[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.

[Randy]

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 was around 9:30 and I had to run to Walmart to get a couple of things and it was already starting to get hot. Time I got of the store, back home, it was in the 80’s. I opened my truck door and reached to the items I purchased, started to walk up the step and about passed out. I saw my lung doctor this morning and told her. She said the Inogen just isn’t doing it anymore and need to get back on the cylinder. The Inogen is fine for just riding or driving my truck, but that’s it.

Another thing IPF dictates is where you can go. The altitude stops me from pretty much going anyplace. Where I live is under 5k altitude and much higher then that I cannot breath, so here I set.

Unlike some of you can qualify for a lung transfer, I cannot. I also have a bad heart. I have had 4 heart attaches. I have been told no surgeries at all, I would die on the table.

Try to pickup off the floor, mop, clean, forget it. I start getting to short of breath, I chock. And the chemicals you use to clean will get you.  I have had sever nose bleeds and blew out blood clots.

So, I wish everyone a good life and keep up your courage to fight. One day there will be a cure that doesn’t have side effects. There are some coming down the pipeline now, just waiting for approval.

 

 

 

 

 

 

[Randy]

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 above hospis. As you can figure, this is scary, for now I am really planning out some last minute bucket list. My youngest son has been after me for us to got out to the state of Washington to see their house, were they live and some sights. My doc said if I don’t get any worse between now and Sept. I can go. So, we are planning on this as possibly my last trip. I hope not, but it could be.

Well, everyone, have a great summer and yak at you all again.

[Randy]

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 to find out what it will be. My last one showed at 37%. All I can do is live day by day.

[Randy]

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 I had to have 2 machines hooked together. Then one machine died and it was replaced with one that goes to 10l. Well, I was doing 5, then 6 and now 7. My breathing and caughing is getting worse and I am at the point where I cannot do anything that involves bending over. I instantly start caughing and my oxygen goes to about nothing. So my poor wife is now doing her thing and mine. I got an Inogen after getting out of the hospital so I wouldn’t have to haul tanks around. I only problem with it is it’s pulse so you don’t get oxygen continuous. It says it put out 6 but my doc says it really only puts out about half. So, the only time I use it is when I go someplace either as a driver or passenger. Yes, I am still driving and will tell I just cannot anymore. I have driven since I was about  years old.

Don’t know it this is any help to you but if you would like, contact me by email. Would be happy to talk with you.

[Randy]

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 checked for this also. If caught early, it can be slowed way down and you are more eligible for a transplant.

[Randy]

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 assignments I had was to fiberglass the redwood troughs that where in the ceiling of the plant which was about 40 feet in the air. I was sent up there to use fiberglass resin to seal the wood. No mask was provided to stop inhaling the fumes. Well, in 2010 I ended up n the hospital and after many test including a biopsy of what was left of my right lung and it was discovered I had IPF and the possible cause was the chemicals. It was hard to believe because of number of years since  I worked there and now. I was told it stays in your system. From there I was told all about the thing called IPF. All I could do was lay there and bawl. Now I only have 1 lung left and it isn’t in great shape. I am on 24/7 oxygen set at 7L and can hardly do anything anymore without caughing my lung out and loosing my breath. Nothing can be done, so I just live day to day.

 

 

[Randy]

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 nuts. We are going to try and do a trip to Washington this fall. Depend on how my force test goes. I will also take a tank with me because I can get it up to 10 when the Inogen isn’t doing it for any mountains. Side note, I cannot fly either. I was told that after I was discharged from the hospital. Good luck  however you go.

[Randy]

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 alzheimer. So, which one is going to get me first? Since 1992, I have had 3 heart attacks with 3 stenz installed. Recently a stroke due to one of the heart conditions. So, which way do I want to end it, only haven knows. I wish everyone luck on their continue survival of this terrible disease called IPF

[Randy]

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 in 2020 and didn’t know I had it, like most of you. But by the time it was discovered, I had already lost 1 lung and the other is being beaten up. I cannot have surgery due to my heart problems. So, all I can do is pray that I will keep on trucking along and hopefully capable to keep doing things.

