Saturday, December 19, 2009

I'm In The Slow Lane

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 the waiting room for the time being.


Sunday, October 11, 2009

Cardiologist Appointment

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.

Thursday, September 10, 2009

Have I Developed A New Symptom???

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 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.



Friday, August 21, 2009

Flying The Friendly Skies Again

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.

Saturday, July 25, 2009

Valve Disease Symptoms

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.

Sunday, July 19, 2009

Summertime Relaxation

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

Wednesday, July 8, 2009

Feeling Good!

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!

Wednesday, June 17, 2009

Still Trying To Be As Active

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

Monday, June 1, 2009

Vacation And Status Update

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.

Tuesday, May 5, 2009

Stable For Now

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.

Monday, March 30, 2009

Good Cardio Report

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!

Sunday, March 29, 2009

Walks By The Graff Memorial

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.

Saturday, March 28, 2009

NST Final

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.

Friday, March 27, 2009


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

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

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!)

Monday, March 23, 2009

Stress Test "Positive?"

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

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.

Friday, March 20, 2009

Hooray! Someone I Can Talk With

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

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

Wednesday, March 18, 2009

Endocarditis! Scary Stuff.

I've been reading a few posts on 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!

Tuesday, March 17, 2009

Blood Pressure Wars

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.

Friday, March 13, 2009

Road Trip

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?

Wednesday, March 4, 2009

Winter Walks

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.

Monday, February 23, 2009

The Undiagnosed: Palpitations

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.

Friday, February 20, 2009

Walking For Exercise

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.

Wednesday, February 18, 2009


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.

Tuesday, February 17, 2009

More Doctors Appointments

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 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.

Sunday, February 15, 2009

CT (Cat) Scans vs. Heart Catheterization

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.

Sunday, February 8, 2009

Pre-Meds For Dental And Other Procedures

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.

Friday, February 6, 2009

Exercise And Aneurysms

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.

Wednesday, February 4, 2009

Still Wanting Answers

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.

Tuesday, February 3, 2009

Aspirin Therapy And Colonoscopy/Polypectomy

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.

Saturday, January 31, 2009

Genetics And BAV Disease

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!

Sunday, January 25, 2009

Should I Scuba Dive Anymore?

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

Saturday, January 24, 2009


Our dog, Bradley, takes me for two walks a day. Two miles in the AM and two miles in the 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.

Sunday, January 18, 2009

Aspirin Therapy

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

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

Friday, January 9, 2009

Marfan Syndrome Similarities

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

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

Thursday, January 8, 2009

I Got What I Wanted

As the saying goes over at, 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 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.

Wednesday, January 7, 2009

A Day Of Tests And The Aftermath

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

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

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

Tuesday, January 6, 2009

CT Scan Today

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

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.

Monday, January 5, 2009

WHo Is Allowed To Visit In The ICU?

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.

Saturday, January 3, 2009

Easy Does It!

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.

Friday, January 2, 2009

New Reading Mateial

Member Shannon over at 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

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

Thursday, January 1, 2009

Symptoms: Who Me?

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.