• I started out on oxygen as needed, but kept having to increase it with exertion, and now I’m on it 24/7 and still need to keep upping it. Just went up to 4L most of the time, which will keep me above 90 with exertion and 94-95 at rest. My POC only goes up to a setting of 5, which is not the exact equivalent of liters per minute. When I run the POC…[Read more]

  • Donna posted a new activity comment 11 months ago

    Brittany, thanks for letting us know…I’ll also be praying for you as you recover!

  • Hi, Joni! I’m also in Colorado, although north of Denver rather than south, like you are 🙂 I’m also new to PH; was in Estes Park in April hosting a women’s retreat when I apparently had a small stroke, became extremely hypoxic, and have never been the same since. A bit of pneumonia, mild atelectasis, and it took me off a cliff, as my doctors…[Read more]

  • Melanie, thank you for your wonderfully uplifting post!

    I’m new to PH and to wearing oxygen, but just this week have had at least 3-4 healthcare professionals remind me to wear it full time. I almost always have one of my grown kids along with me for appointments, and they have a nasty habit of telling the docs that I like to take it off now and…[Read more]

  • I had pretty much given up on shopping and have been doing online orders, until last week when I got an electric cart to shop at Sam’s. With my husband’s help and my oxygen on, I actually enjoyed it! I don’t know why I hadn’t gotten a cart sooner.

    Had a stress echo today and am so exhausted…not expecting much out of tomorrow. When I get this…[Read more]

  • Hello again…sorry, posting a lot today.

    I wondered if most of you have good days and bad days, and if you’ve found a common denominator for either. Yesterday I almost felt like myself again…I spent a few hours at work (at a desk) without getting too exhausted, was even able to take off my oxygen for a couple of hours as long as I was just…[Read more]

  • Do any of you have tips to help with breathlessness when talking? Or singing, for that matter?

    I’m the administrator at my church, and Sundays are full of people asking questions and needing direction, as well as, of course, some hearty singing. I’m finding it difficult to get through the half-day without getting breathy when talking or singing,…[Read more]

  • Kathleen, I so appreciate your post! I had a 6MWT a couple of weeks ago, and ignored the advice given to slow down or stop if I was symptomatic. I walked very briskly (even the tech trotting along behind me told me I could slow down if I wanted to 🙂 and pushed through some pretty severe chest pain, which did stop me a couple of times anyway. I…[Read more]

  • Brittany, I do see a cardiologist and pulmonologist. My new PH doc is actually a cardiologist, as well…sadly, my previous cardiologist just had a massive heart attack, ironically.

    I’m sure once the cath is done he will have some suggestions for medications, and I’ll be sure to mention the tachycardia. I do find that it gets more difficult to…[Read more]

  • Interesting topic! I’m still trying to figure this out. If I ignore chest pain, weakness, or that lurking suspicion that the “wall” is just ahead, I am always sorry later. Right now, my “exercise” consists of driving to work and back, occasional shopping trip, and housework.

    I find I can tolerate an o2 at 88 for a while, but it’s the heart rate…[Read more]

  • Thank you both for your answers! I do think I will use my portable when the family is all here…especially the smaller grandchildren. Kristine, I have one desk that constantly snags it, cat plays with it, dog chases it, etc. I’ve discovered all the door handles and hooks I can hang my cannula on when it gets frustrating! I’ve got a portable…[Read more]

  • I have been on oxygen almost continuously since April, which has not been an easy transition! For those of you who have been doing this a while, can you give me a few tips?

    -How do you keep from stumbling over long, coiled tubing? I haven’t tripped yet, but I suspect it is coming. Myself and my husband trod right over the tubing, but when my kids…[Read more]

  • Thank you, Brittany! I was looking at another thread discussing cath pain…I have a condition called CRPS (RSD is the old name for it), which is an abnormal pain response. Right now I have it in my left arm, as the result of nerve damage thanks to a drunk driver…but it can spread to other limbs. I am a bit concerned about that. If this is going…[Read more]

  • Donna‘s profile was updated 1 year, 1 month ago

  • Hello! I’m Donna, a 59yo mom of 5 and grandma of 11! I led a busy life until April of this year, when I landed in the hospital with a mild pneumonia but not-so-mild hypoxic encephalopathy. After a slow 2-mo recovery of sorts and a million non-invasive tests, my fantastic pulmonologist referred me to a PH doc, whom I just visited yesterday. He said…[Read more]

  • Donna became a registered member 1 year, 1 month ago

    • Hi Donna,
      welcome to the PH forums ! Great to have you here as a member. There are a lot of forum topics to look through. I am sure you will find some that you will want to comment on. Feel free to comment on any that are of interest or that you can relate to. It is always good to feel like we can connect with others who share similar stories.…[Read more]

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