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    • #31428
      Cathy Brown

      We are traveling out West in a couple of weeks and I’m worried about altitude. I had a HAST test at my doctor’s office and it showed no changes in my oyxgen requirement at altitude–at 2 liters I stayed at 98% through the whole test. But the test results seemed almost too good to be true. We will be staying at a place that’s about 4,000 feet elevation but on the drive will go as high as 8,600 feet. I’ll have tanks in the car for traveling. Does anyone know, if I start to have problems, will increasing the oxygen flow take care of it? Or are there other PH issues triggered by altitude other than oxygen needs? Not sure if I’m making any sense. Thanks!

    • #31431
      Susi Steppins

      Hi @catbrown

      I live outside of Denver and it is 6100 feet where I live.

      I often travel into the local mountains and will go as high as 8600 feet.

      For short periods of time there is no noticeable difference unless you exert yourself.

      I was up at 8600 a few weeks ago and when I walked around it became too much for me and my husband had to get out the wheelchair.

      But if I was sitting still there was no change to my oxygen.

      Let me know if you have any more questions.

      Have a great trip!

      • #31432
        Cathy Brown

        Thank you! This makes me feel a lot less nervous!

        • #31865
          john huebner

          Hi Cathy, I live in Park City, Utah, and my home is at 6,700 ft. elevation.  Normally I’m on 3 Liters continuous.  If I want to go for a walk I use a cannister set at 8 Liters.  To exercise at home I connect two oxygen concentrators for a total of 10 Liters.  So, in my opinion, it’s a matter of adjusting the flow as needed…so you should have no problem.  All the best, John Huebner


      • #32207
        John Caraway

        Thanx for your post, I’m traveling and possibly moving to 4500 foot elevation and was worried. I only use 2litres of supplement when I work out and sleep and lately thanks to Uptravi my oxygen levels increase during my workout/ with supplement.

        • #32210
          Colleen Steele

          @jecaraway62 best of luck and safe travels. If you haven’t already, make sure to reach out to your doctor before traveling and have a plan of where along the way you can access more oxygen if you need it. Keep us updated on how things are going for you. Where are you headed?

    • #31442
      Jen Cueva

      Hi @catbrown, being that you had the HAST test would make me more comfortable. As @s-steppins mentions, she tolerates higher elevations with no problem. Each of our bodies is different.

      For me, I tend to had issues with anything over 3000+ feet. This was several years ago. Because I live in Texas now, I have not yet tested again for altitudes.

      But back then, as we went up, I started feeling lightheaded, dizzy and had massive headaches. My breathing was more labored. I put on my oxygen, which helped the symptoms as we drove back down to a lower elevation. I was fatigued more than usual a day or two later.

      I suggest watching for signs of altitude sickness. Here is a link to some more information on that.
      Altitude sickness

      I hope that you enjoy your trip. You got this! I look forward to hearing more about it.

    • #31487
      Jill Upshaw

      I find that I also get dizzy and get a headache so I plan for it. I do go into the mountains but it is really not that high. I don’t make any quick changes as far as standing, sitting, or walking. I do things slow and deliberate. I don’t know if you have a chair or a walker but I do have a walker. I walk fine and I don’t need it BUT I sometimes use it to carry my oxygen and anything else that has weight. It also has a seat where I can sit down instantly if needed if I get too weak, dizzy or SOB. Enjoy your trip. I think you will be fine since you are thinking it through and planning accordingly. I would love to take a trip for at least a week but I am just not there yet.

    • #31716
      Cathy Brown

      We got back from our trip last week. It turns out the HAST test was not accurate. Two liters was not enough at elevation and when we were briefly around 8000 feet in Wyoming, it was definitely uncomfortable and scary. What made matters worse was that I was afraid I might not have enough oxygen to get to our destination that night, so I was afraid to crank it up too much. But we made it to Idaho Falls, which is around 4,700 feet. I seemed to need about 3 liters there just for sitting around the hotel room. The way back was better because we made sure I had plenty of oxygen and took a slightly longer but lower route. It was a pain stopping at Lincare every day for refills, but I got to do a couple of easy nature walks at Yellowstone and Theodore Roosevelt National Park with my husband and son. I am so thankful for supplemental oxygen!

