject a saline solution throughan IV to help them see and measure the flow of blood better.Glad your PFT's are better. Now, the reason you may not feel that isthat there are variations from testing. The long term trend is moreimportant than a single test. A little side issue is that we actuallyseem to develop more skill at PFT's which improves our scores sometimes.Still, stable is a very good word, one of our favorites.Your shower tip is excellent.Now, the "I want so badly to get rid of this oxygen" sort of disturbsme. Do you want to stop eating or stop sleeping or stop doing otherthings so essential to your life. Try to focus your desires onreasonable goals such as "I want so badly to remain active even with theuse of supplemental oxygen." Oxygen is our friend. Yes, its a painsometimes but we adjust. I laugh at hotels when I have

them take myreservoir in that I'm "Have Oxygen, Will Travel." You can either hate itor embrace it. But the oxygen isn't the bad. The disease is what wehate. Disease=bad, Oxygen=good. The problem is that the oxygen is areminder. But, I thank my oxygen for every day that I'm able to functionwhen I couldn't without it. Think of life without it. I know mine. Iwould not be able to move around without using a powerchair, even in myhome. I wouldn't be able to do anything except sleep, eat, watch tv, anduse my computer. I'd even need someone to bathe me. Oxygen gives me lifeboth figuratively and literally. Name your tanks if it helps, or getthem cute covers. They are there to stay so please try to find a way notto let them be an unpleasant reminder but just a part of living.>> Hi folks. I was interested in reading the wide variations of oxyneeds. I> can be on 4 at rest but need to be on 8-10 for activity. In order todo> the treadmill for 23 minutes at 1.5, I need to be on 10 with a rebreather> mask. I see now I am not alone on the wide variation of o2 needs. Good> reminder from Bruce, I need to do that overnight test too -I am usinga> CPAP machine.>>>> One tip I offer when showering-when you get out of the shower, put ona> terry cloth robe and slippers -it's easier than having to use thetowel to> dry off.>>>> On my last pulmo visit, my PFTs again showed some improvement - but Ican't> see where it's making any difference in my being sob. That isdiscouraging>> to me. I want so badly to get rid of this oxygen. Doc is going to

upmy> cellcept dosage to 3000 mg a day with the hope that it will get me off> prednisone (currently at 5 mg per day). Anyone else taking that much> cellcept? Also doc ordered an echocardiogram with bubble - anyone ever> heard of that? I am waiting to hear when that is scheduled.>>>> Thanks for listening.>>>> Sue D.>> 62 yr old, Fibrotic NSIP dx 9/07, VA>

[Guest guest]

Cellcept and prednisone: As I understand

it, both of these drugs are anti-inflammatory, but they work in

different ways. Cellcept is supposed to have less side

effects. I have been on it since last Dec. (with blood tests to

check liver and blood count every month or 6 weeks)-- blood

work had remained good and since December there has been a

slight improvement in lung function each time I’ve had them checked.

Doc says he would like to get me off prednisone. Without

the benefit of insurance, I could not afford Cellcept

– 120 pills per month (4 pills a day) is about $1,000 here in Virginia.

Bruce, I am going to save your message about how

you feel about oxygen so I can look at it when I’m feeling down. Since

I was only diagnosed with this disease a year ago last month and have

only been on oxygen since then, I can still remember what it was like to

not have the nose hose. I could just get in the car and go—now

getting ready to go somewhere is like a family with a baby—you

have to think about what you need, how long will you be out, what is

your activity level, etc. Some of my close friends are now planning next

year’s trip to the Greek Islands and we would normally have gone

with them (if I still have any of my retirement money left).

That’s when it really hit me. At least I did one cruise and

saw Alaska before this hit, and having done a cruise it would

be just too much trouble and stressful for me with the oxygen.

Thanks for listening.

Sue D.

62 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

Sue

re: cruises

there is an organization, call Sea Puffers, I think, that organizes cruises for people with oxygen. There are respiratory therapists on board who monitor the patient's O2 needs, and there might be educational classes too.

It's in a publication called "the Pulmonary Paper". You can look it up on line.

You can also look up sea puffers on line.Pink Joyce IPF 3/06 Pennslvania

Subject: Re: Oxygen needs and other stuffTo: Breathe-Support Date: Wednesday, October 8, 2008, 4:37 PM

Cellcept and prednisone: As I understand it, both of these drugs are anti-inflammatory, but they work in different ways. Cellcept is supposed to have less side effects. I have been on it since last Dec. (with blood tests to check liver and blood count every month or 6 weeks)-- blood work had remained good and since December there has been a slight improvement in lung function each time I’ve had them checked. Doc says he would like to get me off prednisone. Without the benefit of insurance, I could not afford Cellcept – 120 pills per month (4 pills a day) is about $1,000 here in Virginia.

Bruce, I am going to save your message about how you feel about oxygen so I can look at it when I’m feeling down. Since I was only diagnosed with this disease a year ago last month and have only been on oxygen since then, I can still remember what it was like to not have the nose hose. I could just get in the car and go—now getting ready to go somewhere is like a family with a baby—you have to think about what you need, how long will you be out, what is your activity level, etc. Some of my close friends are now planning next year’s trip to the Greek Islands and we would normally have gone with them (if I still have any of my retirement money left). That’s when it really hit me. At least I did one cruise and saw Alaska before this hit, and having done a cruise it would be

just too much trouble and stressful for me with the oxygen.

Thanks for listening.

Sue D.

62 yr old, Fibrotic NSIP dx 9/07, VA