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  • Welcoming a New Month and New Members

    Posted by jen-cueva on October 5, 2020 at 9:25 am

    October is here, and I cannot believe how fast this year is passing us by. Is it just me?

    We are happy to watch the PHamily grow each week. Often, new members tend to lurk awhile before they are comfortable to post. This is perfectly fine; we are here to support you when you are ready to chime in.

    This week, we welcome to the PH forums, @nurset07, @zsmom, @jillybean63 ( I love this name, BTW), and @anthony-degeorge. If you haven’t already shared, please share a little about yourself and your PH journey if you have not yet done so. Here are a few suggestions.

    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. Please reach out to either me, @colleensteele, or @brittany-foster, if you have any questions about the Ph forums.

    jen-cueva replied 3 years, 5 months ago 4 Members · 13 Replies
  • 13 Replies
  • Colleen

    Member
    October 5, 2020 at 6:08 pm

    Welcome new members! We want you to feel at home here and I’m confident that you will. Our members are very caring and supportive to one another.

  • jen-cueva

    Member
    October 12, 2020 at 8:36 am

    We want to welcome our new members to the PH forums. This week, join me as we welcome @halfvass and @saksfifth44 to the PHamily. I really like your names, ladies. I hope that you both feel welcomed and find the support that you need. I know that sharing your own personal PH journeys will be a support to others, too.

    If you haven’t already and would like to, please share a little about yourself. Here are a few suggestions.

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

  • shirley

    Member
    October 15, 2020 at 8:09 pm

    Thanks for the nice welcome. My name is Shirley and I am from Texas. I developed PAH 5 years ago and it is most likely idiopathic. I would have posted sooner but was hospitalized yesterday. I had been increasingly SOB for several days and was ordered to get an echocardiogram. I thought my PAH was getting worse but the echo showed a large pleural effusion and I was admitted. Today I had a thorocentesis and they drained 1700 ml from my left lung. What a relief. I am now home but don’t know why it happened. Hope to find answers soon.

  • jen-cueva

    Member
    October 16, 2020 at 2:54 pm

    Wow, @swmenard, I am sorry to hear about all of the fluid and the hospital visit. I am grateful that you are now back home and a little lighter, too. This must have been a big bit of relief as far as breathing. Do you notice a big improvement after getting that fluid off?

    I hope that they will give you more answers.

    I am in Texas, too. I hope that you will get more answers soon. Did you have other coexisting illnesses before PH? Thanks for sharing, and we hope to learn more about you.

  • Colleen

    Member
    October 16, 2020 at 3:02 pm

    It’s nice to hear from you @swmenard but I’m so sorry to read about your recent struggle. It must feel good to be home but most of all, to be relieved of that fluid. Are they going to eventually do any more tests to try to figure out why that happened?

    I hope you have a relaxing weekend and continue to feel better.

  • shirley

    Member
    October 16, 2020 at 3:30 pm

    I will hopefully find out what the problem was on October 29 when I see my pulmonologist. Will just be resting the next few days. Thanks for the kind words

  • shirley

    Member
    October 16, 2020 at 3:38 pm

    Jen, thanks for the kind words. Where are you in TX. I’m outside San Antonio. I have other conditions but the only one I know of affecting my lungs is PAH. Will be resting the next few days. Oh and yes I could immediately breathe better as she was pulling off the fluid

  • jen-cueva

    Member
    October 20, 2020 at 9:15 am

    Hi @swmenard, I am grateful to hear that your breathing is much better after the fluid removal. I have been to SA several times, just not within the last few years.

    It can be challenging to manage PH, along with other health issues. Many of us do as we learn what works best for our bodies. Resting is important, so I am grateful that you are listening to your body.

    Do you have any specific questions before you return to your doctor next week?

  • jen-cueva

    Member
    October 20, 2020 at 9:27 am

    Last week, we had so many new members. We are always excited to watch our PHamily grow. Please help me welcome @azad, @swmenard, @chosullivan, @leslie, @katdust, @sam-terranova, @frankie1077, and @salina, and @phyllis. Share a little about yourself and your PH journey if you have not yet done so. Here are a few suggestions.

    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 look forward to hearing your stories. Please reach out to either me,@colleensteele, or @brittany-foster with any questions that you may have about the forums. Welcome, we are happy to have y’all join us.

  • shirley

    Member
    October 20, 2020 at 10:10 am

    Hi Jen – I am resting. I hope to find out what caused the effusion soon. Has anyone else experienced this and why it happened

  • carol-volckmann

    Member
    October 20, 2020 at 8:11 pm

    Hi Shirley, I am not sure,how long ago I join this Forum, but I have to let you know how helpful, knowledgeable, supportive this group is. I hope your appointment on the 29th will give you some answers and a plan forward. I was diagnosed with PAH in 2005 which was caused by Sclaraderma. It was all very scary as I had always been so healthy and physically active. But … I found the right team and today I am pretty stable. Everyone is so different but sometimes it can be s real struggle. The folks here are right beside you when you reach out. My very best wishes, positive energy and prayers go out to you! Carol

  • jen-cueva

    Member
    October 26, 2020 at 3:00 pm

    I hope that you get some more answers soon, @swmenard. As @cdvol3gmail-com says, this group is full of supportive members. I am honored to be a part of such a close-knit, caring group.

    Please know that you are never alone, and we all want to help support you along your PH journey. Thanks to @cdvol3gmail-com for your kind words of encouragement to Shirley and about the forums. We are all stronger together.

  • jen-cueva

    Member
    October 26, 2020 at 3:05 pm

    Wow, we had quite a few new members this past week. We love watching our PHamily grow.

    This week, please help me welcome @davia-carolyn-moore, @shaunte1973, @tervo, @howdyrowdy, @sharon7651, @minxdymond, @jdunnagan, and @sadjaz. We are happy to have you join us here in the PH forums. Please share a little about yourself and your PH journey if you have not yet done so. Here are a few suggestions.

    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 look forward to hearing your stories. Please reach out to either me, @colleensteele, or @brittany-foster if you have any questions about the forums.

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