Have You Traveled Alone With PH?

[Roger Bliss]

Congrats on your win!! Gonna have to reward yourself with something. Always good to hear someone making accomplishments.

[jen-cueva]

LOL, thanks, @wheeldog. Yeah, I should treat myself, but I bet if I suggest that to Manny, he will say we bought plane tickets and dinner when I returned home. That meant I did treat myself and did no cooking for the first night. Hehe.

Thanks for your support. Despite PH and other health concerns, we need to remind others that we can accomplish little feats or larger.

[Cathy Brown]

I will be flying with oxygen for the first time this summer and I will be sort of alone. My 12-year-old son will be with me, but I’m not sure how much help he’ll be. I am super nervous, so I’ll be looking forward to reading your column. How many liters of oxygen are you on? I am worried because I’ll be renting a concentrator and the one place I talked to said the highest their rentals go is 2 liters. When I was at high altitudes last summer, I seemed to need 3-4 liters.

[jen-cueva]

Hi @catbrown, I know how nervous you must be. My mom thought I might cancel before I left. But I didn’t and made it there and back home safely. Will yours be a direct flight, or will you have to change planes? That, for me, was my biggest hurdle by far.

I’m on 4 liters but used 3-4 on the plane because I was fearful of running out of battery, although I had extra backup. Can you contact another provider and see if they have a different type of POC that goes higher than 2 liters?

I know that you are nervous as the date approaches. My anxiety was extremely high, so I took my Ativan on the morning of each flight. It helped mellow me a tad. But, I prefer flying with Manny to be sure that I will be safe. But I will probably do it again eventually, not anytime soon, LOL.

[Debbie Moore]

I would like to know more about traveling by plane.  Also, what’s required when going to higher elevations by car?  Is this something the pulmonologist would be able to tell me what to do?  I’m on 4L,; my POC only goes to 5L – will I have to do something else?  So many questions, but I need answers because breathing is limiting my travel. Thanks for any advice.

[Colleen]

@debbie yes, definitely speak to your pulmonologist regarding both flying and driving to higher elevations. Also check your airline for their oxygen rules and guidelines. Be sure to bring a letter from your doctor and any medical documentation that the airline might ask for. This is probably a common question your doctor is asked and therefore easy for them to answer.

[jen-cueva]

Hi @debbie, yes, please ask your PH team about their thoughts on your oxygen requirements while traveling. They would be your best source since they know your body. I did travel by both plane and car recently in higher elevations.

As@kygon suggests, talk to the special assistance team on your airline, preferably a few weeks prior. They will ask you questions about wheelchair assistance needed, a porter to push you through, which is huge at large airports. My flight landed at one gate in Dallas, and I flew out two elevators and two tram rides later. I would never have done that without their help. They also ask about oxygen needs, if you have plenty of batteries( I always carry an extra one for my POC), etc. When Manny bought my ticket, he made notes online that I would need wheelchair assistance, as I have my own and POC. The special needs department called me a week or two out from the travel date.

Upon return, I also learned from American Airlines that if you ask ahead of time to be seated close to the front, they will try and get you as close as possible if seats are available. Also, tell them you can’t walk far and need to be near a restroom if that’s important. Some smaller planes only have one at the back, one of mine, so I held it through that 4-hour flight. They also have “aisle chairs” that can offer assistance. When I returned home with questions and concerns, the guy I talked to tell them the worst-case scenario if having a bad PH day. This is a column topic in the works but didn’t finish it yet. When are you traveling again?

By car, we had a car inverter and charged my POC while driving. Manny would try and do higher elevations at night, so I would hopefully sleep through it. But as you know, this is often not feasible. So, at times in the highest peaks, I had to increase my oxygen and take meds to help me relax when I started having breathing difficulties. It wasn’t bad as it had been in the past since we knew I had to wear it through the trip this time.

Most airlines no longer require a doctor’s note for your oxygen, but I usually have a statement on me if anyone asks since it is a prescribed treatment.

Hopefully, you will feel better about traveling with Colleen, Ky, and these tips.

[Debbie Moore]

Thanks Colleen.  I will do that.

