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Pulmonary Fibrosis: How Are You Affected By This Disease?

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Dyane introduces herself and describes her experience living with pulmonary fibrosis.

Hi, I am Dyane. Eight years ago I was diagnosed with pulmonary fibrosis. Most people, when they look up pulmonary fibrosis on the Internet see that it’s usually fatal in two to five years. I am here to share my story with you and how I’ve fought for these eight years and to tell you that there is no expiration date stamped on your behind.

My mother died of pulmonary fibrosis in 1996. She was one of the people that did die. She was diagnosed and died five years later almost to the date. At that time, nobody knew much about it and after my mother passed away I didn’t think I’d ever hear about it again.

When I moved back to Phoenix we lived near the North Mountain Preserve and my daughter and I would go hiking all the time and I was short of breath, which I blamed on being out of shape and having smoked for a lot of years. I had quit smoking and I kept expecting that the shortness of breath would go away, but it didn’t.

And when we were moving, we had just moved into an apartment; we were building a new home and I laid down and I couldn’t breathe. So the next day I went to the hospital and they put me in because my oxygen saturation levels were off and they didn’t know what was wrong with me.

Three days later I passed out on the way to ICU on the way to be put on a ventilator. I was on a ventilator for eight days and was given a 50:50 chance of living. They did a thoracotomy on me to send a slice of my lung out. They really didn’t know what was wrong with me except for the fact that I was having some sort of an autoimmune response that was attacking my lungs.

Three and a half weeks later I got out of the hospital. I was told that I had idiopathic interstitial pneumonitis, which is basically a form of pulmonary fibrosis. I kept asking the doctor, “Is this the same pulmonary fibrosis that killed my mother?” And he said, “No, or you’d be dead by now.”

For three years I was watched over by my pulmonologist. I had CT scans, I had pulmonary function tests and they all stayed the same. I was very stable, and after three years he said, “You are fine. Go live your life. I don’t need to see you anymore.”

Two years later I noticed a decline in my breathing and my husband who was ill at the time, I went out and bought an oximeter to measure the oxygen because he was sick, and just to find out where I was I stuck it on my finger as I walked around Safeway and my oxygen saturation was at 75%. The doctors don’t want you going below 90.

I immediately went home, put on the nose holes, and I have been connected to a 50-feet leech ever since. I went to my new pulmonologist. She is my pulmo-dudette as opposed to the pulmo dude, and had a CT scan and a pulmonary function test and my lung function had declined down from 55% to 38%. Technically, I am eligible for a lung transplant, but I weigh too much thanks to the heavy doses of prednisone, which make you eat everything in sight.

So here I am, fluffy. I am on eight liters of oxygen or more when I am walking, which scares a lot of people that don’t understand pulmonary fibrosis and I still work 40-hours a week as an accountant.

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Add a Comment7 Comments

I am so encouraged by what you said and checked that it saved my life! This is so inspiring. I also am in Phoenix.

May 27, 2012 - 5:46pm
EmpowHER Guest

Great simple essay that talks about ways our life can change with fibrosis.

March 12, 2012 - 11:37am
EmpowHER Guest

So good to hear from folks who are still bee-bopping along on higher doses of oxygen. I am on 8-10 LPM when at rest and a little more when active. I've been trying to find others who are on the higher doses to compare notes with but they aren't easy to locate.
How do you cope with oxygen need when at work? How many tanks or concentrator must you take to be able to make it through a typical day?
I am lucky to be retired now and at home so even though I am leashed to a nose hose, I am relatively comfortable when at rest.
Thanks for your insight, it's very helpful.
KG in TN

June 1, 2011 - 11:20am
(reply to Anonymous)

I am now retired so I just have to cope with the 50 ft. of tubing here and the portables. I am about the same as before. Some days are worse than others. I have asthma to cope with occasionally. I feel pretty well however.'Nancy Heckelman

June 1, 2011 - 12:09pm

Dear Alison,
I would love to tell you the details of my experiences. As I had mentioned we discovered it in Dec, of 2008, as I was short of breathe and it was becoming worse. MY blood oxygen was only reading 72, thus a very quick trip to the hospital for a week. After a biopsy of the lungs they discovered that I had IPF. I was put on oxygen at a level of at least 6m which I am still on. I have had numerous CAT and pulmonary function tests and have not changed from my original 30% lung loss as before.
As far as how I feel from day to day, that varies. Some days are better than others as weather makes a big difference. Ohio is not the best climate in the country. I have just retired from being a treasurer of a corporation for 37 years and really love retirement as I can do what I want and relax when I want. Of course, we take oxygen wherever we go, but seem to make do after this long.
Occasionally I have a cough, but nothing that requires medication for. My BP has dropped since I retired from 150/80 to 97/70. Can you believe that? Stressful jobs can make one get quite anxious. I can eat almost anything I want, yet my appetite is not the same as before,. I am 70 years old, but like to keep very busy and active. I don't sit still well. HA!!
Thank you for your kind concern. Hope to her from you soon.
Best Regards, Nancy

July 26, 2010 - 5:00am

You are an amazing person. I also have IPF since 12/08' I am on oxygen (#6 setting when active. I just retired on 05/01/10. Would love to talk to you more. Stay well. Best Regards, Nancy Heckelman

[personal email removed by Moderator per posting guidelines]

July 25, 2010 - 11:42am
(reply to nano)

We would love to hear more about your story. How are your symptoms on a day-to-day basis? How did you know that you first had this condition?

July 25, 2010 - 3:27pm
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