About six weeks ago, I shared that I am under consideration by the University of California, San Francisco (UCSF) for a lung transplant. A few weeks ago, I got the good news that UCSF said YES to allow me to start initial testing to…
As a pulmonary fibrosis patient, I try to stay as active as possible. But as my disease has progressed, it has been harder and harder to travel. Just a few days ago, my husband and I traveled 400 miles to see my 94-year-old father whose health is failing.
Being diagnosed with pulmonary fibrosis is tough, don’t get me wrong. If I could wave a magic wand and not have PF, I would. As I’ve grieved over the last three and a half years, I’ve come to appreciate some positives related to this diagnosis. To learn more…
Two weeks ago, I was blessed to celebrate another birthday — 61 to be exact! As a PF patient, you know how significant this is. I wonder if every birthday is my last. These thoughts happen for me with every holiday and anniversary, too. I normally would not…
As a PF patient, I love many hobbies that I can no longer do. I miss the normal activities of life that are now too cumbersome or simply wear me out. One of the pastimes I can still enjoy is going to the movies. This is something I…
Using supplemental oxygen is a mixed bag. It is wonderful because it gives us the oxygen we need to keep our body healthy and to stay alive. It is hard due to many reasons I shared in a previous column, including dealing with the tubing. I’ve discovered…
Last week, I had my first appointment with the lung transplant team at the University of California, San Francisco (UCSF). Last month, I wrote a column about the team’s decision to meet with me. This first appointment went very well, better than expected! Praise God!…
I had a scare when using oxygen last week. It’s not unusual to have my oxygen levels off target from kinks in my cords. And I’ve accidentally set the liters-per-minute dial too low. But last week was different. I was getting ready to go to a massage appointment.
As PF patients, we need all the help we can get, no matter where we are in the progression of this disease. Newly diagnosed patients often feel shocked, confused, angry, sad, or anxious, and desperately need information to figure out what is happening to them. It is normal…
There must be a better way! For those of you using supplemental oxygen, you know it is a blessing and a curse. It’s a blessing because without it we would die, but a curse because it is so difficult to access, use, and live with daily. Check out…
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