    • #31726
      Colleen Steele

      Oh my gosh @catbrown, you went through an o2 users nightmare, but it sounds like you handled it as best you could. I imagine stopping at Lincare every day was a pain, but as you mentioned, thank God for them and the supplemental oxygen they provide. Despite this serious challenge, did you have a nice time? What was your favorite moment?

    • #31735
      Jen Cueva

      Oh no, @catbrown, I am so sorry to hear about the oxygen situation. That must have been scary and frustrating, to say the least. And stopping at Lincare each day, such a hassle, but grateful that they were near and you could enjoy those short walks with your family.

      I am concerned that your test was incorrect. Those tests are great as a guide, but when we are in higher elevations that our bodies are not acclimated often, this may be a bit off. Did you adjust better after being in the higher elevations after a few days?

      Was Lincare unable to offer you extra tanks to have at the hotels? I know once I was at my dad’s out of town helping him take care of things after losing my stepmother. I had to go to the local medical supply and fill my oxygen tanks twice while there. Unfortunately, my DME company was nowhere near, and he lives in a small town.

      It does sound exhausted and scary with the feeling that you could not breathe and those elevation complications. But, I do hope that you enjoyed your time together with your son and your husband.

      I know for me, anything over about 300-3500 feet up, I start seeing symptoms. I use 4 liters continuous at the moment, so that should be good for me for a bit higher, I would hope.

      One of my oxygen tanks had leaked out slowly, so I ran out sooner than expected. Thankful that my dad knew the owner of the pharmacy and medical supply store where we dropped them off, and they would fill it with one of their machines, and we picked it up later., LOL

      Now, I have Apria; like Lincaire, they are all over, so I have tanks delivered to my destination if needed and my POC.

      What do you think you would do next time besides requesting extra backup tanks? Did you inform your PH team about this? What was their response?

      I am sending you extra big hugs and hope that you are resting and recovering from that trip.

    • #31737
      Cathy Brown

      I haven’t talked to my PH team about this since we got back. Once we got settled in each night, I was ok because we had packed along the big home concentrator. Unfortunately, it doesn’t run on batteries so we couldn’t use it in the car. The biggest problem I had was trying to calculate how many tanks we would need for our Saturday-Sunday driving because Lincare wasn’t open then. I underestimated a little bit.

      • #31770
        Jen Cueva

        Hi @catbrown, I am grateful to know that you did have your home concentrator at night. That would be a great way to fill the smaller tanks as you use the concentrator. Do you not have a home full system with yours?

        Of course, traveling, you probably needed those larger tanks as you had excursions planned during the day.

        I am sorry that you had such a frustrating and scary time trying to get the oxygen and enough for your trip over the weekend.

        I would certainly let my PH team know about the struggles that you had after your HAST test. I now wonder how accurate they think those tests are.

        Nothing like worrying if you have enough oxygen to breathe while traveling with the family. I am so sorry that this happened to you.

