As I think back, my first encounter with a breathing problem occurred in 2003 while doing yard work. I had a strange feeling in my chest as I emptied the wheelbarrow full of soil and felt too tired to continue. In 2005 my left lung collapsed and a 10th of it had to be removed. I was told I had IPF, originally diagnosed in 2003, but not told to me.
I’m now in my 8th year, going on 9th, since my diagnosis. I have done better than most with this disease. I was put on continuous oxygen 7 months ago.
We purchased a candy apple red scooter to match our candy apple red retirement CUV as I am not able to walk long distances. We also installed an electric chair lift in our 2 storey home.
My husband, Bob, has been wonderful and has added the word chef to his resume. A very good one, I may add.
IPF has restricted our travel but we have gone, by car, to visit our son’s family complete with 3 beautiful grandchildren, in Ontario.
As a caregiver, I pretty much need to be around most of the time. I attend with Val, at her appointments with the transplant assessment team and support groups. It’s important to understand what’s going on. At the initial diagnosis, there was considerable apprehension and negative feelings. But once fully informed, and past the disbelief phase, knowledge becomes very helpful. The IPF support group has been wonderful.
Care giving means to be there to provide aid in whatever Val cannot readily do alone. For example, I manage her oxygen tanks, making sure they are full, ready, and stored properly in the car when we travel. We took a car trip last Autumn through Northern Ontario to Stratford. There were a few worrisome areas without cell phone coverage, but we made it okay. We have a GPS in the car and that’s very helpful in knowing where to next, and how far to go, at all times, in case of emergency.
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Tell us how IPF has touched your life – whether you are a patient, caregiver, family member or health-care professional. Send us your story and photo to firstname.lastname@example.org.