Jim's Bicuspid Heart Valve Diary

A Busy Autumn 2011

2012-01-16T05:20:00.000-08:00

My work with Occupy Philadelphia beginning early last October meant that I had little time to enjoy hobbies like my toy trains. I missed exhibitions in Pittsburgh, York, and one or two other train shows that I usually attend. In addition, chores at home backed up and a pile of paperwork grew on my desk. Nevertheless, I felt that it was important to be a part of the Occupy movement and support the sturggle of so many good hearted young people in their effort to bring about economic and social justice. After the Occupy Philadelphia encampment was evicted by police in December, I began to catch up on everything. I still attend demonstrations in my capacity as a "street medic," but I have more time now.

Happy Birthday To Me!

2012-01-09T11:45:00.000-08:00

Today is my 63rd birthday. My hisband Dan gave me this lovely painting of our kitten "Loki" that he painted last summer. What a nice gift to get. I was also contacted by the Yale Heart Study. They asked if I could help get the word out about this important study. If you have had a heart attack, please consider helping by participating in the study. See the box at the right. Meanwhile things are status quo here health wise. I have not noticed any significant changes in my condition...just a little fatigue that makes naps really something that I appreciate just about every day. I still continue to walk four to five miles a day. My next evaluation is in April. Meanwhile life goes on!

Accurate Measurement of the Aorta

2011-08-09T05:05:00.000-07:00

Photo: Cherry Grove, NY as seen from my kayak out at sea

The Bicuspid Aortic Valve Foundation has a new blog. Embedded in their first post, there is an excellent video presentation focusing on diagnostic tools used to assess the condition of the BAV and the level of TAD (Thoracic Aortic Disease.) The most interesting thing I learned is that a dilated aorta is larger on systole than on diastole, and to obtain an accurate measurement CTs and MRIs should be "gated," which will reveal the aortic size on systole (maximum). This is the measurement that should be used when considering what size aneurysm triggers surgery. There is a lot more good info in the video. The blog is here:

http://bicuspidaorticfoundation.blogspot.com/

Life Goes On: Got Married July 24th

2011-08-06T06:05:00.000-07:00

Jim Kelly-Evans (standing) and Dan Evans returning to Cherry Grove, NY after getting married in Brookhaven, NY.

Status Quo

2011-05-05T09:12:00.000-07:00

Got my latest echo report. This seems to be what relative stability/very slow progression looks like. I've got another year unless things deteriorate rapidly in the interim.

2008 gradients: 22/36 mmhg
2009 gradients: 16/27 mmhg
2011 gradients: 25/40 mmhg

2008 AVA: 1.3 cm2
2009 AVA: 1.2 cm2
2011 AVA: 1.1 cm2

2008 ascending aorta: 4.25 cm
2009 ascending aorta: 4.5 cm
2011 ascending aorta: 4.3 cm

2008 aortic root: (SOV 3.5cm, STJ 2.55 cm)
2009 aortic root: 3.7 cm
2011 aortic root: 3.0 cm

2008 EF: 55%
2009 EF: 70%
2011 EF: 65%

No Good Way To Find Out You Have Heart Valve Disease

2011-03-28T03:39:00.000-07:00

Yellow Trumpetfish - Columbier Beach, St. Barths (click on the photo to enlarge it)

People have a wide range of experiences with valvular heart disease. Some people find out that they have a heart valve issue all of a sudden and need surgery ASAP. This can be very upsetting, to say the least. But for others, years and years can pass in between the initial diagnosis and eventual surgery. I'm in the category of knowing since childhood that I had an "innocent" heart murmur (is there such a thing?) It wasn't until age 55 that I had my first diagnostic echocardiogram (in the cardiologist's office) that was ordered before a routine colonoscopy. Then I found out that I had moderate aortic stenosis (calcification and narrowing of the aortic valve.) That didn't bother me much at the time. But four years later when I began to notice a loss of exercise tolerance I went to an advanced university heart center for an echoardiogram. Then I found out that I have a congenital aortic valve abnormality - a bicuspid aortic valve, with an aortic aneurysm (ballooning of the ascending aorta.) That shocked me more, especially when I learned from a surgeon that I wasn't "ripe" for surgery. Open heart surgery is serious business. They only do it when the risk of dying without the surgery outweighs the risk of the surgery itself.

It really bothers me that I have this congenital heart problem hanging over me and I can't get it fixed now. I'm an active guy and kind of a bull type, you know, push the car to get it started, shovel snow all the time, etc. So I want to stay healthy. But no, I have to wait until I get weaker and sicker. So I don't know what's worse, really: finding out all of a sudden that you need surgery ASAP, or lingering on coping with a slow progression of the disease for years and years, fighting to lead a normal life but you really can't, and not knowing when you might finally get the surgery you need, or keel over or blow a gasket first. There is no pleasant way for any of us with heart valve disease.

Almost TIme For My Yearly Checkup

2011-03-26T05:23:00.000-07:00

Taken while snorkeling at Columbier Beach, St. Barths

In about a month I'll get an echo and have a chat with my cardiologist. It's been almost a year and a half since my last echo, so the results should shed a lot of light on the aortic stenosis and aneurysm - are they relatively stable or not? I was buoyed last month when I was able to climb a steep mountain on vacation in St. Barths. Sure, I had to stop to catch my breath often, but the fact that I can still do this sort of thing without feeling faint or keeling over is a hopeful sign. Maybe the valve is stable. I'll find out soon. I love snorkeling and scuba diving. Dan doesn't want me to scuba dive, but as far as I know there is no physiological reason why I shouldn't be able to dive. We'll run this by the cardiologist in April. In St. Barths I was unable to get on a snorkeling tour. The only available option was a private escorted scuba dive - just me and the divemaster, so I took advantage of that. It was very safe because I had the benefit of one on one attention from the experienced, expert divemaster, and we did shallow dives, one in the morning and one in the afternoon. Talk about being on a high! I can still climb steep hills and I can still enjoy my favorite sport! I had forgotten just how beautiful it us down below. I saw a shark, several sea turtles and a fascinating array of spectacular underwater creatures. I don't want to give this up. Hopefully, I won't have to.

On scuba diving with heart valve issues, the web site scubadoc states:

The presence of an abnormality per se is not a contraindication to diving.

It all depends on the severity of the condition. This is determined by exercise stress testing, which I passed the last time I had it. I also just climbed the mountain in St. Barths. I didn't feel faint or keel over. The scuba diving I just did was nowhere near as demanding as climbing that hill! The diving was about as taxing as walkiing on a flat surface...not very much.

Some people who have had surgery made these comments on VR.org:

Why give up scuba diving unless you really want to? I asked my cardiologist about scuba diving and he looked at me with a puzzled look and responded that there was nothing about scuba diving that would present a risk.

Update. 11 weeks postop last Wednesday. Today returned to the sport I love so much, SCUBA DIVING!!!!! Yep, only two tanks today but was able to pick up a few shovelnose lobster and some trigger fish. Getting ready to fire the grill up and celebrate! Got the Corona on ice. If any divers are wondering...did 94'/23min and 82' 28min nitrox/computer.
Funny thing, you can really hear your heart beating down there, its a very peaceful sound. This AVR stuff aint so bad.....

2011-01-27T08:45:00.000-08:00

Photo: Winter snow scene in Fairmount Park

Last night we got about 16 or 17 inches here in the city. I cleaned off the front steps and made a path on the walk. Even though I'm 62 I don't fear snow shoveling because the kind of heart issues I have are not the kind that people keel over from while shovelling snow. I have been tested and my coronary arteries are fine. Actually, those with congenital bicuspid aortic valves usually do not get plaque in their arteries for some reason not well understood. Instead we have a connective tissue disorder that leads to aneurysms. That's what I have: a stenotic (calcified and narrowed) aortic valve and an aortic aneurysm. So I can't left heavy objects or do anything that raises my blood pressure quickly or excessively. But things like walking, recreational swimming, light shovelling (I'm careful not to lift too much snow and I take a lot of breaks,) these are OK forms of exercise. Surgery is in my future but I have to be "ripe"...the "numbers" have to indicate that it's time. They balance the risks of surgery against the risks of something happening to me without the surgery. My cardiologists thinks I have a year or more to go yet. I see him again in April and get an echo then.

Actually, I walk four to five miles every day but not now with the snow. So my light shoveling and cleaning off the car are my exercise for today so far. Later we will take a walk over to the grocery store. I cleaned off the car but it will be days before I can get it out of its snowed-in location. And then once I get it out I have to worry about finding a place to re-park it. City Life!

Stable: We'll Take It!