    • #31783
      Brooks White

      I found yr 2L emergency at elevation interesting. My wife has PLCH with some PH. We knew nothing about HAST test (apparently only at Bellevue Hosp in NYC can it be offered). She did 6 mo walk and was OK to fly with POC. She did not need to use POC while walking at JFK before flying 9-10 hrs to Prague non-stop. She was on POC at 2L the entire flight & felt fine. When she got off plane at Prague she could not walk 50 ft w/o oxygen. It was chronic thereafter & went to Hosp in Prague and were no issues (e.g., clot; pneumothorax) & was cleared to fly. She has had moderate to severe PH, but PLCH has been stable. She was on POC again 2L on flight back. Subsequently learned from FAA that in 2011 they did a study based only on 5 hr flight and determined that seniors & those with heart or lung issues could be assymptomatically compromised during flight with pulmonary impact after flight. There were no other issues beyond flight that caused the change in my wife’s condition and it seems that only being at 2L was not enough, but she was unaware of it. FAA wanted to get more funding to do more study, particularly for flights more than 5 hrs. She no longer flies or goes to altitude (even 1500-2K). Surprised you had HAST in doctors office, and that it proved unreliable. Thought we might at sometime see it would be representative of real conditions. Hope you are well & tks for the post. Be nice if FAA finished its study.

      • #31794
        Jen Cueva

        Hi @phxplch, I am sorry to hear about the experience with your wife. I fly with my POC at 4 liters and still have some issues while flying. It certainly is scary, so high in an airplane, and not sure how much longer you can struggle.

        This last flight a few weeks back was a 3-hour flight from San Diego. I started feeling a tightness in my chest and palpitations. I also had a horrible headache. So, I would guess that it sounds like your wife would require more than 2 liters.

        I also was told not to fly more than about 4 hours at one time. This would make it difficult to travel to places that I may want to visit one day. Even Hawaii is like a 10-hour flight. We figured that maybe flying to California or somewhere staying one night then continuing the following day if we make that trip.

        As you mention about your wife, I start having elevations issues about 3000-3500 feet up. Also, it may depend on what our body is dealing with at the time, and so many other things come into play.

        What PH treatments is she on? How long has she been on these PH treatments?

    • #31788
      Cathy Brown

      I don’t think my doctor’s office does the HAST test often. I was the first one in 18 months (because of the pandemic) so I wonder if they just don’t have enough experience with it. It’s  not a big PH center.

      • #31793
        Jen Cueva

        Hi @catbrown, that makes it even that much more important to let them know about your experience. Hopefully, others will not have to experience the issues and scared feelings you had to deal with while on vacation.

        When I had elevation issues in the high desert of California, we lived near there at the time, so thankfully, we could go back home, and I could get more oxygen and rest. I did have small tanks with us that was running out quickly.

    • #31796
      Brooks White

      Jen yr feedback was very interesting. Given yr exp at 4L on shorter flight not sure if may have prevented what my wife had experienced although had we known at the time we would have increased to 3 or 4. Yr doc telling you not to fly more than 4 hrs shows he is conscious of the problem which in our experience is not common among pulmonary docs unless they specifically focus on PH. There needs to be more info given to docs about this risk. My wife just is on oxygen therapy which is pretty much 24/7. She is WHO Group 5, maybe 3, so not many therapies are available and those that are have too little benefit. We started to consider Tyvaso, but the benefit seems very small even if she could get it. Seems like 22m over placebo with functional class 2-3, which is likely below her class. Trust you are checking yr oximeter when flying and adjusting L accordingly. Stay well.

      • #31810
        Jen Cueva

        Thank you @phxplch, I am sorry to hear that your wife’s pulmonary doctor is not as familiar with PH as an actual PH specialist at a PH center. Does that something available anywhere near you? Many can oversee her care and help the local pulmonary doctor to help if, especially if this is a distance away.

        Where are you located, again?

        It sounds like you are well versed and stay educated on upcoming treatments and those that are available.

        I know that several other new treatments are in the pipeline, and hopefully, one of those would be helpful.

        Yes, I do carry my pulse oximeter and check my oxygen often. I am grateful to have an excellent care team, including my PH doctor.

    • #31803
      Colleen Steele

      @catbrown if your facility isn’t a big PH center or at least have a PH specialist you might want to consider reaching out to one. Here is a link that could help you locate a specialist near you.

