For Those of Us in "The Waiting Room"

[Braveheart]

Well, I had my heart cath, which showed that my aortic valve area is .9 cm2, which is considered serious. Problem is, my gradient is 27 which is still in the "no big deal" category. My cardio still wants to take a "watch and wait" attitude.

As you know, I am for getting the darn thing over as soon as possible, before I have symptoms. At this point in time, I am feeeling more tired than usual, but that could be caused by anxiety over this whole thing.

Anyhow, I called the Cleveland Clinic, and they E Mailed me a list of things that they would need to make a determination as to whether they would do the surgery. The nurse was very nice. When I described my dilemma, she sent me a link to a wonderful article about the parameters that doctors use when determining when is the right time for surgery:

http://www.ccjm.org/content/71/6/463.full.pdf+html

I am going to gather the information anyway, send it out to Cleveland, and make a plea for my "case".

 

[Ross]

Well, I had my heart cath, which showed that my aortic valve area is .9 cm2, which is considered serious. Problem is, my gradient is 27 which is still in the "no big deal" category. My cardio still wants to take a "watch and wait" attitude.

As you know, I am for getting the darn thing over as soon as possible, before I have symptoms. At this point in time, I am feeeling more tired than usual, but that could be caused by anxiety over this whole thing.

Anyhow, I called the Cleveland Clinic, and they E Mailed me a list of things that they would need to make a determination as to whether they would do the surgery. The nurse was very nice. When I described my dilemma, she sent me a link to a wonderful article about the parameters that doctors use when determining when is the right time for surgery:

http://www.ccjm.org/content/71/6/463.full.pdf+html

I am going to gather the information anyway, send it out to Cleveland, and make a plea for my "case".

Thanks. I'm going to add that in the must have reference links too!

 

[skeptic49]

Thanks for posting. It's an interesting read.

However, the article is approaching five years old and some of the information has changed. For excmple, the ACC/AHA guidelines for preventative antibiotic prophylaxis, and we have updated information relative to the supposed benefits of statins in slowing the rate of AS.

With your valve area at 0.9 cm2, I can agree with you that it would be better to get the surgery sooner rather than later. Are you certain that you are asymptomatic? The problem is that we often don't realize that we actually have symptoms. Therefore, I'm glad you are seeking another opinion.

Best wishes,

Jim

 

[Mary]

Well, I had my heart cath, which showed that my aortic valve area is .9 cm2, which is considered serious. Problem is, my gradient is 27 which is still in the "no big deal" category. My cardio still wants to take a "watch and wait" attitude.

As you know, I am for getting the darn thing over as soon as possible, before I have symptoms. At this point in time, I am feeeling more tired than usual, but that could be caused by anxiety over this whole thing.

Anyhow, I called the Cleveland Clinic, and they E Mailed me a list of things that they would need to make a determination as to whether they would do the surgery. The nurse was very nice. When I described my dilemma, she sent me a link to a wonderful article about the parameters that doctors use when determining when is the right time for surgery:

http://www.ccjm.org/content/71/6/463.full.pdf+html

I am going to gather the information anyway, send it out to Cleveland, and make a plea for my "case".

I sympathize, since I waited almost two years.
After reading your link, it appears that the jet velocity will be another value that determines your need for replacement. As you said, the gradient is still low and you appear to be asymptomatic. At this point, it appears that there is little likelihood of damage to the heart if you wait, and I would wait until that changes. That's probably not the reply you want to hear, but having been in a similar situation, those are my thoughts--for what they are worth!

 

[Marguerite53]

Very good article. Thank you so much for sharing.

Waiting is the hardest part!!!!!!!!! We've told you that!!!

Hang in there! I had to wait 3 years. Put this all on the "back burner" like you would an old boyfriend.... you know you'll run into him eventually, but you really do need to get him out of your system for the present time. Let it go. Maybe even leave us for awhile.

Your anxiety, frustration is definitely not helping. Put all your stress into an old shoebox and bury it deep inside one of your closets. You'll know it's there if you really want to go and reclaim it. Seriously. Write down all your doubts, fears on strips of paper. Toss them into the box. Put the box far away. Leave them!!!

Take a break from all this for awhile. Accept things. Live your life... every precious moment.

Wishing you the best. We honestly do understand!!

Marguerite

 

[Braveheart]

With your valve area at 0.9 cm2, I can agree with you that it would be better to get the surgery sooner rather than later. Are you certain that you are asymptomatic? The problem is that we often don't realize that we actually have symptoms. Therefore, I'm glad you are seeking another opinion.

