[Randy]

Phlegm, I used to have a lot of it, but being on a steady diet of 10mg of prednisone really helps the coughing for me and the phlegm. Then my doc added and enhalent called Flovent HFA 110 mcg. I take 2 puffs twice a day. I am getting the phlegm back. Not much and only first thing in the morning. But it is enough to let you know it’s there. I think the Flovent might be the cause, but hopefully it is doing it’s job. I can put up with the phlegm. Have  good evening everyone.

[Randy]

Afternoon, well almost evening. I am not sure what is meant by pursed lip or Buteko style(sp) but my lung doc and the rehab center I was at keep telling me to smell the roses and  blow out the candle. It took me awhile to figure it out and get the right sequence, but it works, at least for me.  I can get my oxygen level back up and my pulse to the correct area. Beside IPF, I also have afib, so between the 2 and some other problems, I keep my finger instrument handy so when ever I am not feeling right, I can check and do whatever needs to be done. Well, that’s it for me today. Nothing exciting, just thought I would put my 2 cents worth in. Have a good one.

[Randy]

Good morning fellow bloggers and Happy New Year. I don’t have anything of interest to say today, just wishing and praying that everyone who has this terrible disease is able to improve their live throughout the year and continue with a happy family life. Hopefully the medicines in trial and showing good promise, will come out soon and give us all a hand up in the living category.

Happy New
Year, Randy

[Randy]

Good afternoon Charlene and all the others giving us good info. I don’t have much to say today accept for my thoughts on  Orev and Esbriet. As most of you know, I was diagnoised this spring with IPF. Complete shocker to me. After some exploring in my chest by a surgeon, was told I was missing a lung and the other is getting messed up. Since, I have been off and on of about 22 pills and inhaler daily. One of them is prednisone. My lung doc has been hinting on me using one of the other 2 but I keep telling him no. I have read to much about the side effect from the people in this forum and by studies on the drugs themselves. The prednisone seems to be helping with the caughing and that’s an accomplishment. I had taken the lung test this summer and didn’t do very good. Only got a score of 37, he was hoping for at least 50 so I could get into a drug test. There are quick a few around now and some have some good signs. All I can say is, here’s to us and a bright future.

[Randy]

I am interested in the Wei experiment and am really wondering if it is the miracle drug that many are proposing. My  doctor keeps me pills and now an inhaler and I just don’t know if they are really doing any good. There was a drug in trial #3, Nintedanib, that approved in the pill form instead of the inhaler form. It is now showing the side effects just like Orev or Esbriet. The inhaler form really looked like it would be a good thing, now, no.

What to do and what to believe. I am down to 1 lung and would like to keep it. Any have any more thoughts on the Wei. Would sure like to hear about your experience. Thank-you in advance. Randy

[Randy]

Good afternoon everyone. I had a appointment with my lung doc this morning and so far so good. I have been on prednisone for about 5 months off and on. I got this doc after my other retired and it took awhile to get another doc. This was the first drug he prescribed because I was coughing like crazy. He put me a sliding scale to start, to get the coughing under control. When it was controlled, he took me off. This didn’t last long and I started coughing again. So went on a steady 10 for awhile. Then while he was vacation, had an attack of coughing that wouldn’t stop. So, my family doc put me on 20mg for a week and that helped. After my visit this morning, my lung doc is putting me a daily dose of 5 to see what happens. May go back to 10 if things flare up again.

I haven’t had  any side effects so far. The doc said that prednisone does effect your bones and makes them brittle. So I am getting a bone density test to see where I stand on that. Will find out later.

That is all I can say about this drug. It does seem to help. He wanted me to start on either Orev or Esbriet and I told him no. I have read about to many side effects on them.Maybe later as this disease progress may change my mind. I have been doing a lot of research on all the drugs in the pipeline for our illness. There are a lot of them getting funding and some are in the final stage of the trials and are looking for us. Most are showing no side effects like the for mentioned.

Well, that’s my thoughts for today. You all have a good day and even better Thanksgiving with family.

