nne-liquid O2

August 19, 2009

nne,

I'm sorry you're having such a hard time with the liquid O2. I'm just a bit confused about what you're asking.

The Helios has to be filled shortly before you are ready to use it. If you are planning on going out in the morning, you cannot fill it the night before and expect it to be full in the morning. It will probably be at least half empty. There is leakage and evaporation. Fill it an hour or so before you leave the house and you will be fine.

When you say the "tank in less than two weeks is empty and I only filled it once"... do you mean that the large resevoir is empty when you only filled the Helios once? If so call your O2 company because something is not right. The resevoir may have a leak. The Helios unit itself will only last a few hours before it needs to be filled again but I'm sure you know that.

I share some of your ambivilance about transplant but I would encourage you to go through the evaluation process anyway. The process, the people you will meet, the information you will gain will help you to make up your mind. They may tell you that you are still "too healthy" to be transplanted but that you will make a good candidate when the time comes. You will learn so much about how the rest of your body is doing. That alone makes it worth the time and trouble to do this....for me anyway.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, August 19, 2009 11:45:16 AMSubject: Re: NAC

Welcome Sue!I had my biopsy in July and the diagnosis was a mish-mosh of many different things, "could be this could be that", also. I have been referred to Columbia for an evaluation which Cigna will pay for and I found out yesterday that I got an appointment on Oct.1. I was diagnosed with ILD in June of this year and I don't know if a transplant would be the way to go. I went to see my pulmodude yesterday and he said I'm a great candidate since I have nothing else wrong with me (or so we think); I just need to loose weight. I'm on prednisone 15 mg now which does nothing. I have never heard of NAC - does it help? I use O2 at night 2 lpm and prescribed a portable Helios for exertion. I don't know- I've been feeling so depressed (even though I take Zoloft) since getting the paperwork from Columbia- starting the tests all over again and adding so many more tests- I'm thinking of not going. What is the point?? 5 more years?? More drugs with serious

side effects after transplant?? It's funny how I need to loose weight before transplant and then after transplant, drugs make you gain weight LOL. Also was given portable Helios last Thursday. Friday morning I go to fill it and it only lasted a half hour? The tank in less than 2 weeks is empty and I only filled it once??? Anyone with liquid O2 knowledge please advise!Anyway Sue- maybe we will bump into each other at Columbia. I'm happier in person and on O2 LOLnne, 55, ILD 6/09>> Good Morning everyone!> > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to

determine what type of PF I have. I was diagnosed in 1999...so that should give some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but is 73 years old and has "aged out" with regard to a lung transplant.> > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not

know much about this disease or how to treat it. I had been going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am

still alive because I was diagnosed earlier than most or because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a

source for tabs that costs less than $1.00/pill for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.> > I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I

worry about my children and grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.> > Again, thanks to all who share info...I'll keep reading!> > Sue> IPF/1999>

August 20, 2009

Hi Beth,

It is the resevoir that was filled and delivered on Aug 7 and I only used the

Helios once and I was given a larger canister that I filled once. Unfortunately

I'm at work and I don't remember the name of that canister. It's heavier than

the Helios, about 12 pounds and was delivered with the resevoir and I was taught

how to fill it. The Helios I got on Aug 12 and was told by the respiratory

therapist that it was full and should last 6 hours. On Thursday, the 13th,I only

had a half hour of O2 left so the next morning I filled it and the indicator on

the resevoir said it was less than half full. I called Apria Friday the 14th and

they said I should have called sooner for the refill (huh?). Anyway they are

coming tomorrow and I have to have my daughter stay home since I can't leave

work early and they only work until 5. I am having her ask the questions and

then if need be call me on my cell to speak to the guy, but do you think I

should call back and tell them there may be a leak in the resevoir and to bring

another one?

Oh and about the transplant evaluation, a nurse from Cigna called me after I

posted yesterday and said it will be 100% covered and that they are a center of

excellence. A lot of the tests they are going to do such as 6 minute walk I

haven't had so you're right- even if I am not a candidate at this time- I will

know more about what is going on and maybe they can narrow down the diagnosis a

little bit. I'm at least hoping for pulmonary rehab since I've read such great

things about it on this site. Thanks for writing back!

nne ILD 6/09

> >

> > Good Morning everyone!

