Hello,
I've been posting in the past few weeks and rudely, did not introduce myself.
I am the wife (buddy) of one of the most wonderful men on the face of this planet. He happens to have a BAV AS. This is our story:
Over 30 years ago, as a young inexperienced nurse (in my previous life), I heard a loud murmur in my husband's chest. He was sent for an echo, and everything was "perfect". We were given the green light to do any activity he wanted to. And boy, did we push the extreme adventures and exercises back then. Heavy canoeing/portaging along rugged cliffs, canoeing 8 - 9 hours daily against strong currents, and so the story goes. He played very competitive basketball between ages 16 - 28. (And he was awesome!!!!
)
10 years ago, an incidental finding on an echo revealed BAV with moderate aortic stenosis. He received an echo every 3 years (cardio's recommendation) since then from 2002 - 2008, with no change. AVAs 1.0 - 1.1 cm2, mild increase in pressure gradients, insignificant aortic and mitral regurg, no aortic dilation/aneurysm and no ventricular hypertrophy. For this last check up, we had left it a bit long and didn't go for our 3 year check-up, and instead went in 4 years. Life got in the way, and it was very difficult fly down to Vancouver at that time. (We live in the beautiful boonies).
For our regular cardio check-ups, we would either have to do an 18 hour drive to Vancouver or a 2 hour flight to this location. While there, he would have his exercise stress test, echo, and an appointment with the cardiologist all on the same day because we lived way out of town. The cardiologist (who is the head of the department at the hospital) is the one who would read the echo and would give us the low down at that time. The echos were done by very experienced technicians in Vancouver.
A few years ago, a cardiologist moved to a town 4 hours away from us, and technicians were also starting to do portable echos in our own home town at the same time. We thought, gee. This is much more convenient than flying or driving to Van. So my husband had a portable one done with a newbie tech at the end of April. When my husband told me how it was done and what the fellow said, I was mortified. First, the tech reprimanded my husband for not having come in sooner and not having the test done every year. The yearly time-frame has never been our cardiologist's recommendation. However, I wouldn't have minded being reprimanded by a cardiologist, but not by a tech who has no business making a comment like that. My husband then asked the tech after the procedure was over, about the measurements I had asked him to obtain. The tech told him that he didn't know the measurements and that he would have to calculate them. He then told my husband that "of course it is going to be worse". A tech telling him that? I was very PO'd. The way the test was done was also very different than usual, my husband told me.
That particular echo done in April, got read by a radiologist in the town 4 hours away, not the cardiologist. It didn't even have aortic diameter measurements on the report to see if there was any problem with dilation or aneurysm.
So we got the results from our GP and we read some things that shocked us. Significant left atrial dilatation (56 mm), left ventricular hypertrophy, elevated pressure gradients (peak 63 mm Hg and mean 36 mm Hg), and an AVA of 0.9 cm2.
Well, we started to freak out a little and went straight back to our GP to get a referral ASAP to our usual cardio in Vancouver to get retested on the equipment we have used for the previous results.
We have kept our appointment with the cardio 4 hours away for next week, and for the cardio in Van 2 months from now.
We are on pins and needles. Do we stop playing basketball? (we've both been playing together for the past 35 years) Are we going to have to stop snowboarding? (we've both been doing this on very gentle slopes for the past 6 years) When will surgery be recommended? Are all the anxiety symptoms he has been experiencing (only since the reading of the echo report) related to his head space or to his heart defect?) Does he have an aneurysm/dilation now? Will we need to have an echo every 6 months or every year now? What is the mortality risk of sudden death if we keep playing basketball (it's co-ed basketball so that should tell you the level of competition now at 53 years of age ) and the questions go on and on and on and on in my head.
We were really hoping beyond hoping, that by the time he needed an AVR, TAVIs would be commonplace as a first line surgical option (not just for a re-op). Apparently the hospital in Van that my husband is being monitored at has pioneered this procedure.
http://www.vchri.ca/s/NewsReleases.asp?ReportID=506189
We'll feel lots better after the end of July when we get all the info in and are able to make definitive plans for my husband's health. He is getting the echo repeated in Vancouver and is also having his usual every 3 year stress test.
Thanks for letting me spew.
I just want to say thank you so much to all of you. To the geniuses and well-researched people on this site - your knowledge blows me away. To those who have the courage to post their emotions and fears - thank you, because it has helped me not to feel so alone. To all of the jocks on this site - thank you, because you show us what is possible. To the fearless on this site - thank you, because it helps me regain perspective: this is a potentially life threatening illness WITH a solution (unlike so many diseases), and To Paleogirl, thank you for our very small DIY experiment for two.
That's it. All and any input is always appreciated.
I wish all of you the very best.
