Afraid I will be the fly in the ointment. Back in early 2020 I was going to go to California for my dad’s funeral and just wasn’t feeling right. Hot, trouble breathing, caughing, runny nose, so my wife took me to the er since it was a weekend. They stuck me in the hospital right away. After the 3rd hospital, was told by a surgeon she knew what…

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Hello and good afternoon everyone,

Reading the article on breathing devices came real close to home for me In 2020, I was diaganoised with IPF. After using tanks for about 4-5 months, I saw the ad for the Inogen 6. I thought alright since I only was using 4 or 5 at the time and figured it would be along time before needing anything more. As…

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Good afternoon,

I got the pendent style the other day and have been expermenting with it. I tried it on my home oxygen compactor and the bottle. The home I have at 10, which is the limit.i was able get it down to 6 and then 7 and finally8 before noticing a change. The 6-7 wasn’t putting out enough even with the oxymizer .At 8 it felt…

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Hello Charlene, I thought had put in a request the other day about laser treatment, but it must not have gotten thru. I am really curious on how it works, what does it accomplish and how is it done. I see all the posting about it but I have never seen or heard anything about it before now. If you could give me some answers, I would appreciate…

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Hello and hope you had a great Easter. After reading all these articles on laser treatment. My question is, how does laser treatment work with IPF? Where is it applied? What kind of results can you expect? The reason I am wondering is that my time is running out. The hourglass is getting down. At my last appointment, it was discovered I only…

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Morning. Been reading all the postings here this morning and I just have to add. Most of you are so lucky to have the stats that you do. I was diagnoised in 2020 with IPF. At the time, one lung was already shot, so it was taken out, that left me one to operate my whole body. As time has progressed, the disease has gotten worse. For awhile I…

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Hello Lynn, Just read your introduction to your new life. Yes, it is challenging. I was diaganoised in 2020. It was thought it was Covid, so that is how they treated it. That was completely wrong. At the 3rd hospital, there was an surgeon who took one look at me and said she knew what my problem was and she would see me the next day in… Read more

Goodmorning everyone and Happy Easter. Been setting here reading all the postings about the DLCO scores and thought I might add my 2 cents. The last test I had was 06/21/2022. I was suppose to have had one again in Dec. of 2022, but had some heart problems so didn’t have one. However my results from the 06/2021 where not very good.  My DLCO… Read more

Good evening everyone. Read everyone’s input here on the Inogen5. When I got out of the  hospital in 2020 after 4 months in there, I  was on the cylinders. As everyone knows, they are a pain to get around with and only last about 2 hours. So, I bought an Inogen5 because I was told it went to 6. My lung doc said it doesn’t really. Since it is… Read more

Good afternoon everyone. Reading all these comments, you have pretty well covered everything I was going to say. The Inogen 5 is fine if you only need about 3 or 4 because the #6 is not really a #6. It is still only going to put out about 4. Wish there was a continues that was protable. I have had to go back on the  cylinder because of… Read more

Good afternoon everyone. This is an interesting subject that Robert has brought up. In  2000, when I was  given the great news after 5 months in the hospital. I left there on about 4l and using cylinders. They were so hard to get around with, I bought an Inogen 5 that is suppose to go to 6. Well, my lung doc says it is actually 4. I have been… Read more

Grady, Thank-you so much for your information on your dad and the final moments. I started to cry because I just picture him doing as you say he did. It is me all over. I have been trying to not see the end, but there comes a time when it is going to happen. We can all pray and say it won’t happen, but it will. I just hope I am like your dad… Read more

Good  afternoon Grady,

My name is Randy and read your story with great interest as I am on my 3rd year of IPF. I have been on oxygen all this time, 24/7. I left the hospital after a biopsy to make a determination on what I had. I had lost 1 lung already and the other isn’t in great shape.The liters have slowly increased over the past year.… Read more

Hello again Jeff. The Inogen I have now is a replacement for my original. That one went nuts and quit working even after I put new columns in. The bells an whistlers work just fine. No figures and the little lights work everytime I breath. I tried the Inogen as I drive or ride and then the tank when I get out of my truck but th Inogen just… Read more

Natalie. Read your posting about using a machine will driving and then the cylinder when getting out of the car. I am working on that now. I went to the bank today and used the Inogen till I got there. Then switched to a cylinder. The Inogen just doesn’t work anymore, even just setting or driving. I only had to drive a bout 5 miles but I… Read more

Hello again everyone. Just thought I would put another 2 cents worth back in. The Inogen and I have split company. Yes, the pulse system is pretty worthless when you are on high output. I found this really the hard way last week. I was shopping at Walmart, with the Inogen, and suddenly got spots in front of my eyes. I didn’t have my sunglasses… Read more

Hi Gloria. I live in western Colorado near the Utah line. We don’t get much snow because we are considered desert, but boy does it get cold. This morning was 19 degrees and right now it is 29. I was out for a couple minutes this morning to feed the animals and that’s that.

