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    • #28398
      Colleen Steele
      Keymaster

      Throughout November and this first week of December many new members have joined the forums.

      Newcomers: @lori, @candis70, @jesszacjess, @katie-long, @lindau, @partheniajean, @kymk, @hassantaha08, @o2-princess, @charlottepod95, @jacklee, @cowolter, @misdia711, @n66, @fini1228, @jan-van-vleet-stange, @justdeb, @valariefcsigmail-com, @johnjhuebnergmail-com, @kgrady69, @sewbynight, @egb0413 and @adriana-posada

      I hope I didn’t miss anyone! Welcome! As new members you might prefer lurk among the forums and read for a while but if you feel comfortable, we would like to hear a bit about you. Here are some suggestions to help you start a conversation.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are so happy you found us and look forward to hearing more about your journey. Feel free to reach out to your moderators – @colleensteele, @jenc or @brittany-foster.

    • #28591
      Jen Cueva
      Keymaster

      We have had some more new members join us here in the PH forums. We want to welcome them all.

      We welcome @carol, @sue-belle, @zoemama, @jenneyeiklor, @britt88, and @kathleen-sheffer. For some reason, I feel like I missed a few, so if I did, I apologize. We like to welcome our new members here. Some prefer to stay behind the scenes; that is OK, too. But, if you are up to it, please share a little about your PH journey. Here are some suggestions to help you start a conversation.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      If you have any questions about the forums, please reach out to me, @colleensteele or @brittany-foster.We look forward to learning more about you.

    • #28604
      carol keilty
      Participant

      My name is Carol and I live in New Brunswick Canada. I am a patient and I have just found out what I had in the last 20 years. I am now 64 so to be 65. I also just found out in the last couple years I have a condition where the artery in my heart goes up the back of my heart over the top and into the front. Funny hey? they found that out when they were doing an ablation on my heart. I had two open heart operations to close an ASD. The first surgery wasn’t successful because the hole in my heart was larger then what they were prepared for so they did it again a year later and put a patch on the hole. I was in my 20’s and never ever really felt well. I looked and went here there and everywhere to find out why I felt so bad. Then I got a cardiologist who figured out what was wrong. He has got me on the right track but it is nice to hear about others. I take warfarin, digoxin, tiazac and a fluid pill. I have a pacemaker as well. I just wonder things about exercise like when to push and when not too. I get pains in my chest and very tired which makes me stop. I keep thinking if I push through it I would get feeling better. It would be nice to hear how other people feel in different weather conditions and different things they find hard to do. I hope to get some answers and talk to people with the same condition because it is pretty lonely out here. Hope that this helps a bit for you to know me a little better. I guess one of the most wonderful things about me is a am a mom of two a grandmother of five and a great-grandmother of three all are wonderful. hope to hear soon

    • #28606
      Jen Cueva
      Keymaster

      Thank you, Carol, for sharing your PH journey this far. I am sorry that you went with no answers for so long. Thankfully, you found that cardiologist that was helpful.

      You certainly should stop when you start getting the pains in your chest. I can’t recall. Are you on oxygen or not? Certainly, do not push your body harder, especially if you live alone. Have you spoken with your Cardiologist or nurse about when they want you to stop? I have always been told to stop, sit, and rest when I get those pains.

      You are so much more than a mom and a grandmother; you are a PHighter. Welcome, and I hope that you can find the support that you need here. Hugs from Texas-

      • #28613
        Cody Hanson
        Participant

        Carol welcome to the group. I love hearing others stories and learn about what makes people who they are. I agree with Jen that you should not push yourself to the point of pains or passing out. I went to a program under the direction of my Cardiologist called Cardiac Rehab. We first went over my goals and what I wanted to get out of it to make sure I had reasonable expectations. I then went 3 times a week and worked with a oxygen tube on with them monitoring my oxygen level. It was great because they would not push me more than what I should be doing but they pushed me more than I wanted at some points. Its very important to talk with your doctor and not so anything that would make you have issues. I wish you the best along your journey, we are in this together!

    • #28649
      carol keilty
      Participant

      Thank you Cody it is quite a journey for sure. I was wondering when you wear you oxygen when you are walking or exercising does it give you more energy or just keep you oxygen levels at a safe place. I have a oxygenator that I use to see where I am and in the summer time I have gone as low as in the high 70’s. My oxygen levels change. Is that a normal thing for people like us? On a normal day I am in the mid to low 80’s so that was one of the things I am going to ask my cardiologist when I see him next month but I wanted to know what you people do when your oxygen is low. thank you for reaching out Cody I appreciate your help Carol

      • #28664
        Cody Hanson
        Participant

        Carol,

        It does not give me more energy, it just allows me to do what I need to do with out straining my system as much. I would assume you are on supplemental oxygen with your levels at the range you described. Many things affect my oxygen saturation, from my activity level, the elevation of where I am, to how much I eat and drink. I live at about 4500 ft. above sea level when I travel (before covid) to Las Vegas, Hawaii, California with lower elevations my Oxygen saturation would be a lot better and I would feel like I was not working so hard to breath. There are so many things that contribute it is necessary to have a plan of action with your doctor. At first I had doctors who where not as familiar with PH and more specifically PAH. If thats the case it would be a good idea to find an accredited PH clinic who can better meet your specific needs.

        • This reply was modified 1 month, 2 weeks ago by Cody Hanson.
    • #28687
      Jen Cueva
      Keymaster

      Hi @codydaman, I am happy to see your comments to Carol. You offer some important and honest tips. I so wish the oxygen gave me energy. I am on 5 liters 24/7 currently.

      You make an important comment that many things affect our saturations. This is accurate, and all should consider these things as they work with their PH team to find the best treatment plan. A treatment plan may include oxygen.

      Let us know once you chat with your PH team.

      Thanks again, Cody! I love seeing this compassion and support. Enjoy your weekend.

    • #28816
      Jen Cueva
      Keymaster

      Hey y’all, we have had several new members join the PHamily within the last week or so. Please help us welcome them all to the PH forums. Welcome aboard, @jeanl, @clydedodge, @anneleo, and @rondataber. If you have not yet done so, please share a little about yourself. Here are some suggestions to help you start a conversation.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      One new member @anneleo shared her piece with us all here in this post

      We are happy to have you all join us; We look forward to hearing more about your PH journeys.

      • #28822
        Colleen Steele
        Keymaster

        Welcome new members! You will discover a great group of people here going through what you are and willing to share support.

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