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Intro/questions about diagnosis/questions about IPAH
Hi everyone!
I hope it’s okay to post here. I have not been diagnosed with PAH, but I have some questions and health concerns.
My mother was diagnosed with PPH (now, IPAH) after she had me via c-section. My dad says that looking back, there are signs she was sick before pregnancy. She had one of the first heart and lung transplants in Birmingham. She lived for 9 years and died at age 44. I was 11.
I am having trouble having a second child and my fertility specialist sent me to a high risk doctor due to my family history and some symptoms I’m having. The high risk doctor wants me to see a cardiologist. I’ve never been able to withstand much exercise. I remember sitting out of PE as a child and the teacher mocking me. I can go for walks, but getting out of breath burns, my vision blurs, I get very dizzy. I have dizzy episodes when I get up too fast, and I cannot kneel in church without getting out of breath and dizzy. I’m also very tired and sleep most of the day without an adhd medication.
Anyway, that all does not look good when I write it out, and I have been avoiding the doctor. I rescheduled the high risk doctor three times.
I got my mom’s records from one hospital, but I am trying to get her records from the hospital that did her transplant. I want to know what the pathology report said about her organs, and I want to know if they did genetic testing.
I have a few questions, and I would really appreciate hearing about your experience and any other suggestions you might have.
Did you have a tough time doing PE in school? Did your lungs burn and have stabbing pain when you did over exert yourself?
Did you have dizzy or SOB spells related to different postures—kneeling in church, sitting up straight, etc…
Did you have times where your vision narrows and you feel light headed?
Extreme tiredness?
Did anyone in your family have PAH?
Knowing what you know now, how would you recommend that someone get screened/tested.
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4 Replies
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Wow, thank you for sharing your story! How scary to be having similar symptoms that your mother experienced. I can definitely relate to everything you’ve described. I’m post-heart-lung transplant now, but always sat out for PE. When I tried to run with the other kids my lungs burned and felt tight and I could never really catch my breath. Now that I have healthy lungs I know how different it feels. I was dizzy a lot, and felt lightheaded bending down to touch my toes etc. If I over-exerted I’d sometimes get a rushing sense in my ears as well as vision problems occasionally. No one in my family had PH, but there are cases where it is hereditary (still a lot we don’t know about all the different kinds of PH).
You should start with seeing a cardiologist and getting an echocardiogram. Earlier diagnosis is always better. There are a lot more treatments available now than there were when your mother was diagnosed (it’s possible there weren’t any when she was diagnosed actually), and even more now than there were 5 years ago. It’s not a death sentence. Get tested, hope for the best, and know that if you do have PH, the treatments will help you feel better!
Thank you so much for sharing, and please keep us updated.
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Hi Jondi,
Thank you for sharing your story with us. I agree with what Kathleen is saying. Definitely follow up with a cardiologist and I’m sure they will run some tests on you, especially given your symptoms and family history. I know that PH can be genetic and it would be best to get as much info as possible on your mom and her diagnoses. The more info the doctor has regarding family history, the better!I also experienced all of the symptoms that you did. I never knew how bad my lungs burned and how much it truly impacted me. I always had something to blame it on. I played ice hockey so sometimes i would try to shrug it off as “just being cold air” but deep inside I knew it was more than that. My first testing I had was an exercise stress echocardiogram, and a chest CT and pulmonary function test. I was diagnosed as having exercise induced asthma but now have been told that it wasn’t asthma and the inhalers only gave me a racing heart.
I can’t stress how important early diagnosis is enough! You have to be honest and be your own advocate and try to catch this as early as possible. It seems like you are doing all the right things. Please keep us posted!
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I may not be posting this question in the correct forum. My brain’s a little foggy now. I see a cardioligist who found the PH and is finding/ diagnosing other heart problems. I have had PEs before. At what point should I find a Pulmonologist or PH specialist? I am symptomatic and impatient. Thoughts? Thank you
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Hi! I also have a heart condition (congenital heart disease) and I am followed by a cardiologist and a PH specialist and regular pulmonologist. I think it would be best to ask your cardiologist who they would recommend because it would be important that they work together to find the best treatment options for you. Have you had a right heart cath that diagnosed your PH or was it suspected after doing an echo of the heart? Either way, I would be seen my a PH specialist too so they could recommend any necessary lung related testing and work as a team with your cardiologist.
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