Huff n Puff Online Forum

What is IPF?

Home

Related Links

Join Huff N Puff

The Purpose of this site

Search the Web for IPF information

Huff n Puff Forum Archives

IPF Treatments

"I would in all probability not be here today."

THIS IS MY OWN STORY AND IT CONTAINS MY OWN OPINIONS ON THE TOPICS ADDRESSED.  EVERYONE IS ENTITLED TO HAVE THEIR OWN VIEW AND THIS IS MINE!

 

I was diagnosed in late 1989 early 1990 with Usual Interstitial Pneumonitus.  The fear and anxiety which followed cannot be described easily. At 41 years of age with three children all under the age of 12 this was not something I was at all prepared for. You may think you know how you will respond to something like this but believe, me unless you have experienced it, you have NO IDEA!

For the next 10 years I would under go aggressive drug therapy which eventually would cause multiple health problems.  Everything from glaucoma to diabetes to osteoporosis and syncope.  

It would be 9 years in a haze of broken and clouded memories none of which would have sufficient substance to compile a complete thought.  

However, I am convinced that without taking such aggressive action I would in all probability not be here today. UIP is generally acknowledged to be terminal within 2 to 5 years of diagnosis. I'm more concerned at this time with Global Warming than UIP.

Now in my 11th year I accredit my success to more than above average physicians, both my General Practitioner and my Specialist, and support from my family that could not be quantified using the largest of measurements. 

For the most part they have done it all.  My part if any was insignificant in comparison to what they have accomplished.

Warning Signs

Pursed Lip Breathing

Diaphragmatic Breathing

Help For Shortness of Breath

SOB Positions

Controlled Coughing

Tips For Living

Exercise

Pulmonary Rehab

Postural Drainage

Using Your Inhaler

Using Your Spacer

Flu Shots


 

Now somewhat back on my feet, I am convinced that if I am able to fend off the damage to my health being done by the insurance industry, I may even make it another 10 years or more. As far as disability insurance coverage goes I've had a Scum Life! It seems their objective is to plant you ASAP before you cost them any money! How this parasitic, perverted, sadistic and self-perpetuating plague is permitted to exist and prey upon humanity escapes me! If there was ever a valid argument for retro-active abortion these people meet all the requirements! You can view some of their handy work through this cyber portal.

Now that is off my chest!  

As with any lung disease, where public opinion is concerned, you will be constantly admonished for being or having been a smoker.  Well if you are feeling guilty about causing your own illness you can stop now.  IPF is a restrictive lung disorder.  Smoking causes obstructive lung disease.  However don't take that as any sort of support for smoking. 

If you want to see how smoking affects you click here

If you want some help to quit try this one! http://www.hon.ch/QuitSmoking/step0.html

Hey I said HELP & TRY, I didn't say it was guaranteed! Also, this doesn't mean that somewhere down the road they won't link IPF to smoking.  

The answers to some questions are not as easily found for IPF as they are for other diseases. Such a small percentage of the population is affected by it one cannot help but understand why research dollars are not destined in vast quantities towards IPF research and drug treatment. Yet all is not lost.

As research is done into other lung diseases more knowledge is gained which assists in the efforts to cure all lung ailments.  Some things are common to all.  At present though, we with IPF, it would seem, are generally going to have to be content with spin offs from other medical advancements.  I suppose in reality one could surmise that perhaps 80 or even 90 percent of all disease treatment advances come about in the same way.  We seem to apply the adage "the squeaky wheel gets the grease" to even this field of endeavours.  Collectively we just don't squeak enough I guess.

Initially I was in a state of shock, fear and disbelief.  Have you ever done something and at the last split second realized "Oh Oh - I don't think that was a smart thing to do?" You know that split second feeling lasting about 1 millionth of a second after reality hits?  Sort of like " I just heard a pin drop!" - "No kidding? Where did that come from?" -  "From that grenade on the desk over there!" Well that's the feeling, only it lasts for a lot longer than that!  How long depends on you!

Side effects of drug treatment were horrible.  I am not half the man I use to be, but then there are those who say I never really was!  But riddle me this! I am, twice the man I use to be! Maybe even three times. After 11 years of this I sadly must admit a return to a pre-diagnosed state is pretty much an impossibility.  Even if some miraculous cure for my ailment were to materialize a return to "what was" is not a realistic expectation. Never the less all is not doom and gloom for the future.  At least not where IPF is concerned.  I'll reserve judgement on the remainder until after the law suit!

I want to take this opportunity to tell you, with respect to the choice of treatment or no treatment, YES it was all worth it and yes I'll do it all again if I have to!  I won't like but I'll do it!

Since this was originally composed there have been some new developments in my situation you perhaps may find interesting.

Approaching my 11th year with U.I.P. someone somewhere must have heard an alarm signal go off on the "Great Board of Statistics" indicating an upset in the status quo was imminent.  Seems it was my fault.  Well not JUST me but I was one of a group of I.P.F.'rs who were about to make a shambles of the 2 to 5 rule. No doubt about it something had to be done, and done, quickly!

Recently, in the past few years, what appears to be a new sub-category has been slipped into the I.P.F. box of monikers.  This new one is called N.S.I.P. or Non-Specific Interstitial Pneumonitis/Pneumonia or whatever.  This does not seem to be a new disease but, a new sub-category, created apparently solely to deal with we upstarts.  Those who do not show respect for the "rules" and expire in the customary 2 to 5 years.  I think it is also a multi-use thing that can be applied to any ILD equally under such circumstances.  I mean think about it!  The name pretty much says it all doesn't it?

Since I was diagnosed from a biopsy it is my belief that I still have U.I.P.! Therefore now it would appear to me there are "two" types of U.I.P.  One is the regular run of the mill, wipe you out in 2-5 U.I.P.  Then we have the new "Why did you not lay down and die like you were suppose to?" N.S.I.P. U.I.P.  If I get any more letters I think I will have a doctorate? Can I buy a vowel Pat?  If this is as confusing to you as it is myself then:

Take note of the following:

Idiopathic:    "unknown or of unknown source"
Non-Specific: "not precise, explicit or definite - not quantified or non-particular......."
I Don't Know:    " See above!"

I think I may have found a home for idiopathic but then, I don't know, what do YOU think?!

The good news in all of this is that now I can live forever!  Well not forever!  Just until U.I.P. claims me (or is it N.S.I.P?), something else does or perhaps that punk teenager down the road runs me over with his hot rod! If you think U.I.P. is scary! Walk awhile around my block on a Saturday afternoon! There is also still the possibility of the jealous husband theory! Well maybe we should discount that one, I just looked in the mirror!  Ok Ok I had to put four mirrors together and bend them a bit!

As it says at the top, this is my personal story and my personal views.  Not all of it.  I have left out most of it actually.  You would probably find it far more interesting and mentally challenging to watch grass grow.  I just wanted to share those parts which I thought may help you in dealing with IPF. 

I have received a great deal of email regarding this page. By far the majority of it has been positive but there has been the odd one in which the originator indicated that I was being less than, shall we say, open about all of this.  Hey - even your tax return isn't 100% accurate is it?

Oh yes - Don't forget the chat on Tuesday  and Thursday evenings as well as the forum! Click on "This" to get more info.


 

In the mean time, click the links on the upper left and right to find out what is here at this site as well as some of the things that you can do to help yourself if you have IPF.

 

Home