Randy

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, it…[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 point…[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 afraid…[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 worsened…[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 be…[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 the…[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 goes…[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 of…[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 diagnoised…[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. So,…[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 me.…[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 was…[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 bad…[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 to…[Read more]

Good afternoon everyone. Listing wins for the past week, well, my win was on the 21st. I had my 6 month lung evaluation with the capacity test. I was pleasantly surprised about the results. The previous test was a 32% capacity. My test was 42%. I couldn’t believe it. I have been working on being able to breath deeper over the past 6 months plus…[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 already…[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 for…[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 first…[Read more]