So, everyone, have a good life and keep your thoughts up.

 

[Randy]

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, lower altitude will help you. As far as the 2 approved drugs, I refuse to take them. I don’t want the side effects plus I have heart trouble. There are a lot of drugs in 2nd and 3rd test that are proving to be very promising. A lot of the ones doing good are inhalent. That makes since because that goes right to your lung and not threwout your whole body. If you would like, I could email a copy of the sheets I have telling about the drugs that are doing good.

[Randy]

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. The surgeon came to see me after getting checked in, took one look and said I know what you problem is. After some xrays she sheduled a biopsy. This was he first time I had seen my wife in over 3 months. They thought it was best if she was there because of my heart problems. Was a good thing they did, I died but thank God, I was revived. She went thru my right rib cage with a 1″ hole and took out a 4″ piece of what was left of my right lung. That was what the surgeon had seen in the xrays was the right lung pretty much not there. They kept part of the lung to study themselves and sent the rest to Mayo Clinic. It took a whole to get the results back, but they determined it was IPF.  So yes, I would saw yes on a biopsy, that way they will know for sure. I have been on 24/7 oxygen and trying to be normal.

[Randy]

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 found I had IPF and probably had it all along. Along with that came afib to join the cad and degenerative heart disease. Have other problems to, but that’s another story. Anyhow, my current doc put me on Flovent after finding the Trelogy didn’t work. After awhile and finding out it does help, I asked the doc just what is does. She told me that it is a inhalent steriod and works in conjunction with prednisone that tackles the lung from the other direction. For me, it’s working because I am not doing as much coughing as I used to.

Well, that is my 2 cents for today. Here’s wishing everyone a Happy Thanksgiving with your family.

[Randy]

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 caughing spell and the lung doc put me on the train of prednisone starting really high and working down. Didn’t work so have been on 5mg/day since then. It works unless I have a flare up of caughing then back to 10 or 20mg per day till it stops. He now has me on 5 one day  and 10mg the next to see how that goes. As people have noted, is does have side effects. I do have the shakes so I don’t write much any more. I was to get a cat scan to check out my bones because that is the main concern with him. Still haven’t because of the cost.The copay. So far, so good. Well see how the future goes.

[Randy]

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 go up 11,000 feet, which is more then double where I live. He said I would need a t ruck load of oxygen putting out at least 10 to make it. As far as humidity, don’t have much here, around 15-20% at the most. But the heat……that is my killer. We have had 100+ for almost 3 weeks now and it is just as hard to breath in that as humidity. We have always used swamp coolers with no problem. With this continue heat, isn’t not cutting it. Anyone else having this problem with the dry heat? Everyone, take care and have a great week.

[Randy]

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 lost one lung. Found that out when they went to take xrays and found it wasn’t there and the diagram is up in my chest. You talk about being shocked and not knowing anything about this disease at all. Like Sam had said he worked his whole life and did let things slow him down. I am also 72 and this not being able to do what I used to do is dishearting and makes you feel useless. All you can do is do what you can. My home concentrator is maxed out and the inogen is on 6. To all the dad’s and grandfather’s out there, Happy Father’s Day.

[Randy]

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 each other will be re-newnd.  God bless you and keep you.

[Randy]

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 wrote into this column. How and why did this happen to me? I didn’t know what to think or do. My doctor had told me 2-5, just like a lot of you have heard from your own doc. Just didn’t tell me the starting point of the countdown. What has given me hope is the advance in medicine for our IPF. The only 2 out there have so many side effects, I won’t take them. I have enough problems besides the IPF. So, I have done a lot of studying on the different meds that are being developed around the world. There are some that have a really good prognosis and are in the final stage of testing, then they will be out. That is my biggest hope and prayer that they are out in time to save of us.

My other hopes are with my family. I  have 9 grandkids that I really want to see grow up into beautiful young men and women that are making a difference in the world. My biggest problem is trying to see them all. With only 1 lung, I am bound to where I live and no going up in altitude. My lung doc says there isn’t enough oxygen in the world to get me over the mountains.