2011-01-14T05:10:00.000-08:00

Photo: Loki, our Burmese kitten, at seven months

Everything is pretty stable. I'm still doing my twice a day 1 hour walks. I usually log four to five miles a day, seven days a week, weather permitting. I don't feel as though things are getting any worse. Of course, there is no way to feel any changes in the size of the aorta. That assessment will have to wait until the echo in April. I did have my annual physical last Monday. I need to diet... but other than that I passed it. So what else is new?

Time For An Update

2010-11-29T05:10:00.000-08:00

Photo: taken near Taormina, Sicily

Thanks to those who commented on my previous post. I seem to be stable except that I notice an increase in fatigue especially at night. I wake up feeling more tired than I did during the day. The throat tightness that I've had for years I can feel now even while walking. At fdirst I felt it only upon heavier exertion. All of this is no surprise, just to be expected. Nevertheless, we're going forward with our travel plans for next year. I see the cardiologist and get an echo in April.

Good News On Minimally Invasive Surgery!

2010-09-25T04:56:00.000-07:00

Photo: I try to eat vegetarian as much as I can. For my little Autumn equiniox celebration I had a veggie burger with An Indian curry, nan bread and yellow squash...yummy!

Thank you BenjaminJC and Mary for your great comments to my last blog entry.

Mary, very best wishes to you for your surgery on October 1. Please let me know how you are doing.

Mary and Benjamin...do you know about valvereplacement.org? It's a wonderful web site for support and discussion. Please have a look at it.

On Adam Pick's web site (he wrote a book on valve replacement surgery,) I was able to ask a question of Dr. Roselli at the Cleveland Clinic that is very important to all of us with BAV and aneurysms:

Jim_K: Is a dilated ascending aorta (4.5 cm) a contraindication for AVR via minimally
invasive techniques?
Dr__Eric_Roselli: No. Not at all. Other surgeons and I who perform a lot of minimally
invasive aortic valve surgery will also perform more complicated operations involving
the aortic root, the ascending aorta, the aortic arch and the mitral or tricuspid valve
procedures all at the same time using minimally invasive techniques.

I didn't know this! It certainly is good news for me because when it's time for surgery I will have to have my ascending aorta addressed as well as the valve replacement.

Cleveland Clinic Formula For Aneurysm Surgery

2010-08-11T10:43:00.000-07:00

Photo: One of the lovely roses in our garden.

This summer has been quiet on the medical front. Other than the fact that I get easily winded and I do not have any reserves to call upon in a situation that calls for extra physical effort or exertion, I feel fine. As my aortic stenosis progresses and the valve opening gets smaller and smaller, my heart just can't pump enough blood through my aortic valve to support increased levels of exertion. I am disappointed that I can't do all that I want to do or used to do physically. For example, I'm afraid to go out actually swimming in the ocean in water any deeper than about waist high, because if I were to get caught in a current, I simply no longer have the strength to fight my way back in. I used to be able to handle this sort of situation, but I can't anymore.

When you have an aortic aneurysm, it's like having a defective tire on your car. It could blow at any time. However, to get it fixed surgically, it has to be a certain size. I've been trying to find this formula for a while now.

An aorta that is enlarged and forming an aneurysm can be repaired, but at Cleveland Clinic we more often replace the damaged section with a section of plastic tubing that is sewn into position. The timing for repair of an aortic aneurysm is critical. When the valve is faulty and the aorta has enlarged to greater than 4.5 cm, we repair the aorta at the same time we repair or replace the valve. If the aorta has enlarged but the valve is still good, the optimal time to repair the aorta varies. At Cleveland Clinic, we have developed a special mathematical formula we use to determine this, based on the patient’s height and weight and the size of the aorta - surgery is usually recommended when the aortic cross sectional area in square centimeters, divided by the patient's height in meters is more than 10.

Source: http://my.clevelandclinic.org/heart/...e_disease.aspx

If I understand this correctly and my calculations are correct, here are two examples:

I am 6'5" tall, which is 1.96 meters. Currently my ascending aorta is at 4.5 cm diameter, which calculates to a cross sectional area of 15.9 cm2. 15.9 divided by 1.96 = 8.1 which is less than 10, not time yet for surgery.

If and when my ascending aorta reaches 5.0 cm in diameter it will then have a cross sectional area of 19.6 cm2. 19.6 divided by 1.96 = 10, which is the recommended trip point for surgery on my aorta.

I'm a taller than average person. Based on a person that is, say 5'10 inches tall, the calculations are different. A person that height will have a calculated formula factor of 8.9 when her aneurysm is at 4.5, still not yet time for surgery. However, when her aneurysm reaches 4.7 cm, her formula factor rises to 9.8, and when the aneurysm is 4.8 cm across, her formula factor is then 10.2, and surgery would be recommended according to the Cleveland Clinic formula.

The Plan

2010-04-26T05:05:00.000-07:00

I'm "stable" for now and due for another echo next year. My cardio thinks I have a couple of years before the numbers would perhaps dindicate the need for intervention. It's not great to have this hanging over me for the indeterminate future. I also face the prospect of a long slow decline in my physical condition as the aortic stenosis worsens. Finally, nobody likes walking around with an aortic aneurysm. However, I have to make the best of the situation, keep enjoying life, and that's what I plan to do.

Cardiologist: "A Couple Of Years Before Trouble"

2010-04-17T05:23:00.000-07:00

My visit with cardiologist Dr. Keane yesterday went well. He believes my condition is stable and that it will be at least a couple of years before my condition becomes problematic. My next appointment is in a year. He believes that this is safe. So I'll have my nech echocardiogram in April 2011.

Vacation Fun

2010-03-21T03:46:00.000-07:00

We went on a one week cruise to the Caribbean recently. I had the opportunity to do some snorkeling and underwater photography, which I really enjoy. Swimming and snorkeling in the sometimes choppy ocean gives you a workout. So far I have not noticed any difficulty in doing this sort of activity. The only signs I have of valve disease continue to be the palpitations and throat tightness I sometimes experience. I also wake up many times after a night's sleep actually feeling tired. It's like my heart gets no rest even at night fighting against the stenosis. I guess this situation will continue this way for the forseeable future.

Winter TIme Fitness Challenges

2010-02-07T07:50:00.000-08:00

This winter has been difficult for me in terms of keeping up my exercise and activity plan. Since walking is my preferred activity, when it gets cold and particularly when it gets snowy and there is ice on the ground, wlaking is tough. Yesterday we got 28.5 inches of snow and the weather is supposed to remain very cold for the next several days. Walking is going to be a challenge. Howerer, this morning I did about a half hour of saucer sledding. It was fun and it was a great workout!

I'm In The Slow Lane

2009-12-19T10:29:00.001-08:00

Got my latest echo report:

2008 gradients: 22/36 mmhg
2009 gradients: 16/27 mmhg

2008 AVA: 1.3 cm2
2009 AVA: 1.2 cm2

2008 ascending aorta: 4.25 cm
2009 ascending aorta: 4.5 cm

2008 aortic root: (SOV 3.5cm, STJ 2.55 cm)
2009 aortic root: 3.7 cm

2008 EF: 55%
2009 EF: 70%

The echos were done a year apart in November. Soooooo, it looks like I'm in the slow lane...relatively stable...in the waiting room for the time being.

Jim

Cardiologist Appointment

2009-10-11T05:17:00.000-07:00

The Hotel Julia in Rome, where Dan and I stayed 25 years ago. At the top of the street is the Barberini Palace and the Spanish Steps are not far away.

I saw my new cardiologist, Dr. Keane, on Friday. Two good pieces of information were the results of the stress test that I did in the Spring were negative for coronary artery disease, and that my aorta is normal from above the dilated area through the arch and the entire descending aorta. That's really good news because some of us with BAV have problems with aneurysms in other locations like the descending aorta. My blood pressure is edging higher, a cause for concern. If I can manage to shed a few pounds that might help. The most important decision that we made at this appointment was to evaluate my next echo scheduled for November before proceeding with another CT scan. I proposed that if the numbers are stable then I'd like to put off the CT scan because of radiation exposure. Dr. Keane agreed. So next month I'll get the yearly echo, compare it with last year's echo, and we'll go from there.

Have I Developed A New Symptom???

2009-09-10T03:23:00.000-07:00

Lately I have been having this swallowing problem. I've had several episodes where it seems like food gets stuck in my thorat on the way down. For years I've had throat tightness...at first it was only on exercise exertion, but now I get it just walking. I don't find references to these symptoms in the literature. Could it be the aneurysm compressing the esophagus?

