djteako
Member
Hi everyone . I've been on here a few weeks now , and have made a few posts around here , and just thought I should share my story , well the condensed version . First , from and still live in Alberta , Canada .
I Was born oct . 1971 , and diagnosed with aortic stenosis within 3 days . I was moitored yearly by my pediatric cardiologist in edmonton yearly . As symtoms got slowly , but progressively worse , I had a Cardiac cath just before my 10th birthday , It was decided intervension was nessecary and was done a couple of weeks later . It was discovered in that surgery(valve repair) that I actually had BAV . The surgeon modified the valve and turned it into a tri-cuspid valve . It was a very rushed operation , less than 4 hours in total . The repair leaked right from the start .
They continued to moitor me , much closer , until about 1985 , when it got bad enough that I could barely walk a block , and my heart had enlarged to pretty much the whole size of my chest . I was put on the surgery wait list , because at that time Edmonton didn't have a pediatric cardiac surgeon . There was talk of sending me to Toronto , but luckily , one came along in early 1986 .
On may 14 , 1986 , I was wheeled into the or at about 5:30 am for a valve replacement . I was given a choice of mechanical or tissue , and I chose the mechanical . I woke up aprox. 6 pm that evening , 1/2 hour out of surgery !! The proud ne owner of a Bjiork-shilley 21mm aortic valve , a dacron pericardial sac , and the standard gortex sternum patch . I was told there were many complications in the surgery , mostly due to scar tissue from the rushed first one , hence why they had to fabricate and replace the pericardial sac ( kudo's to Dr. penkowski , as this is something that is rarely done , esspecially back then ) As well , I was on the bypass machine for exactly 5 minutes less than the maximum aloted time , as they had difficulties geting me re-started!!
I was told to expect to be re-op'ed in 10-15 years , as I would outgrow the 21mm valve . Of course , I went through a massive growth spurt immediately .
I remained symptom free (pretty much) right up until about 6 years ago , when I started noticing that I was loosing energy . At that time , I had no cardiologist , as mine had retired with no notice to me ,and the hospital seemed to have lost my file for a while !!! (long story , good for another thread !!!!) I had always questioned my cardiologist about the 10-15 year re-op , and was never really given a straight answer until 1998 , when I was in hospital for wisdom teeth removal (yet another horror story) and they noticed some strange sounds in my murrmer . It was during all that round of tests that I demanded a straight answer from my cardio , and she finally told me , that due to my history , and the complications of my last surgery (my cardio was also in on my last surgery , as the respiratory tech at the time ) They would not do another surgery unless it was an absolute emergency , as my chances of coming out of it were not great .
So jumping back to present time , I finally got hooked up with a new cardiologist and saw her for the first time in Feb. 2010 . She wasn't too happy with what she first saw , and in the last year and a half , I have had almost every test imaginable , less the MRI ,which they wanted to do , but I couldn't have done (another story) They have determined I have definately outgrown my valve , my aorta has swelled to 47mm and there is a possible aortic anurysm right by my valve , so its time for surgery .
I have raised my concerns regarding what I was told and what my file says , regarding another surgery , and disscussed it with my surgeon . He is very confident that it will be fine , as the advances in drugs and technology are amazing from what they were even 10 years ago .
My last test done was the pre op cath , on july 12th . I will be going under the knife on August 17th . and coming out a proud owner on an On-X valve (my choice) and new piece of aorta .
My surgeon has done about 100 cases exactly like me , and one of his areas of specialty is adult congenital patients . So I am very confident in him .
So thats the majority of my sory in a nut shell . I'll be around here off and on until August 14 , when I am addmitted to hospital . Then hopefully it will be on to the Post op thread !!!
I Was born oct . 1971 , and diagnosed with aortic stenosis within 3 days . I was moitored yearly by my pediatric cardiologist in edmonton yearly . As symtoms got slowly , but progressively worse , I had a Cardiac cath just before my 10th birthday , It was decided intervension was nessecary and was done a couple of weeks later . It was discovered in that surgery(valve repair) that I actually had BAV . The surgeon modified the valve and turned it into a tri-cuspid valve . It was a very rushed operation , less than 4 hours in total . The repair leaked right from the start .
They continued to moitor me , much closer , until about 1985 , when it got bad enough that I could barely walk a block , and my heart had enlarged to pretty much the whole size of my chest . I was put on the surgery wait list , because at that time Edmonton didn't have a pediatric cardiac surgeon . There was talk of sending me to Toronto , but luckily , one came along in early 1986 .
On may 14 , 1986 , I was wheeled into the or at about 5:30 am for a valve replacement . I was given a choice of mechanical or tissue , and I chose the mechanical . I woke up aprox. 6 pm that evening , 1/2 hour out of surgery !! The proud ne owner of a Bjiork-shilley 21mm aortic valve , a dacron pericardial sac , and the standard gortex sternum patch . I was told there were many complications in the surgery , mostly due to scar tissue from the rushed first one , hence why they had to fabricate and replace the pericardial sac ( kudo's to Dr. penkowski , as this is something that is rarely done , esspecially back then ) As well , I was on the bypass machine for exactly 5 minutes less than the maximum aloted time , as they had difficulties geting me re-started!!
I was told to expect to be re-op'ed in 10-15 years , as I would outgrow the 21mm valve . Of course , I went through a massive growth spurt immediately .
I remained symptom free (pretty much) right up until about 6 years ago , when I started noticing that I was loosing energy . At that time , I had no cardiologist , as mine had retired with no notice to me ,and the hospital seemed to have lost my file for a while !!! (long story , good for another thread !!!!) I had always questioned my cardiologist about the 10-15 year re-op , and was never really given a straight answer until 1998 , when I was in hospital for wisdom teeth removal (yet another horror story) and they noticed some strange sounds in my murrmer . It was during all that round of tests that I demanded a straight answer from my cardio , and she finally told me , that due to my history , and the complications of my last surgery (my cardio was also in on my last surgery , as the respiratory tech at the time ) They would not do another surgery unless it was an absolute emergency , as my chances of coming out of it were not great .
So jumping back to present time , I finally got hooked up with a new cardiologist and saw her for the first time in Feb. 2010 . She wasn't too happy with what she first saw , and in the last year and a half , I have had almost every test imaginable , less the MRI ,which they wanted to do , but I couldn't have done (another story) They have determined I have definately outgrown my valve , my aorta has swelled to 47mm and there is a possible aortic anurysm right by my valve , so its time for surgery .
I have raised my concerns regarding what I was told and what my file says , regarding another surgery , and disscussed it with my surgeon . He is very confident that it will be fine , as the advances in drugs and technology are amazing from what they were even 10 years ago .
My last test done was the pre op cath , on july 12th . I will be going under the knife on August 17th . and coming out a proud owner on an On-X valve (my choice) and new piece of aorta .
My surgeon has done about 100 cases exactly like me , and one of his areas of specialty is adult congenital patients . So I am very confident in him .
So thats the majority of my sory in a nut shell . I'll be around here off and on until August 14 , when I am addmitted to hospital . Then hopefully it will be on to the Post op thread !!!
