Should I Scuba Dive Anymore?

I'm a certified diver..almost 30 years. I'm BAV with stenosis. Based upon the list of "do's and don'ts" that I was just given, I think I would still dive, but conservatively...i.e., certainly no decompression diving whatsoever, and strictly shallow sport diving in non-challenging environments (no currents to fight, etc.). Disclaimers big time: I am NOT a medical professional, just a guy trying to live life to the fullest. I give no advice, just relating what I'm doing.

Walking

Our dog, Bradley, takes me for two walks a day. Two miles in the AM and two miles in the PM...one hour each 7/365. I used to jog but I found that I couldn't do it anymore about four years ago. I can walk fine on level ground but hills are tough. Walking is recommended for people with heart valve issues.

Aspirin Therapy

I started tasking a daily coated aspirin on January 15th as suggested by my surgeon. I've never taken a daily aspirin before, only one a week, but I never had any reaction to aspirin like stomach discomfort. The coated aspirin is supposed to be easier on the stomach so I don't anticipate any problems.

I'm not exactly sure what taking a daily aspirin is supposed to do for me. The literature that came with the aspirin bottle shows a little graphic of blood flowing through an artery with platelets shown as less likely to clog a narrowing. So I suppose with a narrowed aortic valve, the aspirin would make clot formation there less likely. Or, perhaps the surgeon felt that I should be taking it just in case I have coronary artery disease. In any event, with a history of stroke on my mother's side of the family, it's probably a good idea for me to take aspirin.

Who knows where the time goes - Fairport Convention

Who, indeed?

Marfan Syndrome Similarities

My good friend Barbara L. has suggested looking at Marfan syndrome information for ideas on how to cope with BAV disease. Marfan is a much rarer but better understood genetic disease that manifests itself with some of the same symptoms that we see in BAV disease. In particular, since Marfan is also a connective tissue disease disorder, people who have it often have aortic aneurysms, and eyesight problems. I don't have Marfan, even though I do have some of the classic traits like being tall, relatively thin face with arched palate and crowded teeth, and of course, the aorta problem.

One of the best resources I've come across is a web site put up by a woman named Janis Cortese. It has a ton of information about Marfan. You can get to it here.

I Got What I Wanted

As the saying goes over at valvereplacement.com, only a surgeon can cure valve disease. A cardiologist cannot cure your valve problem. The reason I sought out a surgeon's opinion is that the conventional wisdom over at VR.com is that cardiologists tend to be more conservative in the management of valve disease, and prefer to delay surgical intervention until the onset of severe symptoms. On the other hand, it is felt that surgeons prefer to intervene at an earlier point, before any permanent damage is done to the heart. This may or may not be true depending on who the care providers are.

After sleeping on it, it occurs to me that I got what I wanted from the surgeon at Penn, i.e., an evaluation. In his opinion, it is not yet time for my surgery. I'm not thrilled to be walking around with an aortic aneurysm, but many people have one and many people don't even know that they have it. At least I'm aware of the problem, I have obtained an evaluation from someone who is capable of curing it, and I have a plan for management of my condition going forward. So, that's not all that bad a place to be, all things considered.

A Day Of Tests And The Aftermath

So, after a day of tests I met with my heart surgeon. I'm still processing all the information but I think where we're at for now is watching and waiting on my aortic valve, with management of my aortic aneurysm that primarily involves blood pressure control. I will be meeting with a new cardiologist soon to determine a course of medication(s) and perhaps other treatment options going forward.

This is not what I expected and I will need some time to process all the information. I do have concerns about what has taken place relative to the degree to which this particular surgeon is sensitive to the special needs of BAV patients as well as a seeming disconnect between what he told me when we first met vs. what he said yesterday. There also appears to be a discrepancy between what he told me and what I read over and over again in the literature about BAV and the severity of aneurysms.

For example, he seems to feel that my aorta is not a big concern at 4.3 cm. However, if you read the BAV literature, studies indicate that anything over 4.0 or 4.5 is serious enough to warrant replacement at the time of AV surgery in BAV patients. Ross, the administrator of VR.com is BAV and had his aorta rupture at 4.7 and it almost killed him.

Another disconnect has to do with the AV. When we first met he indicated that I was in the severe range factoring in my body area (my size.) However, yesterday he didn't seem much concerned about the condition of the valve.

I'm sorry to say that I came away with the feeling that they process so many sick people through HUP that they may not be properly responsive to someone like me. I felt as if yesterday's appointment had little relation to the previous appointment.

Well, at minimum I need to lower my systolic blood pressure in order to take stress off of the aorta. So I will make an appointment with a cardiologist at HUP. Hopefully this person will be up on the BAV literature so that I can run some of my concerns by him.