Sunday, November 30, 2008

Two Things That Are Good For The Heart

One is the close comfort that you get from animal companions. This is Nikko, our 16-1/2 year old Brumese. The amount of affection that this little creature gives to us is incredible. You can't help but feel better when he's on your lap or sleeping next to you with the big purr going.

The other thing that is good for the heart is walking. I do two walks a day most days, 2 miles each. We're lucky to live right near Philadelphia's Fairmount Park. The park features beautiful walking paths along the Schuylkill River. On the lower path heading South, called the Schuylkill Banks, I get the added attraction of seeing real trains many days. The CSX freight train line also runs along the river, so I can get my train fix while I'm walking. All good for the heart.

This week I hope to get a copy of my latest echo, the one that was done the day I saw the surgeon. Needless to say, I am very anxious to get this report so that I can compare it to the one done last August to see if there has been any noticeable progression of the AS, and to see if the tech found anything else during his comprehensive exam.

Saturday, November 29, 2008

Defending Seeing The Surgeon - Too Early?

Bradley and I had a nice walk in the park this morning. My legs still felt a little like lead. It's probably just a low energy thing.

People manage their health (or don't manage it!) in all sorts of ways. I've always tried to be out in front of any potential health issues. I get regular annual checkups, and go for tests when needed no matter how "thrilling" they are. I've had a whole battery of tests related to kidney function because I have a condition called hematuria: blood in the urine. Turns out that this is something that is natural for me..."ideopathic." I've also had routine colonosopies since I had a benign polyp removed at age 50. So I'm the type of person that stays one or two steps ahead of any potential health problems.

However, the heart valve disease situation presents a new challenge for me, because the issue of when to have surgery, the "timing" is tough to determine. That's why I was so happy when my surgeon told me that he "knows when to pull the trigger." Obviously, you don't want to have surgery too soon because why risk a surgical procedure and suffer the pain if you don't have to. On the other hand, there are risks associated with waiting to have surgery to correct valve disease, including damaging the heart permanently, or even death. There's a continuum from one approach to the other; waiting vs. having the surgery. I went to see a surgeon to get help making this call.

The difficulty in assessing symptoms complicates making the call relative to when to have surgery. If a person has been diagnosed with severe AS and has fainted, been dizzy, short of breath, or has chest pain, then surgery is indicated, according the the AHA guidelines. However, in my case, what if the "numbers" are only in the moderate range (potentially severe adjusted for my size,) and I have not had any episodes of fainting or dizziness (yet,) only some chest tightness (angina) on heavy exertion and some shortness of breath when I exercise, climb a hill, or go up a flight of steps? Then the picture is murkier.

I gather that's why my surgeon has ordered a CT scan and chest get a fuller, more accurate picture of what's happening than provided by just the echos alone. The CT scan will, I believe, provide information about the aorta, the valves and the coronary arteries. So when I go back to see the surgeon on January 6, we'll be armed with a lot of information and be in a better position to make a decision about surgery. That's my hope anyway.

It's pretty clear that I will need heart valve surgery. Only the question of when remains to be settled. This is the uncertainty that anyone who has been through this will tell you is worse than the surgery itself: the waiting. I was first diagnosed with AVD almost five years ago, but only this year did things get worse. However, there's an old saying in valve patient circles: "The worse things get; the faster things get worse." Again, that's why I went to the get his take on things.

I'm sort of making a defense, I guess, of my decision to seek a surgical consultation. I could have followed the cardio's advice: "See me in a year, unless," with the unless being if I developed severe symptoms. But there's the rub. I don't want to wait until I faint...are you kidding? Or, collapse like an acquaintance did on his sofa, nauseous, grey colored, and sweaty, ending up in the ER. I'm not made that way...I want help BEFORE I get to that stage.

Also, it's extremely difficult to convey your symptoms accurately to medical personnel because you don't really know whether what you are feeling is as a result of heart valve disease, being out of shape, etc. I tried like hell to be as accurate and honest as I could when I was interviewed by the surgeon's RNP, and in my responses to the surgeon himself. I believe he knows pretty well exactly where I am on the continuum. When he gets the CT scan results he'll be able to make the call, one way or the other. If I were a betting man...well, I wouldn't bet on this either way because there are just so many uncertainties. That's the nasty situation that I'll be living with at least until January 6.

