A question regarding my operation

[Cecily]

Maybe you guys can help me. I will be seeking a second opinion on what happened to me but thought I might get some info from you. I was going to get a new pv. During the operation they ran into my coronary artery (displaced artery) I went into cardiac arrest and they could not give me my pv or maze procedure. What they did do was connect the main pulmonary artery and the right ventricle outflow tract. I has been about seven months and I do feel a little better sleep wise but I cannot exercise get winded easily and have some dizzy spells. I am having to give up my work because it involved exercise. How long can I live with my pv valve still reguritating. any info would be appreciated. Cecily

 

[Cecily]

Me again, one of the questions I forgot to ask was what does connecting the pv artery to the right ventricle outflow tract do? I know you probably don't know just thought I would ask. thanks

 

[Lynlw]

I may be off here BUT

I may be off here BUT

I may not be reading this right , BUT if I am I believe your heart may now be similar to Justin's, he had a rastelli procedure and part of that is , his pulm artery inside his heart was too narrow to the blood to get thru and his pulm valve was closed, they put an conduit(tube) from his right ventricle outside his heart that takes the blood to the pulmonary artery, the conduit is his right ventricle outflow tract.
since this RVOT bypassed the pulm artery/valve inside his heart, and I am guessing in your case, how the origonal pulm valve worked really isn't an issue.
I would ask if you have a conduit for a RVOT and if you do if it is a valved or not valved conduit. Justin had a conduit w/out a valve from the time of his rastelli at 18 months in 89 until this past spring when his conduit was replaced and he got a valved conduit. his new conduit should last about 15 years, then probably will need to be replaced, hopefully at that time his wil get a conduit made/grown from his own stem cells so that would not be replaced again. Lyn www.caringbridge.org/nj/justinw

 

[PJmomrunner]

Cecily, I would want an explanation of the "before and after" of what your heart looks like and how it connects to your vasculature...what they expected, what they found, what they did, how you can expect it to help, and what else they think they'll have to do. It does sound like Lynn's on the right track, but I don't understand why they didn't know where to find your coronary arteries before they opened you up...was it an emergency surgery???

 

[Lynlw]

I'm curious, were you born w/ a CHD? was this your first heart surgery or have you had a few? Lyn

 

[Cecily]

Yes lyn in on the right track. I will email her. My coronary artery is not in the same place as everyone elses. This information was given to them in a report I gave to them of my second surgery 30 years ago.( ihave congential heart problems). I don't believe the surgeon read the report or he would not have plowed into my artery. I do have a valve on the conduit. But like I said it is not working well. I cannot execise at all with out my heart beating rapidley.I believe because ran into the artery they had to do this conduit. Idid have a kink in my right coronary artery. He said that may open up in time. I really should get a second opinion but I am pretty upset about this whole mess. It has affected my work. I am really depressed about all this. Cecily

 

[Cecily]

Yes lyn in on the right track. I will email her. My coronary artery is not in the same place as everyone elses. This information was given to them in a report I gave to them of my second surgery 30 years ago.( ihave congential heart problems). I don't believe the surgeon read the report or he would not have plowed into my artery. I do have a valve on the conduit. But like I said it is not working well. I cannot execise at all with out my heart beating rapidley.I believe because ran into the artery they had to do this conduit. Idid have a kink in my right coronary artery. He said that may open up in time. I really should get a second opinion but I am pretty upset about this whole mess. It has affected my work. I am really depressed about all this. Cecily

Also I have a mild leaky tricuspid valve. My cardio was not communicative with me at all. Answered as few questions as possible. I should have gone somewhere else but at the time your not really in your right mind.

 

[Cecily]

This is my third surgery. I was born with tof I am not 54. I had one surgery at 8 a complete correction at 21. avery active life until a few years ago. I'm sorry I don't mean to complain.

 

[PJmomrunner]

I'm sorry if I exacerbated your consternation I can only imagine how disappointed you must be...getting a second opinion on what happened and formulating a proactive plan for your future are probably key to moving past your grief. (Go ahead and cyber-smack me if I just stated the obvious again ...)

Hugs to you

 

[Lynlw]

I would suggest when you are getting another opinion to go to a cardiologist thtat specialize in adults w/ chds here is a link to some http://tchin.org/cardiology/index.htm#CS03 I would try to find out exactly what was done w/ your previous surgeries for TOF, my understanding is alot of them have the conduit RVOT as part of the repair, is it possible you had one before but didn't know? I'm not as knowledgable on TOF as I am on TGA, but our great niece is 5 and was born w/ it. Lyn

 

[OldManEmu]

Cecily welcome aboard. This situation you describe with the surgeon is unbelievable, they are either totally incompetent or incredibly lazy if they hadn?t read the report that described your unusual anatomy before they operated. One thing is certain I wouldn?t be letting this surgeon touch me again if another operation is the only way your problem can be fixed. I would be consulting a lawyer to get their opinion if this could be considered negligence. If your cardio isn?t communicative or helpful it is most likely time to find another. You have every right to be angry and depressed with the treatment metered out to you by these medical ?professionals?. As P.J. has said you need an action plan and a new cardio is the first step.

 

[Cecily]

Thankyou everyone, Yes I did consult an attorney. Which is much more stressful than I had thought. First they never answer your calls. You give the whole history of what went wrong to the secretary then they never call you back. Finally I got a referral from another attorney. It cost me $500. and I got no where (long story) So now I am looking for another attorney. Because I believe they were negiligant. Three times it says in the report I gave them that my arterey is not in the proper place. If they had done the surgery right and read the report I would probably be O.K. or alote better than I am. But malpractice suits cost alote of money and alote of attorneys are hesitant. Cecily