Hello my name is Dave I'm new here so bare with me. I was diagnosed with Pulmonary Hypertension on Feb 17,2017 I have had a lot of heart health issues since birth. (oh by the way I'm 62 years young) I'm just looking for someone to I can relate to. Thanks
@maryd It wouldn't hurt to request a sputem test. Tell your doctor that you'd like to rule out mac or pseudomonas. Most private practice doctors don't ever think to test for that. Some cases of mac have no symptoms at all. What just caught my attention is when you mentioned odd sensations in your chest. I was dagnosed in 2005 with MAC. But before I was diagnosed (it took 5 months for doctors to figire out what I had) I complained when I first started feeling bad; that I had odd sensations in my chest. I told them that it felt like many little flowers were blooming inside my lungs. They said they had never heard of that before. When I felt that, I instintively knew something was very wrong. I feel certain I caught mine from our outdoor hot tub. We were in it every night. That was in 2005. I had fevers and night sweats. I still have night sweats, but it could also be post menopause. The 'BIG 3' we fondly use to refer to the 3 antibiotics cocktail that most doctors like to prescribe to eradicate mac. I capitalize the word 'BIG' because some of the drugs can be hard to tolerate and are also toxic for the body. I have read that rifampin, and ethambutol can be brutal for some. My O2 sats used to stay at 90-91 and drop to 84 when I'd walk. They were that low from 2002 until 2012. Couldn't walk 20 feet without having to stop and catch my breath. That was when I lived in Tucson at a much higher elevation. I moved to the S.C. coast, now at sea level in 2012. My sats improved to 94. Then I sought treatment at Mayo in 2013 to the present and my sats are now at 97! It is something I never thought I'd see. I did work to get it to this point. I was consistant with my meds, took yoga classes, chi quong, take one hour cardio class 3x week, ride my bike frequently, walk 30 mins in the a.m. as well as p.m. It is beautiful here with miles of flat bike trails so it it conducive to wanting to exercise. Hopefully, I have answered all of your questions. It is not all rosey though. I still get very short of breath and fatigued. Regular exercise actually helps with those two things.
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@maryd It wouldn't hurt to request a sputem test. Tell your doctor that you'd like to rule out mac or pseudomonas. Most private practice doctors don't ever think to test for that. Some cases of mac have no symptoms at all. What just caught my attention is when you mentioned odd sensations in your chest. I was dagnosed in 2005 with MAC. But before I was diagnosed (it took 5 months for doctors to figire out what I had) I complained when I first started feeling bad; that I had odd sensations in my chest. I told them that it felt like many little flowers were blooming inside my lungs. They said they had never heard of that before. When I felt that, I instintively knew something was very wrong. I feel certain I caught mine from our outdoor hot tub. We were in it every night. That was in 2005. I had fevers and night sweats. I still have night sweats, but it could also be post menopause. The 'BIG 3' we fondly use to refer to the 3 antibiotics cocktail that most doctors like to prescribe to eradicate mac. I capitalize the word 'BIG' because some of the drugs can be hard to tolerate and are also toxic for the body. I have read that rifampin, and ethambutol can be brutal for some. My O2 sats used to stay at 90-91 and drop to 84 when I'd walk. They were that low from 2002 until 2012. Couldn't walk 20 feet without having to stop and catch my breath. That was when I lived in Tucson at a much higher elevation. I moved to the S.C. coast, now at sea level in 2012. My sats improved to 94. Then I sought treatment at Mayo in 2013 to the present and my sats are now at 97! It is something I never thought I'd see. I did work to get it to this point. I was consistant with my meds, took yoga classes, chi quong, take one hour cardio class 3x week, ride my bike frequently, walk 30 mins in the a.m. as well as p.m. It is beautiful here with miles of flat bike trails so it it conducive to wanting to exercise. Hopefully, I have answered all of your questions. It is not all rosey though. I still get very short of breath and fatigued. Regular exercise actually helps with those two things.