Everyone has leaking valves, it's a fact of life. The issue becomes one for intervention when that leaking becomes significant enough to cause other problems. When I said I didn't want to be alarmist, I meant to read my following statement in the context that it may not apply to all. But it still needed to be said that SEVERELY leaking valves ARE a serious issue that should be monitored and addressed. My cardiologist's statement probably should be put in further context, which may still be applicable to the original posting on this thread. Scary YES, but I'm sorry Scott, maybe still applicable.
Below is a more detailed rendering of my cardiologist's statement to me and more context.....
The ACHD medical community, in the last 5 years or so, has become aware that in THOSE PATIENTS WITH CONGENITAL HEART DEFECTS there is indeed a higher risk of sudden death when valves (specifically the PULMONARY AND TRICUSPID) that are SEVERELY leaking are not dealt with. It used to be thought to let the valves leak because the risk of another OHS surgery in this population was higher than the leaking valves. As more children are now surviving the severe congenital heart defects and coming into adulthood, the Drs are seeing more of them having catastrophic issues from the leaking valves and are now studying when IS IT BEST to replace these (again, specifically the RIGHT SIDE) valves. Sooner rather than later is becoming more and more prevalent.
It IS "worth mentioning" because this is a totally NEW way of looking at these leaking valves. I have been seeing cardiologists yearly since I was 2 months old, (now 51) and this was the first I'd heard of it too. The Drs always looked carefully at those right side valves but never said anything about replacing or repairing them. Midpack, I don't know what valve work you had or are waiting for. The MAJORITY of people on this site are dealing with Aortic and Mitral (Left side) valve issues which are totally different issues than Right side valve failures. My statements are first, IMHO (as most of our statements are because many of us are not medical professionals. Although, BTW I used to be a pediatric cardiology step down RN, I'm still speaking as a patient not an RN.) and second, specific to the ACHD PVR patient group that Scott and I belong to.
This thread is listed as being about someone needing a PULMONARY Valve repaired. I wanted to pass on the importance of this being dealt with by someone with expertise in ACHD issues. Not everyone is coming onto this site "to get calmed down and receive positive feedback." They are coming onto the site to seek reassurance, yes, but also information and confirmation. The information I received via my cardiologist could help folks on the site realize that seeking professional help from appropriately trained Drs is important and should be done in a timely manner. While statements about sudden death are scary that doesn't negate their validity.
SCOTT, you are doing the right thing by being followed closely by your cardiologist and looking at getting the valve replaced!!! I went through exactly the same thoughts you did both a year ago when the issue was first brought up and three months ago when my Dr. suddenly moved up the time frame for the repair. I have been essentially asymptomatic and viewing my heart issues as a "non-problem" for over 40 years, until almost exactly a year ago. At that time he simply mentioned a need to keep the idea of repair in mind for some nebulous time in the future. In the fall, I scheduled an appointment for follow-up because I was noticing increased problems with shortness of breath. That's when he dropped the sudden death bomb on me. He said new (as of last year) studies have come out showing that simply watching these valves, as has been done for many years, can have catastrophic consequences on ACHD patients. Also, the longer Drs wait, the less likely it is that heart function will return to normal. He then told me to get ready for repair by sometime in the spring. It was not an emergency but urgent. I will say that even up until the surgery date, I kept wondering... I'm not feeling bad now (pre surgery) and am in pretty good shape. Am I going to have this surgery and then feel worse than I do now (pre-surgery)???? I certainly do feel worse now, still recovering, but AM VERY GLAD I HEEDED HIS ADVICE and am confident that once recovered, I will have done the right thing for my heart. Because the Drs didn't know to do these repairs earlier, (my repair should've been done years ago) my current issues will probably not improve. BUT, they will not get any worse and I will have reduced the strain on the heart.
SCOTT, you have the advantage of finding this out much earlier than I did and hopefully before irreversible damage was done. It also sounds like you're in the right place! Please don't take my statement to mean you're going to keel over before you have a chance to have the operation! But to encourage you, that you are doing the right thing by addressing it now and not later! Best of luck to you!
Linda