I just found this:

Symptoms of an aortic arch aneurysm or a descending thoracic aneurysm may include, but are not limited to, the following:

wheezing, coughing, or shortness of breath as a result of pressure on the trachea (windpipe)
coughing up blood (hemoptysis)
hoarseness as a result of pressure on the vocal cords
difficulty swallowing (dysphagia) due to pressure on the esophagus
pain in the chest and/or back

and this:

What Are the Symptoms of an Aortic Aneurysm?
Aortic aneurysms often cause no symptoms at all. But if present, symptoms include:

Tearing pain in the chest, abdomen, and/or middle of the back between the shoulder blades.
Thoracic aneurysms may cause shortness of breath, hoarseness, brassy cough (due to pressure on the lungs and airways), and difficulty swallowing (pressure on the esophagus)
Rupture of an aneurysm can cause loss of consciousness, stroke, shock, or a heart attack
If you are experiencing sudden unexplained chest, abdominal, or back pain, or any of the other symptoms mentioned above, seek medical attention.

???

Jim

Flying The Friendly Skies Again

2009-08-21T12:55:00.000-07:00

We'll be on holiday soon...overseas...on another cruise. I really like cruises. There is nothing like being pampered. I'm on schedule for my six month check up with my primary care physician and my cardiologist in October. It will mean another round of tests. If things are stable then six months later I'll do it all again. There is no way to know for sure, but my guess is that not much has changed since last winter. We'll see.

Valve Disease Symptoms

2009-07-25T04:58:00.000-07:00

A heart valve patient writes in an online article:

One morning I woke up feeling really tired - I couldn't understand it because I'd had a good night's sleep. Then over the next few weeks I started to feel breathless - it was a struggle even walking upstairs, which was odd as I've always been so fit and healthy. After about two months of this, my feet suddenly swelled up overnight - I couldn't even get my shoes on - and my throat felt really tight.

This morning I woke up feeling really tired even though I slept well last night. I also have a dull feeling, not quite a pain, in my chest. It feels like my heart is just so tired. I keep watching my ankles but so far there is no swelling and I'm not breathless. I've had tightness in my throat for years on exertion. These are "pre-symptoms" of valve disease. They don't count and you have to wait until you faint, get dizzy, or otherwise keel over.

So, it's back to watch and wait.

Summertime Relaxation

2009-07-19T08:06:00.000-07:00

I'm enjoying my twice daily beach walks with Bradley the dog. We try for three miles in the morning and one mile in the afternoon, but sometimes we just play ball and swim in the afternoon. Summertime has finally arrived!

Photo: the garden railroald at "Liberty Bell," our beach cottage on Fire Island

Feeling Good!

2009-07-08T04:49:00.000-07:00

Here's a photo of me and Dan that was taken 25 years ago in top of the Eiffel Tower in Paris. It was our first overseas trip together. We started in Paris and then flew to Rome. Next month we'll be returning to Rome for the first time in 25 years. We'll see some sights then embark on a cruise to Egypt and the Greek Islands.

I'm feeling fine. I don't notice any increase in the intensity of any of my relatively minor symptoms. I walk three to four miles a day. My weight is not good but at age 60 at least I'm not obese and I'm still quite active.

My friend Jane had her surgery last week and she's doing well. That is good news!

Still Trying To Be As Active

2009-06-17T04:52:00.000-07:00

Yesterday I walked five miles on the beach with Bradley, our dog. Last year I usually walked four or five miles a day on the beach and I'm hoping I can continue that pace this year. I've also been swimming in the ocean, although it's been a cool and rainy Spring with not much real beach weather.

As for symptoms, I continue to feel my heartbeats pulsing up into my throat. Five years ago I only felt this when I exercised. Now I can feel it when I'm resting. What is it? I think it is my enlarged aorta pressing against the esophagus or other throat structures that I'm feeling. When I have my next echo in six months I'll know if there has been any enlargement of the aneurysm.

PHOTO: a gargoyle in Lyon

Vacation And Status Update

2009-06-01T04:24:00.000-07:00

Photo: The cloister at Moissac, France

Dan and I just returned from a great 2-1/2 week trip through Southern France. At the end of the trip we flew to Lisbon for a couple of days. I felt fine during the trip but a little more tired than I would have liked after we got back. It was probably just jet lag.

I'm now pretty much convinced that the pressure and tightness that I feel in my throat is due to the enlargement of the aorta pushing against the esophagus or other nearby structures. This started about a year after I first learned that I had a valve problem. At first I felt the pressure only when I really exerted myself like when I would jog for exercise. But now I feel this pressure even when I'm not doing anything strenuous. It feels like my heart is beating right up into my throat. That's about the best way I can describe it.

I've read some articles recently that help me to better understand the relationship between bicuspid aortic valve disease, aneurysms and aortic stenosis. Unfortunately, aortic stenosis combined with BAV and an aneurysm is sort of a triple whammy - not good! The stenosis (narrowing of the aortic valve) produces hemodynamic forces (a jet) that stress the aorta, according to one studay I read. There is a lot of debate about when to have surgery for an aortic aneurysm, i.e., at what size aneurysm. 5.0 is usually the trigger point for surgery except for Marfans patients. For those with Marfans, 4.5 seems to be the trigger size. Since bicuspid valve disease is in some ways similar to Marfans, there seems to be some who feel that 4.5 should be the trigger point for BAV patients. Then there is the whole body size calculation that figures in to the equation. Bigger people may have naturally larger aortas, so for them the surgery trigger size might be larger. However, there is a risk of rupture or dissection at just about any size. So the debate goes on. I'll find out if my aneurysm is growing and if so, at what rate, when I get tested in the Fall. If he aneurysm is stable (not enlarging,) that's one thing, but if it is growing at more tan .1 cm per year, that is of great concern.

Stable For Now

2009-05-05T04:20:00.000-07:00

It's nice to be on hold for a while from tests and doctor's appointments. I read an article yesterday that indicated that aortic aneurysms grow slowly, at about 1 mm per year. If mine grows at that rate it wouldn't reach the critical 5 cm stage for seven more years. I also have some time hopefully before my aortic stenosis becomes critical. So the job is to stay healthy - I wish I could lose some weight - and stay on top of developments. My next appointment isn't until the Fall so I get to take the summer off.

Good Cardio Report

2009-03-30T08:58:00.000-07:00

My cardio called today to tell me that the stress test was negative, good news. My symptoms are probably related to the AV stenosos. Finally, it's not time for surgery. So I will see him again in October and we'll take it from there. Incidentally, in the literature there are references to people with BAV to the effect that usually they do not get CAD. Works for me!

Walks By The Graff Memorial

2009-03-29T06:50:00.000-07:00

The recently restored Frederick Graff memorial at the Fairmount Water Works here in Philadelphia. This is placed next to the trail where I do my afternoon walks every day.

NST Final

2009-03-28T06:49:00.000-07:00

I completed the test yesterday and I think I did pretty well.. I did get that dull pressure in my throat and center chest that I have noticed for the past four years. Even hours after the test I could still feel it a little. I do feel encouraged to say the least that I can still do something like this at age 60 with a stenotic BAV and a dilated aorta. It pays to try to stay in condition. And as has been said many times, the body compensates for the AV disease.

NST Part III

2009-03-27T08:39:00.000-07:00

I finished the treadmill part of the test a few minutes ago. I think I did pretty well. I reached my target heart rate of 136. There didn't seem to be any irregularities in the ECG, and it looked like a had a good blood pressure response to exercise. I did get that dull pressure in my throat and center chest that I have noticed for the past four years. Even now, about 45 minutes after I got off the torture machine, I can still feel it a little. So we'll see what the cardio says after he looks at the report. In a few minutes I go in for the last scans then I can go home.

Nuclear Stress Test Part II

2009-03-27T07:05:00.000-07:00

I just finished the first series of scans with the fancy "camera" they use to scan the heart after the radioactive isotope has been absorbed. The next step is the dreaded treadmill test. We'll see how it goes!

Live Blogging The Nuclear Stress Test

2009-03-27T05:34:00.000-07:00

The new Perarman Center here at the University Of Pennsylvania hospital is really nice. The whole complex has wireless for patients and guests...which make me happy since I have a computer attached permanently to me. So I got my first injection of isotope and I'm waiting to start glowing before they start taking images. The IV line is a little uncomfortable when typing but not too bad. They do the resting part first, then later on comes the treadmill part. (UGH!)

Stress Test "Positive?"

2009-03-23T11:17:00.000-07:00

For patients with AS, a stress test can be "positive." Here's what that means:

A Positive exercise test indicates symptoms, abnormal ST-segment response, or abnormal blood pressure response (less than 20-mm Hg increase) with exercise.
In one series,117 patients manifesting symptoms, abnormal blood pressure (less than 20-mm Hg increase), or ST-segment abnormalities with exercise had a symptom-free survival at 2 years of only 19 compared with 85% symptom-free survival in those with none of these findings with exercise. Four patients died during the course of this study (1.2% annual mortality rate); all had an aortic valve area less than 0.7 cm2 and an abnormal exercise test. In another series,118 exercise testing brought out symptoms in 29% of patients who were considered asymptomatic before testing; in these patients, spontaneous symptoms developed in 51% over the next year compared with only 11% of patients who had no symptoms on exercise testing. An abnormal hemodynamic response (e.g., hypotension or failure to increase blood pressure with exercise) in a patient with severe AS is considered a poor prognostic finding.117,125 Finally, in selected patients, the observations made during exercise may provide a basis for advice about physical activity. Exercise testing in asymptomatic patients should be performed only under the supervision of an experienced physician with close monitoring of blood pressure and the ECG.

