Choices in Testing and Procedures
Choices in Testing and Procedures
I am so sorry to hear what happened to you, Lis, regarding your cath. Some of the things you mention here are things that we as patients can/should have choices about.
Regarding the cath, the 64 slice CT is a relatively new option for looking at the heart. It has the ability to image coronary arteries very well. Instead of threading a catheter through your blood vessels and into your heart, all that is needed is an intravenous contrast. This is not available everywhere yet, but major centers have them. The CT does expose to x-rays, but compared to complications such as you described, it is generally a safer first choice to see what is happening with your arteries. There are other ways of looking at and evaluating the valve also. I am wondering why a cath was needed for you. At one time, it was all that was available, but perhaps you might explore other options. It might mean seeking out a larger center with more options.
Regarding the possibility of replacing valves via catheter, which was described to you, the idea of "no more open heart" may sound appealing at first. It might seem to be the best solution. But that is not always the case, and it would need to be proven. If and when percutaneous valve replacement becomes available, it needs to be viewed as another option, but not necessarily superior to open heart replacement of the valve.
We can take a lesson from what has happened to bypass surgery versus stents to open the arteries in the heart. It apparently was assumed from clinical trials, which require careful patient selection, where patients are followed for a relatively short period of time, that stents should be the first thing offered - clearly, people avoided having open heart surgery. Recently there has been some information that challenges that. I will just put this press release here, but the medical literature also presents various papers looking at this topic.
http://www.dukemednews.org/news/article.php?id=9899
It is not easy to be a wise consumer of health care offerings. However, we do it in so many other aspects of our lives, and there is nothing that is closer to us than what happens to/in our bodies.
It takes financial resources and health insurance flexability to seek out more than one opinion, and to choose the physician and procedure that one decides is best.
As another thread on this site discusses, you can get an opinion from a surgeon yourself, you do not need to be referred by another physician. Recently, someone I know well contacted four major medical centers (without a referral or assistance from any physician), got four separate opinions, and has now made a well-researched decision about what to do. Interestingly, only two of the four were in fairly close agreement regarding the approach.
For myself, I want as much independence as possible in making these major decisions. I want to get perspectives regarding everything that is available, and then choose what is best for me, as I understand it. Then I have the consolation that if something does indeed go less than well, I or my loved ones are not tortured by wishing I had just checked something else out before deciding. A well-researched decision is so important.
When my husband's valve first made him very ill, almost 17 years ago now, we were very typical in our approach. We found a local physician, who referred us to a cardiologist, who referred us to a surgeon. We just followed along.
But when, without warning, my husband's aneurysm was found in 2001, I knew that we had to be informed medical consumers in order to give him the best chance at life. Even doing that, we have found ourselves on the frontier with his condition. But if we had not done it, I suspect my husband by now would not be alive. The stroke my husband had last fall was not due to the typical risk factors. The first assessments done locally did not show any reason for such a major stroke, and no one could tell us why it happened. If we had accepted that, the mechanical valve and the strands on it would have caused another stroke - it was just a matter of time.
So, I encourage everyone to research all the options, and remember that what is being offered is often one of several choices. Figuring out for an individual what is best for them personally is not always easy, but it is well worth it. Don't be afraid to seek out both medical and surgical opinions independently. It is the most important research project you will ever do!
Best wishes,
Arlyss
