Random thoughts from a newly diagnosed

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DeuxofUs

DeuxofUs

Well-known member
Joined
Feb 20, 2011
Messages
135
Location
Encinitas, CA USA
I have some of the weirdest thoughts going through my head right now. Like, what about going up to high altitudes? 7K? I want to play in the snow. But the lack of oxygen up there... wouldn't that be a problem?

What about flying in an airplane? The oxygen level is that of 8K feet... isn't that tough on my lungs and heart?

I feel like glass right now... so fragile. Why can't I get fixed at 1.0????? Maybe I would feel better and I just don't know it?? I feel diseased, broken.....

What a roller coaster....
 
As Bob H (a.k.a. Tobagotwo) wrote, some surgeons WILL consider performing valve replacement at an Effective Aortic Valve Area of 1.0 cm sq, especially if there are symptoms. Good Surgeons take into consideration ALL factors, including the 'numbers' from test measurements, symptoms, AND how your Quality of Life has been impacted. It would be wise to start interviewing Surgeons. Prepare your List of Questions to ask. There have been some threads about what Questions to Ask Surgeons, probably in the Pre-Surgery Forum, maybe even one of the 'stickys' at the Top of the Thread Listing.

'AL Capshaw'
 
I think what you are feeling is the anxiety of everyday life that we all feel from time to time and deal with on a daily basis as we encounter new and differnt parameters of living. I for one call this "my new normal" the answers to your questions are that MANY of our members fly on a regular basis but if it is an unusal circumstnce ask your medical team!
 
ALCapshaw2 said:
As Bob H (a.k.a. Tobagotwo) wrote, some surgeons WILL consider performing valve replacement at an Effective Aortic Valve Area of 1.0 cm sq, especially if there are symptoms. Good Surgeons take into consideration ALL factors, including the 'numbers' from test measurements, symptoms, AND how your Quality of Life has been impacted. It would be wise to start interviewing Surgeons. Prepare your List of Questions to ask. There have been some threads about what Questions to Ask Surgeons, probably in the Pre-Surgery Forum, maybe even one of the 'stickys' at the Top of the Thread Listing.

'AL Capshaw'
Click to expand...

http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions
 
No one placed any limitations on my flying either before or after my surgeries. They do tell me that when I'm on a plane, they want me to get up and walk around at least once every two hours if not more. I go to the restroom and back and that's fine.
 
Anybody who suffers from shortness of breath (SOB) near sea level will suffer more at high altitude. The lower pressure on airplanes may or may not be a serious problem for each individual, depending on the oxygenation deficit. Ca. 55 years ago, my mother needed Oxygen during a (pre-jet = LONG) flight from Boston to Miami. Three decades later, she died of heart failure, probably from an almost-diagnosed BAV.

Depending on your symptoms, you may well be more "fragile" than most of your friends. That part is physical. The mental part is how much you DECIDE to LET that physical reality drive you nuts and distract you from living your life, while you're in "the waiting room". That "mental game" is actually under your control, though it may not seem that way today. . .
 
I flew 45,000 miles with Aortic Stenosis at .7-.8cm last year with no issues. For years prior I flew all over with a 1.0cm diam with no issues--longest flight was 9 hours. I never had SOB on the plane. I did have SOB when deplaning, but I think that's from having to walk up a ramp pulling my roll aboard. It was the walking through the airport that was hardest. If you take it slow you should be okay.
 
Deux,
I didn't go to the mountains or ski while waiting, but I did fly quite a bit. Only once or twice in 9 years did I ever feel "oxygen starved" on an airplane. A couple of deep breaths and a walk down the aisle was all it took to get back on track. While traveling these last couple of years, we did adjust our activities to those with which I felt comfortable. Long walks were OK, long runs not. Stairs weren't much of an issue, nor was spending long days touring DC in the hottest days of summer. Just watch your hydration and match your activities to your comfort zone. Don't push it, but don't fear life. My docs always told me to just do what felt right.

Worked for me.
 
I, too, felt a lot of anxiety after I first received my diagnosis. It can be scary to suddenly learn that there is a problem inside that will require surgery to fix and its very understandable that you want it done now. BUT! Your problem is one that can not only be corrected; it can be corrected quite well so you can go on to live a normal life. You are just on a different path to the future than you were a few weeks ago. When you speak with your surgeon, you need to share your anxieties. Getting them out in the open is the best way to defuse them.

