I am frustrated, relieved and a little angry over a sequence of events over the last few months that I wondered if anyone else had experienced or had something similar. I have AS and am in the waiting room. The consensus is that it is congenital, but not sure if BAV. Annual checkups with cardio for last 10 yrs always were the same – no real change, come back next yr until the one in June. Now there has been significant change, the Aortic Valve Area (AVA) was now .87 cm2 (severe) down from prior year’s 1.2 cm2. I was interrogated about symptoms and could only recall being very fatigued and had SOB on exercise and a couple of dizzy spells.
He decided he wanted a stress echo and so we did that. At the visit to go over results. Dr. told me at about 145 bpm they stopped it as it started going bad at that point. My arms also went numb. We started the surgery discussion and I was talking like 2010 and he said ‘Why wait so long?’. Now I had this feeling in the pit of my stomach I know many of you have experienced… here we go it is time. I had a trip planned in Sept. to the Caribbean Island of St. Lucia to visit an old friend and was strongly urged to cancel that, but then he decided to do a L/R heart cath and have that be the deciding factor. So did that in early August. I recall seeing cardio for a few minutes after the procedure ( he did it as well) , but a surgeon (I had never met but heard of) stopped by to tell me my AS was borderline severe and to lose 40 lbs and we’d go from there. (And billed me for the pleasure…) They’d follow me monthly he said. He didn’t say it out right, but led me and my sister to believe that losing the weight was the main pre-requisite for surgery. So I figured early 2010 maybe and immediately started dieting like a fiend (I needed to anyway – talk about motivation).
I met with PA to get heart cath results (should have insisted on Dr.) and found out the AVA was more like 1.02 cm2 to 1.2 cm2. Also LV was hyperdynamic so they put me on 25 mg of metoprolol. However, she still nixed the idea of the trip, so I sadly canceled it. Told me to come back in Sept. for echo. I asked if it was a good idea to start talking with surgeons and she said yes.
So I had the echo in Sept. and then appt with cardio to go over results. He set me on edge to start, with a comment of ‘What can I do for you’? What the hell?? He has over the last few months set my whole world on its ear and he wants to know what he can do for me? I reminded him I was there for the results of my echo. This one shows AVA of 1.4 cm2. Huh??
I asked if he thought that the echo that showed the .87cm2 AVA was just a bad test or what? His response was I shouldn’t focus so much on the numbers but whether it is Moderate, severe, etc.. I asked if it had to be a certain ‘bad ‘ before Insurance would pay for surgery and he said ‘He didn’t think so’. I did know full well from reading this forum that at least a surgeon thought it had to be a certain ‘bad’ before they would do it. I told him about symptoms all of which apparently were mostly the result of the metoprolol and the fact that the PA took me off of my thyroid (T3) medicine my last visit, after talking with a pharmacist. He was surprised about that and said that normally he wouldn’t mess with orders from other Dr.s, unless absolutely necessary, but then did mumble that it was a stimulant. He said that one day I would need to have that valve replaced and it was like deja vu! I lost it and said I’ve known that for 10 years – but you had given me the impression it would be soon and now you have my ‘grounded’ too. I told him I had appts with two surgeons he had recommended over the next couple of weeks. He sensed my anxiety and desire to get this over with and he said he would talk with them. He said he'd see me in Feb. (so much for monthly - but ok by me.)
The surgeon I saw this week (Dr. Steven Dewan in Austin, TX). I liked him very much. He told me frankly that it wasn’t time. On avg. the AVA decreases .1 cm2 per year so it could be 1 to 2 yrs to 7 yrs – who could say. He answered a ton of questions for me very patiently though and showed me the selection of the latest valves, so not a wasted visit. He told me since it wasn’t time, he didn’t think my life should be restricted and I should go on about living it basically – except again don’t do anything too strenuous. Pretty much what I was doing until that echo in June.
