Life with LAM

karen kinsey

Trust & Estate Administrator | Retired, Falls Church, VA

Age: 64 | Diagnosed at age: 45

“Living with LAM has been an interesting journey! Although not every LAM experience I have had has been awe-inspiring, many have been wonderful. Initially, my greatest fear was that I would not live to see my boys (ages 13 & 11) graduate high school. Every semi-annual visit to the NIH showed a decline in lung function. Thanks to the combined efforts of the NHLBI (NIH), The LAM Foundation, and numerous LAM researchers, the Miles Drug Trial was conducted. This trial, which I participated in, showed the effectiveness of Rapamune in stabilizing FEV1 in many women with LAM.

I began taking Rapamune in 2011. That is also the year I began using supplemental oxygen. For the past 9 years, Rapamune has kept my FEV1 fairly stable, but has had little impact on my DLCO, which is now under 25%. I am on oxygen 24/7 and have been evaluated for lung transplant at numerous centers. I am considered a high-risk transplant candidate due to a non-LAM related factor and need to find the center(s) that are experienced in handling my specific issue. In 2019 I participated in in the RESULTS trial. For some of the trial participants, Resveratrol has made significant improvements in their supplemental oxygen needs.

When I think about the last 19 years, I am most grateful for the NIH, The LAM Foundation and the numerous LAM researchers who have made a difference in the lives of so many women living with LAM. These groups are constantly striving to do more to benefit us. In late ’18, The LAM foundation initiated the Circle of Hope program to help women who are exploring lung transplantation. I feel fortunate knowing these resources are working to better the lives of women living with LAM.”

– Karen Kinsey

This excerpt is from Breathe, Just Breathe by Jennifer Fujikawa. Share your own story during Worldwide LAM Awareness Month, tag @thelamfoundation on social media, and use the hashtag #WWLAM to raise awareness for LAM with your friends and family.