[Terry Moriarty]

Hi Carol,

What brand of portable oxygen concentrator are you using? I didn’t know there were any that went to 5 liters/minute continuous. I use an Inogen One G2 and it only goes to pulse rate 6, which is equivalent to about 3.5 lpm. I now need 6 lpm on activity, so my portable is insufficient for my needs.

So I’d like to know about your portable.

Kim Fredrickson uses liquid oxygen. I have to use tanks now when I go out. My provider doesn’t provide liquid oxygen.

Good luck and keep us posted with your progress with rehab.

[Terry Moriarty]

A clarification about the 6 minute walk.

It’s primary purpose in the US is to determine how much oxygen a person needs. The test is done by starting with no oxygen. If the O2 level drops to 88%, the test is paused for the person to recover and get back to normal O2 level. Then the person is put on oxygen (usually 2 lpm) and the walk is repeated. If the O2 level drops to 88 again, the process is repeated, gradually increasing the lpm, until O2 stays above 88. That’s the lpm that becomes your prescription. I’ve only had one place record the distance I went.

So it’s a good thing to track your distance during the 6mw, but it is essential for Dr. Andy’s study to track the change in oxygen level from one test to another. And to follow the procedure of stopping to rest, restore and increase your oxygen lpm, so he knows your highest and lowest O2 level during the walk. I think this is what the researchers Dr. Andy is hoping to attract will be expecting to see.

[Terry Moriarty]

I planned to assign a unique id to each person. Just a remnant of my database design career. It’s just what we automatically do <g>. Hard to break old habits.

[Terry Moriarty]

Hi all,

I’ve reached the point where I can’t read any of the organizational comments because I use a Surface tablet and the indentation the PF News website uses for replies eventually hides them from me.

I volunteered to collect all the responses and put them into a spreadsheet, primarily so we can analyze for trends across the group. There will be multiple sources of responses: PF News (here), the FB group and people communicating directly with Dr. Hall.

I think there may be a privacy concern to be considered. Not everyone may be comfortable posting their results publically. Charlene, is there any way to make the results discussion private? Even though the FB group is private, we know that FB itself doesn’t really respect its members privacy. For these reasons, I think individuals should report their results through a private channel, possibly by email to Dr. Hall’s website. Then, I can collect the data and, periodically, provide a report of trends by different criteria Dr. Andy selects. If I’m the only one concerned about privacy, I’m happy to collect the data through whatever transmission means you select.

Thanks, Terry

[Terry Moriarty]

In case you didn’t see, the laser therapy discussion on Inspire has been shut down. I hope that those interest k ow to come here or to the FB group. Charlene, Thanks so much for your unbias monitoring of this discussion.

[Terry Moriarty]

Steve,

This is so frustrating. I found you on FB, but can’t friend you. Can friens the other Steve Dragoo, but not you. I’m an FB newbee.

Here’s the link I think will work For the FB group.

https://www.facebook.com/groups/259133335009145/?ref=gs&fref=gs&dti=259133335009145&hc_location=group

[Terry Moriarty]

Steve, I found a bunch of Steve Dragoo on FB. You’ll need to narrow it down for me.

When I select Groups and put in Laser Therapy for search criteria, the group shows up.

[Terry Moriarty]

Thanks, Charlene, for keeping this discussion going and keeping it civil and supportive.

I want to let the group know that a Facebook group has been started “Laser Therapy for Lungs”. The intention is not to take away from PF News discussion here, but to be a bit more private. Plus, bring in others who are on FB, but not here.

If you want to join, search on the title given above. When you get to the group’s page, select ‘join’. You will have to answer a few question to be approved as a member. That’s the advantage of being a private group. People from both this discussion and one on Inspire who really want to understand the possibility of laser therapy have joined this group. But, there has been cross posting here, so you will still know what’s going on without joining the FB group. I know I will continue to watch both discussions.

Thanks, Charlene, for letting me post this.

Terry

[Terry Moriarty]

Is it possible to move the discussion of this discussion forum’s issues (there are so many) to another topic thread and get back to the original topic? Thanks

[Terry Moriarty]

I never bothered putting the signs on my house. When in an apartment, I thought it may make the other residents uncomfortable. Now that I’m in a house, I don’t think it really matters. Maybe I should rethink that.