Best wishes,

Jim

Jim- It is very difficult for me to separate out the symptoms that I am having to cardiac, psychological, or orthopedic problems. I have a lousy back, which may need surgery at some later date. When I walk, I use a TENS machine, with a brace over that.

I am able to walk 4 1/2 miles, a few days a week. I have noticed a few things.
First, I have observed recently that it is taking me longer to do my walk. Second, sometimes I am exhausted at the end of the walk, and have to rest afterwards.
Sometimes, after walking, I feel jittery internally.Third, on occasion my heart rate has been high, and remains high long after the walk.

OK, I weigh too much, and am not a kid. But I can remember just a few years ago, that I was able to do what I do now, but much easier.

 

[Lynlw]

Jim- It is very difficult for me to separate out the symptoms that I am having to cardiac, psychological, or orthopedic problems. I have a lousy back, which may need surgery at some later date. When I walk, I use a TENS machine, with a brace over that.

different subject but did your back doc ever suggest a having a spinal stimulator implanted? the TENs reminded me of it. I have one(stim) but it broke (I have a lucky family my stim and Justin's pacemaker both broke)

 

[BigOwl]

Braveheart, I checked your profile but couldn't tell (and haven't been around here long enough to know) whether you're male or female. The avi is sort of female-sh, though, so I thought I'd mention something about my own experience.

Doctors frequently still fail to realize that men and women present symptoms differently. For example, before my CABG, I experienced angina as a tightening across the top of my shoulders, later (as my arteries clogged up even more) accompanied by shortness of breath. Never once did I have syncope or "chest pain." I only went to a doctor about it because I had one "classic" event involving nausea (after a short walk) and pain down my left arm along with the other two symptoms. I hadn't had any of the symptosms again since athe CABG, which has had me functioning just fine for the last 14 years.

A little over a year ago, about two years after the aortic stenosis was discovered because of a heart murmur, I aced the treadmill part of a stress-echo, even though the problem was clearly worsening according to the echo itself. This year, they wouldn't even let get on the treadmill, the change was so clear and so threatening. Only recently had I been experiencing a variation of my variety of angina. Still not much shortness of breath, but a definite tightness between my should blades--something like a panic attack.

I'm apparently one of those people with a very high threshold of pain, and that's gotten in the way of my being able to identify the symptoms that should be accompanying my level of stenosis. I only begin to feel uncomfortable when my stress level gets kicked up. The calmer I am, the fewer symptoms.

I guess what I'm trying to say is that not everyone presents even with angina the same way. The advice I see elsewhere on this forum is to arrange a direct consult with a surgeon--and I'd suggest further that it be one with gender-specific experience. My first cardio was a woman, at the insistence of my GP's nurse--who knew 15 years ago that male doctors aren't always aware of the differences. It may well have saved my life, because she knew exactly what was going on from our first phone conversation!

But as I've found out recently, the disease can progress very quickly; I think you're right to wonder whether you might want to correct the problem sooner rather than later--although you should also consider the risk/benefit of surgery at this point vs. waiting.

If you're not a woman, though, I'm going to be a bit red-faced after all this!

 

[Braveheart]

different subject but did your back doc ever suggest a having a spinal stimulator implanted? the TENs reminded me of it. I have one(stim) but it broke (I have a lucky family my stim and Justin's pacemaker both broke)

Right now, the TENS machine is enough to make me comfortable when I am taking a long walk. I normally don't even have to use it if I am not doing anything strenuous. Sometimes, when I am doing a lot of food shopping, I will put on my brace to protect me when I am doing a lot of lifting. I am also having radiofrequency ablation on my spine, which apparently is working.

 

[Braveheart]

Big Owl- Yes, I am a female. The more that I think about it, the more that I realize that I am most likely having some symptoms, although I am probably heavy into denial.

It might have been a mistake to mention to my cardio (male) about my 4 1/2 mile walks. He probably thinks that I am strong as a horse.

 

[DaveEM]

Hi Braveheart, I was diagnosed with Bicuspid Aortic Valve with Moderate to Severe Stenosis when I turned 42. I waited 9 years to be clearly in the severe range and shortly thereafter I felt what I thought was a symptom, but could still be debated by my "second opinion" cardiologist. I never felt a "wow" kind of symptom. My actual AVR, however, confirmed the severity of my condition and how critical it was to have the surgery. Now that I'm three months out of surgery, I don't feel many of the minor, passing, feelings I had before that I chalked up to everything but my stenotic condition. I realize now that I just didn't recognize the minor and fleeting chest discomfort I occasionally felt, nor the minor and fleeting pain in my left arm, as being symptoms. The sensations were subtle and fleeting. So, you may well be feeling symptoms but they are not severe enough to be definitive or grab your attention.