If you are a reader, My doctor suggested what proved to be a very good book that might help you now:

Coping With Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional, and Practical Issues

Its available at Amazon: http://www.amazon.com/Coping-Heart-Surgery-Bypassing-Depression/dp/1887841075

Larry
 
As others said, (unless your doctors said not to) flying shouldn't be a problem, especially if you don't have noticble (to you) symptons.

Beside the valve area, do you have any of the other results/measurements from your echo? I know both the gradient and ejection fraction are 2 other "numbers" to watch to see when it is time for surgery.

I don't think you mentioned it, but did they do any other tests like an MRI? Also since there was a pretty big change in the AVA in such a short time, AND echos aren't the most accurate test, and can change from tech to tech, I would ask about having other testing, like a MRI so you know if your valve is 1.0.

Also one of your earlier posts you were asking why they didn't tell you about the bicuspid valve when you had earlier echos and thought your doctor was keeping things from you. That's possible, but often they can't tell that you have a bicuspid valve from echos or even MRIs. Sometimes they aren't even sure if a valve is bicuspid until the surgeon can see it during surgery.
Hopefully when you see your cardiologist and are able to get some of your questions answerred, it will help you to feel a little less worried.
 
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I did not discover I had critical AS until last Oct 14 when I flunked a routine ECG driven by a medical and was sent to a cardiologist. Thats when I got the news that the valve was at .6cm2. I was not suffering the classic symptoms of critical AS. Only thing plaguing me was my sports performance. It seemed biannually I was getting slower and losing strength. Simply chalked it up to being 55. My days were filled with 1-3 hours of TRI sports, Wt lifting and skiing snow and water 60 plus days a year. I was and still do work full time. I only became symptomatic after the stress test from the day of discovery. The tech running the tread mill from hell cranked it up, put my heart rate up to 170 bpm and held me their. My max range is around 155 BPM. She commented it was like I had a second heart beat. Hmmm, maybe the experienced conveyor belt operator should have terminated the test with this 2nd heart beat condition. Can you say regurgitation. I just played my part during the test and left the cardiologist office being symptomatic due to her ignorance. I walked away from the the cardiologist's office with a death sentence and the plan to avoid meeting prematurely the Grim Reaper. Hence I'm waiting like you to get this defective piece of crap scrapped and the implantation of a carbon tick tock device.

OK about playing in the snow at altitude:I live at 3500 ft. Like I said I did not have symptoms of AS untill after the stress test.It is obvious I was, [heavy on the "WAS". No skiing until next season] skiing with my AV narrowed in the range of .6cm2. Thus I was giving it my all at 1.0cm2. Again, I have lived my life at a higher altitude, so I am better adapted then you. I have spent decades skiing and as a result, I'm very proficient and my muscles and physiology are developed for the sport and demands of the mountains elevation. If you are in good shape and maintain some degree of physical fitness, I would go play with the snow angels. You have knowledge and understanding of your defective AV so you are not going to over do it. Now get out their and have fun, providing the cardiologist gives you the green light!
 
Thanks everyone for the responses... you really all make me feel so much better. I guess I am just so hyperaware of EVERYTHING and I don't like knowing I am "defective"

I will ask my cardio about the other items you mentioned.... gradient and ejection stuff... she might be surprised that those words even come out of my mouth. I will also mention the MRI as well.... since I did degrade so fast. BTW, it's my cardiologist that always reads the tech results at the same time I am in the office.

However, I am grateful that it is fixable and not a death sentence. I was thinking the other day, I could have been told I have cancer and had 2 weeks to live!! I even watch the procedures on Youtube... I can't believe these doctors do what they do... UNREAL! They just tinker around in there like they are playing with Legos.

I will also ask about aneurysms as well. The bottom line is, I don't want my heart to get damaged in the meantime.

BTW, has anyone found a correlation between hypertension and BAV disease? Anyone not need their blood pressure meds after surgery?
 
when I read your posts it reminds me of me when I first found out. One important thing to remember is that there's guidelines for a reason. The valve replacement... I wouldn't call it a fix. It is NOT a cure... it is an adequate bandaid that will help a symptomatic person feel better and more productive. It's important to remember that some people get burned with this surgery - both during, shortly after and long term. It is not without risks, and I think it would be wise to take that in to consideration. If someone had told me that 3 years ago, I could've saved alot of time and anguish. When we replace that human tissue with a prosthetic, we trade one set of problems for an entirely new set of problems and risks.

When I was pushing for surgery, I literally had a very well known surgeon tell me that he's never CURED anyone, and that he has hurt people before.
 
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