My first post

[Guest guest]

Hello everyone. I signed on a week or so ago, have read most of the files and

all of the messages since then.

My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip

replacements, one in August of 2006 and the other in January of 2007. Other than

that I have only had gall bladder surgery and a radical mastoidectomy.

In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had

never heard of this before my dx.

I really thought I had COPD, but the pulmonary doc said no. It's when he told me

that he has a patient who had had it for five years and is doing well, that I

began to see the seriousness of it all. He also said there is no cure, but

suggested that I try NAC as his long-term patient uses it and says it works well

for her. Needless to say I got it and am on my first refill.

I saw this pulmonary doc on November 7 and again on December 28. At my first

visit he took me for a walk with an oxometer and I dropped to 75. In December I

dropped to 82. I'm sorry but I don't know all of the medical terms as of yet,

but sure I will learn. At my first visit he told me I need oxygen when walking.

When the Oxygen Company visited my home, they brought the whole store with them.

I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The

doctor also told me that I could get a small container that would fit on my

belt. The company told me there was nothing like that. On my second doctor

visit, I asked him about it and he said that he would find a company that would

supply me with one. That company turned out to be the very same company that I

first dealt with.

This past Monday, a therapist from this company came to my home to test me for

an oxygen system that would only provide oxygen as needed. She took me for

several walks around my house and up and down the stairs, and I failed on every

level. It was only as she was about to leave the house that she noticed that the

doctor had written a script for liquid oxygen. I don't want, nor will I use it.

My husband and I travel often and the liquid would not work, yet the other

so-called portable tanks only supply 45 minutes of oxygen. The therapist also

told me that the doctor wrote the script for level 2 oxygen at rest, and level 3

with strenuous activity. He mentioned nothing about this to me.

My oxygen is at 96% at rest and the therapist said that although it dropped when

walking and climbing stairs, I have an immediate recovery when I sit.

Needless to say I have not been myself since November. The more I find out about

this disease, the more depressed I become. I have to talk myself out of bed

every morning and force myself to do simple chores around the house.

I am glad I found this group as you all seem so positive, and I need that. I

know I have rambled and perhaps don't make sense, but I just needed to finally

introduce myself and hope some of you can help me through your experiences.

Thanks

[Guest guest]

Ann,

Welcome to Breathe Support. I'm sorry that you need us but since you did I'm glad you found us.

What Peggy is referring to is the setting on her concentrator. She has it set at 6-8 liters when she is sitting and 12-15 liters when she is up and around. Liters per minute is how the output of an O2 concentrator or a liquid O2 resevoir or and O2 cylandar is measured. When you refer to your doctors order for oxygen at "level 2" that that means is the oxygen is set at 2 liters per minute. (Peggy did spell liters as "leaders" but liters is what she meant)

Keep asking questions we've all been where you are. The most important thing for you to know is to keep your O2 saturations over 90. You use the amount of oxygen that you need to keep your sat at 90 or above. How much oxygen you will need depends very much on your own particular situation.

You mentioned traveling and I want you to know that it is very possible to continue traveling while you are on oxygen. It does demand additional planning and careful thought but it is very doable. I routinely put my concentrator and tanks in the car and travel by car. Many on the board have flown using a portable oxygen concentrator. One couple in my support group here in NC went on a two week cruise in the Caribbean recently. The husband was able to borrow a portable concentrator from his oxygen supplier and used that for the entire cruise.

The choice between the different types of oxygen delivery is a personal one. Many people use liquid all the time and find traveling with it very convenient. I use a concentrator and E tanks. An E tank is an oxygen tank that is about 3 feet tall and weighs about 12 pounds. It fits in a rolling cart that I pull when I go out. At 2-3 liters continuous per minute it would last about 4 hours. With a conserving device that would give you a bolus of oxygen every time you inhale it would last for about 6 to 7 hours. Others who use liquid will be able to give you more information on how long the various portables last.

Ann this all takes some getting used to. Life is different now, there's no getting around that. Life is different but it can still be good. I'm still here, I can enjoy my friends and family and do the things that I want to do.

Keep reading and keep asking questions. We're here to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, January 14, 2010 7:58:26 PMSubject: Re: My first post

I don't understand what 6-8 leaders is or what a concentrator and E tank is. Would you please explain? My doctor hasn't ordered an overnight saturation yet, nor has he mentioned it. I ordered an oximeter yesterday through Amazon that should arrive within a few days. When I last saw my Primary doctor in Dec., he said that my lungs are clear. The same was said by the pulmonary doctor when I saw him a week or so later. Is that good news? How long will a portable (carry type) tank last if I should want to use it while on vacation? Thank you for the welcome.

----- "Peggy " <pac1773@centurylink .net> wrote: > > > > Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease.

I also have IPF. I am 67 years old.

I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feel

so much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathe

very shallow while sleeping. You should probably ask about it.

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Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group.

God Bless.>

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Love & Prayers

Peggy, IPF 2004

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