Lung Transplant Recipient | Canada

“Living with LAM has been eye-opening. One day you think you’re fine, and the next day you have a rare disease with no cure, and you will need a double lung transplant at some point. Before undergoing that double lung transplant in 2017, I had LAM for 15 years. While coping with the disease, I used to work full time, went to the gym, traveled, and went out with friends. I always tried to live the best life I could be I never knew when it would get worse.

Looking so healthy but still having LAM was always a challenge because people didn’t realize I was really ill. It made me aware of how many other people around me have invisible illnesses, so I took stock and learned to be conscientious. I also learned to enjoy every day, one day at a time. And I found my new normal – even though there were many things I could not do, there were still many things I could do. I focused on that and was happy with it.

There are so many worse things that can happen: I could be blind, in a wheelchair, I could have cancer… All I had to do was drag an oxygen tank around. When I got my double lung transplant, I thought great, I’m going to be back to normal! But I wasn’t. I needed to take my anti-rejection drugs and deal with all the side effects that went along with them. The LAM is gone for now (though it could come back in the new lungs), but I am still sick and need to adjust to a new lifestyle again. No matter what happens now, I just keep on loving the things I can do without worrying about the things I can’t – I am finding that new normal. After all, the only thing in life that stays the same is change, so we must continue to adjust and move forward.”

– Beverly Holtzman, Canada

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.