IronmaninTraining
Active member
First I'd like to say this is a great community. Since finding out a change in my bicuspid aortic valve its been a roller coaster and this site has helped with some of my fears.
I am 28 years old and when I was younger they noticed a heart murmur and later found out I had a bicuspid aortic valve.
I am really into running (since I found out about my valve I stayed away from lifting...used it as a way to get out of things sometimes lol) and recently have wanted to do a Ironman (note my name). I took a couple years off from my yearly doctors visit and with my goal of completing an ironman I went back to see my pediatric cardiologist in Oct 2013 (my wife was concerned after someone died at the Pittsburgh Marathon last year with a heart issue). It was a tough moment for me to hear from the doctor that there was a change (more of a leak resulting in larger ventricle) and that she would like me to see a adult congenital cardiologist at the Children s hospital of Pittsburgh.
Since my appointment in October I had a MRI (since I hate needles having a catheter for over 2 hours was not the greatest experience) and my latest office visit in April where we found my ventricle enlarged by 4mm.
With that said I am now meeting with the surgeon in the next two weeks and have a surgery date of July 1st.
My pre-surgery has been a roller coaster ride like I mentioned earlier. I go from days ready to tackle this problem to days where I just feel down and out worrying about the horrible experience that is coming. Alot of this deals with my valve selection that I'll hit next.
Valve selection
Ross..
At first the Ross procedure seemed like the only one for me. Being 28 and having no blood thinners for life seemed great. Being the engineer I started looking at all the stats regarding the Ross procedure and reop concerns I became very worried. Is going with the ross procedure really worth messing with more than necessary? It makes me hesitant when I think about it. However, I still look at the ross since I do like socially drinking and sometimes from time to time I have more than is necessary. I know this shouldn't be an issue, but I don't do anything else bad and drinking some beers on a weekend is a way to relax. In a way I look at blood thinners as a end to one of my guilty pleasures.
Mechanical...
I am very impressed with the On-x valve and the prospect of low anti coagulation (PROACT) and if I did go this route I would hope I could participate as I feel I would be in the lowrisk arm of the trial. Again I don't fully know how a baby aspirin and plavix a day would have a impact on my life (I would think very little). Also, I worry a little bit about the sound of a mechanical valve...I think I can move past it as it will mean mine hearts ticking after a while.
Tissue...
I don't really look at this as an option (never presented by the cardiologist) given my age and concern that my training or day to day life may impact the life of a tissue valve. Plus after having a OHS I wouldn't want a reop in the current span of tissue valves.
My final point is post surgery from my MRI comment you can probably surmise that I have a low pain tolerance (sometimes I think I do whine just to milk it for the wife). I'm very concerned about the level of pain and the several days in the hospital being hooked up with multiple things such as the chest tubes (probably my biggest concern). Is it really that bad? Can you relate the level of pain to anything? Do the meds really cover up all the pain?
Overall I know this is something in my life that I need to hit head on and be positive. Everything happens for a reason and after this I will be able to tackle all my goals. Writing this helped me vent some of my concerns and I hope that some of you can shed light on my thread.
Also if anyone has any experience with Children s Hospital of Pittsburgh I would be interested in their story.
I am 28 years old and when I was younger they noticed a heart murmur and later found out I had a bicuspid aortic valve.
I am really into running (since I found out about my valve I stayed away from lifting...used it as a way to get out of things sometimes lol) and recently have wanted to do a Ironman (note my name). I took a couple years off from my yearly doctors visit and with my goal of completing an ironman I went back to see my pediatric cardiologist in Oct 2013 (my wife was concerned after someone died at the Pittsburgh Marathon last year with a heart issue). It was a tough moment for me to hear from the doctor that there was a change (more of a leak resulting in larger ventricle) and that she would like me to see a adult congenital cardiologist at the Children s hospital of Pittsburgh.
Since my appointment in October I had a MRI (since I hate needles having a catheter for over 2 hours was not the greatest experience) and my latest office visit in April where we found my ventricle enlarged by 4mm.
With that said I am now meeting with the surgeon in the next two weeks and have a surgery date of July 1st.
My pre-surgery has been a roller coaster ride like I mentioned earlier. I go from days ready to tackle this problem to days where I just feel down and out worrying about the horrible experience that is coming. Alot of this deals with my valve selection that I'll hit next.
Valve selection
Ross..
At first the Ross procedure seemed like the only one for me. Being 28 and having no blood thinners for life seemed great. Being the engineer I started looking at all the stats regarding the Ross procedure and reop concerns I became very worried. Is going with the ross procedure really worth messing with more than necessary? It makes me hesitant when I think about it. However, I still look at the ross since I do like socially drinking and sometimes from time to time I have more than is necessary. I know this shouldn't be an issue, but I don't do anything else bad and drinking some beers on a weekend is a way to relax. In a way I look at blood thinners as a end to one of my guilty pleasures.
Mechanical...
I am very impressed with the On-x valve and the prospect of low anti coagulation (PROACT) and if I did go this route I would hope I could participate as I feel I would be in the lowrisk arm of the trial. Again I don't fully know how a baby aspirin and plavix a day would have a impact on my life (I would think very little). Also, I worry a little bit about the sound of a mechanical valve...I think I can move past it as it will mean mine hearts ticking after a while.
Tissue...
I don't really look at this as an option (never presented by the cardiologist) given my age and concern that my training or day to day life may impact the life of a tissue valve. Plus after having a OHS I wouldn't want a reop in the current span of tissue valves.
My final point is post surgery from my MRI comment you can probably surmise that I have a low pain tolerance (sometimes I think I do whine just to milk it for the wife). I'm very concerned about the level of pain and the several days in the hospital being hooked up with multiple things such as the chest tubes (probably my biggest concern). Is it really that bad? Can you relate the level of pain to anything? Do the meds really cover up all the pain?
Overall I know this is something in my life that I need to hit head on and be positive. Everything happens for a reason and after this I will be able to tackle all my goals. Writing this helped me vent some of my concerns and I hope that some of you can shed light on my thread.
Also if anyone has any experience with Children s Hospital of Pittsburgh I would be interested in their story.