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  • raya

    July 19, 2023 at 2:41 pm

    I enjoy quirky zany comedies involving people just being human and trying to connect with others. My go-to for that these days is Hulu’s “Superstore”.

    • jen-cueva

      July 20, 2023 at 4:22 pm

      Hey @raya, that is a funny one. Manny, my hubby, and I have watched that several times, too. We haven’t watched it in some time, but when browsing and it pops up, we often turn to it for some humor.

  • jen-cueva

    August 22, 2023 at 11:32 am

    Hi @raya, I wanted to check in and see how you and your dad are doing. Did you get moved back to his house after the termite tenting process?

    How are you doing emotionally? How is Dad doing with his symptoms and using the oxygen?

    Please let us know how y’all are doing and how we can best support you.

    • Colleen Steele

      August 22, 2023 at 2:55 pm

      @raya to be honest, I forgot you were doing the extermination tenting. I would also like to hear how that went and if through experience you have any advice for others who might have to do the same.

      @jenc is so wonderful at keeping track of our members schedules and events. We appreciate you Jen!

    • jen-cueva

      August 29, 2023 at 12:09 pm

      I want to share some updates from @raya about the termite tenting at her father’s house and how things are going. She shared these as an update; I’m sharing them here for others to locate easily.

      Raya says, “My how time flies! Let me catch you up on the fumigating (as there has since been a trip to the E.R. for a fall, as well as prepping for Tropical Storm Hilary). I returned home Thursday July 20, to get the key from the fumigator, air out the house and wait for the gas man to turn the gas back on. Dad was still at the airbnb.

      I had been real worried about filling our home with poison, but they did it right, and obviously I survived walking back in! The gas man arrived, turned the gas back on, inspected our furnace and declared that we need a new furnace because of cracks in the fire box. Ugh – I added that to my figure-out-how-to-do-it list.

      My brother and I moved dad back home on Friday 21st. Original plan was Saturday 22d (to air out house a bit longer), but brother and truck were available only on Friday. Plus I saw how it was better for dad – and subsequently for me – to get him moved in sooner, back to his comfort zone.

      It was exhausting. I told my siblings, if we ever again have to move dad out temporarily, that I would want a second sibling along as well, from start to finish. And since then, at my request a sister has stepped up to handle house issues (i.e. the furnace).

      I did have the foresight to schedule a massage for myself for Tues 25th!

      (End of fumigation adventure!)”

      • jen-cueva

        August 29, 2023 at 12:15 pm

        Wow, @raya, it sounds like such a busy time. I hate to hear about your dad’s fall and ER visit. Did he break anything? Not to mention the stress of that hurricane warning.

        I know you and your dad both must be grateful to be back at his home. How is he doing now that you have been settled back at home?

        Yay for asking for help, and your sister is now helping you with some of the issues that must be resolved. That, and also for keeping your massage scheduled and taking that recharge time for yourself, was much needed and deserved. I’m so proud of you for speaking up and asking for help. Many of us struggle with this.

        Hopefully, you can schedule more massages and other time away for yourself. How many siblings do you have that live close by, Dad?

        Thanks for the updates, and we are so happy to have you back and all in one piece. 😉

      • raya

        August 29, 2023 at 8:50 pm

        Hi Jen, thanks for the words of support. Dad rested his weight on a chair, the chair toppled and he went down on top of the chair. He didn’t hit the floor, just his ribs got banged up on the chair. So I learned about the “unwitnessed fall.” No breaks or fractures. Just an eleven-hour trip to E.R. Next time, when my one near-by sister says “I can take over after X o’clock”, I’m going to take her up on it. I just kept thinking, we’re almost outta here, so I didn’t bother. Don’t listen to ER doctors’ time estimates!

        Today we’re playing with his medic alert device from the V.A. This is one that you wear. It replaces the little desktop box that you store numbers in, which is 14 years old. Would love to hear other people’s experience with these devices.

