This topic contains 16 replies, has 7 voices, and was last updated by  Brittany Foster 1 year, 2 months ago.

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  • #12050
     Brittany Foster 
    Keymaster

    Breathing seems like something that should be so simple. Breathe in, breathe out. Sounds easy doesn’t it? For those with pulmonary hypertension, it’s not as easy as it sounds and most of the time, it’s not what we show to the outside world.

    After suffering with an acute flare up of difficulty breathing this past weekend and a hospital admission, I realized how much I struggle each day to simply inhale and exhale on my own. In order to exchange gases properly in a day, it takes huge amounts of work and time consuming treatments.

    I require supplemental oxygen to bring my oxygen level in my blood to a “normal” level. I use a bipap machine during the day and at night to give my muscles a rest and get rid of any extra carbon dioxide I have been retaining during the day. I take inhalers to open up my upper airways to avoid any unnecessary obstruction of airflow. I have recently added four breathing treatments a day that last for 15 minutes each just to avoid bouts of bronchial spasms and constriction in the throat which would limit the air I am able to bring into my lungs.

    Many of the ways in which I am able to breathe are not seen on the outside, especially if I do not have my oxygen on. Many do not realize that oxygen is far from the only treatment allowing me to properly take air into my lungs and release it.

    What are some treatments you have to do during the day to breathe properly? Do you require supplemental oxygen to help your oxygen saturations remain “normal”? Do you use breathing treatments and inhalers? Do you use cpap/bipap? Are you on medications to help open up your airways?

  • #12053
     VK 
    Participant

    I am lucky that I am early stage (and stable at that) enough to only need lifestyle modifications.

    I sleep on my side, which prevents OSA. I also do breathing exercises via singing (yes, there’s an Xbox app for that as well!).

    Also important: At work, I do not hesitate to inform my supervisor that “I’m too busy enjoying atmospheric oxygen” if she tries to add an additional project to my workload, which also helps.

    • #12062
       Brittany Foster 
      Keymaster

      Sleeping on my side makes a difference for me too ! Also I sleep propped up with a few pillows. For some reason I have a lot of trouble when sleeping on my left side.

      That’s interesting about the singing apps! I want to know if they have any apps that help give breathing exercises to help relax the chest muscles. I’d be interested in looking that up. Maybe something like meditation. Have you ever tried that?

  • #12065
     Robin Taylor 
    Participant

    Brittany, sorry to hear of your latest flare-up. It’s always in the back of my mind…if I don’t get my breathing under control during a rough day, that I’ll have to be hospitalized. Most days, my 5 liters of oxygen works wonderfully and I think I might even be able to reduce the flow. On others, when I have an allergy flare-up or if I catch a virus from ???, I have been using a essential oil blend from Young Living called RC (Doterra has one similar called Breathe Easy). At first, I put a couple drops on the floor of my hot shower, and it would ease the breathing through my nose (important when getting our O2 through the cannula, lol!). After a particularly stuffed nose a few weeks ago, I had the epiphany to put a couple of drops in a surgical mask and breathe it for 10 minutes…it worked great. I have checked with the docs to make sure it is ok for me. Essential oils can also be an irritant for some people, so it’s best to test a small amount to see if you are allergic to it. I’m always looking for a natural way to cope with my issues, there aren’t that many 😕.

    Also, since my sats drop very quickly during exercise, I do deep breathing exercises while on the treadmill. (Breathe in deeply through the nose, blow out slowly through pursed lips) I can keep them from dropping lower than 82-85 (still pretty low, but I don’t have side effects).

    • #12068
       Brittany Foster 
      Keymaster

      Hi Robin ,
      I get the same way with exertion. Even with the oxygen on my levels will drop to the 80s. It’s hard because people assume I am “fine” if I just wear my oxygen. But that’s not the case. There’s so much more to my treatment plan that just supplemental oxygen therapy.

      Thanks for the great tips on the essential oils! I would love to give that a try. The breathing exercises while doing some type of exercise is also a great idea!

  • #12071
     Ann Goddeyne 
    Participant

    I also find that my stats drop rapidly when I start moving. I don’t need oxygen when I am sitting but if I walk any distance I have to use it. In the last year I started with flow of 2 on pulse and am now at 6 with continuous flow. I switched to liquid O2 but can only get about 1 1/2 hrs Has any one else seen this rapid decline? Or is this normal? Am going for my 3rd right heart cath this time with exercise to see if my doctor can figure it out.

    • #12072
       Brittany Foster 
      Keymaster

      HI Ann,
      I get like that too and have undergone so much testing to try and pinpoint the problem. They found out that mine is a combination of not enough blood flow circulating to the body which limits the amount of oxygen being carried and blood perfusion to the extremities. And it’s also my lungs not exchanging the air properly because of how restricted they are. I have something called central hypoventilation which means that I am not breathing enough with exertion which is because my body is lacking the signals that trigger breathing response ! They ended up finding out a lot with two different types of cardiopulmonary exercise testing. One was with a heart cath and the other with a breathing machine to analyze breathing patterns. I have cheyne stokes respiration. I’m sure there’s a lot to research in what I just said ! Lots of medical terms !

