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    • #22700
      Brittany Foster
      Keymaster

      Do you have PH and liver disease. Either fatty liver, fibrosis, liver cirrhosis etc? On past imaging studies it was suspected that I have fatty liver disease. I am not a drinker but liver disease is something that many with heart conditions end up developing. A lot of those in the congenital heart disease community now see a liver specialist as well.

      I have an upcoming appointment with my PH specialist and plan on discussing this with him and showing him my most recent imaging studies. Maybe he will feel comfortable just watching me for this or he would want to refer me to someone else.

      Do you have a specialist for your liver? Do you have liver disease as well as PH? What are contributing factors to yours and how do you manage it?

    • #23575
      Karen van Schaick
      Participant

      was told i have liver disease in 2003 and then found out in 2007 i had PH. then found out 2019 I have right heart failure i also a autoimmune disease in 2007. I have a liver doctor and a Ph doctor and my primary doctor all are working together to make sure i am alright. this virus 19 make me want to laugh the symptoms to watch for is what i deal with everyday. Have a great place safe out there.

    • #23602
      Brittany Foster
      Keymaster

      @karen-van-schaick wow you are going through a lot too with the liver disease , ph, and heart failure with autoimmune disease. I feel the same way about a lot of the symptoms that they are saying to look out for. But I DO know and can tell when I am getting worse than what my usual is. Is this something that you can tell the difference of or can you really not fully tell when you aren’t feeling well or feeling worse than usual? I know sometimes it takes going from 0 to 100 to really notice something, but I hope that you can figure out a way to catch things before they get too bad. For me, I usually can tell sometimes based off how I look and not always by how I feel so I have to pay attention to those signs too.

    • #23613
      Jimi Mcintosh
      Participant

      Yes, fatty liver disease, currently fighting an unknown bacterial infection, thought it was just a kidney issue. Told them at ER that I cannot do a MRI laying flat, can’t breathe, after 3 hours of waiting they insist on doing it, I reminded them of my breathing, had me to sign a form stating that I refused treatment MRI. Always have an advocate, and know what they are planning to do.

    • #23625
      Brittany Foster
      Keymaster

      @jimi so I am guessing that you didn’t end up getting the MRI done? Is there another way to test for these things via bloodwork or ultrasound so that you don’t have to go through something that is so uncomfortable for you? Maybe you can get a chance to speak to a tech and your doctor before to see if there are any modifications for those that have trouble breathing. I am sure they have some type of way to prop you up. Not sure if that would ruin the MRI image or not though based on what they are looking to see. Glad you were able to advocate for yourself and your needs though. Sometimes that it half the battle is getting them to listen and believe us.

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