Getting "Nuked" On Friday

2009-03-23T07:34:00.000-07:00

I have a nuclear stress test this Friday. My new cardiologist wantrs to check that there is good blood supply to all areas of the heart. The ACC/AHA guidelines recognize the value of exercise testing for people with valve disease:

2.1.6. Exercise Testing

Exercise testing can provide valuable information in patients with valvular heart disease, especially in those whose symptoms are difficult to assess. It can be combined with echocardiography, radionuclide angiography, and cardiac catheterization. It has a proven track record of safety, even among asymptomatic patients with severe AS. Exercise testing has generally been underutilized in this patient population and should constitute an important component of the evaluation process.

Hooray! Someone I Can Talk With

2009-03-20T11:53:00.000-07:00

I had my appointment this morning with Dr. Martin Keane at the Hospital of the University of Pennsylvania. Finally I found someone who I am comfortable with, who listens as well as speaks, with an easygoing and reassuring manner, yet who is frank about the situation. He suggested that I get a nuclear stress test so I signed up for that next Friday. It will be interesting to see how I manage during the stress part now that my aortic valve is moderately stenotic. This test is supposed to show the condition of the coronary arteries, I believe. According to the literature, people with BAV disease are usually not prone to developing CAD. I don't think I have coronary artery blockages. When I get my usual tightness it's in my throat area. Other people with valve disease have reported this tightness or pressure in the throat area. Well, we'll see if there is any more information after the test next Friday. I hope I don't keel over during the test!

In any event, I feel a lot better now after having seen Dr. Keane.

New Cardiologist

2009-03-20T05:01:00.000-07:00

I'm meeting my possible new cardiologist this morning. I say "possible" because we'll have to see how it goes. More later.

Endocarditis! Scary Stuff.

2009-03-18T04:19:00.001-07:00

I've been reading a few posts on VR.com written by people who have had endocarditis as a result of valve disease. It really is scary because according to one report the overall mortality rate is 20 percent. I used to take preventative antibiotics before dental appointments because that was recommended. However, the guidelines were recently changed and I no longer need to take them. Still, it's a scary prospect when you read how sick some people become by, in some cases, merely brushing their teeth!

Blood Pressure Wars

2009-03-17T05:37:00.001-07:00

Read the instructions. That's always good advice. I read the instructions that came with my Omron blood pressure monitor on how to take your blood pressure properly. Sit, relax, make sure your back is supported, arms at the level of your heart, take three measurements a minute apart and average them. If you do it this way you may find that your readings are generally lower. I did.

Road Trip

2009-03-13T05:14:00.000-07:00

It's been quiet on the medical front here lately. I did get a clean bill of health from my dermatologist yesterday which made me happy considering how much time I spend in the sun. On Wednesday Dan and I made a day trip by train to Washington, DC. We had fun and saw several major attractions while we were there. Next Friday I have an appointment with a new cardiologist. So, we'll see how that goes. I daydream often about the heart valve problem trying to figure out how much time I have left before it finally goes. One year? Two? More? Who knows?

Winter Walks

2009-03-04T05:17:00.000-08:00

It's been tough lately to get my daily walks in with all the snow and wind and cold. But I get to see beautiful sights like these sculptures in Fairmount Park. So, there are incentives to get out there and walkl. I have cleats that I wear over my sohes so that I don't fall on the ice.

Anna Netrebko / A. Dvořák - Rusalka

2009-03-01T03:22:00.001-08:00

THis is good for the heart.

The Undiagnosed: Palpitations

2009-02-23T05:47:00.000-08:00

I can remember being told as a child that I had a heart murmur, but I was assured that it was noting to be concerned about. I've had palpitations, pounding sensations from my heart, for a long time. I can remember actually going to a cardiologist about 20 years ago to simply ask him why I was having these sensations. "Too much caffiene," was one of the possibvle explanations he gave. Again, not to worry, I was told.

It wasn't until 2004 and my first echocardiogram that someone finally told me, oh, by the way, you have a problem with your aortic valve. It took a long time for the alarm to finally go off. I wonder how many other people are out there walking around with heart probelms that they don't know about. No wonder a lot of poeple just keel over and die.

The photo shows one of the the beautifuly reconstructed pathways near the Philadelphia Museum of Art. I walk by this just about every day on my afternoon walk.

Walking For Exercise

2009-02-20T05:51:00.000-08:00

Walking continues to be my preferred mode of exercise. Having a great dog who likes walking along with me helps to insure that I get out twice a day at least. I usually walk four miles a day 365 days a year. Only rain, snow, or ice slows us down or stops us. On our morning walk we pass this lovely boat house on the Schuylkill River.

Symptoms

2009-02-18T08:29:00.000-08:00

People feel a variety of symptoms of valve disease and aneurysms. My experience is a tightness in my throat on exertion (sometimes into my jaw and face) which has gotten worse over the years. It stopped me from jogging a few years back and now I get it if I climb two flights of stairs or walk up a hill. It'[s a reminder that no matter how well I feel otherwise, I've got this valve/aneurysm problem.

More Doctors Appointments

2009-02-17T05:17:00.000-08:00

I made an appointment to see the new cardio in March. I'm trying to convince myself to keep it. Since I've relaxed after the intense month of heart related emotional ups and downs, I just really feel like moving on and enjoying my life for a while. Worst case is I wait for more serious symptoms - then do something. I may just do that for a while. I also made a dermatologist appointment for a check up. I spend a lot of time in the sum out on Fire Island, so I figure it's a good idea to get a look over once in a while (any excuse to take my clothes off! :)

I do read and post regularly on VR.com. I find it interesting to read about the various different kinds of issues we valvers face. And it's an OK place to hang out on line although I don't really have any close friends there.

CT (Cat) Scans vs. Heart Catheterization

2009-02-15T07:57:00.000-08:00

I was supposed to have both in December but I ended up only getting the CT Angio due to an office error. I don't really know whether just the CT is sufficient but the surgeon seemed to want it then. I guess it depends on the doctor. However, when I next go back I'm just supposed to get another CT, so that tells me that it's not a bad idea to ask if the more invasive procedure is really necessary.

But, are CT scans dangerous due to radiation exposure?

Here's what the hospital (Penn) says:

This test provides a different and more detailed picture of tissue and bone than is possible with a routine x-ray. The scan itself is painless and very safe. our radiation exposure is slightly more than a routine x-ray.

Pre-Meds For Dental And Other Procedures

2009-02-08T08:28:00.000-08:00

The current AHA/ACC guidelines no longer recommend antibiotics prior to dental and other procedures fro people with murmurs and heart valve problems to prevent endocarditis. The one exception is for people with prosthetic heart valves. I recently re-read the revised guidelines. I had a colonoscopy last week...which resulted in a single plolypectomy...and, of course, the new guidelines do not require pre-meds for these sorts of procedures so I have not been doing pre-meds since the guidelines changed.

They make a strong case for the revision. The primary argument is that so few cases of endocarditis are actually prevented by pre meds that the benefit is out weighed by the down side effects, e.g. the development of resistant strains of bacteria, cost, etc. Of course, if you are one of those who gets endo then their arguments don't help much.

Exercise And Aneurysms

2009-02-06T07:27:00.000-08:00

The literature on BAV disease seems to indicate that aneurysms can and do occur independently of valve stenosis/regurgitation...e.g., even after AVR. BAV disease is thought to be a connective tissue disease (like Marfans.)

I don't remember reading that more intense forms of exercise have been shown to exacerbate the formation of aneurysms. Recommendations for exercise seem to be based on the individual patient's situation. In my case, I was recently told not to lift more than 1/2 of my lean body weight, and that I can do any exercise that does not make me grunt or cause extreme fatigue. This comes from a top surgeon at a major university heart center (Bavaria/HUP).

Aneurysms develop because of weakened tissue in the walls of vessels due to genetic factors. However, once an aneurysm is present, then certain activities, like competative sports and weight lifting, should be avoided because of the risk of rupture or dissection, while other forms of exercise, like walking, are actually beneficial. Blood pressure control is the therapy for aneurysms.

Still Wanting Answers

2009-02-04T07:10:00.000-08:00

Well, I've decompressed some since the surgeon kicked me out of his office a month ago, but I'm still uneasy about my heart valve situation.

The "2008 Focused Update Incorporated Into the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease" chart on the severity of valve disease in adults is here.

