• ronald cole and Profile picture of Bob PowellBob Powell are now friends 2 months ago

  • Bob Powell's profile was updated 4 months, 3 weeks ago

  • Bob Powell's profile was updated 6 months, 4 weeks ago

  • With me, it’s a timing thing on disclosure of my disabilities. Most of the time when I do bring it up I will no longer hear from them. I’ve also had them say, well I’m looking for someone who is healthy. Some are only interested on who I know in the music business. All I say to them afterwards is, thank you for showing me how shallow you are…[Read more]

  • Bob Powell posted a new activity comment 7 months, 3 weeks ago

    Hi Dottie,
    I was born with a heart disease that required multiple surgeries. I also have PH and I take Revatio. The Echo are a piece of cake to get through. I have had several heart cath’s for both the right and left chambers of the heart. I managed to get through those fine. The breathing and pulmonary function tests are the ones that really took…[Read more]

    • Hi Bob. It has taken me time to figure out how to reply. I am awaiting being scheduled for the Pulmonary Functiin test and Cardiac Cath is 3/18. I do not have any underlying history of heart or lung disease. No anxiety at this time but will heed your counsel as date nears.

  • Bob Powell posted a new activity comment 9 months ago

    I see a Cardiologist and he specializes in my CHD. I also see a Pulmonary and my family doctor. It’s gets over-whelming but some how manage to keep up with them.

  • Bob Powell posted a new activity comment 9 months ago

    The Pulmonary valve replacement was due to TOF. The valve typically gets replaced about 10 years after the TOF repair. Mine lasted 40 years before having to be replaced. Lung cancer runs in my family. A CT Scan accidentally caught multiple nodules on my lungs (non-cancerous so far). After further tests, the heart cath caught the PH. The only…[Read more]

    • Wow,
      It seems like you have quite a few conditions to have to manage (to say the least! ) Do you have a different type of doctor for all conditions? I know for me sometimes it can be hard to keep track of all of them. Are you seeing an ACHD cardiologist for your cardiac care? I was seeing my pediatric cardiologist for awhile until I switched.

    • I see a Cardiologist and he specializes in my CHD. I also see a Pulmonary and my family doctor. It’s gets over-whelming but some how manage to keep up with them.

  • Bob Powell changed their profile picture 9 months ago

  • Bob Powell posted a new activity comment 9 months ago

    I was born with a CHD (Tetrology Of Fallot). Back in 2011 I had my Pulmonary Valve replaced with a prosthetic valve. The last two years I have been short of breathe and wearing out easily. I was diagnosed with PH after having a right and left side heart cath done. This PH is very new to me plus I have Alpha-1 antitrypsin MZ.

    • I was also born with CHD but my PH is not related to the CHD directly (although I’m sure it doesn’t exactly help). I’m sorry you didn’t get much pulmonary improvement after that was replaced. Were you diagnosed prior to surgery too or just after the replacement? I’m glad you had it looked into further with a heart cath. I hope some treatments…[Read more]

      • The Pulmonary valve replacement was due to TOF. The valve typically gets replaced about 10 years after the TOF repair. Mine lasted 40 years before having to be replaced. Lung cancer runs in my family. A CT Scan accidentally caught multiple nodules on my lungs (non-cancerous so far). After further tests, the heart cath caught the PH. The only…[Read more]

        • Wow,
          It seems like you have quite a few conditions to have to manage (to say the least! ) Do you have a different type of doctor for all conditions? I know for me sometimes it can be hard to keep track of all of them. Are you seeing an ACHD cardiologist for your cardiac care? I was seeing my pediatric cardiologist for awhile until I switched.

        • I see a Cardiologist and he specializes in my CHD. I also see a Pulmonary and my family doctor. It’s gets over-whelming but some how manage to keep up with them.

  • Bob Powell became a registered member 9 months ago

    • Hi Bob
      Welcome to the PH forums. I am one of the forum moderators along with @kathleen-sheffer so if you have any questions while navigating through the forums and looking at the many topics that we have here please reach out! I can see that you were diagnosed a year ago. I hope your doctors have been working well with you regarding a treatment…[Read more]

      • I was born with a CHD (Tetrology Of Fallot). Back in 2011 I had my Pulmonary Valve replaced with a prosthetic valve. The last two years I have been short of breathe and wearing out easily. I was diagnosed with PH after having a right and left side heart cath done. This PH is very new to me plus I have Alpha-1 antitrypsin MZ.

        • I was also born with CHD but my PH is not related to the CHD directly (although I’m sure it doesn’t exactly help). I’m sorry you didn’t get much pulmonary improvement after that was replaced. Were you diagnosed prior to surgery too or just after the replacement? I’m glad you had it looked into further with a heart cath. I hope some treatments…[Read more]

          • The Pulmonary valve replacement was due to TOF. The valve typically gets replaced about 10 years after the TOF repair. Mine lasted 40 years before having to be replaced. Lung cancer runs in my family. A CT Scan accidentally caught multiple nodules on my lungs (non-cancerous so far). After further tests, the heart cath caught the PH. The only…[Read more]

            • Wow,
              It seems like you have quite a few conditions to have to manage (to say the least! ) Do you have a different type of doctor for all conditions? I know for me sometimes it can be hard to keep track of all of them. Are you seeing an ACHD cardiologist for your cardiac care? I was seeing my pediatric cardiologist for awhile until I switched.

            • I see a Cardiologist and he specializes in my CHD. I also see a Pulmonary and my family doctor. It’s gets over-whelming but some how manage to keep up with them.

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