Regards,
A very anxious Bicuspid Buddy
I've been posting in the past few weeks and rudely, did not introduce myself.
I am the wife (buddy) of one of the most wonderful men on the face of this planet. He happens to have a BAV AS. This is our story:
Over 30 years ago, as a young inexperienced nurse (in my previous life), I heard a loud murmur in my husband's chest. He was sent for an echo, and everything was "perfect". We were given the green light to do any activity he wanted to. And boy, did we push the extreme adventures and exercises back then. Heavy canoeing/portaging along rugged cliffs, canoeing 8 - 9 hours daily against strong currents, and so the story goes. He played very competitive basketball between ages 16 - 28. (And he was awesome!!!!
)10 years ago, an incidental finding on an echo revealed BAV with moderate aortic stenosis. He received an echo every 3 years (cardio's recommendation) since then from 2002 - 2008, with no change. AVAs 1.0 - 1.1 cm2, mild increase in pressure gradients, insignificant aortic and mitral regurg, no aortic dilation/aneurysm and no ventricular hypertrophy. For this last check up, we had left it a bit long and didn't go for our 3 year check-up, and instead went in 4 years. Life got in the way, and it was very difficult fly down to Vancouver at that time. (We live in the beautiful boonies).
For our regular cardio check-ups, we would either have to do an 18 hour drive to Vancouver or a 2 hour flight to this location. While there, he would have his exercise stress test, echo, and an appointment with the cardiologist all on the same day because we lived way out of town. The cardiologist (who is the head of the department at the hospital) is the one who would read the echo and would give us the low down at that time. The echos were done by very experienced technicians in Vancouver.
A few years ago, a cardiologist moved to a town 4 hours away from us, and technicians were also starting to do portable echos in our own home town at the same time. We thought, gee. This is much more convenient than flying or driving to Van. So my husband had a portable one done with a newbie tech at the end of April. When my husband told me how it was done and what the fellow said, I was mortified. First, the tech reprimanded my husband for not having come in sooner and not having the test done every year. The yearly time-frame has never been our cardiologist's recommendation. However, I wouldn't have minded being reprimanded by a cardiologist, but not by a tech who has no business making a comment like that. My husband then asked the tech after the procedure was over, about the measurements I had asked him to obtain. The tech told him that he didn't know the measurements and that he would have to calculate them. He then told my husband that "of course it is going to be worse". A tech telling him that? I was very PO'd. The way the test was done was also very different than usual, my husband told me.
That particular echo done in April, got read by a radiologist in the town 4 hours away, not the cardiologist. It didn't even have aortic diameter measurements on the report to see if there was any problem with dilation or aneurysm.
So we got the results from our GP and we read some things that shocked us. Significant left atrial dilatation (56 mm), left ventricular hypertrophy, elevated pressure gradients (peak 63 mm Hg and mean 36 mm Hg), and an AVA of 0.9 cm2.
Well, we started to freak out a little and went straight back to our GP to get a referral ASAP to our usual cardio in Vancouver to get retested on the equipment we have used for the previous results.
We have kept our appointment with the cardio 4 hours away for next week, and for the cardio in Van 2 months from now.
We are on pins and needles. Do we stop playing basketball? (we've both been playing together for the past 35 years) Are we going to have to stop snowboarding? (we've both been doing this on very gentle slopes for the past 6 years) When will surgery be recommended? Are all the anxiety symptoms he has been experiencing (only since the reading of the echo report) related to his head space or to his heart defect?) Does he have an aneurysm/dilation now? Will we need to have an echo every 6 months or every year now? What is the mortality risk of sudden death if we keep playing basketball (it's co-ed basketball so that should tell you the level of competition now at 53 years of age
) and the questions go on and on and on and on in my head.We were really hoping beyond hoping, that by the time he needed an AVR, TAVIs would be commonplace as a first line surgical option (not just for a re-op). Apparently the hospital in Van that my husband is being monitored at has pioneered this procedure.
http://www.vchri.ca/s/NewsReleases.asp?ReportID=506189
We'll feel lots better after the end of July when we get all the info in and are able to make definitive plans for my husband's health. He is getting the echo repeated in Vancouver and is also having his usual every 3 year stress test.
Thanks for letting me spew.
I just want to say thank you so much to all of you. To the geniuses and well-researched people on this site - your knowledge blows me away. To those who have the courage to post their emotions and fears - thank you, because it has helped me not to feel so alone. To all of the jocks on this site - thank you, because you show us what is possible. To the fearless on this site - thank you, because it helps me regain perspective: this is a potentially life threatening illness WITH a solution (unlike so many diseases), and To Paleogirl, thank you for our very small DIY experiment for two.
That's it. All and any input is always appreciated.
I wish all of you the very best.
Regards,
A very anxious Bicuspid Buddy
