Last week, my husband and I celebrated our 40th anniversary. I was so grateful to celebrate this amazing day with this wonderful man!
Four years ago, I was told I had a few months to a year to live and I was offered no treatment options. Being given such a horrible time frame to live was devastating. I really didn’t think I’d make it to this momentous anniversary. Praise God, I’m still here and kicking. And I’d like to share the things I’ve learned from this experience.
Don’t believe the time frame
Doctors do their best, but they aren’t God, and they don’t control life. No doctor can predict any one person’s lifespan with PF. You may see statistics online of the average life expectancy for pulmonary fibrosis as three to five years. These are based on population averages — they cannot predict your individual experience and your prognosis. These predictions can differ depending on factors such as age, health, lifestyle, type of healthcare received, and the severity of the disease at diagnosis.
Prepare for the worst, but hope for the best
Hearing that I had such a short time frame to live prompted me to take steps to take care of a lot of business and end-of-life decisions so as not to leave a mess behind when I passed. I’m so glad I took care of these important decisions. Don’t give up!
If you don’t like your doctor, get a new one
I was devastated by what my doctor told me. Upon the advice of a friend, I paid for a second opinion outside of my insurance company. She told me about a doctor who had done wonders for a friend of hers with a different lung disease. What did I have to lose?
My new pulmonologist agreed that I had a terminal illness but said the reason I was declining so rapidly was that I was on the wrong medication (prednisone only). He switched me to a new medication — CellCept (mycophenolate mofetil) — that kept me stable for 12 months. He also referred me to a hospital 100 miles away to consult with specialists there.
My first doctor tried to see if my current insurance company would pay for an outside specialist, but they wouldn’t approve it. The first doctors were just waiting for me to die. Needless to say, I dropped them a few months later, and I now have a different insurance company and different doctors.
Do all you can to enjoy your life NOW
It is normal to be besieged by grief, confusion, and painful emotions. I feel these off and on intermittently now, but they were especially strong the first year. As they ease off and I accept and deal with reality, I try to be intentional about enjoying all the good things life has for me. I wrote about some of the things I’m enjoying about summer in a recent column.
Milestones such as reaching my next birthday, anniversaries, holidays, and family events are worth celebrating. Each one is a gift to be relished and enjoyed. If I didn’t have PF and have such a hard time traveling and getting around, we would have had a big party to celebrate our anniversary.
Instead, we planned several small things over a week to celebrate this milestone. We went out to lunch twice at favorite spots, went to a movie, and took a nice drive, and got boysenberry pie! It felt good to celebrate, albeit in a different way.
I’d love to hear from you!
How have you outlived a doctor’s prediction? What milestones have you been able to celebrate? Which ones are you looking forward to? How have you celebrated?
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.