I got a kick out of some of the comments. Terry, I know what you mean about the air line. I will be walking thru the house and all of a sudden my face is twisted around and my ears and nose pulled off. Ron, I liked your letter about yes, we are all going to die someday, make the most of what we have and don’t sweat the small things as they say. I had a cat scan a month ago and I’m holding steady. Nothing new, which is hope.

Well, that’s enough rambling from me. Here’s to everyone having a great day and week. Charlene, thank-you so much for having a place for us to talk.

Randy

[Randy]

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 concentrator. Doing anything, it has to be at least 6 or 7. The only way to get that is to put 2 machines together. Then things get hot in the room they are in and you can watch the electric meter go around. I bought a Ingen last August. It is the lastest that goes to 6, supposedly. I us it for car trips and doing things outside. I have to stop after about 10 minutes will working outside because the pulse oxygen just won’t keep up and it is heavy hanging around you neck. With the battery it drags your head down when you bend over. I don’t like it for that reason. Heart trouble? I have afib and cad. So I have double the problems. I take my finger blood pressure and oxygen level at least twice a day. My oxygen is usually always in the 90’s but due to the afib, my pulse will jump all over the place. Anywhere from 40 to 140. So, I have to really  watch what I do.

Well, I think I’ll close for now and let everyone get back to what they where doing. Have a great day and looking forward to more reading from you all. Randy

[Randy]

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 block walk to the mailbox, freezes my oxygen line. With my fake knee, the cold freezes it up and I cannot move. So, the boring inside of the house reminds me of the hospital room. I do the exercises I did in the hospital to keep some movement. My wife asked me the other day if we are going to do the landscaping we had planned on doing last spring before I got hospitalized and I told her  I sure hope so. Working in the yard has always been my fun thing to do. So, we’ll see if it comes to pass. Everyone, have a great weekend and yak at you later.

[Randy]

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 with my heart. But I have been doing a lot of studying on all the drugs are being tested. GLPG1690 was one that should good results and none of the side effects. It was suppose to be ready this years. Is that still on schedule or has it been moved back? There are over 20 drugs in tests and now that more money is being put forth, more are being tested. I hope they have one of those soon as I would like to live a little longer. Do you remember the lady who was going to get into a test and write me about the drug to see what I knew? She never did. Hope she is doing good.  Well, that is my thoughts for tonight. Everyone have a good evening and stay safe.

 

 

[Randy]

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 like pretty much all of them. It got pretty bad this past summer and fall, so had 2 get a 2nd one and run together. Boy, does that make a bedroom hot. Anyhow, this past fall I went back down to using just 1 and it works okay now. Well see what happens this spring and summer when I am outside more. I hope to do some yard work, that we’ll have to see too. That is my 2 cents for today. Everyone have a great day.

[Randy]

@mark-koziol

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 so, then I guess that is that. I am hoping that one of the drugs they are working on turns out the way they are hoping. Couple they think will reverse the fibrosis. Would be nice. Anyhow, how and who paid for the transplant? Also, I was told the after drugs where very expensive and you’re saying $40. The only transplants around here is heart. Please keep filling me in. I am getting disperart with only a partial lung left. The last lung capacity test I had was 37%. My doctor had mentioned me going to Denver to a lung hospital, but O have to go over the Rocky Mountains and I couldn’t take the altitude. Hope to hear from you again. Randy

 

[Randy]

Hello everyone. I have been reading this articial on transplants. Very interesting. I have a question on my situation. I spent 4 months in the hospital at the beginning of last year. After a bunch of checking and prodding and poking and then a exploritor surgery where it was found I was missing a lung. After they sent a sample to Rochester, Mn it took a couple months to get an answer back. The local hospital had kept a sample and after they test it they determined I have IPF. That was confirmed by Rochester. My question is this. Because I have already lost one lung and the other is being slowly destroyed, would I quality at all for a transplant? Could you tell my the cost of the transplant and all the drugs afterwards. I had the lung capacity test done and came out at 37%, which my doctor said disqualified my from any programs.The last appointment I had with the doc he supposedly had some big news, well there was none. Reading an article this morn that the future test they my be using people who are below the 47%.  I would appreciate any answers I could get from this group.