Friday, March 27, 2009

The UCLA Adventure

On Tuesday, 17 March I went to UCLA to talk to their specialist about closing my PFO. At least, that is what I thought was happening.

I was extraordinarily excited to see this doctor at UCLA. Of course, UCLA has a great reputation. They are a teaching hospital, they attract some of the best and brightest doctors in the world to their programs. All of the research I had done on PFO closure had been published by Cleveland Clinic in Ohio, a premier cardiac hospital in this country, but if anyone on the west coast and certainly in the Los Angeles area (where I live) is capable of performing the same procedures it has to be UCLA right?.....Right?

When I was ushered into the room there were two Doctors sitting in the room eager to meet me. That alone was a bit of a red flag. I was there to meet Dr. Jonathan Tobis who has a rather impressive resume and is the only doctor at UCLA dealing with PFO closure. Dr. Tobis was one of the two in the room along with a resident who was assisting him. The review of my condition, watching of my TEE film and discussion of options quickly blended into what felt like a sales pitch for the Clinical Trial or "Study" that it turns out I am a perfect candidate for.

UCLA is performing a study to help qualify a new device that "could potentially" be used for PFO closure if it is ever given FDA approval. The Doctor Went on to tell me that the FDA has not approved ANY devices for the closure of a PFO in this country. He told me that if I join the study I would get a 50/50 chance. Half the study participants would get drug treatment and half would get surgery using a "new" device unlike the one that Cleveland Clinic uses and has had great success with already. 50/50 odds when I already know I need to have my condition fixed and I do not want to be on drugs for the long term are just not acceptable.

So I left UCLA that day a bit disheartened, pardon the pun. The next morning I called a phone number that was on one of the pages I printed out from Cleveland Clinic. I just randomly cold called hoping to get some answers. To my surprise, I did. A very helpful guy told me everything I could have ever wanted to know over the phone. He told me that it is true that the FDA does not want to approve a device for PFO closure because it is a "common" defect and only a small percentage of those with the problem suffer ill-effects. But the fix can be done using devices that are perfectly safe and approved for use in the heart for the repair of an Atrial Septal Defect (ASD). They use these devices "off-label" to seal a PFO rather than the ASD.

The guy from Cleveland told me that they are also involved in studies to get devices approved for sealing PFO, but given my condition they would not hesitate to offer me the choice to join the studies or to just GET IT FIXED using the tried and true methods. He also told me that UCLA should have offered me a similar option rather than only offering me the study. In my mind, that confirmed my bad feelings about that experience.

So I went back to doing some research and found an article from a few years ago wherein a doctor at Cedars Siani performed a PFO closure using the same techniques, using the same device that Cleveland Clinic uses to treat someone within my same age range. Not a study, not some trial to get something approved, not horrible drugs but a fix and the guy is doing great now. Immediately I contacted Cedar's and began asking them questions. They told me that the doctor in the story is indeed THE ONLY doctor who has done PFO closure for them. The only problem is that he is out of the country and does not come back till 15 April. So I will see him on......guess when......15 April. I am being cautiously optimistic, because I know how my optimism turned out with UCLA. Till then, I will continue with the horrible drugs and keep moving forward.

If Cedars does not work out, next stop......Cleveland.

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