National Jewish

July 16, 2009

Diane,

Medicare certainly will pay for a 2nd, 3rd and even a 4th evaluation if there is a reasonable question concerning your diagnosis. Humana most likely has the same provisions, but you can call or write. I am anxious to read posts you or others may post. I am finding as a newbie that such posts are very informative. Thanks all for sharing your experiences.

Jerry/Mississippi/54/IPF/April/05Who believes that hard times help us appreciate the good times even more.

Subject: National JewishTo: Breathe-Support Date: Thursday, July 16, 2009, 7:31 PM

After hearing everyone talk so much about NJ I've decided to ask my pulmodudette whom I love but is not an IPF specialist about getting an evaluation from NJ. If she refers me I'm pretty sure Humana will pay as I never asked for a second opinion ever. Finger crossing and good thoughts appreciated.

August 21, 2009

Hi everyone! I am very excited! In two weeks I am driving back to National Jewish for a 6 month check up and I am hoping that they will find my lungs are getting better or at least not getting worse. I have tried and tried to fly but it is a major pain in the ass so I am driving. I am getting a liquid well in my car and a friend is going with me and so I will finally have oxygen 24/7! My trip will take 4-5 days because we are going to take it slow. I have a question about the liquid well that will be in the back seat. First, will it allow the Marathon to be filled from it? And, second, can it be brought into the motel room so I can hook up and sleep? Or, do I have to just keep going to the parking lot and get a refill?

I am also excited because Yavapai College classes start on Monday and that means I get to swim again!!!! I have been going to the Pendleton Center for medically supervised exercise for the last month and I love it! I simply love it! I try to go every day. so far I have gotten up to 1.5 with speed on the treadmill and I have walked 8 minutes and that is a far cry from when I started. I was only doing 1.2 for 4 minutes and they had to stop it half way thru because my heart raced too much! How fast I can go on the treadmill varies from day to day because of my heart beat. But I just absolutely love it!

Next week I have Aquafit twice a week, weight lifting twice a week and then Medically supervised exercise 5 days a week. I am also taking a course called Weight Management in the hopes of losing weight. It teaches a Whole Grain, Whole Fruit, Whole vegetable diet. No eggs, dairy, poultry, fish or beef or pork. Now I have consulted with my doctor and she said she worries about it being a high carb diet because I am a diabetic but I don't think I will have any trouble with it. Also the respitory therapist said when you eat a high carb diet you produce more CO2 and if you have problems with gas exchange that might be a problem but it will certainly create a need for more oxygen. I have no idea how my O2 exchange is. I know it was quite bad after my Vats surgery but have no idea about that now. Any way I am so excited! In a couple of weeks I will be on my way to National Jewish for tests and hope for good news and Classes begin! I am bursting with glee! Joyce Rudy birds. AZ

August 21, 2009

Joyce,

That is all such good news. I sent you a private post before you sent this, so I

have most of my questions answered. Good news all around! I love those upward

trends, and really if you think your lungs are better, then most likely you

know. I said in my private email that I was about to get on the treadmill, so

really I am now after reading your inspiring note. Take care and thank goodness

for these good news days for you.

Jerry/Mississippi/54/IPF/dx April 05

>

> Hi everyone! I am very excited! In two weeks I am driving back to National

Jewish for a 6 month check up and I am hoping that they will find my lungs are

getting better or at least not getting worse. I have tried and tried to fly but

it is a major pain in the ass so I am driving. I am getting a liquid well in my

car and a friend is going with me and so I will finally have oxygen 24/7! My

trip will take 4-5 days because we are going to take it slow. I have a question

about the liquid well that will be in the back seat. First, will it allow the

Marathon to be filled from it? And, second, can it be brought into the motel

room so I can hook up and sleep? Or, do I have to just keep going to the parking

lot and get a refill?

>

> I am also excited because Yavapai College classes start on Monday and that

means I get to swim again!!!! I have been going to the Pendleton Center for

medically supervised exercise for the last month and I love it! I simply love

it! I try to go every day. so far I have gotten up to 1.5 with speed on the

treadmill and I have walked 8 minutes and that is a far cry from when I started.

