Pulmonary Fibrosis: A Personal Story

Doris:
Pulmonary fibrosis can affect anyone at any age. I am a 75 year-old Grandma, a stay-at-home homemaker, wife – married to my wonderful husband for 53 years – and mother to my three sons. I also provided childcare in my home for 13 years, and my husband and I were foster care parents for a number of years.

My journey with pulmonary fibrosis began in November 2004. I began having coughing spells and was was initially misdiagnosed as having asthma, but in 2008 a chest x-ray for pneumonia revealed that something more was going on in my lungs. After additional x-rays, breathing tests, a high-resolution cat scan (HRCT), a lung biopsy, and many doctor appointments, I was diagnosed with idiopathic pulmonary fibrosis (IPF) In January 2010. IPF is a specific form of pulmonary fibrosis (PF) – a scarring condition of the lungs.

IPF is a devastating diagnosis. Truthfully, I felt like giving up. I went to bed each night for several months with the words to a hymn going through my mind. “Because HE Lives, I Can Face Tomorrow”. My faith was a very important part of finding peace – even in those dark days. God is good! I have accepted my diagnosis.

Since my diagnosis, I was placed on supplemental oxygen. I started going to pulmonary rehabilitation, attending an in-person PF support group, receiving acupuncture treatments, and I found on-line support groups on Facebook. I have learned a lot from all of these sources.

My activity has been greatly diminished since my diagnosis. I can still cook and still bake all of our bread, etc. I still make all of our pickles, jams and jellies as I’ve done for nearly 50 years. It takes longer and I’ve had to make adjustments in how I do things. I do most of the laundry, but my husband has taken over the bed-making, vacuuming, and all of the yard work. When we have our family get-togethers, my husband and the rest of the family have pretty much taken over. Shopping is difficult and I could not do it without the electric shopping carts in the stores. Since shopping has become difficult, we have been just giving money gifts for Christmas and birthdays. The grandchildren do not mind because they like having the money to save for something special they want.

When I was diagnosed and learned that most people have never heard of PF unless they know someone who has it, I decided that I would become an ambassador for PF awareness. My husband and I wear badges that read “Stop Pulmonary Fibrosis.” They often give us an opportunity to talk about the disease and hand out information about IPF. I give out written information rather than talk because speaking about it repeatedly can get depressing. I am living with IPF.

Doris’ Husband:
My wife was diagnosed with IPF in January 2010. Since then, our life has changed drastically. She’s been on supplemental oxygen for 5 years. It is really hard watching my wife of 53 years gasping for breath during one of her coughing spasms.

I do all of the driving now. Getting ready to go out means making sure there are enough oxygen bottles to last for as long as we are planning to be out, and enough for unforeseen events. I’ve also had to assume many of the household duties that she has always done. I do all the bed-making, vacuuming, help with the laundry, etc. We had to purchase two stair lifts so she can go up and down stairs in our 2-story house with a basement.

Doris’ Family:
PF has embezzled and stolen our mother’s physical health over the last decade. Slowly, and at first without much notice, mom developed a cough that seemed more of an irritant. Then, as the coughing continued, misdiagnosis followed misdiagnosis as the little known disease slowly, but persistently reduced her lungs and energy. When finally diagnosed, we all faced the fear and shock that there was no recovery, that things wouldn’t just continue on, that life had now changed and there would always be a thief stealing more and more of mom’s energy and life.

As the effects of mom’s disease have progressed, many things that “are mom” haven’t changed, but others have. She is still the age-defying database of family knowledge, genealogy, birthdays and who’s who. How she is able to manage and enjoy that knowledge has changed, though, as she’s gradually becoming unable to travel for birthdays and family gatherings. Flying is now out of the question. Even short car trips are punctuated with the clang of oxygen bottles and the purr of the oxygen concentrator.

She is still the consummate cook and baker. But, she has had to scale back her enjoyment of that to smaller tasks, or risk tiring that leads to coughing spells. Some things have stopped altogether, like the big holiday feasts that have been taken over by the family. Mom still wants to do as much as she is able, but we want to do as much as we can so she doesn’t get too tired. The balance between the two can be difficult to gauge. Mom has a hard time not being as involved as before.

The coughing spells and seeing mom fight to catch her breath is the most difficult part. Imagine the cough from your worst chest cold, but it lasts not 10 days but for over 10 years. We are unable to imagine that much discomfort, yet she still has a positive attitude, a smile, a hug, and fresh bread when we visit.

For more information on pulmonary fibrosis:
www.coalitionforpf.org
www.pulmonaryfibrosis.org


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