1997 counting crows at pinkpop - long december

"The smell of hospitals in winter..."

Avoiding Permanent Heart Damage

I've been thinking about what I read recently...a detailed description of what happens to your heart when your aortic valve becomes severely stenotic (stenosis means "narrowing"). At the moment I can't locate the more technical description, but this from the Mayo Clinic web site gives you the general outline:

If the aortic valve is narrowed, the left ventricle has to work harder to pump a sufficient amount of blood into the aorta and onward to the rest of your body. In response, the left ventricle may thicken and enlarge. At first these adaptations help the left ventricle pump blood with more force. But eventually these changes weaken the left ventricle — and your heart overall.

I'm going to look today for the technical description of what happens. It has something to do with blood supply to the heart which becomes disrupted or irregular as the heart enlarges in an attempt to compensate for the narrowed valve. This results in ischemia of the heart...which is defined as a localized anemia of living tissue. In other words, parts of your heart begin to suffer from lack of blood supply...therefore, lack of oxygen, as I understand it.

So this is why you don't want to wait to long to have valve surgery if you need it. This sort of damage is NOT reversible, according to what I've read.

The Nature Of Bicuspid Valve Disease

As I wrote to my new friend Jane, who also has a bicuspid aortic valve, I have found out that BAV disease is actually a syndrome, with associated connective tissue disorders, that affects other things in your body, like your arteries, and is even associated with other physical manifestations like nearsightedness, which I also have. In this respect it is in some ways similar to other systemic conditions such as Marfan"s Syndrome. It's not merely a problem confined to the aortic valve. BAV disease appears to be something that is not well understood by doctors, even cardiologists. It's a cutting edge sort of condition. With BAV, you should be screened for the condition of your arteries: your thoracic aorta, your carotids, you should get a brain scan, and a scan of your abdominal aorta. Aneurysms can occur in any of these places.

I'm not anxious to have the surgery on the one hand. On the other hand I want it if it's time, and before there is permanent damage to the heart, and before I blow a gasket and have an aortic dissection or rupture. I want this for myself, and for those I love and who care about me.

Confusion, And The Holiday Food

There's so much information to digest and remember. You read all you can...or at least I read all I can...but then it's like information overload. Stuff starts falling off the shelves in my mind. I have to go back and re-read and try to organize my thoughts once again. Where do I stand? What do the numbers mean?

I have a friend who I met through our shared interest in toy train collecting. He's an anesthesiologist. He found out about my heart condition and kindly wrote to me. Turns out he was in training to be a cardiothoracic surgeon before changing career paths. He wanted to know about my condition and offered advice.

So I told him about the BAV diagnosis and the aortic aneurysm or dilation (some people like my GP don't seem to be up on the current literature that lists anything over 4 cm as "aneurysmal.) I also explained that I would not agree to surgery unless the battle plan also addressed the aneurysm. He wrote back saying that my surgeon might not want to repair the aorta because the dilation was probably due to stenosis of the AV.

Of course, my friend has probably not read the current literature on BAV disease and the studies that indicate that aortic dilation is separate from BAV stenosis, happens due to causes other than BAV stenosis, and will progress in a significant number of patients even after BVAVR.

Through all of this I'm trying to keep my eye on the ball because I was to have a clear head when I meet my surgeon on January 6. This is what I have to keep front and center:

In patients with bicuspid valves undergoing AVR because of severe AS or AR (see Sections 3.1.7 and 3.2.3.8), repair of the aortic root or replacement of the ascending aorta is indicated if the diameter of the aortic root or ascending aorta is greater than 4.5 cm.* (Level of Evidence: C)

This is from the 2008 Focused Update Incorporated Into the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease, the very lastest practice guidelines. My ascending aorta is a 4.3 cm as of the lats measurement in November. If the surgeon "pulls the trigger" when I see him on January 6, the plan has to include tackling the aortic aneurysm because I'm only 2/10ths of a CM under the trip point in the guidelines. If not, then would not agree to surgery because of the risk that I would have to undergo a second OHS in a few years. So we'll see next Tuesday after I get the CT scan and meet with Joe Bavaria.

