[Randy]

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 was wrong with me and I would see her in surgery the next day. Well, the next day she cut a hole in my chest and removed a lung that was as hard as a rock. The sent part of it to Rochester and kept the rest so they could also diagoinose it too. Well, it came back as IPF. I had no idea what that was, but one of the doctors clued me in. After 4 and half years with the paulmonoloist and her care, my breathing got to the point she couldn’t do anything more and the oxygen wouldn’t go any higher. Well, I am now in hospice and using liquid oxygen. The setting right now is 13. How much longer do I have, only God knows the answer to that.

The speed at which this disease effects you varies from person to person. Will you still can, do what you had planned to do before you cann’t. Good luck to you all and God bless, Randy

[Randy]

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 time progressed, the Inogen.wasn’t doing the job I needed it to do since it is a pulse and not continuece flow.. If you don’t breath it doesn’t work.My lung doc told me that it doesn’t put out what it says it does. So, I had to go back on tanks

Now that isn’t working either. I have the home unit maxed out at 10 and the tanks at 10 which they go thru the oxygen real fast. Because of the rapid advancing PF, I have been put on hospice with only 1’2 lung left. I don’t o much anymore. Don’t buy a new Inogen, there companies on the internet that buy and sell used ones and recondition them.. I sold them mine since I can’t use it anymore.

Have a good day, Randy Thornton

[Randy]

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 like about 12 or higher. I went for a short walk and then drive with the cylinder and I don’t think there is enough pressure from the bottles to make it work like it should. I normally have mine at 6, up from 5 and I couldn’t feel the difference. I was really hoping there would be a difference to the positive. At 6 the bottle runs out quicker then at 5. I have run out more then once and had to pull over on the side of the road to change bottles.

That is all I can tell you for now. Since I have only had it for a couple of days, just don’t have enough experience with it yet.

[Randy]

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 it. Thank you ,Randall Thornton

[Randy]

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 have a half a lung left. My compactor is running at 10l which is max and my cylinders I have at 6l which runs them out rather quickly. My doc said she will put me on liquid oxygen, which I don’t understand either. After that comes hospice. So, could you or someone give me an answer to my questions. Thank-you, Randall Thornton

[Randy]

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 used an Inogen to get around with. That doesn’t work anymore so went back to the oxygen tanks. MY last lung test wasn’t good. This was in Dec. 2023. i couldn’t complete it due to lack of oxygen. It is now Feb and I am slipping. My lung doc says she is calling it rapid advancing PF. My only lung is showing signs of giving up, I am caughing like crazy, I can’t bend over or I caugh, lose my breath and can’t see. I then have to set till I can see again. My stats range from 62 to 75.

My lung doc is trying 3 new meds and see if any of them slow the progression down, if not, then it will be liquid oxygen and hospice. So people, enjoy life will you can, you don’t know when it will end.

[Randy]

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 surgery. She did a biopsy thru the side of my rib cage and discovered I only had 1-1/4 lung left and the quarter part wasn’t working. So, she took it out and had a sample sent to Rochester, Mn. The diagnoise came back as IPF. From there it has been a daily challenge. I first was on the oxygen cylinders, then bought a Inogen 5. Worked for awhile, but doesn’t put out what they say. Only about 4 and as you progress, it doesn’t keep up. So back to the cylinders.

Altitudes. I am hoping to make a trip this fall back to my old home city. There are the Rocky Mtn that are too high to go over for me. So, I worked out a different route and goggled the altitudes to see if I could make it. Also planned out stops for oxygen resupply, motels.  That is what you’ll need to do for your trip too.

Hope I didn’t scare you in my ramdition, but thought you might like to to read about someones else’s experience. I’m a terrible speller. If you have any questions, let me know, I will try to answer them for you. This is a good forum for info. Everyone here has the same problem IPF.

 

[Randy]

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 was 22%. The FVC-35%, the FEV-40%, FLC-43%. None of them were they  are suppose to be. My breathing has been getting worse and I am hoping to take my final trip in May to visit my old home were I grew up. It all  depends on my scores this time however as to if my Doc. will let me go.

Some of you have said you had been able to bounce back and get a higher number. I am hoping your luck rubs off on me.

Again, have a great Easter and have fun with the grandkids.

[Randy]

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 pulse, 4 is about all it can do. Which is fine if you don’t require more then 4 or 5l. My home compactor I have at 7 and sometimes 8. The Inogen5 I have given up on. It won’t cut it. I am back to the  cylinder and have it at 5 and doing okay, except for the inconvience of the cylinder. The things I used to do, I cannot anymore. I have no energy and run out of air way to quick. When I was in the hospital, they had taken out what was left of my right lung. So, now I am living with a left lung that is  slowly getting eaten up with the fibrosis. So to you all, if you can do it, do it because one day you might not be able to. Here’s hoping to you and your family that you life a long life.

[Randy]

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 my breathing is getting worse. I had gotten the Inogen to get rid of the cylinders. Lately my oxi is telling me my oxygen is in the 80’s and this morning it was in the 70’s. That is scarey. Breathing is very labored at that point. I had had a night of a bloody nose. 3 straight hours of trying to get it to stop. I have heart problems, so on heart medicine plus 2 blood thinners. My home compactor is at 7 and I am on it   24/7. The cylinder I use will out walking or driving someplace and I have it at 5. Any higher and that bottle would be empty quickly.

So, if anyone hears of a continues poc, please let us all know. I am sure there is more then just me that could use one.