As you can see, a valve area index of < .6 is considered severe. My "numbers" are: valve area 1.3 cm2 (technically "moderate"), but "severe" - when adjusted for my body size - valve area index = .55. Even so, my surgeon put me on hold for surgery for the time being. And I have a dilated aorta (aneurysm) and I'm BAV to boot!

When I met with the surgeon he seemed annoyed that I was taking up his time and indicated that he didn't think my situation was that bad...I forget exactly what he said, something to the effect that my aortic valve is only moderately calcified, if I remember correctly. He's not the kind of doctor that is interested in you understanding what he feels your situation is...not easy to converse with...he came off to me as impatient. My Long Island cardio is like that too.

I guess I'll try to find another cardiologist who has some patience and see if I can get someone to discuss my situation with me.

Aspirin Therapy And Colonoscopy/Polypectomy

2009-02-03T07:10:00.000-08:00

Yesterday it was time for my once every five years colonoscopy. Part of the prep instructions was for me to stop taking aspirin a week before the procedure. I had one polyp, which was removed, but now I was told that I cannot resume my aspirin therapy for another week over concern about bleeding.

However, According to the American Institute Of Gastrointestinal Endoscopy guidelines, it was really not necessary for me to stop aspirin therapy:

Aspirin and other NSAIDs in patients undergoing elective endoscopic procedures Aspirin and most NSAIDs inhibit platelet cyclooxygenase resulting in suppression of thromboxane A2-dependent platelet aggregation. Limited published data, however, suggest that aspirin and other NSAIDs in standard doses do not increase the risk of
significant bleeding after EGD with biopsy, colonoscopy with biopsy, polypectomy or biliary sphincterotomy.

So I guess my doctor is just being over cautious. I like him and have a lot of confidence in him. But I'm aware that not all gastroenterologists may be up to speed on these sorts of issues.

Genetics And BAV Disease

2009-01-31T07:38:00.000-08:00

I was talking with Scott in Austin, TX the other day. Scott is another gay guy who just had OHS to correct an aneurysm. He had AVR three years ago but they didn't address the aorta at that time...a serious mistake. So he had to have another surgery. He is (was) BAV. He told me about some genetic research that is going on to try to find the marker for BAV disease. This is research that really needs to be done. He gave me the name and telephone number of the person he has as a contact...called a Bicuspid Genetic Counselor. I think I'll telephone this person next week and see what they're up to. He seems to feel like they are interested in identifying others with BAV to include in their studies. BTW, Scott told me that none of his first degree relatives are BAV, but he has a couple of cousins that are!

Should I Scuba Dive Anymore?

2009-01-25T16:50:00.001-08:00

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

2009-01-24T04:12:00.000-08:00

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

2009-01-18T07:13:00.000-08:00

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

2009-01-12T11:03:00.001-08:00

Who, indeed?

Marfan Syndrome Similarities

2009-01-09T05:22:00.000-08:00

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

2009-01-08T05:21:00.000-08:00

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

2009-01-07T02:04:00.000-08:00

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.

CT Scan Today

2009-01-06T07:30:00.000-08:00

So in a couple of hours I'll be inside one of these CT scanners. They produce fascinating images and great detail which allows for excellent evaluations.

An Important Day

2009-01-06T03:26:00.000-08:00

Well, today is an important day for me and those who care for and support me. I get a CT scan, EKG, chest X-Ray and then I meet with my surgeon, Dr. Bavaria, at the University Of Pennsylvania hospital. I expect that we'll have a game plan worked out by the end of the day and I'll have a much better idea about the condition of my coronary arteries and aorta, and a good idea in regard to the timing of surgery. Unfortunately, I'm battling a sinus cold that I've been unable to shake for weeks. Nevertheless, I'll make my way over to the hospital in West Philadelphia a little later this morning to start getting the testing done.

WHo Is Allowed To Visit In The ICU?

2009-01-05T06:03:00.000-08:00

I'm just catching my breath from a busy weekend at the toy train exhibition,. I had fun but it was a bit exhausting.

My friend Jane has raied the issue of who can visit me in the ICU when I'm hospitalized. This has entered my mind, of course. Dan and I have Power Of Attorney, Medical Power Of Attorney, and Living Wills drawn up, but I will have to find out what the policy of the hospital is in regard to unmarried significant others.

Easy Does It!

2009-01-03T03:11:00.000-08:00

So yesterday I spent the day as part of a team setting up my toy train club's display up at a big train show in Oaks, Pa. just outside of Philadelphia. This was the first time I found myself consciously making sure that I didn't lift anything that is too heavy or otherwise do anything too strenuous out of fear of doing damage to my aneurysm. In the past I've always been a big bull and not afraid to lift things or put my shoulder to something to move it, etc. Those days are gone now. I still had a lot of fun and managed to be useful without doing anything risky. It just calls for a little common sense.

New Reading Mateial

2009-01-02T03:27:00.000-08:00

Member Shannon over at VR.com posted a link to a recent (December 2008) set of ACC/AHA guidelines for the management of congenital heart diseases. Bicuspid valve disease is a congenital condition. I haven't read it yet but the document in PDF format is here.

Gran Torino Trailer HD

2009-01-02T03:01:00.001-08:00

Run Don't Walk to see this excellent movie. It will surprise you and it's good for the heart!

Symptoms: Who Me?

2009-01-01T03:54:00.000-08:00

I used to pride myself on being able to leap tall buildings in a single bound. When we traveled I would always do the physical stuff like climb hundreds of steps to get to the top of the cathedral tower in Ulm, Germany. However. this past year we were in Spain and I couldn't even consider climbing to the top of the church tower in Santiago De Compostela for the view. On a cruise ship in October I couldn't walk up the several flights of stairs to get to my room at one point.

One day last summer I swam out to the sand bar off Fire Island. On the return I got a little tired and panicky but I made it. When I got to the beach I had major chest tightness down into my left arm. I put the dog on a leash and walked it off but it took 45 minutes.

These things are symptoms of my BAV disease to be sure. In the literature you find references to the subtle nature of some of the symptoms of valve disease, and warnings to cardios and surgeons that patients may not be aware that they actually do have symptoms. Last year in August when my cardio asked me about "chest pain, dizziness, shortness of breath, etc." I said no. That was a lie, but I was in denial.

What is clear in the literature is that people with BAV who are symptomatic should have surgery.

1997 counting crows at pinkpop - long december

2008-12-31T05:36:00.001-08:00

"The smell of hospitals in winter..."

Avoiding Permanent Heart Damage

2008-12-31T04:02:00.000-08:00

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

2008-12-30T02:48:00.000-08:00

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

2008-12-29T02:37:00.001-08:00

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

2008-12-28T05:17:00.000-08:00

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

2008-12-26T23:41:00.000-08:00

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

2008-12-26T23:15:00.000-08:00

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.

Of Hills And Christmas Dinner

2008-12-26T05:46:00.001-08:00

I did a quick walk yesterday afternoon before our dinner guests arrived. On the way back I took the route that requires an uphill walk up a ramp. I sure felt that, and not in a good way, with a little chest tightness and SOB.

For Christmas dinner I cooked a vegetarian entree: Tofuturkey. I've tried the stuffed tofu substitute poultry entrees that are available at our local Whole Foods and I like them. So we had something that didn't have to die available for those so inclined, in addition to the traditional "dead bird" that we're all used to. Three out of seven opted to go vegetarian, which is also heart healthy.

Asymptomatic But Needing Surgery

2008-12-25T04:52:00.000-08:00

This was posted recently on VR.com:

I am an active 44yo male with AI diagnosed in childhood. I have enjoyed annual checkups and echos (until this year). Recently I visited my cardio for my exam and he now informs me I have progressed to "severe" and surgery is needed. I am going for a second opinion in early January. I have always known that surgery is immanent but now? I feel great exercise pretty regularly, and am very active with no limitations. I have always been told what symptoms to look for and I have none
of them.

It's amazing how you can walk around and do most anything even though your valve is in bad shape. If you are in good physical condition, the body adapts and this can fool you. I'm in the severe range myself with a bicuspid aortic valve and a 4.3cm ascending aortic aneurysm, yet I feel fine and can do most anything...well, I get winded and I can't push to hard or else I get chest tightness. But I don't feel like I need surgery even though I do.

Blood Pressure Wars

2008-12-24T04:54:00.000-08:00

When I was younger, before my AV went bad, I used to have really good blood pressure, e.g., 100/60. Apparently, as BAV disease progresses, you develop what is know as "labile" hypertension. That's when your systolic (top mumber) blood pressure rises quickly and substantially when you exercise, become excited, etc. I don't understand the mechanism, but labile hypertension is one of the symptoms of BAV. Yesterday I went to see my doctor to get some blood tests done. Of course, many people have increases in BP in the doctor's office. Mine was way high (for me,) something like 160/90. My usual resting BP is in the 130/80 range. Well, my days of not taking any pills are just about over. I'll have to go on some sort of BP medication ASAP. I really should be on it already.

