I’ve done both. From what you’ve described, in-home PT would probably be the better starting point. Getting into the rehab facility was difficult for me too and I used  a walker. I had to stop going because of low blood pressure.  Now, I have to use a power wheelchair when out of the house,  as it carries my oxygen tank. I can lower the oxygen… Read more

Hi Linda,

It hard having a condition that doesn’t have the ability to chart its progression path.  I don’t think that any two people’s journey is the same. I’m 73 this week.

I’ve been on oxygen for 10 years and high flow oxygen for the last 9 months. I’m on 12 lpm resting and 15 lpm moving around. I do not have IPF, but do have PF… Read more

I gained over 100 lbs when on prednisone. I was already obese. I’ve lost 125 lbs on a medically monitored very low calorie diet (VLCD). My BMI is now under 30. I could probably qualify for a transplant, if I wanted one.  VLCD is a tough commitment, but effective, if you can stick with it.

I’ve had all the heart tests. Last month wore a heart monitor. All is fine except for aFib which I’ve had for years.  I’m setting up my appointments for my 6 month checkups now which include a CT scan and PFT.

I don’t live in the beautiful parts of Northern California.  I’m near Sacramento in the agricultural central valley between the beach… Read more

Rene, so good to hear from another low DLCO person. I have Hypersensitivity Pneumonitis which is triggered by some allergent. If you can get away from the trigger, then it can go away permanently. So long as there is no fibrosis. From 2007 to 2011, that’s what happened to me. Then something triggered it again and I progressed to PF.

I’ve been… Read more

I’ve found this discussion very interesting. I was diagnosed with an ILD (not IPF) in 2007. In 2011, I progressed to PF. My PFT results have always been very low, especially DLCO. My average until 2018 was around 35%. Then it dropped to 19%.  At my last PFT (9/20), I made it 21% (woo! woo!).

DLCO is one test that I haven’t gotten any of… Read more

Now that my city has opened up, I thought I’d check my POC vendor’s COVID-19 guidance. I use an Inogen One G2. Their FAQs page says it does NOT filter out the virus droplets, but didn’t say not to use it. Gives instructions about sanitizing it, but no usage precautions. So I called and the CSR checked their FAQs and agreed that their… Read more

I had one funny experience when there around words. Probably have to be from US to really experience. I was at my favorite pub for fish and chips. Something I did atleast weekly. This time, there was a group of 6 guys celebrating at a nearby table. One of them called out to me “Hey, unk., Hey, unk”. I ignored him. “Hey, unk” I heard… Read more

I lived in Australia for 18 months. I really miss it. I didn’t realize that, like the US, there are different accents across the various regions of Australia. Some, I really couldn’t understand. It was really funny at times as I tried to figure out what someone was telling me because we couldn’t understand each other’s accents. Had the… Read more

Last year, the people went after the California poppies that grow wild on the side of some of the freeways. They actually shut down some of the freeways trying to take pictures. I’ve lived in California all my life and don’t remeber anything like that before. We humans have such a herd mentality.

I have a small clump of daffodils that come… Read more

I was too late. They closed Yosemite completely this morning. Most of our other national parks have closed all the facilities but left the roads and trails open. But completely shutdown Yosemite. Oh well. I can also drive to the beach. Being Northern California, there are a lot of more secluded beaches where there won’t be a lot, if any… Read more

I live in a fairly small North-eastern California county of 385,000. About half of that population resides in the city where I live. The first person to die in the US of COVID-19 was in a hospital here. So the virus is really, real here. However, the county has only 26 cases (up from 19 last week) and the 1 death.

With these numbers, I… Read more

This just really became real for me. The first California death was at a hospital in my city. I cancelled my mani/pedi tomorrow, but have my annual CT scan scheduled for Monday (at a different hospital). My RN daughter-in-law says to cancel it. Have a message into my pulmonary doctor for advice. It’s so hard to get appointments here. Finally,… Read more

I’ve been monitoring very closely since I live 60 miles from Travis Airforce Base and UC Davis Medical Center, where they transferred the first community-transmitted patient, is only 20 miles away. But no cases reported here.

I’m more concerned about my son who lives near the outbreaks in Washington. I’m retired and can stay in if I need to,… Read more

I take that nasal spray for a runny nose caused by my lung condition. I have Hypersensitivity Pneumonitis, not IPF. But once I progressed to fibrosis, there’s not much difference in dealing with the symptoms or side effects. At this point, drug treatment for HP is different from IPF. I’ve gone through all the symptoms and side effects of ILDs… Read more

Forget PC. I think we should print up Tshirts with these slogans. With an added sentence of Donate to the Pulmonary Fibrosis Foundation.

Is it possible to post the transcripts of the podcasts? I don’t absorb the details from listening to an article being read. I need to read and possibly reread it several times for the information to “sink in”.  Thanks.

Everyone should watch the movie “That Sugar Movie” on Amazon. Watching that will reinforce the desire to eliminate processed sugar.

I’ll share my story. I was diagnosed with Hypersensitivity Pneumonitis in 2007 and went chronic (fibrosis) in 2011 and went on oxygen. Since I lived in California and worked in Washington DC, I got a POC for… Read more

There is a small,soft plastic, I guess, ring that goes on the thumb. I’ve read that the thumb is the best place to measure oxygen levels and may explain why there are occasionally difference from finger oxymeters. It has a flexible cord that connects to the fitbit-like device on your wrist. I wear it on my left hand. Don’t notice at all. The… Read more

I’ve been wearing the O2 Vibe O2 meter for about 4 months. It does O2 levels, heart rate and steps. Since this is on your wrist, it’s counting hand movements. Pretty much like all fitbits. Haven’t tried carrying in my pocket to see if it gets more accurate.

O2 level accuracy is pretty good. Have compared it with finger meter and they are… Read more

Hi Marsha,

I got my Inogen 1 G 2 in 2012.  It was my life saver. I worked bi-coastal and racked up alot of air miles with that POC. Unfortunately, I didn’t understand that lpms and pulse rates weren’t the same thing. My lpm needs increased and I was still using the POC. That contributed to the exacerbation I suffered in early 2018. At that… Read more

My DLCO has been in the 25 – 35% since I went on oxygen in 2012. In early 2018, it dropped to 19%. I’ve lost 40 lbs. since then, in addition to the 100 lbs already lost since  going off prednisone in 2014. FVC and TLC improved, but DLCO remained low. I know what DLCO measures (oxygen carbon dioxide diffusion), but I haven’t been able to find… Read more

DLCO = carbon monoxide diffusing capacity. It is a measure of oxygen/ carbon monoxide exchange through the lung walls. My score of 19% is considered to be extremely low.

LPMs = liters per minutes for oxygen. I’ve been on oxygen for 7 years. My prescription is now 6 lpms, however, at my last 6 minute walk I used my portable oxygen concentrator… Read more

Has anyone using laser therapy seen improvement in their PFT DLCO percentage?

I’ve been waiting on making the decision on laser therapy because I started a medically supervised weightloss program in October. I wanted to see if there were improvements from that before starting something else. I’ve lost 50 lbs. so far and have seen lots… Read more

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

Thanks, Peter,

That is a good rehab video.

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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.

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… Read more

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… Read more

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.

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

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.

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… Read more

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

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… Read more

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… Read more

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,… Read more

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… Read more

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… Read more

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… Read more

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… Read more