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    • #31617
      Roger Bliss
      Participant

      Got an email from medicare about a recall on Phillips Respiratory Devices. If you are using one check out the link…..
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      <div><span class=”p-heading-02 p-heading-light”>https://www.usa.philips.com/healthcare/e/sleep/communications/src-update?utm_campaign=20210825_gmd_res_gal&utm_content=english&utm_medium=email&utm_source=govdelivery</span></div&gt;
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    • #31635
      Jen Cueva
      Keymaster

      Thanks for sharing that information, @wheeldog. I know that others will find this helpful.

      Do you use Phillips handheld for your Tyvaso? How is that going, btw?

      • #31654
        Roger Bliss
        Participant

        Tyvaso sends their specs to a manufacturer and has it built. I can’t find any info on who makes them. The Tyvaso is working for me. On days I am busy I take 4 breaths, on slow days I take 5. 5 makes me a little short of breath, but I figure I need to get my lungs used to it, so I put up with it when I can.

        • #31657
          Jen Cueva
          Keymaster

          Hi @wheeldog, I am happy to hear that the Tyvaso is working for you. It sounds like you have a routine that you can follow, even on your busy days. That makes me happy.

          I knew that Tyvaso has its own machine but was unsure if they share who makes it with patients. I have seen that nifty inhalation device, and it looks pretty portable. So, thankful that it is so that you can carry it in your truck.

          Like all treatments, creating a routine that works best for us is important for med compliance. Do you have any tips for others starting Tyvaso?

        • #31672
          Roger Bliss
          Participant

          I don’t mind taking Tyvaso. They won’t let you take any without a nurse showing you how to use it. You get a lot of information from them. If anyone has questions about Tyvaso, I would be happy to answer them.

        • #31679
          Jen Cueva
          Keymaster

          Thanks, @wheeldog; I know that others will be happy to ask questions about Tyvaso. I will take you on that topic in another post.

          Yes, the Acccredo nurses are excellent with education before staying most of the PH treatments. I think that I had a nurse visit for an hour or longer before all except one of my PH meds through the years. That is an excellent resource, and I wish all had access to that.

          Take care, my buddy; I am sure that you are keeping busy working. When did you say you start to slow a bit?

        • #31696
          Roger Bliss
          Participant

          It’s has been a little slow, but starting to pick up now.

    • #31651
      Barbara Thompson
      Participant

      Mine was recalled & has been replaced. Wondering if it has caused the excessive coughing I’ve had for some time??

      • #31658
        Jen Cueva
        Keymaster

        Hi @barbarainmemphis, that would make sense that your excessive coughing could be related. Did you contact the company and get a new one?

        How are you healing? It is great to see you pop in the forums again. I am sending much love to you and Chuck from Texas.

        • #31671
          Barbara Thompson
          Participant

          Yes, it’s been replaced.

          Foot is healing. It’s just slow going to learn how to walk on fused & straightened toes.  Chuck is doing okay but still busy worrying about & with me. He’s such a great guy. I am truly blessed.

          Thank you for asking.

        • #31681
          Jen Cueva
          Keymaster

          Hi @barbarainmemphis, have you noticed a decrease in the coughing yet since it was replaced?

          I am happy that you are healing and can imagine walking will be difficult until you get accustomed to walking with that newly designed foot.

          Chuck sounds like a great guy. Like Manny, they worry more about us. I am certainly happy that you, too, are fortunate and blessed. That makes a huge difference when we have such supportive partners, especially with living with PH and other health concerns for so long.

          How long have y’all been married?

          I bet that y’all both have a bunch of extra free time that y’all are no longer doing the full wedding deals. That must have been so much fun but so much work, too.

          Take care, my friend, sending you healing vibes and prayers to learn to walk on that foot.

        • #31682
          Jen Cueva
          Keymaster

          Hi @barbarainmemphis, have you noticed a decrease in the coughing yet since it was replaced?

          I am happy that you are healing and can imagine walking will be difficult until you get accustomed to walking with that newly designed foot.

          Chuck sounds like a great guy. Like Manny, they worry more about us. I am certainly happy that you, too, are fortunate and blessed. That makes a huge difference when we have such supportive partners, especially with living with PH and other health concerns for so long.

          How long have y’all been married?

          I bet that y’all both have a bunch of extra free time that y’all are no longer doing the full wedding deals. That must have been so much fun but so much work, too.

          Take care, my friend, sending you healing vibes and prayers to learn to walk on that foot.

    • #31817
      Barbara Thompson
      Participant

      Yes, I am no longer having the coughing at night problems.

      Chuck & I met October 1, 1973 & have been together everyday since so we are coming up on 48 years – with only one argument. (I had been dating another guy & we always argued so I thought that that was how it was supposed to be). We got married in May of 1975 so we’ve got 2 anniversaries.

      I was sooo mad at God because He took my girls, (the brides), away from me but my daughter, Brandy, convinced me that God decided that I needed to raise awareness of PH instead of doing the weddings. In fact, the last thing I remember prior to diagnosis was getting a bride down the aisle in April of 2000. I told Chuck I needed to go lie down in the car for a bit & the rest is history – 14 doctors & 2 years later from being bedridden. He ran the business but the beginning of the Afghanistan war (grooms leaving for war) & a lady dying in one of our offices but not discovered for days was the all he could do, (the front part of our building had to be rebuilt). We had 27 employees at one time so it was a great business. I will always miss it.

       

      • #31823
        Jen Cueva
        Keymaster

        Hi, @barbarainmemphis,

        I am happy to know that the coughing at night has resolved.

        Thank you for sharing so much about the journey of you and Chuck. You two certainly were made for each other. That is crazy that I was born the month and year that you met, LOL.

        You look much younger than this would make you, hehe.

        I cannot imagine the pain of letting go of the business. But, you both continue to give and do an awesome job advocating and raising awareness for PH. Thank you both. I hope that you to will have some relaxing time together in between busy doctor appointments.

        Do y’all have any plans or tend to go with the flow and enjoy the little moments together?

    • #31818
      Colleen Steele
      Keymaster

      @barbarainmemphis it’s good to hear from you and that the coughing has subsided. It sounds like you are blessed with a great man. You have both been through a lot together.

      I can only imaging how much you miss working. You gave it all when you could and touched the lives of many during those years. Now you are greatly appreciated and valued in the PH community. It seems like wherever life take you, you give it your all and help those around you.

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