BAV Disease & Surgery Timing

2008-12-23T07:32:00.000-08:00

From the Cedars-Sinai web site:

Generally speaking, a slightly enlarged aorta in the presence of a bicuspid aortic valve (BAV) has a higher incidence of aneurysm formation and dissection. Unfortunately, there are no tests that can predict whether or not the aorta will continue to enlarge or be prone to dissection in the future. Because of this and the high mortality rate associated with acute ascending aortic dissection in those with bicuspid aortic valves, specialists in aortic surgery recommend that a slightly enlarged ascending aorta be replaced at the time of valve replacement.

On the CS website, the trip wire for surgery on an aortic aneurysm on someone with a bicuspid aortic valve is 4.5 cm. However, the above paragraph stipulates that for people with BAV, even a "slightly enlarged" aorta should be replaced at the time valve surgery is done. This is because people with bicuspid valve disease have a higher risk of aortic aneurysm rupture or dissection.

Now, my aorta was just measured at 4.3 cm, which is more than slightly enlarged, it's an aneurysm. Even if my aortic valve was just fine, which it isn't - it's moderately to severely stenotic - I would only be 2/10ths of a CM away from the surgery trip wire. So what's it gonna take for my surgeon to pull the trigger and schedule me for surgery? Not much, I don't think!

Two Weeks Until Decision Day

2008-12-23T02:33:00.000-08:00

I've been following Scott's progress down in Texas. He had surgery last Thursday. Today he is finally getting out of the ICU and into a regular room. He had his second open heart surgery to replace a dilated aorta and root and they put in a new aortic valve. Probably because this was his second OHS, he needs a pacemaker to keep his heart beating properly. It seems like his recovery is on track, although he will require a longer hospital stay. His partner Byran will be staying in the room with him from this point on, according to what I've read on Scott's blog, so that should insure that all of Scott's needs are taken care of. I wish him the best and hope that he can be released maybe by the weekend.

I go to get blood work done today in advance of my CT scan scheduled for January 6. So, it's two weeks from today until I meet again with the surgeon and find out what the battle plan is. In the meantime, I'm still walking twice a day for a total of about four miles, even in the cold. Yesterday my AM walk was interesting because the wind was really blowing strong from the Northwest off the river, and the wind chill must have been about zero degrees. It felt like that anyway. I wear my heaviest parka, hood, gloves and "Ninja" mask to cover my face. The only thing that was cold was my legs. I could benefit from some "Long Johns" but they are hard to come by to fit me because of my long legs.

Anyway, I'm feeling good and I'll continue the walks, and continue living life as normal as I can until Jan. 6. I have only minor symptoms, the palpitations, and getting winded easily on hills and steps. No dizziness yet, or swelling of the feet, etc. But why wait for that to occur? My condition is not going to get better, only worse. Also, aneurysms don't usually have symptoms...until they burst or dissect...and then you're in BIG trouble.

So, January 6 will be the day of reckoning. We'll see what happens then and we'll take it from there.

Open Heart Surgery And Pacemakers

2008-12-22T03:39:00.000-08:00

With OHS, after you get out of surgery you're hooked up with quite a few tubes and wires. One of the connections is a set of pacemaker wires that the surgeon puts in during surgery.

Here's an explanation of why patients undergoing open heart surgery require temporary pacemaker wires inserted during surgery:

After heart surgery or another life-threatening event involving the heart, it may be necessary to put in a temporary pacemaker to make your heart beat at a normal rate...One type of temporary pacemaker may be attached to the patient's heart during heart surgery. This type has wires which go from the heart through an incision in the lower chest to an external box that makes the heart beat normally.

As I understand it, while the wires are present after OHS, a pacemaker may not be needed if the heart beats regularly and the wires may be removed at some point during recovery, or a permanent pacemaker may be needed.

What Will The Surgeon Suggest?

2008-12-21T05:04:00.000-08:00

So, I have a bicuspid aortic valve with moderate stenosis and a dialated aorta. I meet with my surgeon again on January 6 after I get my tests done. What will be his recommendation: wait?...or surgery? It's not clear cut, it seems to me. In the literature, there is a great deal of controversy about both the timing and the extent of heart valve and anuerysm surgery. Some studies recommend replacing the dilated aorta if it is over 5 cm, others are at 4.5 cm, and another is at 4 cm. Mine was recently measured at 4.3 cm. The valve is moderately stenotic. If I just had the valve problem in isolation, waiting until it reaches severe in terms of numbers could be the recommendation, except that I do have mild symptoms. The presence of symptoms usually triggers surgery. But I also have the aneurysm. Will the combination of the two seal the decision for surgery now? I'll just have to wait for January 6 to find out the answer.

Here's a paragraph from one paper in the Journal Of Cardiothoracic Surgery (Mar. 06) that addresses the BAV/aneurysm conundrum:

Another surgical approach suggested for the management of BAV, associated with a dilated ascending aorta less than 5.5cm is to carry out AVR with wrapping of the ascending aorta. This method has a low morbidity and mortality rate and was seen to decrease the risk of further dilatation, aneurysm formation and dissection [54,55]. More recently this procedure has been carried out using an external support made to fit the patient's aorta. This was done using digital information from magnetic resonance images to make a replica of the patient's aorta and then computer-aided design to produce the tailored graft [56].

Sounds interesting...a custom made aortic "wrap." I wonder if this will be an option for me?

The Unrecovery

2008-12-20T04:49:00.000-08:00

One poor fellow on VR.com, who is a few weeks post surgery, wrote this the other day:

It gets depressing that every time I go in some doctor finds another problem. Sometimes I wonder if I will ever become normal again.

Seems like OHS is so traumatic...does so much damage to your body, that it takes months, even years to get over it, if you ever do. The "cure" is almost as bad as the disease, it seems. Well, that's just fine.

Knowledge Is Power!

2008-12-19T11:39:00.000-08:00

Dan may sometimes think I'm too obsessive about researching my BAV disease and aneurysm. However, in the Dec. 18 New York Times there is a fantastic article written by a doctor that makes a powerful case for patients being as knowledgeable as possible about their condition. Here are some key quotes from the article:

Patients are more likely to spend time researching a job change (on average, about 10 hours) or a new car (8 hours) than the operation they are about to submit to or the surgeon who wields the knife.

“Today, medicine and surgery are really team sports,” Dr. Russell continued, “and the patient, as the ultimate decision maker, is the most important member of the team. Mistakes can happen, and patients have to be educated and must understand what is going on.”

“If we are truly going to reform the health care system in the U.S.,” Dr. Russell said, “everybody has to participate actively and must educate themselves. That means doctors, nurses, other health care professionals, lawyers, pharmaceutical companies, and insurance companies. But most of all, it means the patient.”

Another Concern: Germs And Colds

2008-12-19T03:31:00.001-08:00

I'm just getting over a nasty sinus head cold. I'm also reading on VR.com about someone who is scheduled for surgery very soon, in a matter of days. Her surgeon told her to "live in a bubble." In other words, don't put yourself in any situations where you can pick up germs and risk catching a cold. You don't want to have heart surgery with a cold. Well, this is just one more concern to be aware of and to deal with. Get out the masks and the hand sanitizer!

Scott Made It!

2008-12-19T03:29:00.001-08:00

Our friend Scott made it through complex surgery yesterday down in Texas. Scott has part of his aorta replaced as well ans a new aortic valve. We're pulling for him and very glad that he made it to "the other side of the mountain."

One New Valver's Comment Six Days Post-OP

2008-12-18T05:09:00.000-08:00

I had other patients trying to cheer me by saying "just think you'll be able to walk to the shops or walk the dog again with this surgery". That may have been the case for them but I could have climbed Everest a week ago ! Now I'm out of breath having pulled my socks on ! What happened ...

What happened? You were hit by a truck, that's what!

The Transition: Life After OHS

2008-12-18T03:23:00.000-08:00

I'm lucky, as someone pointed out to me recently, to have made it to age 60 with BAV disease. I've never liked taking pills or medications, and I don't take any even today. But that will all change soon, and that's part of what I really don't like about having to deal with my heart valve disease.

The other thing is the aftermath of surgery. Yes, having a diseased heart valve and an aortic aneurysm replaced is life-saving and should buy me a number of years, but it's far from certain that the quality of my life post surgery will be any where near what I'm used to. That's because of the kinds of complications people have after OHS. Yesterday I was reading about "TIAs" ( transient ischemic attack), which is like a mini-stroke, and full blown strokes that people get even if they are taking their coumadin and they have their INRs "in-range." Not good. Then you have to worry about getting endocarditis and careful with any invasive procedures like dental visits, colonoscopies, anything that breaks the skin. I read about so many valve surgery patients who must return to the emergency rooms at their hospitals with a variety of problems with their heart. Getting the surgery is no panacea.