      Doctors Who Treat PH

    • #31811
      Brooks White

      Tks Jen & Colleen. My wife’s primary pulmonary doctor is for her PLCH. She has had a separate PH doc after the flight that caused a dramatic change in her PH. We are in NYC and it is not short of doctors. I do keep up on things (my wife thinks I could go to med school now). Being WHO 5 (or 3) and having her PH mostly driven by hypoxia from the flight rather than PLCH (which has remained fairly stable) is always one of the issues as is that there really aren’t truly effective treatments at this point, although research is moving more towards cause, rather than clinical symptomatic treatments.

    • #31824
      Jen Cueva

      Hi @phxplch, yes, you are in a great area for access to many specialists.

      My apologies if you mentioned this before. Did your wife develop PLCH first or PH? I can only imagine how difficult this is to manage. Is she on treatments for the PLCH?

      That is too funny that your wife thinks you could go to med school. After 16 years with my PH, my hubby is often the same. We certainly could not do it without such awesome supportive, and knowledgeable partners.

      Thank you for sharing, and know that you are appreciated more than you know.

    • #31825
      Brooks White

      Jen, My wife developed PLCH decades ago, from smoking. Initially she was treated with prednisone, which I think stablized her situation. She had no treatment since, as there are none (although for other forms of histiocytosis there are). She has exceeded all expectations (at least others- I never shared their pessimistic view). As your husband and you likely know, you take current cures or advances with a grain of salt, as time tends to prove them inadequate. My goal has always been to play te long game, hoping some real solutions will emerge over time, and that in the meantime “first do no harm.” You can develop PH as PLCH gets to be severe, but this really has not been the reason for the PH severity my wife experienced. My second rule is trust what the body is telling you, not necessarily what doctors think based on current clinical practice (usually when they don’t have an explanation). This is why getting feedback from other patients with similar symptoms is always useful. In short, it is not difficult for me to manage, but then again, it is my wife who is managing, so big deal.

      • #31835
        Jen Cueva

        Hi @phxplch, you are so humble. You and your wife are managing well. I know it takes teamwork, so kudos to you both.

        Yes, I was wondering if she was a smoker. I know that most are with PLCH. So, you answered that questions, thanks.

        Yes, we do need to do our own research and advocate for ourselves and our loved ones. Do no harm certainly is the goal.

        Hopefully, some clinical trials will soon be helpful for her without causing too many side effects. I get that concern.

        She is fortunate to have such a supportive spouse. Thanks for sharing as you said, we learn from each other’s experiences.

    • #31828
      Randolph Reynolds

      Cathy et.al.

      This is an interesting series of commentaries.  I can’t add any more to this discussion except that at 5500 feet where I live and the nature of my PAH (CTEPH or WHO 4) I use 4 liters per min flow when I am out but at home it is up to 6 because of the long tubing from my concentrator / compressor requires it.  Before I was diagnosed with this disease I made many trips to the North Rim of the Grand Canyon (8100 ft) and hiked down about half way to the river (Phantom Ranch).  Coming back up I had to stop about every fifty steps to catch my breath.  Sometimes there would be runners passing me on their way up and back across the canyon -21 miles one way.  I think back on that now and realize I was probably starting to experience the early stages of PAH.

      My goal now is to avoid stressing my right heart.  The disease continues to progress and my activities have been cut way back.  I think you are in good shape considering.  We just keep on pressing on.

      • #31836
        Jen Cueva

        Hi @ripple76; it does sound like your PH could have started back then. I know for me, the altitude affects me more than some.

        I know some here live in Colorado and other much higher elevations and do OK. I think that after time bodies adjust some. But we also must remember that our bodies are all different.

        Your elevation of 5500 feet, for example, is higher than my body tends to handle.

        Yes, the longer extension, we do most often need to increase for this. Thanks for this reminder, too.

        Your goal of not stressing your heart is so important. Yes, we do continue to push through no matter what.

        I am happy to see you back posting. I know you had a busy schedule with appointments this month. How are you handling the heat and being out more?