    • #12075
       Kathleen Sheffer 
      Participant

      I’ve never heard of a cardiac catheterization with exercise. Do you mean an echo stress test? I’m intrigued.

      • #12076
         Brittany Foster 
        Keymaster

        Hey Kathleen,
        It’s a level 4 CPET where they do a right heart cath and record measurements with exercise. They usually have you bike during it with the cath wires in place! It was uncomfortable but gave the doctors a lot of valuable info. Theres only a few places that do this !

      • #12078
         Kathleen Sheffer 
        Participant

        OUCH! I thought I was a pro when I started doing caths without general anesthesia. Sheesh. Not sure I could handle what you describe. Wonder Woman status.

      • #12079
         Brittany Foster 
        Keymaster

        Definitely hurt !!! Not gonna sugarcoat that hahahaha. Luckily I had pretty awesome doctors in the OR. They were serenading me with Ed Sheeran songs lol 😂😂😂😂

  • #12073
     Margie Novak 
    Participant

    Breathing has always been a problem for me. I am on oxygen 24/7 and take 8-10 liters. I really have to try to not do anything strenuous. The worst times for my breathing is when the humidity and dew pressure is high. I am miserable. I do at times sit in my bedroom an focus on my deep breathing to just breathe in and out. Cannot walk long distances and if I do have to stop to breath. I get upset for using the oxygen but people tell me — it keeps you alive so… I just go with that. My family has seen me so much with oxygen they don’t even notice! I also use a CPAP.. Didn’t want to in the beginning but now it is a blessing Used to wake up with headaches and no more. Doctor said my carbon dioxide was too high at night. Hope this helps someone! all my ramblings.. take care all

    • #12074
       Brittany Foster 
      Keymaster

      Thank you for this Margie !
      It is great to hear what you have been experiencing because it makes me feel as though I am not alone in these symptoms. There was a time when doctors would just blame my difficulty breathing on allergies but deep inside I knew it was much more than that. The humidity is SOOO HARD on me as well! It is hard enough breathing when it is not hot an sticky outside. I try to pay attention to the news and the alert days I have to stay inside most of the day (even though this really bums me out because I was once such a Summer person!) I learn my limits and I agree that it is so hard with the oxygen. It is a lot easier for someone to tell me “but you need it so who cares what you look like!” I truly really do care about the appearance of it but I’m learning to try to work through that. My boyfriend always tells me “you care MORE than the other people who are around you when you have your oxygen on.” It’s so true!

  • #12129
     Kaye Norlin 
    Participant

    Level 4 CPET sounds dangerous and something I am not sure I could tolerate. Regular CPETS are tough, as are RHCs. allergy season was always difficult for me so I bought a scooter and used it when needed. I always hated the limitations but I gardened with a bench seat that I moved around and avoided the worst temperatures of the day. I could walk on trips but one block then stop and breath and one more block, stop and breath. I did find that people are nicer to you when you have the oxygen tank so stop being concerned; it is just a part of you; it is not who you are. Breathing thru the nose and out thru pursed lips does help you breath better and relax- every good yoga session begins with this technique. I also slept with 3 pillows. I hope it gets better for you Brittany. do you do pulmonary rehab where they can increase your oxygen while you exercise and monitor you?

    • #12138
       Brittany Foster 
      Keymaster

      Hi Kaye,
      thank you so much. I have been learning to adapt too! Over vacation I took a scooter ride around the area and it was the best experience. I felt like I was doing something fun and keeping up with everyone while on the scooter. I thought to myself “wow if only I had something like this when walking long distances it would help me keep up with everyone else !” It wasn’t a mobility scooter, it was a sit down three wheel scooter that was almost like a motorcycle. A moped would be pretty awesome too! Maybe I’ll start saving my $$ for one ! and I haven’t done pulmonary rehab but I have worked with PT in hospitals to see where my oxygen needs to be at different levels of activity. I do my own workouts and honestly am pretty active for everything that is going on ! I have a strong outlook and positive spirit so that helps a ton!

  • #12253
     Kaye Norlin 
    Participant

    I would love a moped!!!!! Unfortunately, my balance needs work. I still use my scooter when I go around town with my daughter and will use it on long shopping trips because I just get tired. I got a 4-wheeler because it had more power and could almost keep up with my daughter’s power wheelchair which goes 10MPH. Keep going and stay positive.

    • This reply was modified 1 year, 2 months ago by  Kaye Norlin.
    • #12282
       Brittany Foster 
      Keymaster

      Thanks so much Kaye ! four wheelers are awesome too. The moped I took around Canada on my trip was 3 wheels and pretty easy to balance on. It looked pretty cool too. Like a combination motorcycle/scooter! I honestly need to look into prices so I can get one ! I have stay in a beach community in the Summer and there is a lot of walking (kind of like a campground but not in the woods) . Most of my friends walk to the pubs and I feel like I just can’t do it. That would be so cool to take a moped and go and not feel like I’m missing out.

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