But, I’d never thought about a sign on the car. I think that’s really important now that I’m carrying around tanks.  If the valve is damaged in an accident, the tank could explode like a rocket, according to Kim Frederickson (think that’s her name), a moderator for another column. Think I’ll look into putting some sort of a sign in my back window.

[Terry Moriarty]

I’m definitely into the yarn-based fiber arts: spinning, weaving, needlepoint, crochet and knitting. During my working years, I built up my stash, literally “stashing” it in my garage, to fill my retirement years with los of projects. I’m not moving on until all those projects are finished!

Right now, I’ve returned to my first love, needlepoint. Working on Christmas stockings for my two youngest grandkids.

[Terry Moriarty]

The 6mw is really important, at least in the US, because it’s the primary factor used by insurance companies in determining whether you qualify for oxygen and what type of equipment.

My experiences are comparable to PDK. I was diagnoses in 2007 in Australia, where I was working at the time. I really don’t remember that one. Being so far from home with a medical emergency can really mess with your thinking process. But they did have me walk up stairs. But I didn’t need oxygen then. Maybe if I did, I would have asked more questions.

The first one I clearly remeber was in 2011 in Virginia where I had an exacerbation. Though done in a hospital, it was a stroll through the corridors without oxygen. As soon as oxygen level dropped below 88, they said I needed oxygen.  Since then, I’ve had 6 more across the country, in Virginia, UCLA, UC Davis and at the hospital where I now live near Sacramento. All were the “stroll in the park” approach (one literally in a neighboring park to the doctor’s office), except UC Davis.

They had a corridor marked for the distance. Recorded when I dropped below 88. Started with no oxygen ( got about 10 feet), then rested and started over at 2lpm. Got a little farther. Then rested, started again at 4lpm. Repeated at 6lpm where I fell below 88. So I needed 4lpm.

For the most recent one, they started at 6lpm. I must have dropped below 88, because I heard the respitory therapist say she didn’t know what to do if I needed more than 6lpm. I guess she decided that it wasn’t really important, since at 6lpm, I qualified for a high flow concentrator. She didn’t try the walk again at 8lpm, but I found out, when I got home that’s what I really need. So the training of the person conducting the test is also factor in the results, I guess.

[Terry Moriarty]

9 pulse is about 5.5 lpm. That’s good. But isn’t pulling around 18 lbs. hard? How many hours do you get on a battery charge? Thanks

[Terry Moriarty]

Thanks, Peter,

That is a good rehab video.

[Terry Moriarty]

Hi John,

Oxygen levels are measured by an oximeter. You can easily get one from Amazon.  FEV1, FVC, TLC and DLCO are stats on a PFT. Your pulmonologist should go over these stats when reviewing your PFT. You should be able to get a copy of your PFT results from the lab that did the test. Only one place tried to charge for it. My Dr. handed me his copy when I let him know.

[Terry Moriarty]

I totally agree, Jack. There is no standard for the 6 minute walk. Like you, I’ve done many (8) over 12 years. Two tests were at different COEs. All but one just walked me around for 6 minutes or until my oxygen level dropped to 88. Then they restarted the test using more lpms. In only one case did they make a point of recording the distance.

Which was my point. If people are going to do a 6mw as one of their benchmarks for progress in Dr. Andy’s study, it is essential that the maximum oxygen level be recorded and it be determined in a systematic way. Pushing themselves to walk farther on insufficient oxygen to show progress probably would not be a good thing.

[Terry Moriarty]

I agree we should move to email to plan the process. One person send out the initial email and we all do reply all to that. Could you be the central point for these emails, Charlene?

I don’t think the base spreadsheet with individual results be shares. Only the analysis Dr. Andy needs from it, such as average, mean and medium changes in collected data points, such as PFT (FVC, FEV1, TLC, DLCO), CT scans (changes in grown glass opacity, honeycombing), 6mw(oxygen lpm, distance), general feelings regarding improvements or lack thereof.  These are the indications of progression for HP.  Are there others for IPF?

I think anyone providing information about their treatment should register for Dr. Andy’s study. Signing up would be providing an agreement to collect this information. Is that correct, Dr. Andy?

[Terry Moriarty]

Someone gave a status report. budhenry jumped on that person, as expected. Someone else responded a bit harshly to budhenry and it was over. I don’t know who reported the thread to the Inspire administrator, but it’s unfortunate that they didn’t “reprimand” individual offenders, rather than punishing all of us.

