[William Kracke]

Lungs Turning Into Leather.

Not really accurate but gets the general concept across.

Bill K.

[William Kracke]

I have a similar issue with my insurance (TRICARE for LIFE as retired military).  They use Express-Scripts for all drug transactions and I have to get a form filled out by my pulmonologist and sent into them to get the prescription approved.  The approval lasts for a year and I have to go through the whole approval process again.  While this may not be quite the same situation as yours I would recommend looking at your insurance company’s formulary for Esbriet and seeing if there is any information there about pre-approval and if not contact them directly or check with the pharmacy to determine what they need to get approval.  They just want to make sure you really need it because it is expensive.

 

Hope that helps.

 

 

[William Kracke]

When I was diagnosed with IPF (over 5 years ago) I, too, was totally set back by the 3-5 year median life span after diagnosis.  Over the last 5 years I have determined the following facts:

1. The statistical analysis apparently was conducted on data from 1992 to 2003

2.  Diagnosis of IPF was apparently made much later in the progress of the disease because of the lack of information about the disease and the inability to use equipment and methods that we now have to diagnose much sooner in the progression of the disease.

3.  There was no treatment specifically for IPF.  Treatments that were used were usually based on other forms of fibrosis which have since been proven to be ineffective for IPF. We now have two drugs approved for IPF that have been proven to slow the progression of the disease.

4. There have been no further studies on the mortality so we keep getting quoted the 3-5 year life span because there is no other study using more up to date information.

I challenge the Pulmonary Fibrosis Foundation to commission a study that will provide much more current and reliable information. Updating this outdated information is really critical for those who are recently diagnosed.  You just have to look at the posts on this site and other forums to see the anguish that quoting this completely outdated information creates.

[William Kracke]

I enrolled in the 1690 trial in August 2019 at Yale New Haven. After COVID hit Connecticut mid March of this year they had to stop enrollment and all trial visits until they got COVID under some sort of control. I just had my first trial visit since February. During the no visit period they arranged for local lab blood draws and other safety measurements locally so that they could send trial drug by courier to my home. The drug sponsor modified the study to take COVID into account.  The down side is that they have not completed recruiting yet and the study has participants continue in the study until the last subject completes the year long main portion of the study.  They have committed to offering all successful completers an open label trial with 1690 until drug approval if the study is successful. So it will be another year to year and a half before we find out what we were on and get or continue with the study drug. I am planning on continuing as I am satisfied that Yale is taking all appropriate measures to keep us safe from COVID.

Before my retirement I worked at Pfizer analyzing drug trials and gained a real appreciation for how important it was to have these trials conducted and the importance that the drug companies place on patient safety.

Bill K

 

[William Kracke]

I have a Samsung Galaxy S8 that has an oximeter function. Unfortunately during an update of Samsung Health app they decided to eliminate the stand-alone oximeter function and it’s tracking function and incorporate it into a fairly useless “stress” function which doesn’t include oximeter tracking or history, just the current value, which I still use frequently when I don’t have my regular oximeter with me.

Although I am not a big fan of Apple products (won’t go into the reasons now) I might be interested in looking at the new version. Hope it will work with the face on the inside of the wrist – after breaking many watch crystals while on submarines over several years I am just too used to wearing a watch “backwards” with the face on the inside.

[William Kracke]

Charlene – many years ago, I was laid off from my job at age 50. At that time I did some figuring with funds we had in the bank, unemployment, and severance pay and determined that I had about 6 months of search time if we pulled in our belt.  Well as you may (or may not) realize, age discrimination in the hiring process is rampant, nothing that can be proven, but it certainly is there.  For the first couple of months all of my applications were rejected without even an offer for an interview and I really started to get worried about what we were going to do when the money ran out months from then.  This worry was eating up my time and sending me into depression.  I am a regular “church-goer” and I decided that I had to get God involved in this before it drove me crazy. So I consciously made the decision to put all that stuff that I couldn’t control in God’s hands. I didn’t just shove it under the carpet, but I did essentially say ” this is too much for me to handle right now, I’ve got to let you worry about it for me.  I’ll still look at that stuff every now and then but it’s all in Your hands”. I was amazed at how much weight was taken off of my shoulders and I was able to concentrate more on getting a job.  Long story short – about a month before I had figured that our funds would dry up I saw an add that only ran for 2 days.  I applied for the job and eventually got the job even though it was in an entirely different area from which I had come from.  Coincidence or divine intervention?  Who knows but that doesn’t really matter.

So where am I going with this?  After I  was diagnosed with IPF I went through many of the same feelings that you have been experiencing: dealing with a terminal disease, limited time left ( although the study that gives us the 3-5 years is old and probably not valid anymore), possibility of a transplant and the ensuing issues with that, and others. Remembering my experience with my job loss, I decided to place most of these worries, over which I had absolutely no control over, into God’s hands again.  Once again I said ” these things are beyond my control and I cannot continue to let them eat me up inside.  I need Your help to watch them for me”.  And again I was relieved of this burden.  I have been able to get on with my life and not let concerns about the future consume me. Do I have a terminal disease? By all means yes. Am I going to die from this disease? If nothing else gets me first, probably. I am not in denial but I am able to focus on more things that really matter right now. I’m in Pulmonary Rehab, I participate in clinical trials when available, I watch my O2 saturation and I use my O2 when needed without any concern of what people may think about this guy with the tubes in his nose.  As far as future implications go I don’t really concentrate on the implications.  I just sort of accept them and try to incorporate them into my life.  If my latest PFT turns out a little worse than the previous one I just try to figure out what additional requirements that may put on me regarding O2 use and physical activity and I do not concentrate on where are we going from here – I have given that job to God.

It’s a long response but when people ask me how I deal with it, this is the response that I give them  It doesn’t mean that I am giving up the fight, I’m just getting rid of the things that I can’t do anything about so that I can concentrate on fighting with the things that that I can have an impact on. Hope that helps a little,

Bill K

[William Kracke]

Charlene – I generally do get some more questions and I try to provide simple answers.  I also try to avoid presenting my condition as terminal (even though it is) and just say that it a progressive disease and cannot be cured.  I also tell people that I am on medication that slows the progression and that my condition has been fairly stable, so far.  I usually get the questions when I am using my POC because I am not on O2 full time , yet.  I also tell them that one of the primary symptoms is the lousy cough that I have and that the disease is not contagious.  I try to keep the discussions upbeat and casual rather than focusing on the inevitability of our condition.  And when the question comes up about whether this is terminal I sort of jokingly say “well if nothing else gets me first, this probably will” and sort of leave it at that.

 

Bill K.

[William Kracke]

Charlene – I usually use “IPF is a chronic, progressive scarring of the lungs that makes it harder to transfer oxygen into the blood. Sort of like my lungs are slowly turning to leather.”  Not really accurate but descriptive for understanding.  I don’t mention that it is “terminal” or “life threatening” because in my case and my age (72) a lot of other things could result in my death because my IPF is fairly stable with Esbriet.

 

Bill K

[William Kracke]

First thing they teach you at Pulmonary Rehab.  Supposed to be best  for COPD but I have found that it works just fine in restoring my O2 levels quicker and maintaining O2 levels under exertion and exercise.  I use it all of the time and recommend it, even if you have heard it is not useful for IPF.  Works for me.

Bill K

[William Kracke]

No – Esbriet