• Hey Brittany,

    I actually don’t fight my body’s need for a nap. I know when I am tired or run down from my activities during the day or previous days. So when I feel sleepy, I take a nap. The time varies every time. I try not to get into the habit of napping everyday, but if I need a nap, I take one. I think the longest I napped was 1.5 hrs. Hah…[Read more]

  • I was bummed when I found out the airlines were no longer providing oxygen for passengers. It gave me a sense that I could travel freely as long as I was able to rent their tanks. But all that changed when they changed their oxygen policies. And I think all airlines follow the rule too. So when my husband and I took a trip over to Washington, DC,…[Read more]

  • Hey brittany,

    I thought I was the only one that had pain during an echo. But then again, I know few people with as much medical problems as me, besides everyone in here. 🤗 Years ago the woman doing my echo was doing an ok job for the most part… because nothing was worrying me. Towards the end of it, she put the device (for the life of me, i…[Read more]

  • Ooopps. Correction. I rented the Sequal Eclipse 5. 😂😁 Not the Equinox.

  • Yes! I hate the weather changes; especially the colder, winter months. I love the holidays but I hate the weather that comes with it. I mean, I live in Southern California so the weather isn’t that extreme but any temperature drop during this time of year takes a harder toll on me. I feel more out of breath with the easiest distance outside. I a…[Read more]

  • Diane Enriquez Chung posted a new activity comment 1 year, 1 month ago

    Oh wow! That sounds like they are pretty understanding. If you don’t mind me asking, what agency did you go through? I know adoption is our last resort, but I would love any info you are willing to provide me. 😇 We just want to try our luck with USC once I get the courage to call them. We even were thinking to ask my sister if she would be our e…[Read more]

  • Diane Enriquez Chung posted a new activity comment 1 year, 1 month ago

    I knew I was not going to be able to carry a child early on in my diagnosis. So I was able to cope with that reality a long time ago. So are you going through with adoption? I was thinking that a family would not want their child to be raised with someone that is sick and unwell. And that our chances of finding a child to take in, would be…[Read more]

    • For the private adoption that we are looking into, I have asked this question about living with an illness like PH and they informed me that as long as my doctors can provide documentation saying that it is being managed, they would never turn me away. I was so afraid of them saying that we wouldn’t be a good candidate. I believe that all adoption…[Read more]

    • Oh wow! That sounds like they are pretty understanding. If you don’t mind me asking, what agency did you go through? I know adoption is our last resort, but I would love any info you are willing to provide me. 😇 We just want to try our luck with USC once I get the courage to call them. We even were thinking to ask my sister if she would be our e…[Read more]

  • I had rented the Sequal Equinox POC a couple times. It is FDA approved and does a continuous flow of 3LPM. I’m not sure if that’s the highest setting on continuous or if it can go to 4LPM. I did rent a smaller PoC once but it only did pulse flow. That was before the doc told me I should be on continuous. 😕 So the Equinox is my personal choice. The…[Read more]

  • My husband and I are pretty bummed right now. We had spent the past few years trying to do an IVF through a surrogate (my sister). The fertility doctor has never had a patient like me before so of course she had to learn about my condition through my pulmonary doctors and me. I had been on the Depo shot for a couple years and she told me to stop…[Read more]

    • Hi Diane,
      I am so sorry that you are going through this and I actually can relate to how you must be feeling right now. I have had infertility because of removal of my tubes and right ovary when I was only 20. I thought that i would be able to do IVF before I had all these health complications. It then turned into the hard truth that i wouldn’t…[Read more]

      • I knew I was not going to be able to carry a child early on in my diagnosis. So I was able to cope with that reality a long time ago. So are you going through with adoption? I was thinking that a family would not want their child to be raised with someone that is sick and unwell. And that our chances of finding a child to take in, would be…[Read more]

        • For the private adoption that we are looking into, I have asked this question about living with an illness like PH and they informed me that as long as my doctors can provide documentation saying that it is being managed, they would never turn me away. I was so afraid of them saying that we wouldn’t be a good candidate. I believe that all adoption…[Read more]

        • Oh wow! That sounds like they are pretty understanding. If you don’t mind me asking, what agency did you go through? I know adoption is our last resort, but I would love any info you are willing to provide me. 😇 We just want to try our luck with USC once I get the courage to call them. We even were thinking to ask my sister if she would be our e…[Read more]

  • Hey Randolph,

    Oh my… I totally understand your frustrations and the tediousness of flying with oxygen AND Remodulin! 😔 It is indeed very difficult! I did hate flying when I was on Remodulin. So much prep and paperwork and research to make sure the airline is accomodating or understanding. Traveling with both is such hard work. I felt bad for my…[Read more]

  • Oh yeah!! I know pain well, unfortunately. I was on Remodulin Sub’q for 8 year!! Yup! 8 years! Pain and I were best friends. ☹️ My Remodulin dose started off low then the doc gradually raised it over the first few years. As the dose got higher, my site pain got worse and worse. The pain was always after the site change (needle change). My site w…[Read more]

  • Randolph

    That’s great that your meds are making you feel a little better. I was actually on Remodulin for about 8 years. It was rough flying international with it though. Haha. I went to India for a wedding and flying there wasn’t bad, it was the trip home that was stressful. The airport TSA’s didn’t understand why I had liquid meds, needles…[Read more]

  • Constance

    The Inogen you are talking about only has pulse-flow settings. I need to be on continuous flow settings and those are only available on the bigger POC units. Some smaller ones have continuous flows but only go up to 2 LpM or something. And the criteria for the POC I wana invest in are the ones that are also FDA approved so I can travel…[Read more]

  • Oh I see. That’s cool. That’s a lot of tanks to carry around but it seems worth it so you can be mobile and hands free. My liquid oxygen tank is heavy when it’s full but I don’t have it in a backpack. It has a shoulder strap so it puts strain on my shoulders. If my husband is with me, he will carry my tank but other times it’s just me lugging i…[Read more]

  • Hey Brittany,

    Unfortunately, the POC is on the bulky side so it’s the ones you have to roll around. I have also been looking for a POC that is compact and fits my 3LPM needs. But I don’t think they exist. 😢 hahaha. At least not yet. 🙂 I get sad about the fact that the POC’s I need are the bigger sized ones. I hate it sooo much. I get sad that…[Read more]

  • Brittany

    How are you on continuous flow of 4LPM and have a small, 5lb tank?? Is it the ones you refill yourself or do you have many tanks that you carry on-hand throughout the day? They put me on liquod oxygen because it has smaller portable units for it, instead of the tall green tanks. They told me that the smaller green tanks won’t be e…[Read more]

  • I used liquid oxygen on continuous flow at 3Lpm. I’m on it at night and when I leave the house. It’s annoying because when I use the liquid it only lasts about 1.5-2 hrs. At night, I have the giant tank so it’s fine and lasts a while for home use. I have air-traveled with a POC a couple of times. I used the Sequal Eclipse 5 POC. I had to rent…[Read more]

  • Hi Kristine,

    I actually did pulmonary rehab about 4-5 years ago. I had heard about it through an old PH support group so I looked into it. I asked my pulmonary doc and he gave me a referral to enroll into the program. I’m not sure if the program varies, but for me, it was a 6 week program. It was 3 days a week for 6 weeks; about 3 hours each s…[Read more]

  • I was on Remodulin for 8 years. I always had that weird sensation around my jaw and I never knew what it was. I finally asked my Dr. and he told me it’s jaw pain. I asked him what that actually means and he explained it as sort of like the sensation of sucking on a lemon. Haha. And it was probably the best way for him to describe it and it made s…[Read more]

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