      • jen-cueva

        August 30, 2023 at 12:45 pm

        Hi @raya, I’m thankful your dad didn’t break anything, but I bet he was sore. Probably not as frustrated as you after that long ER visit! Is there no Urgent Care center he can go to for things like falls, so you aren’t in the ER for so long?

        Yes, certainly take your sister up on helping out. You need time, too. I’m happy you spoke up, and she is stepping up some.

        I briefly used a Medic Alert device for about a month or two after recovering from a severe case of COVID-19. It was similar to the “help, I’ve fallen and can’t get up” type, worn around my neck. I agreed to use it so my caring husband could return to work peacefully.

        I accidentally triggered it once when I came inside from the patio. He was worried and almost called an ambulance, but I assured him I was just short of breath from walking and fine. He ensured I sat down and rested while increasing my oxygen level.

  • jen-cueva

    August 22, 2023 at 11:54 am

    As we nearly wrap up another eventful month, we’re thrilled to welcome our newest PHriends. It’s always a pleasure to meet fresh faces and discover their unique PH journeys.

    Please give a warm welcome to our latest members: @carhastings, @dbmar, @catygirl, @ggwells, @ctbassmobilegmail-com
    , @bac4107, @chumash58, @dbf55311, @irinsmith, @ellie, @satherton, @gokcensimsek, @dbell1069, @annie10280aol-com, @franboston, and @fring.

    We’re curious to know more about you and your PH journey. Let’s kickstart the conversation with a few icebreakers:

    ✨ Where are you located? Share your corner of the world!
    ✨ Are you a patient, caregiver, family member, or a friend lending support to someone with PH?
    ✨ What PH treatments are you currently on? ange knowledge!
    ✨ Have burning questions for our members? Don’t hold back!
    ✨ Lastly, spill a secret about yourself that may surprise us. We love a little dirt!

    If you have any questions about the forums, don’t hesitate to get in touch with me or @colleensteele. We’re eagerly looking forward to delving deeper into your PH journey. Let’s connect and grow together!

    • Colleen Steele

      August 22, 2023 at 2:46 pm

      I don’t wish PH on anyone but it is nice to see our forum growing. It shows that word is getting out that patients and their caregivers have a community available to help them with knowledge and support.

      Welcome new members! I look forward to getting to know all of you!

  • jen-cueva

    September 7, 2023 at 2:42 pm

    I’m sharing this update for one of our newest members, @jvlamotteaol-com. She replied to my welcome message with some questions.

    Janice says, “Thank you so much for your response Jen. As I mentioned I have Scleroderma PAH and was recently put on oxygen. (I also have CREST) I have a Portable Oxygen Concentrator P2. However, it only last for a little over 2 hours when I am out of the house. Does anyone use a Concentrator that last longer than 2 hours and if so which one would you recommend.
    I contacted Inogen today and they have a new portable concentrator that came out recently #6 that runs for over 6 hours with a back up battery that runs for over 3. I am looking into this to see if my insurance pay for any of this because it is expensive, but it would be a god send.

    I have another question, as well. Has anyone taken or is taking Orenitram and if so has it made your PAH worse? Thank you for any guidance or information any one can offer.

  • jen-cueva

    September 7, 2023 at 2:54 pm

    Hi @jvlamotteaol-com, As I mentioned, I also have an Inogen; it’s older. But I have an extra battery. It’s a longer-lasting battery and a car charger. I can go 4-6 hours at 3-4 liters before I need to charge it with both batteries. Maybe you can purchase an extra battery, which will help if insurance won’t cover the new one. Yes, they are not cheap!

    I was on Orenitram briefly before Uptravi came out, and I was switched. But I had extreme GI side effects and lost weight with it. But it didn’t worsen my PH, perse. Here’s a topic where others shared their experience with Orenitram.

    Which Medication Do You Dislike Taking The Most?

    How did you choose your treatment?

    Welcome, and we are excited to get to know you, my PHriend.

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