i realize this thread is pretty quiet, but i am wondering -- for those with confirmed constrictive pericarditis (or those who had surgery), how long did you have symptoms before your doctors were able to definitively diagnose this?
i am in my late 20's and have had systemic lupus since i was a teen. because of the lupus, i have had many bouts of pericarditis and pericardial effusions due to chronic inflammation. the effusions are not usually large, but they last a very long time and are difficult to get rid of. i am treated with a variety of immunosuppressants and steroids, but continue to have these problems most years.
somewhere around early 2010, i developed shortness of breath with exercise. i was previously a very active person and worked a job that was sometimes physically demanding -- that was part of the reason i started noticing the SOB. i struggled with extreme fatigue (more than i ever used to have from the lupus) and occasional dry cough with exercise or activity. i first saw a pulmonologist who ran a bunch of tests, but the only thing she could find was the small pericardial effusion. she ordered a cardiopulmonary exercise test at a very reputable research facility. i was told i did an excellent job (reached target heart rate and gave a very good effort), but i thought i was going to die! my pulmonologist's goal was to determine if my exercise was limited by the heart, lungs, or muscles...and apparently i had a low stroke volume that peaked extremely early into the exercise, which indicated constriction or restriction and suggested this was a cardiac problem of some sort.
was referred to a cardio for a heart cath, which ended up showing nothing of interest and did not show the pressures that would support a constrictive pericarditis diagnosis. later on, i was sent for more and more tests, including a cardiac MRI, another cardiopulmonary exercise test, and a heart cath with exercise. nothing definitive came from the MRI or other heart cath. after my pericardial effusion eventually cleared and heart chambers went back to normal size, i basically gave up on it all and stopped seeking answers. i adjusted to the SOB and moved on as best i could.
about
3 months ago, i noticed that my SOB and cough had gotten worse with exercise. i was having to stop exercising regularly because i felt like i couldn't breathe at all. my lupus has been out of control over the past 6 months or so -- i have had several rounds of IV steroids due to pleurisy and CNS problems (constant headaches, memory/cognitive problems, partial seizures). i have not had an echo in about
18 months and when i saw my cardio a couple months ago to check in about
some heart arrhythmias i've developed in the past year, she basically said i was good to go and that the arrhythmias are likely a result of all the irritation i've had to the pericardium over the years. at the time, i did not talk to her about
the increased SOB because it had just started and i wasn't sure if it was going to stick around.
i saw my pulmonologist recently to discuss the shortness of breath again as my out-of-state hospital (back home) had turned things around and suggested this was pulmonary...not cardiac. so i thought seeing the pulm was most appropriate and i thought i'd just be trying an inhaler again or something. anyway, she told me this is NOT asthma or reactive airways and that she still thinks constrictive pericarditis is a likely diagnosis given my history. she brought up the low stroke volume from 2010 and said that even though my other tests didn't confirm it, that it is an extremely difficult diagnosis to make and that tests often don't confirm it until it is severe enough to affect pressures and such.
she suggested that we i wait it out longer. she said we could set up another cardiopulmonary exercise test to compare the stroke volume and see if it has decreased from the one in 2010, but ultimately, that i would have to wait it out, probably adjust to more and more SOB, and eventually get another heart cath when it feels severe enough that we think the pressures might support the diagnosis.
because of this "wait it out" thing, i'm feeling really helpless and i feel like i'm watching my life go down the tubes. it has been about
3 years of dealing with the shortness of breath with exercise, but i'm getting the sense that i need to struggle with walking around my apartment or something rather than walking around the block.
so i guess my questions are...could this take several years to get to the point where they will diagnose it? is there anything i can do to get a quicker diagnosis or is waiting it out the best solution? i do NOT want to go through all the testing that i went through in 2010/2011 if it's just going to be normal again, but i also want to do everything i can to get back on track. i am unable to work (not just because of the SOB, but mostly because of my fatigue...which i presume is from the lupus, but like i said, it is unusually high for me and is constantly there even when i am not flaring). i struggle with tachycardia a lot now and basic tasks (like cleaning) often leave me feeling winded. i do recover from it though...it is just a matter of time. i do not have any noticeable edema and my pulmonologist did not hear any weird sounds in my lungs/heart.
thanks all. just trying to make sure there isn't an avenue i haven't tried already. if waiting is truly the answer here, i won't be surprised...i just hate that i've lost 3 years already and i imagine i might have several more to go before anything definitive happens. i should perhaps mention that at least 3 doctors (1 pulm and 2 cardios, including a cardio at a large university) are all concerned that this is the diagnosis we're looking at....there just isn't enough info to truly confirm it.
thanks!
Post Edited (taiga) : 12/6/2012 5:44:55 AM (GMT-7)