JanO's Journal

I was diagnosed with Pulmonary Fibrosis on April 2, 2002.  Yes, it is one of those events that make you remember exactly where you were and easily enough for me, what I was wearing, as I was in the hospital...not much choice in wardrobes there!  I was only a few days post open lung biopsy.  I didn't even know at that time that PF kills as many people each year as Breast Cancer does, yet we still do not hear about it.

I remember the grim look on my physician's face as he walked to the foot of the hospital bed and voiced the grave news.  My husband nor I had ever heard of it....he told us he was referring me to a pulmonologist who specialized in this lung disease and oh...by the way...it has a two to three year life expectancy once diagnosed.   I was only 50 at the time, dancing every weekend, flying around the country almost every week auditing medical practices, enjoying my life and family. Until the prior couple months I had felt pretty good.  The only hint that something was wrong was I would get really short of breath on exertion....like walking through the airports, walking into the hotels or rushing into a meeting.  I thought I was just tired, had jet lag or some type of weird virus.  I didn't know I was about to become one of 180,000 Americans with this awful disease that prevents oxygen from getting through to the lung tissue after it hardens delicate passage ways.

I soon learned I had a very rare lung disease and I assumed by the way everyone talked that there wasn't another patient within 10k miles that had this.  Research on the Internet proved pretty disheartening and I spent the first year trying to get my feet back on the ground and fighting to breathe after walking only a few steps in my home.  I had a good specialist, but I decided to go to National Jewish Research and Medical Center in Denver, Co. for another opinion.  Is that ever an impressive hospital and staff!  The doctors there agreed with my diagnosis though and suggested their course of therapy which included IV Cytoxan every month.  My doctor at home agreed and we started that drug, hoping it would arrest the disease and I could get back to work and my life as I had known it.  My body only withstood about four months of that chemotherapy then my blood count dropped and I had to stop it. 

There is no known cure for Pulmonary Fibrosis besides a Lung Transplant for those who qualify and only a few causes for it are known but not nearly enough.  We aren't sure what caused me to get it....the blood and various tests revealed nothing they could pin it on.  They suggested it might have been stress induced but that is just an idea.  Other experimental drugs have been tried and I can't tolerate them without getting rare infections and nothing works.  My PFT's continued to drop like a rocket.  I had a stroke and four months later a heart attack, but pulled through them both with little residual effects.  God was definitely watching over me and truly the Great Physician.

After a year we wanted to see what would happen if we tried to start a Support Group for PF patients. We didn't know if anyone would come or if there were enough other patients in the area to support a group but I met one gentleman and a nurse in my physician's office worked to help spread the word.  We had our first meeting in October 2003.   You could have knocked me over with a feather when one person after another walked into the meeting room that day!  People had driven in from as far away as 300 miles just to be with other people dealing with Pulmonary Fibrosis!  It was so good to meet others going through the same daily struggles, yet it was very sad that so many had a reason to attend this meeting and had never had another patient to talk to and compare experiences.

We are still the only Support Group in the whole state of Texas and it is still going strong and getting larger each year.  Over the years I started getting calls from physician offices and people from several different states, looking for help to get oxygen and/or medications for people with PF.  Their insurance had expired, wasn't enough or there was no means at all for some patients to obtain something we have all taken for granted....air to breathe.  As I made calls I found some companies will only supply oxygen to patients with insurance....it was hard to find oxygen for some patients, but we managed to do it.

Out of that need grew a new Non Profit Organization called Pulmonary Fibrosis Association of Texas, Inc.  a 501(c)(3) approved company.  It was approved by the government last August and we are working really hard to RAISE AWARENESS and to RAISE FUNDS by donations and fund raisers to ensure that no patient that needs oxygen has to go without it.  We want to also try to help fund their disease specific medications as well.  There may not be a cure but they do need air to breathe easier and certain medications ease their distress.  If we can't add days to their life then we will try to add life to their days.

My test results are pretty low but I am still surprising my doctors by being able to get around on my own and still able to work hard for other patients needs.   I have gotten so used to oxygen tubing hanging from my face and sleeping sitting up so I can breathe easier I forget alot of the time that I too am a patient, but that helps me to truly understand how the person on the other end of the line feels when I get those calls from newly diagnosed patients.

A donation from Daily Strength would certainly help us to help others and by the way....if you haven't added it up yet, my two to three year life expectancy is now at six years post diagnosis!  We weren't born with an expiration date stamped on our foreheads and I've found the best prescription is helping others the best way we can.

Please make a donation to Pulmonary Fibrosis Association of Texas, Inc.