[Randy]

Good afternoon to everyone.  As soon as I  saw today’s article is about portable oxygen , I had to get involved. After getting out of the hospital in June, My wife and I wondered how we would around with a tank that is hard to navigate with a walker and /or wheelchair. I had to use a wheel chair for awhile till I got my sea legs back under me. We had seen ads for the Inogen 5 that said it would go to 6. When I am just setting, 5 is okay,  but moving I need at least 6. The home unit only goes to 5, so had to get a second one so it could go higher if needed. My doctor sent a prescription for a machine that would go to 10. 4 months and still don’t have one. Anyhow, I got the Inogen, it is heavy with the battery  but don’t have to mess with a cylinder that only  goes to 4. My complaint with the Inogen is it is a pulse machine. Only gives you air when you breath. The house one is continuous. The Inogen can leave you wanting oxygen on a long walk. I took the Inogen to my lung doctor, he looked at it and told me it doesn’t put out what it says it does. He said it is about half. I was wondering why I was out of breath when I use it and am trying to do something. We where going to send it back, but got to thinking about the inconvenience of trying to haul bottles around which only last 2 hours. So, I just use it in the car and when taking a short walk around home.

Hope this gives people food for thought. This has been my experience with the portable. And yes, you need a doctors prescription. I think medicare will pay for one if under a flow rate of 4.

[Randy]

To Susan Howitt, I know what you mean about how can chemicals be the problem from years ago. I thought the same thing and chemicals? My doctor said that the “Idiopathic” does mean unknown, but in my case they had determined it to be chemicals. All I could say was okay. I knew nothing about the disease at that time. Thru studying different articles on the internet and reading what everyone has to say here I have learned alot more. I have been studying any article I  can find  about the different medicines that are being studied and developed. There are alot in the works. The ones that are inhaled seem to have the best results so far. They go directly into he lungs and don’t have to travel all over to get to the actual destination. Total there is 20 currently in the study. Right now I am on prednisone and NAC. One helps with hurting and the  other is suppose to slow down the scaring. Hopefully it does. I was starting to get a cold and was put on doxycycline hyc to curb that. I was told if I get a cold and it turns into pneumonia which would put me into the hospital and I probably wouldn’t walk out since I only have 1 lung left. Well, that is what I have to say today. Be careful and have a good day.

[Randy]

There are sure alot of people today talking about oxygen. So I am going to join in with my experience. I think I have told everyone when I first joined the group that I am new to IPF. I was in the hospital the beginning of the year for 3 months and in rehab for a month to learn to do things again. The hospital is where I found out I have IPF  after they did some exploratory surgery. It was shocking to find out I only have 1 lung left. I was wondering why I was always so tired and just couldn’t do much of anything. I was told that it started along time ago and it was possibly caused from chemicals. That I couldn’t under stand because I hadn’t worked with chemicals t hat I could remember. Then it dawned on me. In 1976, I worked for Owens Corning and had been working with chemicals. I asked the doctor how can something that happened so many years ago cause this problem now. He said it stays in your lungs and meteralizes at a later date.

So, that is how I got IPF. I was told I had 3-5 years, but not the starting point. The oxygen level I need is never below a 5 and that is setting still and sleeping at night. If I get up to do anything, which isn’t much anymore, I have to go up from there. Usually 6-7.  My oxygen machine doesn’t go that high, so they had to put 2 together so it would go to 10 if need be. I have been reading how peoples oxygen level is in the 90s. I wish my was. Very rarely is mine that great. My best is 88/89. It has been lower. I also have afib, which doesn’t help the situation at all. My heart rate goes all over the place. It goes from 40 to 135 to 60. So, I am constantly on the watch for those 2 figures to make sure I am going okay. If not, I have to set till things get back to normal.

We all have pretty much the same problem, the lack of breath. But we also have the same desire and that is to live to see another day, grandkids and kids and of course your mate. I have been doing a lot of studying of the different drugs being used in experiments. There are a lot and some are to be out next year. The only 2 that are out now have a lot of side effects that I don’t want to have, so I do the best I can with a couple that my doctor prescribes. They help on the caughing and are suppose to help on holding back a little on the scaring.

