Saturday, December 19, 2009
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.
Sunday, October 11, 2009
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
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
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
Saturday, July 25, 2009
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.
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.
So, it's back to watch and wait.
Sunday, July 19, 2009
Wednesday, July 8, 2009
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
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
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
Monday, March 30, 2009
Sunday, March 29, 2009
Saturday, March 28, 2009
Friday, March 27, 2009
Monday, March 23, 2009
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.
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
Wednesday, March 18, 2009
Tuesday, March 17, 2009
Friday, March 13, 2009
Wednesday, March 4, 2009
Sunday, March 1, 2009
Monday, February 23, 2009
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
Wednesday, February 18, 2009
Tuesday, February 17, 2009
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.
Sunday, February 15, 2009
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
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
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
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
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
Sunday, January 25, 2009
Saturday, January 24, 2009
Sunday, January 18, 2009
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.
Monday, January 12, 2009
Friday, January 9, 2009
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
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
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.
Tuesday, January 6, 2009
Monday, January 5, 2009
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
Friday, January 2, 2009
Thursday, January 1, 2009
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.