Friday, November 28, 2008

Too Much Of A Good Thing

So I had a great day today downtown in amongst the holiday shoppers soaking up all the holiday excitement. I walked two miles this morning with Bradley, then I waled another mile downtown, then after a nap I walked another two miles with Bradley. Is it any wonder that I feel like I'm made out of lead at the moment?

My Walking Buddy

This is seven year old Bradley..."Brad" for short. Heart valve issues notwithstanding, we walk two miles a day, twice a day, every day. I figure I'm a little like the Energizer bunny, I'm going to keep on going until I can't anymore!

Where I Fit In With The AHA Guidelines

So, my cardio sent me away in August with the advice to come back in a year unless I developed symptoms of severe AS. But when I got copies of the last two echos from 2007 and 2008, and I saw that the rate of progression of the stenosis had jumped way up, I wondered if waiting for a year was a good idea. I began research in earnest and quickly found the AHA Guidelines. So, where do I stand in relation to AHA Guidelines? Here are some key excerpts with my comments:

"In large patients, a valve area of 1.0 cm2 may be severely stenotic,
whereas a valve area of 0.7 cm2 may be adequate for a smaller patient."

Large Patient? That's 6'5" and 226 Lbs. My valve area in August was calculated at 1.1 to 1.4 cm2 and closing fast.

"studies indicate that some patients exhibit a decrease in valve area of 0.1 to 0.3 cm2 per year; the average rate of change is 0.12 cm2 per year."

I lost between .4 and .7 cm2 between 2007 and 2008...I'm on the express track!

"After onset of symptoms, average survival is less than 2 to 3 years"

I have symptoms...angina on exertion, occasional shortness of breath, palpitations all the time...I HAVE symptoms...even my surgeon says so. Evidently the clock is ticking...evidently.

"Sudden death is known to occur in patients with severe AS but has rarely been documented to occur without prior symptoms."

Well, I know about the possibility of sudden death, but my surgeon, Dr. Bavaria reassured me last week that I was not at much risk...yet.

"many physicians perform an annual history and physical examination on patients with mild AS. Those with moderate and severe AS should be examined more frequently."

Yes, that's what I figured when I found out in August that my AS had progressed to moderate. And that's one reason why I decided to seek out the opinion of a surgeon.

"Patients should be advised to promptly report the development of any exertional chest discomfort, dyspnea, lightheadedness, or syncope."

Of course, but you have to be shocked out of denial first and understand exactly what these symptoms are!

"If the clinical and echocardiographic data are typical of severe isolated AS, coronary angiography may be all that is needed"

And that's what Dr. Bavaria ordered for me.


"AVR is indicated in virtually all symptomatic patients with severe AS."

It's showtime!

The Valve Disease Bible

Anyone can go online and read the Guidelines For The Management Of Patients With Valvular Disease published by the American Heart Association. This is what our physicians go by in the treatment and management of our valve disease. It's interesting to read it and compare our individual situations to the specifications in the guidelines. It's written in terms that non-medical people can understand for the most part. I feel like I ought to have a pocket sized copy that I can carry around with me.

Thursday, November 27, 2008

A First Visit With The Surgeon

When I last saw my cardiologist in August 2008 for my yearly echo, I learned that my aortic stenosis had progressed from mild to moderate during the past year after having remained about the same since first diagnosed in 2004. The difference in valve area was a loss of between .4 and .7 cm2 between June 2007 and August 2008. I was asymptomatic (I thought, in denial,) with only the typical getting winded easily complaint that many of us with valve disease experience. My cardiologist left me with the advice to return to see him in a year, but cautioned me that if I developed any dyspnea, syncope, near syncope or chest discomfort I should immediately seek medical attention.