Hopefully, those interested in this discussion have moved to your conversation here and/or to the FB group.

[Terry Moriarty]

Hello, Jan,

I find your wife’s story very interesting. I also have HP, diagnosed in 2007. I was one of the lucky ones, getting diagnosed within 3 months.  I was working in Australia at the time. But it took 3 general practicioners there and my own primary care doctor in the US (a pulmonologist), all stating bronchitis, before I was seen by one that said ‘no, it’s something else’. He got me to an Australian pulmonologist who ordered a VATS that showed HP due to an unknown organic organism.

Over the years, my biopsy slides have been reviewed by 3 pathologists who agreed on the diagnosis.

For the first 4 years, I was fine. Then, I had an exacerbation that really kicked off the fibrosis. Went on oxygen.  Still was active, but slowed down. Now retired.

I can’t imagine dealing with this condition with 2 young children. It was hard enough raising two kids when I was healthy. Total kudos to your wife and to you for your continuous support.

I am interested in knowing what medicines your wife is taking. There are few options here in the US, nothing government approved. My impression is that Europe is ahead of us in approving treatments for most diseases.

Thanks for connecting with us.

[Terry Moriarty]

Diane,

I too suffer from a esophageal dysmotility (nutcracker esophagus). When I investigated lung transplants in 2012, I was told it may disqualify me because it can’t be cured and may damage the new lungs. I have additional disqualifying conditions.

I’m delaying my decision on the laser treatments for a couple of months. I’m also obese and have been on a medically supervised diet. So, far I’ve lost 40 lbs. My pulmo says that weight loss can result in lung stat improvements. I think I should test out one change before introducing another one, so I know which is actually working.  Have PFTs scheduled for May. If no improvements, I’ll probably try the laser treatments.

[Terry Moriarty]

Actually, Karl, you are not entirely in control if you want your oxygen equipment covered by Medicare. They require a 6mw report. Prior to Medicare, my private insurance also required the 6mw because they adopted Medicare rules. Yes, you can refuse, but at a possible cost. My pulmonologist would require the test periodically (every couple of years). When I asked why, he said insurance company required it.

As I said, most were lax in how they administered the test. And as soon as they got a qualifying score, I think they stopped. But when it was obvious that I needed to go to the next level in equipment, they did the minimum required to get that equipment IMO. The doctor didn’t administer the test. Just accepted the results he got.

But saying I wouldn’t take/complete the test to their satisfaction really wasn’t in my best interest.

[Terry Moriarty]

Thom,

I read a post about the 3-5 year life expectancy statistic that made a lot of sense to me. The poster, who seems to do a lot of research based on the information in his other posts, said that that statistic is really old, developed before the drug and treatment therapies used now existed.  He said it is also an average and doesn’t take into account age.

I have HP, not IPF, but the same statistic is quoted for chronic HP. So it must apply to PF in general.

I was told in 2011 that if I didn’t have a lung transplant in 18-24 months, I’d progress rapidly to the end. That was 7 years ago and I’m still here with only some minor progression compared to others. So, I pretty much ignore the general statistics and pay attention to how I’m doing, because, obviously, those statistics don’t apply to me. I’m in my own uncharted territory.

[Terry Moriarty]

Lynn, I was diagnosed in 2007 and went on oxygen in 2012. Yes, I have scarring and was told I should have a transplant within 12-18 months at that time. Didn’t qualify because I’m quite obese. Guess that doctor was wrong cause I’m still here. PFT stats have always been low (45% range for FVC, 25% range for DLCO), but stable.  But in Aug, 2018 they dropped to 35% and 19%. Scared the heck out of me. I had already been dieting and lost about 80 of the 100+ lbs. I gain when on prednisone. In Oct, I started a medically supervised diet and have lost another 40 lbs. Have another 120 lbs. to go.

I’ve already seen my oxygen needs go down. I’m hoping that the laser treatment and continued weight loss will lower my oxygen needs more. I don’t expect to get off oxygen. I’d just rather be around 3lpm than 6lpm.

Start the laser treatments in about 2 weeks. Will let you know how that goes.

[Terry Moriarty]

Russ, how long does your generator last?