Best Wishes, Scott!

2008-12-18T03:21:00.000-08:00

Scott is having his surgery today. We wish him well and hope that his surgery is successful and his recovery smooth.

Labile Hypertension

2008-12-17T03:21:00.000-08:00

According to the Bicuspid Aortic Foundation's web site:

The majority of those with BAVD have labile hypertension. Often their blood pressure goes up quickly under stress or when exercising.

I've noticed this phenomenon for some time now. My systolic pressure (the top number) goes way up if I go up steps or get stressed, like at the doctor's office. It makes it more difficult to get accurate measurements of what my resting blood pressure actually is. But that really makes no difference, because the goal is to reduce the blood pressure number both at rest and under exercise and stress so as to protect the aorta. That's why blood pressure management is so important in the treatment of bicuspid valve disease. I take my blood pressure two or three times a day. It's higher than recommended for people with BAV disease, so I'm sure I'll be placed on blood pressure medication before long.

Surgery This Week For A New Friend

2008-12-16T03:59:00.000-08:00

I've made a new friend, Scott, who lives with his partner Bryan in Austin, Texas. Unfortunately, Scott has to undergo his second open heart surgery in just a few years. This is because he has BAV disease, and during his first surgery only his aortic valve was replaced. As is often the case with BAV disease, Scott has a dilated aorta and root that has now to be corrected. This should have been addressed by the surgeon at the time he had his valve replaced. We're all pulling for Scott as he undergoes surgery this Thursday. Scott is writing a blog which you can read here.

Scott's situation makes it very clear to me that I must have my aortic aneurysm addressed at the same time my bicuspid valve is replaced. I'm sure that this will be the battle plan that my surgeon will suggest on January 6.

Decompressing

2008-12-15T05:36:00.000-08:00

After finding out last Monday that I have a bicuspid valve and an aneurysm, I had a rather intense week coming to grips with that reality and what it will mean - complex surgery to replace not only a defective aortic valve, but also part or all of my ascending aorta and root. I'm afraid I made Dan upset with an information overload that I dumped on him and I'm sorry for that. He thinks that I'm obsessing about it all, but I have to be on top of the situation to the best of my ability. I owe that to myself and him.

As of Friday, I began to come off of the jittery, panicky, drive to find out as much as I could by doing on line research. I'm pretty much over it now. Even my blood pressure is looking better these last few days. Unfortunately, I caught a bad head cold over the weekend. I started to feel it Saturday morning. Last night it was tough to sleep with the cold symptoms. I did get a walk in yesterday afternoon, which made me feel better. Our house is right across the street from Fairmount Park, so we enjoy daily walks with our dog Bradley. I actually do two walks most days: 2 miles in the morning and two miles in the afternoon. I only feel symptoms on exertion - walking up hills, steps, etc. If I do heavy exertion, I feel it in my chest, so my surgeon considers this "symptomatic." I'll continue my walking though, because I'm determined to stay in the best shape I can.

Being Proactive About Your Health

2008-12-14T04:36:00.000-08:00

I had a great day yesterday. I kept busy doing fun things. In the morning I went to a model train show. In the afternoon I went out and bought a holiday tree and garland for the outside of our house. I set the tree up and put the lights on it and decorated the house. Last evening Dan and I spent a little time at a friend's holiday open house then we went out to dinner.. It was god to get back to a normal life after several intense days focusing on my heart problems.

I can't get over the fact that if it wasn't for my determination to take care of myself, I might be walking around today and not know about my condition. The whole thing started when I was 50. I didn't have to go in for that initial colon cancer screening, but I did. I had a polyp removed and that put me on the five year schedule for re-screening. When I was 55 I went in for another colon cancer screening. At that time the medical practice required that I have an echocardiogram first because of a heart murmur. When I had the echo, that's when I was told for the first time that I had a valve problem.

So I've been going for heart checkups since that time. My yearly echo this year showed significant progression of the valve disease. So I took it upon myself to get a second opinion - from a surgeon. That lead to the discovery of my bicuspid valve and aneurysm. One thing lead to another, and another, and another. But if I hadn't been proactive (I love that word!) about my own well being, I could still be in the dark about all of this, or worse, I could have colon cancer from an untreated polyp or dead from a burst aneurysm.

I've known people my age who refuse to go to the doctor to get checkups, etc. Many of them are ticking time bombs. It's no wonder people die at a relatively young age from conditions that could have been addressed, and their lives saved.

Nearsightedness..Ah Ha!

2008-12-13T05:00:00.000-08:00

This is from the Bicuspid Aortic Valve Foundation:

Bicuspid aortic valve disease is more than a bicuspid aortic valve... Not everything is understood today, but enough is known to identify several major characteristics of this condition. BAVD includes the following:• Bicuspid aortic valve• Thoracic aortic dilation, aneurysm, or dissection• Labile hypertension (high blood pressure which changes quickly with stress or exercise)It may also include:• Mitral valve leakage• Coarctation of the aorta• Kidney or liver cysts• Near-sighted vision• Musculoskeletal degenerative changes (scoliosis, degenerative spinal discs, flexible joints, flat feet, etc.)• Aneurysm of smaller arteries, including head vessels (berry aneurysms)Not everyone has all of the listed characteristics. However, those diagnosed with a bicuspid aortic valve, who may have wondered why they also have high blood pressure, a leaking mitral valve, or poor eye sight, will recognize themselves in the definition above.

Well, that helps explain my nearsightedness. I've worn glasses becuase I am nearsighted since I was a child. I'm also struggling to keep my blood pressure at safe levels, and of course, I have the aneurysm. I'm grateful that I don't have any of the other characteristics and I hope I don't develop them.

The Bicuspid Aortic Foundation

2008-12-13T03:52:00.000-08:00

One of the really great web sites for people with bicuspid valve disease is the website of the Bicuspid Aortic Foundation:

http://www.bicuspidfoundation.com/Index.html

There is a ton of great information here, including a page full of stories of survivors and tributes to those who did not make it. Last night I read the story of one young man who died in his 30s, leaving a wife who was pregnant at the time. He had a bicuspid valve and died of a ruptured aneurysm. It's a heartbreaking story but it's a testament to how insidious BAV disease is and how important it is to get screened if you have others in your family known to have bicuspid valves, or if you or other close family members have experienced unexplained chest pain.

The aorta is prone to dilation in people with bicuspud valves, and the the danger is that it can rupture, or "dissect," which means the layers can come apart and fill with blood. The Foundation is doing a great job trying to get the word out about this not well known and not completely understood disease. I went to another website yesterday, the Adult Congenital Heart Disease site, and I was surprised that they don't even list BAV as a separate congenital defect! I wrote them about this, and their president acknowledged that they probably need to address the problem.

The Lost Days

2008-12-12T05:00:00.000-08:00

The past four days have been pretty intense. Since I found out that I have bicuspid valve disease and an aneurysm, I've been obsessed with researching the various elements of my situation. But I'm burned out a bit now and I need a break. Hopefully today I can put up our holiday tree, do some work on my toy trains...get back closer to a regular fun existence. It's been hard on Dan too, because I needed to bring him up to speed so that he has some understanding of things. I'm hoping we can have a pleasant weekend and de-intensify things a bit around here.

Aortic Regurgitation, Stenosis, Aneurysm

2008-12-12T03:34:00.000-08:00

What does AV "regurgitation" mean? That's when the heart valve doesn't close all the way and some of the blood that the heart pumps each beat leaks back in to the lower chamber (ventricle) and the heart has to re-pump it. This puts additional strain on the heart. I have only mild regurgitation.

My aortic valve has a different primary problem: stenosis. This means that it is stiff and calcified, and the opening is reduced in size so the heart has to pump much harder to get the blood through the narrower opening. I do have severe level stenosis for my body size. This often happens with bicuspid valves. This will trip the surgery wire, I believe. My aneurysm, while significant, in and of itself would not be enough to warrant surgery at this time. What they would do if I had only the 4.3 mm aneurysm is to manage it with blood pressure meds and monitor it carefully with surgery only if it grew fast or larger.

But people with bicuspid valve disease usually end up having the valve replaced when it becomes severely stenotic. In my case, when surgery happens I will have the valve replaced as well as surgical repair of the anuerysm. This is complex surgery that really can only be done at a major thoracic surgery center like the U of P, and by an experienced surgical team, so I'm lucky. In order to do this surgery they not only have to use a heart lung bypass machine, but for a time, hopefully less than 40 minutes, they have to stop everything and there is no circulation of blood through the body. They can do this by inducing a state of hypothermia...cooling the body down drastically. When everything is stopped, they replace the part of the aorta that has the aneurysm with a sewn-in dacron graft. Then when they're done they put the patrient back on the machine or re-start the heart. It's amazing stuff and the survival rate is very good.

