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jjay32

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Joined
May 15, 2008
Messages
180
Location
Spokane, Washington
It has been awhile since I have participated in the forum. I came here 8 years ago looking for support having discovered that heart surgery was somewhere in my future. Everybody was a great help. My latest check up shows that i am getting closer to that surgery date. I have an asending aortic aneurysm now measuring 4.9, up .1 from last year. The stenosis of the aortic valve is now worse: valve area is now 1.2cm2 (1.4 last year), peak velocity =3.9 (from 3.7), peak systolic gradient is at 61.4mmhg( last year 55), the mean gradient is now at 40.5 up from 33 last year.(that puts it into the severe range, all other numbers are in the moderate range). The big question is how do you figure out if symptoms are from age/weight/activity or from the stenosis. At 5'10" and 220 lbs I am overweight but at my job I am on my feet for 40 hours a week and I walk about 45 miles a week doing that job, so I don't think I am horribly out of shape. I am tired alot, and do get out of breath while climbing stairs (several flights) and hiking on trails that vary in altitude. Lifting heavy objects and carrying them short distances also caused sob. When I get the shortness of breath I also experience mild chest pain but no real tightness. The cardiologist chalks it up to me being out of shape. I don't know what to think. It has been about a month since the checkup and echo and having time to look back over the last year, I would have to say that the mild chest pain and shortness of breath have slowly gotten worse. It is really hard to track worsening symptoms as they are so subtle. At least this is the first year that he acknowledges that surgery is now looming but he still says " 1, 2 5 years away." Any thoughts or suggestions?
 
Hi

welcome back

jjay32;n863471 said:
... I came here 8 years ago looking for support having discovered that heart surgery was somewhere in my future. Everybody was a great help. My latest check up shows that i am getting closer to that surgery date...
The big question is how do you figure out if symptoms are from age/weight/activity or from the stenosis.

myself I think the answer is in your own preamble

​... I am on my feet for 40 hours a week and I walk about 45 miles a week doing that job, so I don't think I am horribly out of shape.
I am tired alot, and do get out of breath while climbing stairs (several flights) and hiking on trails that vary in altitude. Lifting heavy objects and carrying them short distances also caused sob. When I get the shortness of breath I also experience mild chest pain but no real tightness. The cardiologist chalks it up to me being out of shape. I don't know what to think.
... Any thoughts or suggestions?

get a second opinion ... what, does he want you on oxygen before you need to be operated?

The newer thinking is that if its known to be unavoidable then do it early not when you're totally sick ... thus giving you the best recovery.

:)
 
Hi jjay - Are you still going to be having yearly checkups ? Once my cardiologist said he thought surgery was "about 2 years away" he scheduled my echos and check ups to every six months as things can change fast.

At referral for surgery my peak gradient was 68 mmHg, mean gradient 38 mmHg, valve area size 0.9 - the reason for referral was the pressure gradients had suddenly gone from rising steadily to shooting up fast. I had absolutley no symptoms - not my imagination - and I was/am slim and very fit doing weight lifting and walking several miles per day. I had my surgery two months after referral - still no symptoms but the cardiologist and cardiac surgeon wanted to do surgery before I got symptoms, before damage to the heart.
 
I agree with pellicle re: a second opinion. SOB is not good regardless of its cause. If it's your heart, you need to have it tended to sooner than later. SOB prompted me to have tests run and I was stunned to learn I had a BAV with severe stenosis. It was four months from diagnosis to surgery. SOB is gone :) Keep us posted.
 
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I would get it done right away, I would not play too much with an aneurysm. I got mine done at 4.9 even though my valve was not as bad as yours is now. As Pellicle and Honeybunny said, you never know how your health will be in the future.
 
thanks for the input, my cardio at this time only wants yearly checkups, I plan on asking for a 6 month checkup. I think I will also set up an appointment with a surgeon to get his opinion.
 
Once your statistics get to a certain point (and you may not yet be there), surgery becomes "optional" and you can ask your cardio to start the immediate steps toward surgery. It is a lot like the situation I had with my cardio, as my stenosis progressed. I asked him how he would know when it was time for surgery. I'll paraphrase his response by saying that he told me "I won't have to tell you. You will tell me when you are ready for surgery."

At my last check-up prior to surgery, I told him that I was ". . . tired of being tired." He said "See. I told you that you would tell me when."

I can't speak about timing with your aneurysm, but patients rarely die from aortic stenosis (unless they choose not to correct it). They always say "when."
 
epstns;n863529 said:
I can't speak about timing with your aneurysm, but patients rarely die from aortic stenosis (unless they choose not to correct it). They always say "when."

Good point. An aortic aneurysm is a time bomb. My surgeon personal view was from 5cm we need operation, some guidelines suggest 5.5cm. I just hated the idea of living with a 4.9cm aneurysm especially with my life style, I did not take any chance and my surgeon agreed. Operation went very well because my health was strong, I do not regret it and I do not see any advantages in delaying an operation like that especially when your surgeon agree to act now and you have data that show your aneurysm is growing.

Once you have a rupture from your aneurysm, you barely have 30 min to get to the hospital and even if you get there in time, your chance of surviving are very small. An ascending aortic aneurysm is much more dangerous than an abdominal one. when it does rupture.
 
Jjay....I would strongly suggest you get a second opinion. The cardiologist I had for quite a while prior to surgery continued to want to reduce my activity and increase medication. Finally, after reading through this forum, I realized that waiting may not be the best thing for me.

Old school train of thought was often that you should put off surgery as long as possible, until the risk of death from your heart or aneurysm far outweighs the risk of death during surgery.

My cardiologist said, "Your EF is getting worse, heart is enlargened, valve area has decreased....here are some prescriptions, and stop riding your mountain bike."

I went to Loma Linda for a second opinion and found an unbelievably progressive, enlightened cardiology staff. From the first visit, the philosophy there was that the surgeries are SO successful now, less than 1% mortality rate for my age group (30-40), that once your heart condition begins to affect your quality of life....let's fix it.

I much prefer the train of thought that you should get it fixed to enjoy your life, before you HAVE to get it fixed to save your life.

Surgeons, staff and valves are TOO good to just wait for something bad to happen or for your symptoms to worsen...IMHO.
 
I would get a second opinion and personally I would want to get the aneurysm taken care of as soon as possible.

I went to my surgeon with an echocardiagram that showed that I had a 4.8 aneurysm and my surgeon told me to schedule surgery with 8 weeks.

Footnote: I'm very glad I did the surgery so quickly because when my cardiologist did the angiogram the night before surgery it showed that the aneurysm was actually 7.2!
 
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