When I got copies of my echocardiograms from 2007 and 2008, and looked at the numbers I realized that if the rate of progression of the stenosis continued unabated, I would quickly fall into the severe stenosis category. I could develop severe symptoms at any time. Not content to wait for the onset of severe category symptoms, I resolved to talk to a surgeon. My primary question would be about the timing of surgery: should I wait for the onset of severe category symptoms? I am fortunate to live near a major heart center, the University Of Pennsylvania Hospital. An acquaintance who had AVR had given me the name of his surgeon several years ago. My own research confirmed that this surgeon Dr. Joseph Bavaria, is a well known and highly respected practitioner, so I made an appointment to see him. Yesterday ( November 20) I finally met with Dr. Bavaria. I gave him copies of my echos. I was highly impressed with his “take charge” approach to my situation. He reassured me from the start: “We’ve got a handle on your situation,” and answered my primary question before I even had a chance to ask him: “We KNOW when to pull the trigger,” he said - and he actually used those words. Who in the waiting room doesn’t want to hear that? What a big relief already. He explained that although my “numbers” where technically still only in the “moderate” range, because I’m a “big guy” (I’m 6’5” and weigh 228) my stenosis could already be effectively severe. I had not encountered the whole body area factor in my own research. He did some valve area calculations with his nurse practitioner that I did not understand. The bottom line is that, with the recent quick rate of progression of the stenosis, it may be time for surgery already, especially if there is any coronary artery blockage requiring grafts. That would be a sure “trip,” meaning surgery immediately, he explained. He suspects that the valve is bicuspid, contrary to previous echos, and there is the possibility of an aortic aneurism. He ordered a series of tests: echo; CT Angio chest; chest X-rays; blood work including Coumadin and Heparin related tests; EKG, etc., and set a follow up for one month, so I’ll see him again in late December. I had the echo right after my visit with Dr. Bavaria. Echo techs aren’t supposed to tell you anything, but I did watch the screen and he was quite conversational. We both saw some sort of mass on one of my aortic valve leaflets. “Could that be calcium?” I asked. “Could be,” he responded. Seems like I did all this not a moment too soon!

So, for those in the waiting room, take note the stark difference in the two approaches here. My cardiologist advised me to come back in a year unless I developed severe symptoms. The surgeon is much more proactive, ordering additional tests and considering the possibility of surgery in the short term. It almost seems to me like once a cardiologist finds moderate or progressive stenosis, he ought to consider his job done and refer the patient to a surgeon. For those “in the waiting room,” the advice of Al Capshaw and others is spot on, it seems to me. Only a surgeon can cure valve disease. If you want to know when to “pull the trigger,” see a surgeon.

Is My Aortic Valve Bicuspid?

Happy Thanksgiving to everybody stateside!

This morning I was doing some research on bicuspid aortic valves. If you have a bicuspid valve, usually that's a sign that you will have some heart issues at some point in your life. A lot of people don't know that they have one because it's not easy to detect. As of today I still don't know whether or not I have a bicuspid valve. My cardio wrote on an echo report at my valve is tricuspid. However, my surgeon told me that he thinks it is actually bicuspid and that this was "missed." The fact that I've always had a heart murmur is another indicator, it seems. It's important because if you have a bicuspid valve and you develop valve disease there is a likelihood of associated disorders, primarily problems with the aorta known as aneurysms. These can be deadly in and of themselves. In the literature you can read references to people dying of a "heart attack," while what they probably had was an aortic aneurysm. It's scary stuff, but no sense avoiding it, so I'm researching it.

I suspect that once I get a copy of the echocardiogram done at the hospital last week I'll have a much better idea where I stand. The tech was very thorough including using the transducer under my chin and throat to look down at the aorta. That echo report copy can't come soon enough!

Wednesday, November 26, 2008

Symptoms - How Do You Know?

With a failing heart valve, the difficulty in self assessing symptoms feeds into denial. When I went to see my cardio last August, I had no reason to suspect that my visit would be any different than the previous year’s visit. In 2007 he gave me an echocardiogram and told me at the end of the visit that things were pretty much the same as they had been when he last saw me in 2004. So, no change, no worsening but for a little bit of heart enlargement in three years was good news. However, this year the results of the echo were quite different. “Your valve opening is a little smaller,” he told me. “If you get any dizziness, chest pain, shortness of breath, or fainting, you’ll need to get medical attention,” he continued. Well, this was a major change from the previous year to be sure! And here I was expecting the same old unchanged diagnosis.

“Any chest pain, dizziness, fainting, or shortness of breath?” This had been the first question the cardio asked me last August. “No, none.” I replied. But actually, in retrospect, that was an incorrect answer. What exactly is “shortness of breath” or “Dyspnea?” Here’s a medical definition: a feeling of difficult or labored breathing that is out of proportion to the patient's level of physical activity. I wish I had looked that up a long time ago. I’ve been huffing and puffing for a long time now. Climbing a few steps, or walking up a slight hill causes me to pant. That is labored breathing which is out of proportion to the level of activity. After all, until sometime in 2005 I had been jogging three times a week. I stopped, not because I wanted to but because I simply couldn’t do it anymore. I asked one cardio about this and he blamed it on my getting older and putting on weight. That was wrong. In retrospect, I now believe that the valve problem was the reason I couldn’t jog anymore. I was becoming symptomatic as a result of progressive aortic valve disease. But I needed help assessing my own symptoms – help that was not forthcoming.

