Inside the Enabled Mindset with Sarah: LAM (lymphangioleiomyomatosis)

Inside the Enabled Mindset with Sarah: LAM (lymphangioleiomyomatosis)
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First off, can you tell us a little bit about yourself, and what made you fall in love with travel?

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I am 37 years old. I have lived almost my entire life in New York City. I am married to my best friend, Justin. And I have a progressive, incurable lung disease.

I’ve always enjoyed traveling, but really fell in love with it with Justin. One of the first big trips we took together was to Germany. Before we left, we threw ourselves into learning the language so once there we could better immerse ourselves in the culture. Even though it was below freezing and we hadn’t brought proper boots so our feet were constantly wet and cold, we had an incredible time. That trip really showed us how much we loved seeing new things in the world and doing so together.

Travel has also helped me cope with my disease, so I’ve come to love it even more. In 2016, Justin and I quit our jobs to spend 13 months living out of suitcases. We visited places all across the world in Europe, Asia, Australia, and New Zealand. It was the best year of our lives.

What is the condition that you have?

I have a very rare, fatal lung disease called lymphangioleiomyomatosis (more easily known as LAM). LAM occurs predominantly in women of child-bearing age (I was 30 years old at diagnosis) and progresses at varying rates. There are only about 3,000 diagnosed women with LAM throughout the world, although the estimated actual number of people with LAM is 200,000-300,000. On the outside, I look pretty healthy. But in fact, my lungs are covered in cysts. This makes it hard for me to breathe with even minimal exertion. Things like climbing one flight of stairs, walking too fast, walking up a small incline, or talking too much for too long can leave me struggling for air. I also suffer from extreme fatigue and chest pain. Many women with LAM have lung collapses, but thankfully I haven’t had any. Some women with LAM must use supplemental oxygen 24/7 to help them breathe, but right now I only use it when I exercise and when I fly (more on that later). I take medication daily that helps stop the disease from getting worse. But sadly, it’s not a cure. And over time, it stops working. But I am grateful. Grateful for every breath and every day I get to be with the people I love and see incredible things in the world.

You can learn more on the LAM Foundation’s website.

When were you diagnosed, and how did you deal with this at the time?

I was diagnosed with LAM in 2010. I was 30 years old and Justin and I had gotten married just six months earlier. Back then, if you Googled my disease, it said the median life expectancy was eight years. My doctor advised that I not get pregnant since progression has been linked to hormones (specifically estrogen). It was devastating. It took several years to start feeling like myself again and not think about my disease all the time.

 

Our love of travel turned out to be the best coping mechanism. We actually had a trip to Spain scheduled just a few months after my diagnosis. We seriously thought about cancelling. I was still reeling from the diagnosis. I had only recently started taking a new medication which had some annoying side effects. I was terrified my lungs would collapse at any minute. And to top it all off, flying would require using a portable oxygen concentrator. But my doctor really urged us to go – to keep living our lives – and helped us figure everything out. It was the scariest but best thing I’ve ever done. For the first time in months we actually had real fun. We were able to go stretches at a time without being sad and afraid. Being in a foreign country required us to think about things other than ourselves and our pain like how to get un-lost driving around Valencia and how to order tapas in Barcelona.

inside the enabled mindset

In travel, we found a way to not necessarily escape our lives but to truly be happy living our lives. So after that, we made travel our top priority (even when we were working full-time).

How has this condition made travel more difficult for you?

The most annoying part of traveling with LAM is that I have to use a portable oxygen concentrator (POC) when I fly. Everyone’s oxygen saturation drops when they fly due to the cabin pressurization, but without supplemental oxygen, mine would drop to dangerously low levels. Flying with a medical device can be frustrating. There is paperwork to fill out and people ask a lot of questions and it usually gets tested separately at security. So we have to get to airports extra early.

LAM has also restricted how and where I can travel. We can’t be as spontaneous as we’d like since most airlines require a certain period of time to approve the device (this can be anywhere between two weeks and 48 hours). And some airlines that don’t allow POCs on board. We had the most trouble with this in Southeast Asia so couldn’t go to some places on our list last year.

Do you have to bring extra medications or supplies for travel? And are you able to get these while you travel?

