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  • My wife has been on remodulin iv for a week and a half and has a persistent cough. Has anyone had this, and does it get better? She is only on 1ml every 48hrs and we are hoping they will increase it because she is much more winded then when she was uptravi, very disappointed so far and we dont get a phone conference until tuesday with the doctor’s…[Read more]

  • Bill replied to the topic Welcome Bill! in the forum Welcome! 1 month, 2 weeks ago

    Bill Jones, out of curiosity, did they mention the protein blocker they are doing as part of a study?

  • Bill replied to the topic Welcome Bill! in the forum Welcome! 1 month, 2 weeks ago

    Thank you Jen, they tested her kidney function and they are doing fine, she has been on a low sodium diet for two years and has done great with that. What do you do to help relieve the itching? We are talking about going to the mayo clinic an hour and a half away for a second opinion and to see if she is a good candidate for the protein blocker…[Read more]

  • Bill posted a new activity comment 1 month, 3 weeks ago

    Absolutely! Glad to hear other people thought end experiences so we know if our experiences and expectations are in line with others 👍
    • Bill posted a new activity comment 1 month, 3 weeks ago

      Thanks for the welcome. We are from minnesota and we are going through a big decision in treatment for my wife. She has been retaining fluid to the point of looking six months pregnant, and have already had her admitted three times to the hospital to drain the fluid and watch her this year. First two times they just used a catheter and gave…

      [Read more]

      • I’m so sorry to hear about all that your wife has been going through and it does sound like a 2nd opinion would be a good idea. In order for all the forum members to see and comment it’s best to post to the sub-forums. Would it be ok with you if I share this post to our Welcome page? Our members are great and I’m sure many would like to…

        [Read more]

        • Absolutely! Glad to hear other people thought end experiences so we know if our experiences and expectations are in line with others 👍
      • Bill became a registered member 1 month, 3 weeks ago

        • Welcome Bill, to the PH Forums! I am one of the forum moderators here along with Brittany Foster and Jen Cueva. Let us know if you have any questions about using the forums. I’m certain that you will receive lot’s of support and information here and help others based on your own experience. I look forward to learning more about your per…

          [Read more]

        • Thanks for the welcome. We are from minnesota and we are going through a big decision in treatment for my wife. She has been retaining fluid to the point of looking six months pregnant, and have already had her admitted three times to the hospital to drain the fluid and watch her this year. First two times they just used a catheter and gave…

          [Read more]

          • I’m so sorry to hear about all that your wife has been going through and it does sound like a 2nd opinion would be a good idea. In order for all the forum members to see and comment it’s best to post to the sub-forums. Would it be ok with you if I share this post to our Welcome page? Our members are great and I’m sure many would like to…

            [Read more]

            • Absolutely! Glad to hear other people thought end experiences so we know if our experiences and expectations are in line with others 👍
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