-
Question about Symptoms – being considered for PAH
Hi everyone and thanks for allowing me to join this forum!
I apologize for the lengthy post – I have access to medical journals and have read as much as I can about my test results/symptoms but I’ve learned as a result of some other cardiac conditions that advice and guidance from patients is usually the best!
I’m a 35 yr old female and have regular echos done as I had my pericardium removed following lengthy pericarditis. Prior to the pericarditis, like many of you, I was very active, mountain biked, hiked etc. I’m now 2.5 years post surgery. 1.5 years ago I was able to bike up dirt trails and hike up mountains…but that’s since changed.
My echo in May showed a PASP of 40mmHg. This alone wouldn’t have concerned me but by that point I was finding myself more SOB with exercise – I thought it was just poor fitness as it was occurring only with exercise like biking and hiking and I blamed myself for not getting in shape enough following my surgery.
I had an appointment at a PH clinic in August but because I could still hike and bike (though I was going much slower and stopping much more due to the SOB) it was suggested it was a minor lung problem or insignificant (that echo showed PASP of 31). Come September, we went for a bike ride with my 65-year-old father on an easy trail. I used to be able to ride 40km up mountains but on that ride I was so SOB and so far behind my dad, I kept stopping to pretend I was looking at things so he didn’t notice my breathing. By the fall I started to notice SOB with regular activities such as getting winded with bringing in a bag of groceries from the car to the house (not a long driveway). Now I’m SOB if I walk up more than 1 flight of stairs. My pulmonary function test this fall was completely normal.
My echo at the end of October showed a normal PASP (29), but stated it may be underestimated because I have incomplete tricuspid regurgitation. Concerningly, the echo report said I had “right ventricular reduced global systolic function” with a TAPSE of 12mm. Most of my Drs response was “this can’t be”, “this doesn’t make sense” and ordered a follow up echo for the end of April. (previous right ventricular function has always been described as normal in my echos).
Their hope was that my exercise capacity would increase if they adjusted my pacemaker settings (I had a pacemaker put in 4 years ago….) But two stress tests later show that my exercise capacity keeps reducing (I had to stop early due to significant SOB both times), and the pacemaker is adjusting my heart rate appropriately. My BP does not drop with exercise.
I’m also fatigued….all the time and have regular naps (and I *always* fall asleep after activity). I’m still trying to do as much activity as I can but it’s exhausting and getting harder. I used to be able to do a 1 hour gym workout. Now if I have to stop after 20 squats with a 10lb ball because I’m so SOB.
I’ve read the journal articles about the echo results and I’m probably equally at fault as my Drs for hoping there’s an easy fix here….I also know that the average patient is diagnosed 2 years after their symptoms start and that time to diagnosis = significantly better outcomes…BUT you are the true experts here…
I have a follow-up appointment at the same PH clinic in 2 weeks. There they’ll do another echo and 6-minute walk test and I meet with the same Dr. I’m concerned if the echo shows a normal PASP he may discount my symptoms despite them worsening since I last saw him. My question is, does this story sound familiar or am I looking in the wrong place? Am I way out of line to think that PAH is a possible differential or does my story not sound in line with your own experiences…
Log in to reply.