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…
Just Breathe...Compassionate Help for the PF Journey
I feel hopeful and am looking forward to completing meaningful goals I’ve set for 2018. I’ve had times in the past when the idea of setting goals seemed ridiculous because of having such a serious condition. I realized that for me, this was part of grieving all that…
Photo by Kim Fredrickson I recently completed a pulmonary function test at my local hospital. This test was ordered by my doctor to measure how well my lungs take in and exhale air, and how efficiently my lungs transfer oxygen into my bloodstream. It is…
Last week, I visited my pulmonologist at the University of California, San Francisco. I was a little nervous, because my last appointment six months ago was very discouraging. I had worsened significantly. This time, I got better news: no change since the last visit, which was encouraging. My…
Last week, my husband and I met with a palliative care nurse. A few weeks ago, I shared in another column my frustration with seeking palliative care. Our meeting with this nurse was very helpful. I’ll share what I learned, and I hope it will…
In my more recent columns, I have been writing about wrestling with end-stage pulmonary fibrosis and sharing my experience with seeking palliative care. As you can tell, I like planning ahead to take care of my own needs and the needs of my loved ones. My…
I recently met with someone to talk about palliative care. I’m here to share my experience in hopes it will help you, too. My last column about end-stage PF had thousands of views and LOTS of comments, which shows how important it is to talk about these…
One of my frustrations as a pulmonary fibrosis patient is finding solid information about what to expect as my PF progresses. I’ve asked several doctors what to expect during the end stage of PF, but often get the same answer: “We’re not there, no need to talk…
I had an experience last week that reminded me of how I am still adjusting to my changing energy levels. A friend stopped by to visit and we had a nice time catching up. She was here for an hour and a half, and I was sitting…
One of the hard, but necessary things that we face as a PF patient is our mortality. I am very aware of my shortened life span, and think about every day. This reality guides how I spend my time, energy, and the decisions I make. It also…