Take care and keep your lungs covered to protect yourself.

Forgot to add. If out more then 2 minutes, your air line freezes and you have a heck of a problem getting back into the house. It doesn’t want to bend.

Michelle, it’s very important. You lungs are very fragile now and can easy give way to a bad  cold which can turn into pneumonia. My doc said so cover my noses and mouth when going out in the cold. So I have a cloth mask I use to get to the car or just out to feed my pets that are outside. I only have 1 lung, so it very important for me not to get a cold.

Good afternoon everyone. This has been an interesting to read what people have observed at the end of a love one. We have all thought about and wondered our selves as to how it will be. I have always been told that I would sufficate. Then I was told by my doc that in hospice, I would be made comfortable, like many have explained. I have now… Read more

Hello everyone. Hope you all had a good Thanksgiving. The cold and being out in it. I really try not to be. It really messes up your lung when the cold hits it. If I have to go out, I have a cloth mask I’ll put on to get thru the cold air. But I have to be quick. With only 1 lung, I have to be real careful. It I should get a cold, it would… Read more

Hello Charlene and other post members. I had listed my inhalers on another post you had the other day, but will do the same here. After being diagnoised with IPF in 2020, I was put on Flovent HFA. It worked for about 2 years and then it started to not be so good. So, my lung doc added another inhaler, Ipratropium. It has been doing pretty good.… Read more

Hi Charles. Read your entre and thought you sound a lot like me. I live at 4500 ft, on the Colorado, Utah line. It is considered high desert but just to the east of us start the mountains. They gradually go up until your at Silverthorn at 12,000. I was diagnosed in March of 2020 when I couldn’t get my breath, sweating like crazy. It took… Read more

Hello everyone. Hobbies. I used to h ave a hobby that I started when I was 8 years old. I made model cars. At one time  I had over 100 but in my travels, I have given some of them to people I met and liked. I still have over 25 of the best ones including my first. I made my last one about 3 years ago. Then when IPF  was diagnoised, I wasn’t sure… Read more

Natalie,

Your problem is one that most of us have that have this thing called IPF. After diagnoised and then getting out of the hospital after 4 months in 2020, I used oxygen cylinders that put out 4 at that time. It was very oxward trying to get around with them and only having an 1 or so. I bought an Inogen 5 that is suppose to go to 6.… Read more

Just a quickie. I got a flex able tube, about 2″ long and put it on the machine and then attach the tube to that. Works great. It can swing around and not get all kinked up and break. My oxygen supplier is Lyncare if anyone has them. Give them a shout and see if you get one too.

Hello everybody. How does IPF effect your everyday….let me count the ways. Not only the fact I have lost one lung already, that really slows me down and limits what I can and cannot do. I had an experience yesterday that put the heat of the day into perspective. When it gets to be around 78, I stay in because I know the heat effects me. Well,… Read more

Good afternoon everyone. Talking about is your disease worsening, I will have to say yes for me. I had my 6 month lung test last month and the figures weren’t good. My velocity was down to 33 from 43 last time. The volume is at 43 were it should be in the 70’s. My doctor said that if it gets down to the 25% mark, then he will put me on the… Read more

Hello Bob,

I too take 10mg of prednisone daily plus an inhalent of flovent 110mcg 4 times per day. It used to do good, but not so much anymore. My doc now has me on a nebulizer 3 times per day. It does pretty good for awhile as long as I don’t lean over. Leaning over gets me big time. Next month I have my next breathing test. I am almost… Read more

Hello Linda, IPf is a terrible disease that is very unpredictable and effect different people in different ways. I was diagnosed over 2 years ago but I have feeling I had it before that and was told it was emphysema. I started out right away on oxygen because one of my lungs was already gone. I was able to get by with  4-5 l. Then as it… Read more

You need to tell your kids right away. If they are adults, they will understand the severity of the situation after you explain to them the whole picture about the different stages. Another thing is I have read some articles that this disease can be passed down. You need to have you kids know this and when they go for their yearly physicals to… Read more

Good afternoon everyone. The subject of where we might have contacted this terrible disease is a good question for us all I think. The only place my doctor and I could figure out was when I worked for Owens Corning back in 1977. I was one of first hired at a new plant in Denver, Co so got involved in building things from the start. One of… Read more

