Oxygen Doesn’t Mean the Adventure is Over

By Carol Avery

September 16 is ILD Awareness Day, and if there is one thing I want people to know about living with interstitial lung disease and being dependent on oxygen, it is this:

Your life may change, but it does not have to stop.

I am not going to tell you that this is easy. It’s hard. Very hard.

Sometimes I feel like I can’t deal with what is going on anymore. It hurts. There are treatments that are no longer open to me because of my age, including transplant. My body has changed. I can’t do many of the things I used to do.

But I have made a decision. I am going to keep traveling as long as I can. And I am going to keep taking pictures, because those things are part of who I am.

Before Scleroderma and ILD, There Was Adventure

I was living in Detroit when I met Kimi at a bar. She was completing her medical training, and when she was transferred to Denver, I made a big decision. After 18 and a half years at GM, I walked away from my job and moved to Denver to be with her. Colorado turned out to be the perfect place for adventure.

We did multi-day fundraising rides for causes like Children’s Hospital, cystic fibrosis, Craig Hospital, and multiple sclerosis. We would ride Friday through Monday in the mountains, headed out in a different direction every day.

That was what we did in the summer. And let me tell you, those were some mean rides! They were tough. Really tough. But I fought through.

Photography was another passion of mine. Back in my 20s, I took some photography classes at community college in Michigan. I learned on an old Minolta film camera. I would get a good picture every once in a while!

Later in life, when Kimi and I could afford better equipment, I started taking photography more seriously. I read books. I practiced. And mostly, I just took a lot of pictures. In 2008, I got my Canon Rebel. Our first big photography trip was to the Galápagos Islands. After that, Kimi found friends who led photography tours, and we went to Costa Rica. Then we just kept going, through Central and South America, Africa, Asia, the Pacific, and across the U.S., from Costa Rica and Oregon to Iceland, South Africa, Botswana, Brazil, India, and beyond. I have been lucky enough to see some incredible things.

I love Ecuador and all of its birds. I have photographed the Cock-of-the-Rock and so many other incredible species. I loved seeing the gorillas in Rwanda. And Madagascar? I love the lemurs so much that I joke that I want to live on the island with them!

Photography takes me somewhere else. As long as I am behind that camera, I am in la-la land. I love being out there with wildlife. In 2017, Kimi and I were on Easter Island when my legs started swelling. At first, we thought maybe it was from all the salt, or maybe the margaritas! But when we got home, things got worse. While trying to figure out the cause of my leg swelling, I woke up one day with tinnitus, dizzy and unable to hear out of my left ear.

After seeing a number of doctors (internal medicine, cardiology, otolaryngology, interventional radiology), Kimi was able to get me in to see Dr. Aryeh Fischer, a leading rheumatologist and scleroderma doctor in our region at the time. He thought I had a connective tissue disease but wasn't sure which one because my symptoms were atypical, the blood work didn’t point in one direction. There is lots of overlap amongst these diseases.

After more tests, blood work, and a Chest CT showing interstitial lung disease, I was diagnosed with a systemic autoimmune disease favoring systemic sclerosis in March 2018. I was enrolled in the Scleroderma Lung Study III clinical trial in May 2018, however, I was not tolerating the study drugs. My GI tract was now involved, my exertional breathlessness and lung function continued to decline and I started having arthralgias, muscle stiffness and skin thickening.

In October of 2018, Dr. Fischer called after a routine visit and sent me to the ER because the combination of increasing blood pressure and abnormal blood work made him suspect that I was going into scleroderma renal crisis. They put me on the medications for renal crisis but I could only watch as my kidney function declined so badly that I had to have dialysis. I spent three weeks in the hospital and when I left, my kidney function was slowly improving but I was severely weak and had to have a feeding tube in my stomach for nutrition.

I was wheelchair-bound. I had gone from traveling the world and riding through the mountains of Colorado to struggling to take steps. I didn’t want to live my life in a chair. But getting back was harder than anything I had ever done.

Kimi made me fight in the beginning. I tried walking on the treadmill. She got me a recumbent trike so I could get back outside and ride. Today, I have a NuStep, although I don’t use it as much as I should!

I also started learning everything I could about scleroderma. Kimi brought me to support groups, and we attended education conferences. At a conference in July of 2019, I heard a message that really stayed with me. It was about being unstoppable. It was time to let go of the anger and help myself. Slowly, I started fighting my way back. And in August of 2019, I walked from my car into a support group meeting. Everyone cried right along with me!

Learning to Live with Supplemental Oxygen

Today, I need supplemental oxygen. At first, I had a smaller, lighter portable concentrator (POC) that went from pulsed levels 1 to 3. It was easier to carry, and for a while, that was enough for me. Now my oxygen needs have increased, and I use a ROVE 6 POC that goes up to level 6. It is bigger. It is heavier. And it has changed the way I move through the world. I can’t walk as far as I used to. I have to think about my equipment. I have to think about batteries. I have to monitor my oxygen levels.

But thanks to Kimi, I still get out into the world.

Traveling With Oxygen Takes Planning. But it Can Be Done!

When we travel, Kimi does a lot of work in advance. There is a list of FAA-approved portable oxygen concentrators (POC) but it is not always updated with the latest models. Before you purchase a POC, make sure it has the manufacture labeling of FAA-approval. Every airline has different paperwork and requirements. It is not always easy to find the necessary paperwork and forms on their websites so use the search function or call the airline.

For example, on one airline you just notify the airline and let them know you have a FAA-approved portable oxygen concentrator and enough batteries for 150% of the flight time. For another airline, you have to fill out a form with flight details, POC make and model information, how many batteries you have, and send it to a third party to get approval. Other airlines require the completion of a MEDIF (medical information form) and yet other airlines require the completion of a MEDIF and a Medical Report/Certificate from your physician stating that you are fit to fly.