> >

> > I am a newcomer to this group having joined only a few weeks ago and have

not posted before...just been lurking and trying to learn all I can about PF. I

had a lung biopsy in June to determine what type of PF I have. I was diagnosed

in 1999...so that should give some of you some hope. My lung capacity has been

declining by about 3% a year since that time. I went to National Jewish in 1999,

but they did not recommend a lung biopsy at that time. Things have changed in 10

years and now docs are recommending biopsies sooner than later. Anyway, I did

not recover from the lung biopsy in a few days, as some of you have reported. I

am back to work, but it took me the full 6 weeks to " catch my breath " . I thought

something was wrong until I read that others on the group had had the same

experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin

died from it and my aunt (my Mom's sister) has had it for over 10 years. She is

on oxygen 24/7 but

> is 73 years old and has " aged out " with regard to a lung transplant.

> >

> > I have had much the same ecperiences as some of you have reported with

Pulmonary docs who do not know much about this disease or how to treat it. I had

been going to the same guy since 1998, but following the lung biopsy I changed

to someone else because the first Pulmonary doc wanted to start me on steriods

and I wanted to explore my options. My biopsy report was a disappointment

because it read: " it could be this or it could be that " and the sample they took

was end-stage PF. I called the Coalition for PF and they gave me names of docs

in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she

could see me the quickest. Later, I find out that if I am to get a lung

transplant eval I would have to go to Columbia Presbyterian as my insurance

company will not pay for an eval at Mt. Sinai as it is not a Center of

Excellence. I gathered and mailed all my medical records to Dr. Padilla and am

waiting for her response. She did order

> BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I

really don't know if I am still alive because I was diagnosed earlier than most

or because the disease is progressing slowly. The wording about " end-stage " in

the path report kind of knocked my socks off and I felt that I needed to be seen

my someone who is more of an expert in this field than who I had been going to.

The basis for his steriod Tx was pulled from the International Concensus of

Opinion for Tx of PF written in 1999! While there has not been another consensus

written, there have been clinical trials and much more published about Tx

options since 1999. But it is my understanding that even the " experts " disagree.

> >

> > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of

quality control issues. She recommended the liquid, which I am reading on this

group in difficult to tolerate or that I obtain it from a Canadian Source who

gets it from Germany. My insurance will pay for the liquid but not the tabs from

Canada. Does anyone have a source for tabs that costs less than $1.00/pill for

900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per

month.

> >

> > I guess it's too late for a " long story short " (LOL), but I wanted to

introduce myself and thank everyone for posting such good info on the group.

Like others, Im still in the " panic stage " following the lung bisopy and the

prognosis. I watched my Mom die from this disease and that adds to my anixety. I

am 61 and had a lot planned for my next 10 years, but have certainly been handed

a reality check. I work in mental health so you would think I would have

solutions at my finger tips, but when it comes to your own life things look

different. My greatest fear is that I will " age out " before I am ill enough to

be considered for a lung transplant. I am most grateful for my life up to this

point, but can't help but to panic over the future. Additionally, since this

appears to be a famillal issue with me, I worry about my children and

grandchildren. My insurance company is giving me a hard time over the gentic

testing, but I haven't given up yet.

> >

> > Again, thanks to all who share info...I'll keep reading!

> >

> > Sue

> > IPF/1999

> >

>

August 20, 2009

nne

how about lunch on Sat or Sun Aug 29th or Aug 30th?

If you hear of any good places near quaker bridge mall, let me know

otherwise we can meet at the place next to Macy's

this invitation is open to all

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: nne-liquid O2To: Breathe-Support Date: Thursday, August 20, 2009, 9:21 AM

Hi Beth,It is the resevoir that was filled and delivered on Aug 7 and I only used the Helios once and I was given a larger canister that I filled once. Unfortunately I'm at work and I don't remember the name of that canister. It's heavier than the Helios, about 12 pounds and was delivered with the resevoir and I was taught how to fill it. The Helios I got on Aug 12 and was told by the respiratory therapist that it was full and should last 6 hours. On Thursday, the 13th,I only had a half hour of O2 left so the next morning I filled it and the indicator on the resevoir said it was less than half full. I called Apria Friday the 14th and they said I should have called sooner for the refill (huh?). Anyway they are coming tomorrow and I have to have my daughter stay home since I can't leave work early and they only work until 5. I am having her ask the questions and then if need be call me on my cell to speak to the guy, but do you think I should