Now that was a long tale of woe from a whiney girl who hasn’t really been through anything serious yet, but has anyone else had the results of their echoes vary so much in the size of the AVA? I know getting a good tech is paramount to getting the best views/angles. I had a different tech each time. I recall distinctly the tech who did the echo that came out .87cm2 complained the whole time about the machine. It was new and buttons were in different places she said. Maybe I'll ask if I could have the same one each time - does that make sense?
My cardiologist is well respected at the Austin Heart Hospital and by the surgeon I saw, but I can‘t help but wonder if I shouldn’t put my trust in someone else. It seems to me that I have been put through a lot of anxiety for nothing - not to mention expense. I find myself pretty much right where I have been and that visit in June should have still been a ‘see you next year’ had it not been for that .87cm2 echo result. Maybe this is just the way the cookie crumbles….
I have now re-scheduled my St. Lucia visit for around New Year’s (Only reserved at this point). Is this trip a risky idea now given my latest status? I don’t know what my cardio would say – I’m not sure I am going to ask. Granted, St. Lucia doesn’t have the best medical facilities and Dr.s in that part of the world, but I’m not going to go diving or do anything too strenuous. Maybe some snorkeling, but mostly lying on the beach and relaxing.
I won’t be climbing the Pitons I can guarantee you that!
It has been a real emotional roller coaster, but I feel now like a big weight has been lifted. I am in no big hurry to join the OHS club (but y'alll are a fun group) – but this sitting around and waiting was driving me crazy. Do the surgery or cut me loose... I couldn't plan anything. It is still lurking out there for some time in the future, but I feel like I have been given a reprieve and I guess I should just be happy with that. Plus I have more time to get those 40 lbs off (see y’all in the throwdown – I’m keeping at that part of the plan). I also feel better now that the Metoprolol has been cut in half. I’ve decided to keep the appt I have next week with the second surgeon (in the same practice – a little awkward.) although he is likely to tell me the same thing. He is the one who stopped by when I had my heart cath - Dr. John Oswalt.(Maybe I'll tell him he could stand to lose a few pounds himself! He is well known for the Ross procedure and I’d like to hear what he has to say. I’ve been told I am a candidate for that –(at 56?)
It was a long one – sorry - but sure feels better to put my heart on my sleeve so to speak and any feedback/comments are appreciated.
Rhena
He decided he wanted a stress echo and so we did that. At the visit to go over results. Dr. told me at about 145 bpm they stopped it as it started going bad at that point. My arms also went numb. We started the surgery discussion and I was talking like 2010 and he said ‘Why wait so long?’. Now I had this feeling in the pit of my stomach I know many of you have experienced… here we go it is time. I had a trip planned in Sept. to the Caribbean Island of St. Lucia to visit an old friend and was strongly urged to cancel that, but then he decided to do a L/R heart cath and have that be the deciding factor. So did that in early August. I recall seeing cardio for a few minutes after the procedure ( he did it as well) , but a surgeon (I had never met but heard of) stopped by to tell me my AS was borderline severe and to lose 40 lbs and we’d go from there. (And billed me for the pleasure…) They’d follow me monthly he said. He didn’t say it out right, but led me and my sister to believe that losing the weight was the main pre-requisite for surgery. So I figured early 2010 maybe and immediately started dieting like a fiend (I needed to anyway – talk about motivation).
I met with PA to get heart cath results (should have insisted on Dr.) and found out the AVA was more like 1.02 cm2 to 1.2 cm2. Also LV was hyperdynamic so they put me on 25 mg of metoprolol. However, she still nixed the idea of the trip, so I sadly canceled it. Told me to come back in Sept. for echo. I asked if it was a good idea to start talking with surgeons and she said yes.
So I had the echo in Sept. and then appt with cardio to go over results. He set me on edge to start, with a comment of ‘What can I do for you’? What the hell?? He has over the last few months set my whole world on its ear and he wants to know what he can do for me? I reminded him I was there for the results of my echo. This one shows AVA of 1.4 cm2. Huh??