Everybody, I wish you a good afternoon and a long life.

Randy

[Randy]

Trixie and Bob. I got asinged my oxygen supplier before leaving rehab. Yes, the doc has to prescribe it. The testing for the walk and breathing test came later. You will get walking test everytime you go to the lung doctor to see how your progressing and what drugs to put you on. The drugs are common ones. To get on the more advance(only 2 right now) you will need the big test. There are alot of drugs being developed right now. The drugs now have side effects that I don’t want. Cannot wait till the ones in the final stage of testing get approved. There are a couple right now that are showing promise. Hopefully you can get into an expermental program. You have to have a minimum oxygen exchange rate on the test. The only problem I am having is getting the oxygen concentrator at home to go high enough. If I am just setting and doing nothing, a setting of 5 is fine. But getting up to do anything I need at least a 6. Sometimes that isn’t enough. So my doctor put in an order for one that goes to 10. Still don’t have it and that was 3 months ago. So, they gave me 2 of the 5s and it works, but boy, does it put out the heat. Won’t need a furnace in that room this winter. Hope I gave you two some answers. Good luck on God bless you .

[Randy]

Seems the talk is about exercise, heart racing and breathing. Yes, that is a big problem. If I am setting I can be on level 5 on the machine, but start walking around and my breathing goes from mid to upper 80’s, 90’s to the 60’s- 70’s. My heart rate goes crazy seems like all the time. With afib, you never know what to expect. I can have the oxygen/pulse meter on my finger and watch the heart rate go from the mid 90’s down to the 40’s and up to the 100+ and back down again. All I can do is set and wait for it to settle down. Breathing on my walks with the inogen is a little difficult. I can have it on 5 or 6 and walk about 1/2 block and have to set down. My oxygen gets down to the 60’s-50’s, I get spots in front of my eyes, my heart goes nuts. Again, set for a bit before going any further.

I have had degenerative arthritis longer then IPF. I was diagnoised with IPF this spring but have had arthritis for over 6 years. So, I don’t think is is connected. That’s my thought anyhow. I may be wrong. With 1 lung being gone already, the IPF may have started along time ago. When I was told how long I have, they didn’t give me a starting point.

We all have pretty much the same problems with this disease and I know I am hoping, as I am sure others are, that a cure is developed, if not in our live time, then the next group of people who get this terrible disease. I would at least like something that would slow it down. I still have some more living I would like to do.

To each and everyone of us. Pray and wish each other luck on getting a long life to do what we would like to do and fill our bucket list.

Randy

[Randy]

I would just like to add to this forum. I was diaginoised this past spring with IFP so everything is new to me about all the drugs, oxygen 24/7 and trying to exercise. By the time I was diaginoised, I was pretty. or should I  say, am, below the 50% stage. I have already lost one lung and the disease is working on the other. So, I don’t get to do much. The drugs I am on, not sure are really doing anything to help slow it down. I have been reading alot of articles about the drugs that are being studied and some look pretty promising. I hope they become available will I can still get some use out of them. The two that are listed as being used now have lots of side effects I really don’t want to encounter. Everytime I bend over to pick something up or tie my shoe, I am  completely out of breath. My oxygen  levels goes from the 50’s to high 90’s and sometimes reaches into the 100’s. My oxygen consentrator is set at 5 for me just setting around, but I have to bump it up to 7 or 8 to breath if I try to do anything. Walking,  I have an enogine. it is the newest one but only goes to 5 and am told by my lung doctor that that isn’t really true, It only puts out about half of what it says.

I too have arthritis in all my joints which doesn’t help the situation. Have had 1 knee replaced and my have to have something done with it. It feels like it is twisting. On top of all this, I have afib. sure you all know what that is.

Well, I think I have rambled on enough. If anyone can get anything out of this great. You can also write me an email for anything personal.

Have a great rest of your week,

Randall thornton