So, my thoughts are that you might be in for a long wait and you should seek out professional help to cope with the wait. Or, alternatively, you might well be symptomatic and you should get surgery.

How is that for being wishy-washy??

Dave

 

[Braveheart]

So, my thoughts are that you might be in for a long wait and you should seek out professional help to cope with the wait. Or, alternatively, you might well be symptomatic and you should get surgery.

How is that for being wishy-washy??

Dave

If I have to wait, I can cope with the situation myself. So, I'll be a little nuttier than usual. People are used to me!

I think that what is causing my anxiety is that I have gotten the list of stuff to send to CC, and am working on getting the material.

I am very convinced that at my age there is nothing to be gained by waiting, and that surgery, within the year, is a viable option. If I have any problems with CC, I might just get a second opinion from a female cardio. There is a reason that the bulldog is one of my favorite animals!

 

[BigOwl]

Y'know, now that I think about it, I've already dealt with three plus years of waiting. I got on pretty well without the surgery, actually--just not much energy for doin' stuff. So if you're walking and having symptoms, do please discuss it with the doc--but also go for a second (female) opinion.

 

[Braveheart]

I got on pretty well without the surgery, actually--just not much energy for doin' stuff.

Big Owl- What you said just clinched it for me. I do not want to live with a situation where I am bereft of energy. What is the point of waiting for an operation when a person's lifestyle is so compromised?

I like to hike. Not big hikes, but I love to go into the mountains and walk. Already, one of the cardios in the practice, when we were talking about what I can and cannot do, said that I could not hike in Utah. Phooey on that!

 

[Nupur]

This is a great article, thanks for the link. Jen from Florida had sent me parts of it which I took to my cardio appointment. I want to chime in and say that sometimes getting those exact numbers are a problem. In my case, the regurgitation is so weird (eccentric jet from one corner) that the key number of regurgitation orifice (RO) is not possible to measure apparently.

I wish I could get fixed now. I am having a very hard time in the waiting room, afraid to push myself physically, afraid to travel, always wondering if something is a symptom or anxiety. But, as my cardio and surgeon have both said clearly "not now", I have to somehow deal with this uncertainty of when and how this is going to progress and lead me to surgery. I so admire folks like Chou who can run 2 miles a week before surgery, I just don't have the courage to not compromise my lifestyle. I am scared to exercise, and I miss it. I hope your time in the waiting room is not so terrible, Braveheart!

 

[Braveheart]

I wish I could get fixed now. I am having a very hard time in the waiting room, afraid to push myself physically, afraid to travel, always wondering if something is a symptom or anxiety. But, as my cardio and surgeon have both said clearly "not now", I have to somehow deal with this uncertainty of when and how this is going to progress and lead me to surgery. I so admire folks like Chou who can run 2 miles a week before surgery, I just don't have the courage to not compromise my lifestyle. I am scared to exercise, and I miss it. I hope your time in the waiting room is not so terrible, Braveheart!

What is happening to you, and others in the "waiting room", (including me) really gets me angry. What I can't figure out is why the cardios and surgeons don't factor in the emotional downsides of standing around and biting our nails until the "right" time happens.

I refuse to compromise my lifestyle. I will keep on with my 4 1/2 mile walks. If I drop dead on one of them, then I can say "I told you so" to the docs!

Seriously though, I am gathering all my materials, and will keep pushing until I find a top flight surgeon who is willing to operate.

 

[Nupur]

Actually, Dr Miller (surgeon) was extremely nice about it. He said to me that I can come back to him any time and tell him I just don't want to deal with this and he will try to repair it. In fact, I even said "Well, I want to get this done before you retire" to which he laughed and said "my retirement shouldn't be a criteria for surgery". But seriously though, he says that it is still a risky and invasive procedure and sure you want to do it before damage but not when it seems like your heart is coping well. However, as soon as I see my LVESD inching up, I will push for it, especially now that I know mine can be repaired if the surgeon is capable.

I totally commend your efforts to push for your case at CC.

 

[ALCapshaw2]

Braveheart -

There is another test that may be useful in your case.

The Stress EchoCardiogram will show if your gradients and/or other indicators rise after exercise.

Regarding Timing, I tend to believe that the Surgeon's have a better 'feel' for timing so encourage you to continue your efforts to get a Surgical Consult.

Good Doctors take into account both your 'numbers' and your 'symptoms / quality of life'.

'AL Capshaw'

 

[Braveheart]

Braveheart -


The Stress EchoCardiogram will show if your gradients and/or other indicators rise after exercise.

I have never had a stress echocardiogram. After I have my C-T for the blocked femoral artery, I have an appointment with a cardio. I will address that issue with him. Thanks for the "heads up" Al!