Lavanya. I would look into getting a Inogen 5. That is what I have It does go up to 6. You can run it 24/7. In the car, take the battery off and plug it in. About connecting 2 together, I wouldn’t know about. I am 6 on the Inogen and my home concentrator. I cannot do much anymore and I am out of oxygen and also with my heart problem, my heart… Read more

I too have wondered this same thing. From reading all the postings, it seems there are alot of us wondering and not getting any real answers. I have read other reports and it seems that the answer is usually a smothering for the final. I also have 4 different heart conditions, colon ulcers and recently have been diaginoised  with the start… Read more

Hello everyone. After reading all the postings today, I want to tell everyone who has had a transplant you are lucky to have such good doctors, nurses and fellow people who care about you and how your doing. To those who are on the list, keep up the faith and know that you’re in God’s hands and things will work out for the good.

I was… Read more

Hello Mike Freeman. I too am a fellow Coloradian,  but live in Grand Junction, which is a lot lower then Colorado Springs. I believe it’s 4500 if I remember right. I am stuck in this altitude. I have tried going higher and I run out of oxygen. My lung doctor told me I am altitude bound. It’s sad because I have kids and grandkids in Denver.… Read more

Hello everyone and hope your Thanksgiving was a great family day. The talk hereon biopsy is something I know a little about. Back in March of 2020, I was in the hospital for what they thought was Covid. After 3 months of being tossed from one hospital to the next, I finally landed in one that actually had an inkling to what may be wrong with… Read more

Good afternoon everyone and hope everyone had a good Veterans day and celebrated our vets. When I first started this journey, it was about 4 years ago. My lung doc said I had emphyzema and had me on Trelogy. It sometime worked and others not. Then in Feb ,2020, I ended up in the hospital unable to breath. After 3 hospitals and a biopsy, it… Read more

Good afternoon everyone. Just rereading thru all the people who have written in to describe their experience with prednisone and I discovered I had written in back in Nov. 2020. Well, it’s been almost a year now so have a little more experience with this drug. Back in Nov, 2020, I hadn’t been out of the hospital that long. I got into a… Read more

Hi Christie and everyone. Had to sign in and make a comment on this. I live in an area known as high desert. Not high like mountians, but higher then what you think of desert. I used to got to Denver quite often to visit my kids and grandkids, but now with IPF, my doc said I cannot because of the altitude. To get over the Rockies I would need… Read more

Hello everyone. Its been a little while since I have written in but reading today’s topic and how everyone deals with it has been a God send. I thought maybe I was the only one who thought the way everyone else is dealing. I was diagnois in March of 2020 with IPF. I have been on 24/7 oxygen every since. By the time I was diagnoised, I had… Read more

So sorry to hear of his passing. Now he will be able to run, jump and act like a teenager again. He will miss you as much as you miss him. We all have thoughts of that day for us and the darkness that will leave our family in. But, he will be waiting for you when it your turn to join him. You will be joined hand in hand and the love you have… Read more

Hello everyone,

Spent the last half an hour reading over everyone’s input to hope. I enjoyed reading them all. It got me to thinking about the subject HOPE. Without hope, what do you have? In our situation, not much. For some, that is all we have. It has been a year since my diagnosis. As Charlene can tell you I was very shocked when I… Read more

Good morning everyone. Was reading all the postings this morning and thought I would add my 2 cents worth in. As Charlene knows, I was diagnosed with IPF almost a year ago now. I have been on oxygen since then. If I am just setting around watching tv, on the computer, walking around the house or car riding, I am fine on #5 on the… Read more

Hello everyone. Just reading all the predictions everyone has been given. I too was told 2-5, which put me into a shock. All I could do was set there with my mouth open. It will be 1 year this next month. I am trying to stay active but the cold is keeping me pretty much inside. I would love to go for a walk, but the cold, even on a short 1… Read more

Hello Charlene and everyone on the blog today. If you remember, I have told you about my experience this past year. It will be 1 years come March that I was diagnosed with IPF. I am not taking the 2 approved drugs because from everything I have read here and thru other studies. I don’t need the side effect along with the other problems I have… Read more

Hello Susan and everyone signed in. I was going over the long list on oxygen that I have read many times, but each time we have a new addition, so it makes it informative. Susan, the last time I signed in you had asked if I also have emphysema and yes I do. I also have afib, cad and a few more illnesses. My home concentrator only goes to 5… Read more

Mark hi,  You where wondering about my other health problems. Well, there are many. Start with afib, cad, ulceritive cloritis, arthritis in all joint and had a knee replaced, macular degeneration. These are the ones I can think of off hand. I have been told by various doctors that no one will do surgery on me because of the afib. If that is… Read more