I was only doing 1.2 for 4 minutes and they had to stop it half way thru because

my heart raced too much! How fast I can go on the treadmill varies from day to

day because of my heart beat. But I just absolutely love it!

>

> Next week I have Aquafit twice a week, weight lifting twice a week and then

Medically supervised exercise 5 days a week. I am also taking a course called

Weight Management in the hopes of losing weight. It teaches a Whole Grain, Whole

Fruit, Whole vegetable diet. No eggs, dairy, poultry, fish or beef or pork. Now

I have consulted with my doctor and she said she worries about it being a high

carb diet because I am a diabetic but I don't think I will have any trouble with

it. Also the respitory therapist said when you eat a high carb diet you produce

more CO2 and if you have problems with gas exchange that might be a problem but

it will certainly create a need for more oxygen. I have no idea how my O2

exchange is. I know it was quite bad after my Vats surgery but have no idea

about that now. Any way I am so excited! In a couple of weeks I will be on my

way to National Jewish for tests and hope for good news and Classes begin! I am

bursting with glee! Joyce Rudy birds. AZ

>

August 21, 2009

Joyce Rudy

As to whether you can fill with it in your backseat, it depends on the

height of the seat vs. the ceiling. Most of the time you can or at worse

you can tilt it slightly to fill...very slightly.

Yes, it can be taken into the hotel and you can always get the hotel to

assist by doing so for you. I've traveled thousands of miles with one.

The only other thing is to be sure you know somewhere on your trip you

can refill if necessary. If your provider is national no problem. If

they are local you can still get it refilled, just will have to pay a

little. Make sure you always have a copy of your oxygen prescription

with you.

Happy traveling. You're doing it the way I like to.

>

> Hi everyone! I am very excited! In two weeks I am driving back to

National Jewish for a 6 month check up and I am hoping that they will

find my lungs are getting better or at least not getting worse. I have

tried and tried to fly but it is a major pain in the ass so I am

driving. I am getting a liquid well in my car and a friend is going with

me and so I will finally have oxygen 24/7! My trip will take 4-5 days

because we are going to take it slow. I have a question about the liquid

well that will be in the back seat. First, will it allow the Marathon to

be filled from it? And, second, can it be brought into the motel room so

I can hook up and sleep? Or, do I have to just keep going to the parking

lot and get a refill?

>

> I am also excited because Yavapai College classes start on Monday and

that means I get to swim again!!!! I have been going to the Pendleton

Center for medically supervised exercise for the last month and I love

it! I simply love it! I try to go every day. so far I have gotten up to

1.5 with speed on the treadmill and I have walked 8 minutes and that is

a far cry from when I started. I was only doing 1.2 for 4 minutes and

they had to stop it half way thru because my heart raced too much! How

fast I can go on the treadmill varies from day to day because of my

heart beat. But I just absolutely love it!

>

> Next week I have Aquafit twice a week, weight lifting twice a week and

then Medically supervised exercise 5 days a week. I am also taking a

course called Weight Management in the hopes of losing weight. It

teaches a Whole Grain, Whole Fruit, Whole vegetable diet. No eggs,

dairy, poultry, fish or beef or pork. Now I have consulted with my

doctor and she said she worries about it being a high carb diet because

I am a diabetic but I don't think I will have any trouble with it. Also

the respitory therapist said when you eat a high carb diet you produce

more CO2 and if you have problems with gas exchange that might be a

problem but it will certainly create a need for more oxygen. I have no

idea how my O2 exchange is. I know it was quite bad after my Vats

surgery but have no idea about that now. Any way I am so excited! In a

couple of weeks I will be on my way to National Jewish for tests and

hope for good news and Classes begin! I am bursting with glee! Joyce

Rudy birds. AZ

>

August 21, 2009

Joyce Rudy

And a reminder for you and others that the expenses of these trips for

medical care is largely tax deductible. You get a flat rate on mileage

plus up to $50 a day on lodging that you can deduct. It adds up.