Thriving with LAM: Dina

Dina is sharing her story of hope and resilience as part of our “Thriving with LAM” series for Worldwide LAM Awareness Month 2020. Lymphangioleiomyomatosis (LAM) is a rare lung disease without a cure.

Dina was diagnosed in 2009. We’re grateful to her for telling her story and offering her advice for living and thriving with LAM.

Dina’s story

I had the world by the tail, and I was having the time of my life when I was diagnosed with LAM. I worked at the Eldorado hotel casino in Reno as a beverage server. I’d been there almost 10 years. I had been diagnosed with asthma years earlier but nothing worked for my shortness of breath. When I was finally diagnosed with LAM, and doctors discovered my oxygen saturation levels were in the low 70s at rest, my world changed in an instant.

I was told all the things they used to tell you. I was put on oxygen. I had 10 years to live. I was told I could no longer work. They even gave me a prescription for a scooter, which I got: candy apple red! Over the next few years my life was turned upside down.

I get very short of breath. My main symptom is the shortness of breath. I also have extreme hypoxia so my saturation levels drop very low and very fast. I have been as low as the mid 50s.

I was terrified to exercise. I put on a ton of weight. I went through serious depression. But in the midst of it all, I got married and gained the most amazing support system anyone could ever have.

Fast forward a few more years. I was put on liquid oxygen which works so much better for me. I am on high flow, between 6 and 12 depending on what I am doing. And now, 11 years later, I lost most of the weight I gained. I am healthier and happier than I’ve ever been. Because the liquid oxygen works so well for me, every day I am able to walk on the treadmill for over an hour and take hikes to walk my dog.

Exercise is what keeps me going mentally and physically. I am also on sirolimus (the only approved treatment for LAM). Five years now and it keeps me fairly stable. I wish I would have been given the option to start taking it years ago.

I have the most amazing group of friends from all over the country who make up a fantastic support system for both me and my husband. I don’t know how we could have ever come this far without them. I have learned how wonderful people can be.

When you get the diagnosis, it’s okay to be sad. It’s okay to mourn the life you had. But don’t let it ruin your new life. Don’t let LAM win.

Keep your mind and your body healthy. Don’t do like I did. I let it control me for years. I regret that it took me so long to start fighting back. But no matter how long it takes, you can fight back.

I got my inspiration to get on that treadmill from one of our dearly loved Lammie sisters, Marla, and I am so thankful. I hated that treadmill at first but now it’s my best friend! I am able to do more than anyone thought I would and I am determined to keep getting myself stronger and stronger so that when the time comes for my double lung transplant, I will get through the surgery and recover as fast as I can. I’ve got this!

My biggest piece of advice: stay positive. I know how hard that is to do. I do have my moments. It’s only natural but I refuse to stay in that dark place. Life looks so much different in the light.

About Dina

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