Good Information About Aneurysm Surgery

2008-12-11T09:28:00.000-08:00

Here's an important study that applies to my situation exactly. It focuses on the prospects for patients with aortic aneurysms who have AVR surgery (that's me!):

CONCLUSION: Although the clinical course of patients with a dilated ascending aorta is unpredictable, aortic events may occur even in patients with a baseline aortic diameter of less than 50mm. Therefore, preventative aortic surgery at the time of AVR should be considered to prevent aortic dissection or rupture in patients with an even slightly dilated ascending aorta with a diameter of 40 to 50 mm, unless the patient has a high operative risk or older age.

Well, my aorta is at 43mm. So if the surgeon decides it's time to do an AVR, this would indicate that he would also do aortic surgery at the same time. This is actually a relief to me - to find this abstract. That's because I don't want to have AVR one year, then have to come back later for another round of OHS! Or worse, to suffer through an emergency or die from an aortic emergency.

I doubt I'll have to argue the point with the surgeon. However, I need to understand my situation, know what I want done in terms of management, and be prepared with questions.

The Emotional Response To Your Diagnosis

2008-12-11T08:34:00.000-08:00

Finding out that I have BAV disease and an aortic aneurysm was a shock. I was already pretty well shook up after meeting with the surgeon even before this latest news. At least he prepared me somewhat when he told me that he thought I did have a BAV and that it was missed previously. I've since found out that this happens a lot with bicuspid valves because they are challenging to spot on echos.

It's normal and human to have an emotional response to this kind of news, and I'm just like anyone else in that respect. The other day I wrote to a friend who has been very supportive. I told her about our weekend trip to Florida. Some of my emotions came through in that email:

"I did my first ever snorkeling in Key Largo over 30 years ago. I was still married to my wife then. We were in Miami for some sort of convention that she was attending. She was, believe it or not, a surgical nurse and assisted in open heart surgeries! Poor woman, she used to come home a basket case because back then in the early 70s so many more patients died. Anyway, going back out on that reef once again more than 30 years after my first visit was something of an emotional homecoming for me, actually. Well, I'm more emotional these days as you can imagine, and the trip to the reef triggered a lot of strong feelings and memories. I felt like it was the other bookend to my adult life in some respects, if you know what I mean. That hour I spent out there in the crystal clear, warm water enjoying all the beautiful fish and corals was just an indescribably intense emotional experience for me. I was so relaxed as the waves gently washed over me. I hated to get back on the boat when the hour was over. I'm hoping I'll get another chance to do something similar in the future."

Stenotic BAV/Aneurysm: What Is To Be Done?

2008-12-10T06:15:00.000-08:00

With a bicuspid valve and an aortic aneurysm, the plan seems to be to replace the valve, preserve the aortic root if it is normal (and mine is,) and repair the aortic aneurysm. The reason that it is important to preserve the aortic root (the part of the aorta that connects to the heart) is because that's where the two coronary arteries branch off. If you have to replace everything...the valve, the aortic root, and the ascending aorta, the surgeon has to reconnect the two coronary arteries to the aortic root graft. This is called a "Bentall," or " Button Bentall" procedure and it is tricky and can lead to a lot of extra complications. Once again, getting things taken care of before the BAV disease leads to aortic root problems seems like a real good idea.

So, it will be interesting to see what the surgeon says on January 6. My "numbers" are borderline, I think. According to The American College Of Cardiology/American Heart Association Guidelines :

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.*

If patients with bicuspid valves and associated aortic root enlargement undergo AVR because of severe AS or AR (Sections 3.1.7. and 3.2.3.8.), it is recommended that repair of the aortic root or replacement of the ascending aorta be performed if the diameter of these structures is greater than 4.5 cm (366).

So mine is a complicated situation. My AS is technically still in the moderate range with a valve area of 1.3 cm2, but adjusted for my body size it falls in the "severe" range (VAI = <.6). So, by itself, my valve problem is borderline by the numbers. My symptoms do not include the most serious manifestations of AV disease (dizziness and fainting,) rather I do experience exertional dyspnea and angina.

However, I do have a BAV and an aneurysm. Surgery is recommended to repair an anuerysm if the maximum diameter is 5.0 cm or more, or 4.5 cm if valve surgery is also being performed. My aneurysm is 4.3 cm, just under the recommended size for repair during AVR. Well, it makes no sense to me to have valve replacement surgery and not correct the aneurysm. Who wants to have to undergo another OHS later on to correct an aneurysm, or worse yet, experience an emergency related to the aneurysm?

So, what will the surgeon's recommendation be on January 6? Should I wait until the aneurysm grows and/or the valve stenosis gets worse, or more likely, both problems worsen? I could do that but that doesn't make a whole lot of sense to me either. I think that the combination of moderate to severe AS AND a BAV/aneurysm will trip the "surgery now rather than later" wire.

Therefore, my hunch is that the surgeon will recommend immediate AVR and ascending aneurysm repair.

Let's see if I'm right.

Bicuspid Valve Disease

2008-12-09T05:29:00.000-08:00

One of the best informational articles that I've found on bicuspid valve disease is here.

Here's the bottom line in a nutshell:

In general, patients with mild-to-moderate valvular dysfunction and normal left ventricular (LV) dimensions and function should be monitored by echocardiography at regular intervals. Aortic valve replacement is indicated for severe valvular dysfunction, symptomatic patients, and/or those patients with evidence of abnormal LV dimensions and function (Table). Because many of these patients will require cardiac surgery during their lifetime, early referral to a surgeon with experience in aortic valve surgery is recommended.

Basically, once someone is diagnosed with BAV, then "early referral to a surgeon with experience in aortic valve surgery is recommended."

In my case the good news is that I believe the the disease was diagnosed before it has progressed too far but only because I elected to seek out a surgeon on my own. My "numbers" are borderline severe: valve area 1.3 cm2 (technically "moderate" but "severe" - when adjusted for my body size - valve area index = .55); aortic dilation of 4.3 cm - which is in the range that can trigger surgery:

Aortic dilation should be carefully monitored by echocardiography21 and aortic root replacement recommended more aggressively for patients with BAV24 with aortic dilation (ie, 4 to 5 cm) than for those of patients with tricuspid valve (ie, 5 to 6 cm).

So, there's the scoop. I'll have my CT angio chest and see the surgeon again on January 6. To me it looks like all that is left to be done is to the set the date for surgery and select the valve prosthesis. I'll have to ask the surgeon what his plan is to deal with the aortic aneurysm.

My Valve Disease/Aneurysm Conundrum

2008-12-08T13:01:00.000-08:00

Yesterday I went snorkeling in John Pennekamp Coral Reef State Park in Key Largo, Florida. The water was 75 degrees and waves were normal at about 1 to 2 feet. We anchored the boat about 50 yards from the edge of the reef down current. That meant that snorkelers would have to swim the 50 yards to the edge of the reef against the current. The current was not very strong, luckily. There were about two dozen people going snorkeling. They ranged in age from perhaps 11 or 12 all the way up to retirees. Since I'm a certified scuba diver with 30 years experience with a mask, snorkel, and fins, I was ready to go first in the water. I swam up to the reef then around it to the far edge, probably another 75 or 100 yards so that I could start my snorkeling there and see the entire reef. An hour later the captain blew the horn on the boat signalling snorkelers to return. I was the last one back on board. The mate told me that I covered far more of the reef than anyone else.

The nature of valve disease is such that it can cause frustration. Here I was in the water as active as anyone else on the boat, yet I have a condition that could kill me if left untreated, and will probably force me into the operating room early next year. It's a peculiar situation to live with. Basically, I can almost do anything I ever could, except for heavy exertion like running and heavy lifting. And I don't feel mortally ill. But I am.

Now added to the mix I find out that I have a bicuspid valve. Well, the literature is full of descriptions of the problems that causes. Mine is congenital, and what happens is that these malformed valves degenerate. I'm lucky to have made it to 60 with mine. Lots of people have to have surgery when they're a lot younger...in their 30s or 40s. One of the problems associated with bicuspid valve disease is aortic dilation (aneurysm,) a serious condition that is potentially fatal if not caught and treated. My aorta is dilated. So I have the double whammy: aortic valve disease plus an aortic aneurysm.

Yet, I'm still out there doing most everything including walking four miles a day, which is actually good for someone with my diagnosis. But the situation is mind boggling when you think of it.

The Big Shocker

2008-12-08T09:53:00.000-08:00

Well, I just got back from the weekend in the beautiful Miani Beach area, and found the latest echo report from the University Of PA. hospital waiting for me.

My surgeon was right: I have a bicuspid aortic valve that the cardio missed, AND I have a dialated aorta.

And that is a horse of a different color, to say the least!