For someone with a pretty serious disease, the medication I travel with is pretty light. I actually only have two prescriptions specifically for my LAM. But yes, I always travel with extra because they are difficult to get just anywhere. And as I mentioned above, I always travel with my portable oxygen concentrator in addition to extra batteries and cannulas (hoses).

Do you use a special kind of travel insurance due to your condition?

I need travel insurance that covers pre-existing conditions (not all do). You can read my tips for finding a good policy here.

What do you do in case of emergency while traveling, if this has ever happened?

I’ve luckily never had an emergency related to my disease while traveling. I’m almost always with my husband and trust that we’ll be able to manage any situation that comes up. My doctor is also amazing and easy to reach by phone, text, or email anytime. Knowing she’s there for me in that way gives me immense comfort too.

Are there any other ways you have to change how you travel due to your condition, compared to someone who is fully healthy?

 

I have to take it a little easier than a healthy 37-year old would. I am exhausted after most flights (even pretty short ones) so instead of hitting the ground running, I try to nap upon arrival. If I have a really big day with a lot of sightseeing and walking, there’s a good chance I’ll be beat and need to take it easy the next day.

We also try to avoid destinations that are at high altitude (I would likely have to use supplemental oxygen 24/7, which is no fun for me) and those with really bad air pollution. So while I would love to get to Machu Picchu or the Great Wall of China, they’re probably not in the cards.

But on the positive side, we’ve learned to spend longer periods of time in the places we visit. This has allowed us to get to know places so much better and has made for much more satisfying travel experiences.

You told me you raise awareness for your disease. Can you tell us a little bit more about that, including any links you have to spread the word?

LAM disease

When Justin and I planned our year of travel, we knew we wanted to make LAM a part of it. During our trip, I worked with the LAM Foundation as their Global LAM Liaison to raise awareness and broaden the connections among the global LAM community to help advance the search for a cure. I also really wanted to inspire other women with LAM to not let this disease get in the way of living their lives and accomplishing their dreams.

Over 13 months, we met members of the LAM community in seven countries around the world. We made great friendships with other women with LAM and their families. We learned about international research from doctors and researchers. And I had the great honor of speaking at the annual LAM conference in Tokyo, Japan.

We documented our journey on our blog Travel Breathe Repeat. We hope it serves as a resource to anyone looking to travel as well as inspiration to those who may have an illness or disability.

You can read about our LAM meet-ups on Travel Breathe Repeat here!

You can learn more about what it’s like living with LAM and meet some of the inspirational women with this disease on this page we created for Worldwide LAM Awareness Month!

How has travel helped you with your condition?

inside the enabled mindset

Travel has made me healthier, both physically and psychologically. Exercise is really important for people with LAM and traveling has allowed me to get much more activity every day. Walking to explore is my favorite thing to do while traveling. I am also more likely to put myself in situations where I want to challenge myself physically while traveling – like hiking in New Zealand. It’s much easier for me to say no to a challenge at home than in a gorgeous new land! And as I mentioned earlier, travel has really helped get myself outside my own sadness and fear. Having any illness, but especially a rare disease like LAM, can be intensely isolating. I think it’s important for anyone to try and expand their own worldview, but I believe it can be therapeutic for people with chronic illnesses.

Do you have any advice for someone with a similar condition to yours who wishes to travel?

Work with your support network to make it happen! If it’s your first time traveling, start small. Do a lot of research in advance (on supplemental oxygen, climate, accessible destinations, etc.) so that you’re comfortable when you leave. Most importantly, trust in yourself and what you can accomplish!

Any final thoughts?

Don’t wait until the worst happens to realize you could be happier in life. Take time to figure out what makes you happy – be it traveling or something else – and to do everything you can to pursue it. It’s hard and scary, but it’s worth it.

By Sarah – Travel Breathe Repeat

Danie

Danie is a lovable and insane digital nomad of sorts. If you ever wondered what's a nomad, you've come to the right place. She enjoys oversharing, telling every detail of her life, and chilling on the beach, among other things. Danie is rather odd, and she likes it that way. Be sure to subscribe to hear more of her ramblings, and find out when Danie finally gets to fulfill her biggest dream: cuddling a platypus.

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