It is not uncommon for the airline to require that the Medical Report/Certificate is dated within 10 days of the flight date. The MEDIF might need to be submitted no less than 48 hours and no more than 7 days prior to the departure date. It is also not uncommon for international airlines to ask for a physician stamp. US physicians do not have medical stamps so make sure your physician includes their medical license number. It is also recommended to have any Medical Report/Certificate printed on hospital or medical office letterhead. I make sure I have printed copies of the required paperwork. I travel with printed prescriptions and keep my medications in their original prescription bottles.

The airlines require having enough battery power for at least 150% of the maximum flight duration including layovers and ground time. We take extra batteries. A lot of extra batteries. Battery life depends on the pulsed oxygen setting. The higher my oxygen setting, the faster the batteries are used. The batteries are lithium-ion so they must be carried on and cannot be in your checked baggage. There can also be restrictions on the size or watt-hours (Wh) of the batteries allowed so again check with the airlines.

The batteries themselves are heavy, so traveling with enough power is a challenge. Also don't forget to bring your charger! One time I forgot to bring it and Kimi had to fly back home to get it before our international flight took off because it's not something that you can purchase at a local store. On some airplanes, I have been able to plug in my concentrator but you can't always rely on this option as some planes don't have plugs for each seat and some might not be able to charge medical devices. Whenever possible, I plug in my POC to charge the battery while in use. I also bring a separate external battery charger to recharge the extra batteries.

You really have to think through every detail. And even when you do everything right, things can still go wrong. Once, I was denied boarding on a plane in India. We had done our research. We had followed the requirements. We had flown all the way there with the same equipment. But the airline manager wanted additional documentation. “We need something stamped,” they told us. Kimi was trying to explain that we had the paperwork we were supposed to have. And Kimi is a doctor! But sometimes you just have to keep advocating for yourself. Kimi kept fighting for me, and we got on the next plane.

Another time, my POC broke on the first day of a week-long trip. I had to call my oxygen company to arrange for them to provide another one that I could use until I returned home. You can never be too prepared.

You Have to Let People Help You

I have had to accept that I can’t do everything the way I used to. I travel with smaller tour groups now because I don’t want my needs to interfere with someone else’s experience. I can’t walk super far anymore, and that can be difficult because photography often requires getting out into nature. Sometimes I have to find another way.

In 2019, when I was in Ecuador, people worked incredibly hard to carry me and my wheelchair so I could be included. In 2022, Rwanda was very difficult. But people helped me there, too. They helped carry me up the mountain because I wanted to see the golden monkeys and chimpanzees.

Accepting help does not mean giving up. Sometimes accepting help is exactly what allows you to keep going.

I Am Still Behind the Camera

I still love photography. I still love being around wildlife. When I am sitting and getting ready to take photographs, I lower my oxygen as much as I safely can according to my needs and monitor my saturation levels carefully. I use both finger and ear pulse monitors.

I am always paying attention. And sometimes, when we are photographing animals, the sound of my concentrator can be a challenge. I have to think creatively about how to capture the shot without disturbing the wildlife.

My oxygen needs are something I have to consider everywhere I go. I would love to live higher up in the mountains, but oxygen makes that difficult. And I know that someday soon I will need an even more powerful machine. That could mean more challenges for my photography. But I am not there yet. And until I am, I am going to keep going.

My Advice: Plan, Prepare, GO!

If you are living with ILD and use supplemental oxygen, my biggest advice is to get organized. Find someone who can help you with the planning if you need it.

Before you travel:

·      Get documentation from your doctor saying you are okay to travel.

·      Contact the airline well in advance.

·      Understand exactly what their requirements are for traveling with oxygen.

·      Bring extra batteries. Know how long your batteries will last at your prescribed oxygen setting.

·      Have a backup plan.

·      Double-check everything.

·      For International Travel, bring the country specific plug adapter, printed prescriptions, and keep your medications in their original prescription bottles.

And then double-check it again. No matter how well you research and plan, you should always be prepared for the unexpected. Go above and beyond. Be ready.

I know that ILD and needing oxygen can be frightening. I know what it feels like when your body changes and things you used to do without thinking suddenly become difficult. I know what it feels like to lose some of your independence. There are days when this is hard. Really hard. I don’t always feel positive about it, and I don’t have some secret for accepting everything that has happened to me. I still get frustrated and ANGRY.

But I also know what it feels like to sit behind my camera and completely forget about everything else for a little while. I know what it feels like to see an incredible animal through my lens or to stand somewhere I never thought I would get to see. Those moments still matter to me.

My life is different now. There is no getting around that. Traveling is harder. The equipment is heavier. This year, I am going to Kenya and Ecuador. Next year is Antarctica and Uganda. I’m going to keep taking pictures for as long as I can. I’m going to keep traveling for as long as I can.

If you are sitting at home wondering whether needing oxygen means you have to give up something you love, I hope my story gives you a little encouragement. It may not look the way it used to. It may take more planning. You may need more help.

But if there is something you still want to do, maybe don’t decide you can’t before you find out what it would take to make it happen.

If you are afraid of travel, just do it anyway. With some planning, you can still get out and enjoy the world.

That’s what I’m going to keep trying to do.

About Carol:

Carol is an adventurer, photographer, and proud U.S. Army veteran who continues to find ways to live life fully while navigating scleroderma and ILD. She loves wildlife photography, spending time with her cats, and getting out into the Colorado mountains whenever she can.

September is Pulmonary Fibrosis Awareness Month, with ILD Day on September 16. This month, we’re sharing stories like Carol’s to help others recognize the disease, understand the patient experience, and find hope in the journeys of those who are facing it head on.