IPF? You Are Not Alone

My Sweetie grew up a Yankees fan, so we try to get to a game when they are in town.  Monday was her birthday and she received a pair of tickets as a present from her daughter, for Dollar Hot Dog Night.  A double score for my Sweetie.

It was a beautiful evening for a ball game, the Rangers won, and we had a great time.

You can't tell from the image, but she is wearing a Texas Rangers hat, and a Yankees shirt, she was ready for anything.  She got to talking with the couple sitting next to us and mentioned my lung transplant.  We talked about how the new lungs are doing and about the games we came to carting O2 bottles.  It turns out that the gentleman had lost two brothers to Pulmonary Fibrosis.

This seems to happen quite often, we meet people with friends and relatives who have, or who have passed from, PF in general and IPF in particular.  This seems to be a very common rare and terminal disease, that no one has heard of.  This is a problem.  The lack of public knowledge about the disease hinders fundraising, both public and private, for research in finding a cure.  More importantly is the fact that many of us with this disease feel alone and isolated.  If you have been diagnosed with Pulmonary Fibrosis, you most likely know what I am talking about.

Most of us who are finally diagnosed with IPF were referred to a Pulmonologist by our family doctor or by a hospital after a bout with pneumonia.  They noticed some scarring on our lungs and off to the pulmo we go.  The Pulmonologist makes us blow into a machine, takes more X-Rays, orders a High Resolution CT, and calls us back to the office to give us "the news".  We learn that we have PF, maybe we are even told we have IPF.  Up until very recently, the Dr. would tell us that there really wasn't much they could do and that we had 3 to 5 years left to live, depending on how much damage has been done to our lungs prior to diagnosis.  That is quite the blow, finding out that we have a terminal disease that we have most likely never even heard about. Going to the Internet to find out about our disease does not do much to give us hope, and depression is common

Well guess what... Idiopathic Pulmonary Fibrosis is not that rare of a disease.  It is estimated  that there are currently over 130,000 people in the United States with IPF, and that somewhere around 50,000 people are diagnosed with IPF each year.  (ref)

If you have been diagnosed with IPF, please know that you are not alone.  Here are some Resources for the Pulmonary Fibrosis Patient that you might find helpful.

So why is IPF, a disease that will most likely kill more people than breast cancer this year, so unknown?  I have a couple of theories on that, but I'll save those for another day.

I just wanted to write this post so that if you have found it looking for information on IPF for yourself or a love one, you will know that there are many other sharing your journey.  There are support groups for IPF patients and caregivers popping up all over the place.  You can most likely find one local to you here.

If you have been prescribed supplemental oxygen, please use it.  Use it even when you are going out in public.  You have Idiopathic PF, the Idiopathic part means that the cause is unknown.  You did not cause your disease.  Lifestyle may have been a contributing factor, but not a cause.  It is very important that you keep your blood oxygen saturation above 90% (any recommendations are solely for  people with restrictive lung diseases, obstructive diseases have different rules entirely).  You will feel better, have more energy, and likely live longer by doing so.  When I was on O2, I was surprised by how many people mentioned that they knew someone with PF who would not go out in public.  I also see this attitude on the forums.  People are embarrassed by the tubing and consider hauling tanks and machines around a hassle.  Getting out and about is good for the soul, and the muscles.  Well... that probably should have been kept for another post also :)

If you would like to talk with someone who's been there, done that, leave a comment of shoot me an email.  I will be sure to get back with you as soon as I get the message.

You are not alone.