Have a great weekend everyone.

[Randy]

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 using it almost exclusively every since then, but have had to gradually switch back to the cylinders this past couple of months. My liters have risen, needing 5 on the cylinders and 8 on the home machine. On that level, you have to use a hi output hoses and cannibus. I keep it at the same level no matter what I am doing. Yes, your nose gets dried out and you can also have nose bleeds. Not much you can do about it.  Would be nice if someone made a continuous POC. I am also on quite a few pills for IPF and my heart. I am  considering doing a clinical trial on a drug I have been following from the beginning of it’s concept.

Well, that’s my 2 cents this afternoon. Everyone have a good weekend.

[Randy]

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 and go with a smile on my face, so to speak.

Once again, thank-you for your info and God bless you and you family.

[Randy]

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. I used to get by with 3-4 on the home unit. Going out was a pain with the tanks, so bought a Inogen 5 that supposedly goes to 6, which I found out doesn’t really. So back to tank now.  I am now up to 8 on my home unit, only goes to 10. On the tanks, I can get by with 5, but it goes fast.

My question, you were with your dad as he died. How did he go? We have all heard that it is like smothering. Can you tell us? There are alot of us who would be grateful.

Thank-you for you tie in this matter. Thank-you Randall Thornton

 

 

 

 

[Randy]

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 didn’t work out. Got a heavy chest again. I was at the bank when it happened, so switched to the tank, waited a couple of minutes and was then able to go and do my business. So, looks like the tanks and I are back together.

People are talking about e and d tanks. Which is bigger? I was looking over mine and couldn’t find anything saying e or d. It says something about 24 cu. ft. all I know is at 5 it only last about 2 hours and you cannot plug it in.

Well, have a great week and weekend. Yak at you and everyone later. Randy

 

[Randy]

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 was feeling vry heavy in the chest by the time I got there. Put on the cylinder, sat there with it on 5 and got to feeling better. So, thing the Inogen is done for.

[Randy]

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 on so figured that was the problem since I’m light sensitive. I left and it got worse by the time I got home, I just about couldn’t see. Got in the house and put the finger oxygen/heart rate on my finger. My oxygen was at 66 and my heart rate was 140. As you know. 66 is way below the 88 minimum. My home machine is at 88. So, back to the cylinders and learning how to deal with them. Should be interesting trying to push it and carry stuff. Anyone with good ideas, let me know. Have a great day everyone.

[Randy]

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.

[Randy]

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.

[Randy]

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.

[Randy]

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 been living with this IPF for almost 3 years, that which was confirmed. Every time I see my lung doc, it is rarely good news. The FBT in June had some low numbers. FVC-35%, FEV1-40%, TLC-43%, RV-54% and DLCO-22%. These aren’t even half of what they should be. So, how much time I have left, I don’t know.I only have 1 lung and too many heart troubles. I am hoping to take a trip this spring to go home and visit my old homestead, people I went to school with. This may be my last trip. My heart doc said it is okay, now for a word from the lung doc. She isn’t to keen on the idea when I saw her in Oct.

Everyone, hope you  have a great Christmas and enjoy the kids and grandkids.

[Randy]

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 turn into pneumonia quickly and then I would probably be done. The plastic air line freezes up real quick. It is 30 degrees out right now and I had to run out to the shed to get something. I wasn’t out more then a couple of minutes and it was froze. Fun trying to get thru the door with the line stretched out behind you.

I’m very glad I don’t live anymore in the snow and freezing temp. Don’t think I would survive. Well, that’s 2 cents on the subject. Everyone, have a great day.

[Randy]

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. As my lung capacity continues to  decrease, my caughing has increased. So, another inhaler was added last week, Budesonide INH. Haven’t been on it long enough to see how it will do. I also have 4 different heart conditions, Afib is one of them. I had another heart attach in July and got 2 more stent added. That makes 5. All this really limits what I do.

Well, that is my contribution today. Wish everyone a Happy Thanksgiving with friends and family.

[Randy]

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 what I could do. I thought making models would be a no brianer. Wrong. You have the order of the glue and the spry paint. That  I cannot tolerate, as probably others can’t. Them with a bad heart and all the pills I take, I have gotten the shakes to bad to work on 1/24th models. So, I had to give it up. I also enjoyed wood working most of my live, but had to stop that too. Again, glue and paint. So right now I’m hobby less.

[Randy]

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 3 hospitals and a biopsy to find out that I was minus 1 lung. I think I actually had IPF before this. I had an old lung doc who said I had emphysema. He never did anything to prove it or disprove. I was on an emergency inhaler. This was 2 years before the final diagnose.

I was at my lung doctor yesterday and told some news we don’t like hear. I have been using an Inogen portable when out and about and a oxygen compactor at home set a 8. The Inogen only goes to 6  but not really. It is actually 4. She said I need to go back to the tank to get the help I need to walk or do anything. She said I am getting to the point of not being able to do anything and not traveling. She cancelled the volumn test for Dec. because she already knows what to expect.

My wife was with me when we where told this, I haven’t told my kids yet. I don’t know exactly how to put it to them. My oxygen ranges from 92 down to the 70’s. Lately in the 80’s alot. She said that if things get much worse, it will be time for hospice. I am trying real hard to not to get to that point. I am trying to get help for my wife for around the house, none available we can afford. 3 hours, once per week to do some house cleaning–$120.

Well, Chuck, here’s to us and the other IPF people who are struggling too. Have a good weekend.