call back and tell them there may be a leak in the resevoir and to bring another one?Oh and about the transplant evaluation, a nurse from Cigna called me after I posted yesterday and said it will be 100% covered and that they are a center of excellence. A lot of the tests they are going to do such as 6 minute walk I haven't had so you're right- even if I am not a candidate at this time- I will know more about what is going on and maybe they can narrow down the diagnosis a little bit. I'm at least hoping for pulmonary rehab since I've read such great things about it on this site. Thanks for writing back! nne ILD 6/09> >> > Good Morning everyone!> > > > I am a newcomer to this group having joined only a few weeks ago and have not posted before...just been lurking and trying to learn all I can about PF. I had a lung biopsy in June to determine what type of PF I have. I was diagnosed in 1999...so that should give

some of you some hope. My lung capacity has been declining by about 3% a year since that time. I went to National Jewish in 1999, but they did not recommend a lung biopsy at that time. Things have changed in 10 years and now docs are recommending biopsies sooner than later. Anyway, I did not recover from the lung biopsy in a few days, as some of you have reported. I am back to work, but it took me the full 6 weeks to "catch my breath". I thought something was wrong until I read that others on the group had had the same experience. My PF is believed to be genetic in origin as my Mom and 1st. cousin died from it and my aunt (my Mom's sister) has had it for over 10 years. She is on oxygen 24/7 but> is 73 years old and has "aged out" with regard to a lung transplant.> > > > I have had much the same ecperiences as some of you have reported with Pulmonary docs who do not know much about this disease or how to treat it. I had been

going to the same guy since 1998, but following the lung biopsy I changed to someone else because the first Pulmonary doc wanted to start me on steriods and I wanted to explore my options. My biopsy report was a disappointment because it read: "it could be this or it could be that" and the sample they took was end-stage PF. I called the Coalition for PF and they gave me names of docs in NYC and Mass. I made an appt with Dr. Padilla at Mt. Sinai because she could see me the quickest. Later, I find out that if I am to get a lung transplant eval I would have to go to Columbia Presbyterian as my insurance company will not pay for an eval at Mt. Sinai as it is not a Center of Excellence. I gathered and mailed all my medical records to Dr. Padilla and am waiting for her response. She did order> BW...my PFT, CXR, and HRCT were up to date, but she wanted a history. I really don't know if I am still alive because I was diagnosed earlier than most or

because the disease is progressing slowly. The wording about "end-stage" in the path report kind of knocked my socks off and I felt that I needed to be seen my someone who is more of an expert in this field than who I had been going to. The basis for his steriod Tx was pulled from the International Concensus of Opinion for Tx of PF written in 1999! While there has not been another consensus written, there have been clinical trials and much more published about Tx options since 1999. But it is my understanding that even the "experts" disagree. > > > > Dr. Padilla recommended NAC, but she told me not to get it at GNC because of quality control issues. She recommended the liquid, which I am reading on this group in difficult to tolerate or that I obtain it from a Canadian Source who gets it from Germany. My insurance will pay for the liquid but not the tabs from Canada. Does anyone have a source for tabs that costs less than $1.00/pill

for 900 mg? She wants me to take 3600 mg per day which would cost me $120.00 per month.> > > > I guess it's too late for a "long story short" (LOL), but I wanted to introduce myself and thank everyone for posting such good info on the group. Like others, Im still in the "panic stage" following the lung bisopy and the prognosis. I watched my Mom die from this disease and that adds to my anixety. I am 61 and had a lot planned for my next 10 years, but have certainly been handed a reality check. I work in mental health so you would think I would have solutions at my finger tips, but when it comes to your own life things look different. My greatest fear is that I will "age out" before I am ill enough to be considered for a lung transplant. I am most grateful for my life up to this point, but can't help but to panic over the future. Additionally, since this appears to be a famillal issue with me, I worry about my children and

grandchildren. My insurance company is giving me a hard time over the gentic testing, but I haven't given up yet.> > > > Again, thanks to all who share info...I'll keep reading!> > > > Sue> > IPF/1999> >>__________________________________________________

August 20, 2009

Hi Joyce,

Saturday Aug 29th would be great and the place next to Macy's is fine. 1:00pm?

> > >

> > > Good Morning everyone!

> > >

> > > I am a newcomer to this group having joined only a few weeks ago and have