In the meantime, I'm walking four miles a day usually, and trying desperately not to consume too much of this tasty food that is all to readily available around the holidays. I made a meal for seven on Christmas day and the leftovers are delicious. Yesterday Dan made a turkey pie and we had some of it for dinner. It is really wonderful. I made holiday cookies last week, Viennese Crescents, and they're yummy too. How do you not put on a few pounds at this time of the year with all of this good food around?

Another Interesting Story

This was posted on VR.com by Andy, a fit young man who lives in Australia. It is typical of the kinds of stories you read about people with heart valve disease:

My story seems quite common here: an asymptomatic, fit and otherwise healthy person suddenly finding out they have heart disease which needs fixing soon. Life is turned upside down; mortality suddenly becomes very tangible. I’m 42 and have exercised virtually daily for many years (gym, swimming, cycling, walking etc). In August 2008 I fainted while swimming (at the end of a final lap, sprinting as fast as I could). The fainting episode must have been brief as I didn’t take in much water (or drown for that matter!). While passed out as I was having a nice little dream (I can’t recall the details now but it was pleasant). It was thus something of a shock to come to underwater, out of breath and unable to breathe, rather than waking up warm in my bed. Even though I’d not fainted before I put off seeing a doctor for a month or so; he soon identified a murmur with the stethoscope and sent me off for an echocardiogram. I didn’t get the result until some weeks later, but the news relayed by the GP was grim: ‘I’m sorry to tell you this on your birthday, but I’ve spoken to the cardiologist and we think that you’ll need mitral valve surgery; don’t do any strenuous exercise’ (he knew that I went to the gym regularly).

That feeling of "this can't be happening to me" is quite common, especially in asymptomatic people who exercise regularly and stay healthy. That's why valve disease is sort of a cruel diagnosis. I'm lucky to have made it to 60 with a BAV. Many people don't make it that long before they need surgery. Still, while I consider myself lucky in one respect, I'm not happy about it. However, eventually everybody has some medical problem to deal with...so at least I may be able to get a fix that will buy me some time.

Kittys And Sleeping After OHS

One of the challenges after you return home following OHS is how to get good sleep. The problem is that the incision makes it difficult to get in and out of bed, and sleeping positions can be painful. One idea that is used by a lot of people is sleeping in a recliner. Apparently, this makes sleeping and, in particular, getting up a lot easier. Of course, you have to have a recliner, which I don't have.

Here's a cute story about cats and sleeping post-op in a recliner or in bed from one of the VR.com members:

While I used the recliner a lot during the day, I couldn't sleep in it due to being visited by cats (some rather more than 10 lbs.), I slept mostly in bed. Back sleeping resulted in snoring loud enough to wake me up, so Laura used various wedges of blankets, towels, and pillows to position me for comfort--about halfway between back and side. On cold nights she would also microwave a buckwheat pillow for me, and I would use it as necessary for warmth (heat lasted for hours).Strangely, it was a heart-related incident that forced me to use a recliner. Back up in Anchorage in 1996, shortly after I noticed a rather abundant number of PVCs during our very stressful move and drive to Anchorage from Idaho, I wore a Holter monitor for 24 hours to record my heart action awake and asleep. I couldn't lay down in bed, since the device was too cumbersome, so I wore a bathrobe, placed the main monitor into one of its pockets, covered up in my Lazy Boy recliner, and managed to get a reasonably good night's sleep. There were cats then, too, but I could take a nighttime 'visitor' or two--just shoved him or her off when too warm or heavy. Amazingly enough, three of the six cats we had then are still alive, including one that's now 18--and she's in great health. Of course after the OHS, circumstances wouldn't allow me to free myself of heavy cats, so I couldn't take the risk. Anyway, Laura made the bed nice and comfortable, and it made her feel a lot better to be beside me in bed--and me, too.

Chris

High Blood Pressure & Valve Disease

So, I'm trying to figure out why my blood pressure is creeping up. It appears that there is a connection between aortic stenosis and hypertension:

Systemic hypertension is not rare in patients with symptomatic aortic stenosis (32% in our series). Left ventricular remodeling patterns are quite similar in hypertensive and normotensive aortic stenosis. Our results suggest that symptoms of aortic stenosis develop with larger valve area and lower stroke work loss in hypertensive patients, probably because of the additional overload due to hypertension itself. It could suggest that in patients with coexisting hypertension and aortic stenosis, hypertension should be treated more aggressively to delay the occurrence of symptoms, and these patients should be followed-up more closely.