    • #31854
      Randolph Reynolds

      Hi Jen

      I had been concerned that my oxygen levels were low and I had to ‘hyperventilate’ to get them up to the mid 90% range.  Then I checked the humidifier mounted on my concentrator and it was cracked in two places allowing air to escape.  Now my O2 levels are back to what I was used to seeing.  I hope that  hadn’t made any difference in my overall PAH situation.  I do seem improved.  With the cooling weather the air should be more dense and that ought to help.

      Thanks for the response.

      • #31876
        Jen Cueva

        Hi, @ripple76, that is good that you figured that out. Those leaks certainly could have impacted your breathing difficulties. I am so happy to hear that you are feeling some improvements.

        Besides checking your oxygen stats, any tips for those who do not have a pulse oximeter like us?

        Yes, the cooler air certainly helps our breathing. I am waiting for that, too.

        These little things are often unnoticed, so I am grateful that you did find them. When I feel like my breathing is worsening, I follow my tube to my nasal cannula to check for any connection issues or leaks.

        Reminders like this are so important, especially with longer tubing, etc. Thank you for sharing.

        Next week, I hope to read that this improvement continues to stay with you. I hope that you get some cooler air and enjoy your weekend, friend.

    • #31908
      Susi Steppins

      Hello @catbrown and @jenc

      Well I made the trip to California and learned a lot about elevation and PH along the way.

      Like you @catbrown, I had some serious issues when I got into higher altitudes.

      I was not very smart in my decisions and we decided to go through the Rocky’s west through Utah.

      The elevation on the first day got to over 11,000 feet and I really regretted doing that almost immediately.

      I couldn’t breathe and even with my oxygen on 4 my levels wouldn’t go above mid 80’s.

      My heart was beating super fast and my poor husband couldn’t drive fast enough.

      We got to our destination in Utah which was 4700 feet and even then I felt sick for about 48 hours.

      Our final destination for our travels was Long Beach California and it took me getting a good nights sleep at 50 feet elevation to recover.

      It was a very difficult trip but I am glad I made it.

      We were gone for 10 days.

      We had booked hotel rooms going home the same way we went out, but changed them so that we could come in from the south through New Mexico instead.

      It took me about a week of being home to start feeling like my usual self again.

      Moral of the story?

      Don’t think you are invincible.

      It might come back to bite you! LOL

      • #31914
        Jen Cueva

        HI @s-steppins, I am happy that you could get back to your normal after such an experience. Like your husband, when I was having these elevations issues, Manny could not drive fast enough.

        I did feel bad for several days. I was not up there as long as you or as high. Eleven thousand feet is high! Like, you, my body does not do well with those high elevations.

        How high are you now in Colorado? I know you told me one time.

        Long Beach should have been a nice recovery spot before heading back. But this was a massive push on your body. Yes, we can push ourselves sometimes, but we often “pay to play,” as I say.

        Whew, what an adventure; I am sorry that you had to go through this on your trip.

    • #31920
      Cathy Brown

      Wow, @s-steppins, that’s really high! I thought going south through Utah might be the answer for us until I googled highest elevation on Interstate 70. No thank you! We are moving to Phoenix in December from upstate New York. My husband is going to navigate the lowest elevation route we can figure out, probably through New Mexico. I know we will hit some high spots, but hopefully not too high. It’s sad because there’s some beautiful scenery that we have to miss now.

    • #31925
      Colleen Steele

      @s-steppins and @catbrown I’ve known families whose doctors recommended they move away from high elevation locations, Utah being a big one. But I know at least one family who stayed and managed.

      We took a trip to Utah after my son’s transplant and the first thing he said was, “I could never have handled this elevation when I had PH”. But if you live there maybe your body adjusts to it somewhat? I don’t know.

      We traveled to high elevations during the trip to see the views and even when healthy, all of us experience headaches and fatigue afterward. I have to say, it was beautiful to see but there are plenty of gorgeous areas at the lower elevation too.

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