Waiting...For A Call From The Hospital

Today I’m expecting the hospital to call with test scheduling. I need to get a CT Angio Chest, which will tell whether or not I have any coronary artery blockage. If I do, that trips the wire and surgery here I come. Otherwise, “we may wait some’ said Dr. Bavaria, my surgeon. This is not great. It’s more uncertainty. Oh well.

We had just moved to Long Island in early 2004 when I found out about my AS (aortic stenosis.) The move went sour pretty quick. I hated Long Island. The winter of 2004 was one of worst they had seen in years…cold and wet. Moving to Long Island looked like a good idea on paper. We would be closer to New York City and right across the bay from our summer house on Fire Island. But it didn’t turn out well. The house was one problem, The basement flooded all the time when it rained. I couldn’t set up my toy trains or my workshop. The roof leaked one day. Living in suburbia was another shock. I really felt isolated. I had no idea I was such a city boy. I became seriously depressed. I started selling off prized trains from my collection in a panic.

Then I got the news about the heart problem. How on earth would I handle this with our medical care based back in Pennsylvania. I thought? I pleaded with Dan to move back to Philadelphia. He resisted this idea at first, but finally he came around and we decided to put the house up for sale less than six months after moving into it. We managed to find a buyer the day before the contract with the realtor was to expire. We made a few trips back to Philadelphia and finally found a nice house about a block from where we used to live. I felt like Dorothy in the Wizard after we moved in: “There’s no place like home.” In retrospect, the move was a mistake, but at least we tried it and don’t have to live with the burden of wondering “what if.”

Tuesday, November 25, 2008

Denial And Waiting

Well, there's so much I want to write about. I guess when the time comes that you finally have to face a life-threatening situation, you thrash about trying to figure a way out. DENIAL. This can't be happening to me. WAITING. Denial and waiting - the two big elephants in the room that people with heart valve disease have to cope with. When I found out last summer that my disease was progressing, this shocked me out of my lethargy and mobilized me. I started research in earnest. I bought Adam Pick's book. Best of all, I found online, a forum for people who have had or are facing heart valve surgery. The internet comes to the rescue once again! The amount of information available on this forum is staggering. And there always someone who responds to your questions or who is willing to be a shoulder to lean on. What an important resource for those of us who are computer literate. Anyway, once the verdict is apparent, I think most people jump into action and try to figure out how to help themselves and make the whole process easier on loved ones. That's what I'm trying to do anyway.

Whoaa! Let's Go Back A Few Years

This is me at my hottest and recent years anyway...about eight and a half years ago, four years before my heart valve disease diagnosis. I was really active then, jogging, and doing all sorts of physical feats in connection with fixing up our new house on Fire Island. I had just single-handledly installed a complete new bathroom and a Vermont Stove in our new beach house when this picture was taken in June , 2000.
So, fast forward to last week November of 2008, and I meet with a surgeon at the University Of Pennsylvania hospital. Yep, just a little under five years after I find out that I have this heart valve problem, the s**t is hitting the fan. Well, I remember reading back in 2004 that on average; someone who is diagnosed with a heart valve problem has about five years tops before they need to go and get it fixed. Seems about right, I would say.

We'll Need To Have A Talk

I’ve known since I was a child that I had a heart murmur. No one ever seemed to think it was serious, and I never gave it much thought. That is, until 2004, when, because I have the murmur I had to get an echocardiogram, a non-invasive ultrasound type of test that looks at the heart, in order to get a colonoscopy, which I get every five years since I had a small polyp at age 50. So I went to a cardiologist and got the echocardiogram. When it was over, the cardio said to me, “We’ll need to have a talk.” Hummm, I thought, what now?

“You have a problem with your aortic valve,” he said. It turns out that the murmur was no real concern. What was happening was that my aortic valve was becoming calcified. The condition was mild, the cardio told me. It happens to some people when they age. It might stay the same over time, get no worse, and present no problem, or it could get progressively worse. There was no way to predict what would happen. There was nothing much to be done, it wasn’t diet related, etc. It just happens to some people as they age. “Come back in a year,” the Doc said. So I left the office with a new problem that I didn’t have when I walked in.