[ky]

Debbie Moore, we just went to Cancun with my husband’s Inogen, we had to call TSA ahead of time and get it approved along with how many batteries we were taking with us (we have 2 four hour extension batteries) and they just check all those out when you check in. We brought the converter that also let us run it directly plugged in during the night as well, but because we were at sea level, and we live at 5000 ft above sea level, my husband only needed the oxygen when we were walking around and sightseeing. The airline will tell you the cabin is pressurized to 8000 ft but my husband’s smart watch has a elevation tracker and it only hit that a few times for less than 20 min, it was more like 5000 to 6000 ft pressure most of the flight. Make sure to call the airline your traveling with to request a wheelchair at least a day in advance and follow up with the airline before you fly back home, the Cancun airport was so big and with the humidity .. I think Bryan would have passed out without the assistance.. Oh and it makes the lines a breeze (bonus)

With his oxygen on my husband had no issues during flight. When driving we have gone through some beautiful mountain roads at quite high elevations and he puts on his oxygen anytime we get above 8000 ft but we don’t linger at those high elevations .. just drive through..

I think a lot of it has to do with your current location and acclimations so definitely talk to your doctors before planning any trips. Also remember going to lower elevation coming home can be an adjustment as well … my husband was able to skip and JOG in Death Valley… for a short distance, and he hiked like normal for the first time in years… but coming back home was absolutely horrible for over a month.

 

[Debbie Moore]

Thanks ky!  I’ll be doing the opposite  – going from low elevation to high and I’m already at 4L 24/7.  Great advice about the wheelchair, the airport and the return.  Great advice about everything.  Thanks so much.

[jen-cueva]

Hi @kygon, it sounds like y’all had a lovely vacation in Cancun. I also use an Inogen and traveled with it alone for the first time last month. But, I’ve traveled several times by plane and car with my hubby, Manny, and it’s a lifesaver!

The wheelchair certainly does help, even for those who usually walk more than me. But some of those airports are huge, and traveling already drains you.

Wow, Brian was jogging and hiking; that’s incredible! Where do you and your family live, again, @kygon? I’m not a huge fan of the desert. My hubby drove us to Glamis dunes on Saturday and back, but he wanted to see it. The dirt was gritty in my teeth from the wind blowing. It was 20 degrees hotter, he had never seen it, and now he has. But then again, I prefer the San Diego beach areas and temps, a tad spoiled since relocating here from Texas.

Thanks for your contributions here to Debbie and on other topics. Many will benefit from reading. We’re happy that you are here and sharing your experiences.

[Karen Endelman]

I started searching for forums regarding travel because of your response on a different forum – thank you, so much! I am fortunate, so far. I am in pretty good health and am successfully managing my PAH. I had invested in a portable oxygen concentrator last year after I had an operation and it took about a month for my BP and O2 levels to get back to normal. Anesthesia and PAH do not get along well. I haven’t had to use the inogen unit since my recovery. I’m not even sure if I need to travel with it or not. There is a mountain nearby and my pulmonologist suggested that I take a drive up and see how I would feel at that elevation. I thought that was a good idea and will be trying that soon.

I’m pretty sure that mostly I am nervous about traveling alone. My first trip will be a short one to visit my brother and hopefully, that will help to ease my anxieties. There are trips I’d been putting off until retirement but, one thing that a serious diagnosis will teach you is to not put off doing the things that bring you joy. Thanks for listening!

[jen-cueva]

Aww, that’s right, @Karen Endelman, anesthesia and PH are not the best friends, unfortunately!

I LOVE the idea of traveling up to a higher elevation to see when you begin, if you do, the effects of the altitude. Also, I bet you’ll be just fine to travel alone.

Last year, I did that for the first time alone. Picture me and my wheelchair, POC, and backpack with extra batteries and medications. I had to change plans in Dallas, and the layover was delayed. So, it was quite an interesting day, starting way too early for me. But I was going to spend the year anniversary of losing my late Stepdad with my mom. Also, I spent time with my dad; he lives about 30 minutes from where my mom was.

It was certainly worth it. But now, I only schedule straight flights and hope to be 4 hours or less. I hate sitting still and begin to have increased pain,