I asked if he thought that the echo that showed the .87cm2 AVA was just a bad test or what? His response was I shouldn’t focus so much on the numbers but whether it is Moderate, severe, etc.. I asked if it had to be a certain ‘bad ‘ before Insurance would pay for surgery and he said ‘He didn’t think so’. I did know full well from reading this forum that at least a surgeon thought it had to be a certain ‘bad’ before they would do it. I told him about symptoms all of which apparently were mostly the result of the metoprolol and the fact that the PA took me off of my thyroid (T3) medicine my last visit, after talking with a pharmacist. He was surprised about that and said that normally he wouldn’t mess with orders from other Dr.s, unless absolutely necessary, but then did mumble that it was a stimulant. He said that one day I would need to have that valve replaced and it was like deja vu! I lost it and said I’ve known that for 10 years – but you had given me the impression it would be soon and now you have my ‘grounded’ too. I told him I had appts with two surgeons he had recommended over the next couple of weeks. He sensed my anxiety and desire to get this over with and he said he would talk with them. He said he'd see me in Feb. (so much for monthly - but ok by me.)
The surgeon I saw this week (Dr. Steven Dewan in Austin, TX). I liked him very much. He told me frankly that it wasn’t time. On avg. the AVA decreases .1 cm2 per year so it could be 1 to 2 yrs to 7 yrs – who could say. He answered a ton of questions for me very patiently though and showed me the selection of the latest valves, so not a wasted visit. He told me since it wasn’t time, he didn’t think my life should be restricted and I should go on about living it basically – except again don’t do anything too strenuous. Pretty much what I was doing until that echo in June.
Now that was a long tale of woe from a whiney girl who hasn’t really been through anything serious yet, but has anyone else had the results of their echoes vary so much in the size of the AVA? I know getting a good tech is paramount to getting the best views/angles. I had a different tech each time. I recall distinctly the tech who did the echo that came out .87cm2 complained the whole time about the machine. It was new and buttons were in different places she said. Maybe I'll ask if I could have the same one each time - does that make sense?
My cardiologist is well respected at the Austin Heart Hospital and by the surgeon I saw, but I can‘t help but wonder if I shouldn’t put my trust in someone else. It seems to me that I have been put through a lot of anxiety for nothing - not to mention expense. I find myself pretty much right where I have been and that visit in June should have still been a ‘see you next year’ had it not been for that .87cm2 echo result. Maybe this is just the way the cookie crumbles….
I have now re-scheduled my St. Lucia visit for around New Year’s (Only reserved at this point). Is this trip a risky idea now given my latest status? I don’t know what my cardio would say – I’m not sure I am going to ask. Granted, St. Lucia doesn’t have the best medical facilities and Dr.s in that part of the world, but I’m not going to go diving or do anything too strenuous. Maybe some snorkeling, but mostly lying on the beach and relaxing.
I won’t be climbing the Pitons I can guarantee you that! It has been a real emotional roller coaster, but I feel now like a big weight has been lifted. I am in no big hurry to join the OHS club (but y'alll are a fun group) – but this sitting around and waiting was driving me crazy. Do the surgery or cut me loose... I couldn't plan anything. It is still lurking out there for some time in the future, but I feel like I have been given a reprieve and I guess I should just be happy with that. Plus I have more time to get those 40 lbs off (see y’all in the throwdown – I’m keeping at that part of the plan
). I also feel better now that the Metoprolol has been cut in half. I’ve decided to keep the appt I have next week with the second surgeon (in the same practice – a little awkward.) although he is likely to tell me the same thing. He is the one who stopped by when I had my heart cath - Dr. John Oswalt.(Maybe I'll tell him he could stand to lose a few pounds himself! He is well known for the Ross procedure and I’d like to hear what he has to say. I’ve been told I am a candidate for that –(at 56?)It was a long one – sorry - but sure feels better to put my heart on my sleeve so to speak and any feedback/comments are appreciated.
Rhena
