• Ellen Johnson became a registered member 3 months ago

    • Hi Ellen,
      I wanted to welcome you to the forums. I see that you are a PH patient. I hope that the therapies have been helping with some of your symptoms. How long ago were you diagnosed? What symptoms were you experiencing that led you to seek out a diagnosis? I am one of the forum moderators here and also have PH due to underlying conditions of my central nervous system and congenital heart disease. Looking forward to having more conversations here!
        • Dear Brittany, Thank you for responding. My PH may be due to my other diagnosis,Myelodysplastic Syndrome (bone marrow cancer). I also have regurgitation from all heart valves. I have chest pain,weakness and fatigue. I don’t tolerate heat well. I was diagnosed from a heart cath last month. Am not receiving any therapies so far. I asked if I could get some oxygen for comfort and so I would not have to take nitro so often. Was told my O2 level was not low enough for Medicare to pay for it. I am very new to dealing with this situation and am trying to learn all I can so I don’t do something to make it worse. Any help or advice would be appreciated. Thanks for answering. Ellen
        • Welcome Ellen to the PH Forums! I read in your profile that you were just diagnosed with PH and have co-existing conditions. You probably feel overwhelmed but I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany, know if you have an questions while using the forums or if you have any topics that you would like to discuss. I look forward to learning more about your personal journey.
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