I'm a newbie...and worried I won't have the operation in time!

[valerie415]

Hi everyone, I have a biscupid aortic valve, and severe stenosis, just turned 60. I was told by my doctors in Mexico where I was living, that I needed to get back to Canada IMMEDIATELY for an operation. My echo showed .5, and I believe that is very very narrow, right? They were quite alarmed and said the only walking I should do is to the airport and get on a plane for Canada.
That pretty much alarmed me, and I took off 2 days later, and here I am in Edmonton. I had no dr. so went to the ER where a doctor hesitantly, but finally, referred me to a surgeon. And now the surgeon has referred me to a cardiologist who is doing a cardiology workup. I had a bloodtest, and then tomorrow thankfully I have my first echocardiogram, and then I have to wait two more weeks for the angiogram.
I'm just concerned if I'll last that long. No one seems to be too concerned, and I haven't seen any heart drs. yet, although I've talked to their secretaries on the phone about my concerns. Maybe tomorrow when I get the echo, that will get some action.
But I just don't know....is .5 considered pretty dangerous? I have a lot of symptoms now: lightheadedness, shortness of breath, hard time swallowing, can't walk very far at all and have to walk really slowly, pains on both sides of my neck. And these things alarm me. I haven't ever fainted, but it's pretty scary.
Does anybody have any advice for me? Should I just wait and pray and hope I don't have heart failure while they slowly do the tests? Maybe I shouldn't be alarmed, and I would appreciate any encouragement!! The dr. at the ER said, "Oh, people walk around with .1 who can't have surgery, and they're still walking around, you'll be fine!" Is that really so??? The drs. in Mexico said my valve is extremely calcified and like a big rock!!
Thanks for any advice, I really appreciate it!
--Valerie

 

[ARGreenMN]

Hi Valerie and welcome to the forum. I'll have to let the more veteran members here respond to how dangerous .5 is. I'm still kind of a rookie with all this and don't know enough about the numbers. In fact I don't even know what my number was before surgery 4 1/2 wks ago. I asked for copies of my records last week though, because I am curious now. I just never knew to ask, and don't remember them ever telling me. I had severe stenosis/regurgitation and when they got in there, my sugeon later told me my valve was so calcified he had to cut it out in pieces, which is apparently not typcial. At my Angio, the surgeon told me he'd prefer me to get the surgery scheduled in the next 2-3 wks, 4 at the most. But because of my work and his vacation, I ended up scheduling it for 5 wks out after the angio. I was a little nervous too, like you are about something happening before surgery, but the docs seemed ok with the 5 wk wait so I just put my trust in them and they told me not to over-exert in the meantime. Sounds like your symptoms might be a little more severe than mine were though. I didn't have the swallowing issues or the pains in the side of my neck. I've got a buddy who says they basically rushed into emergency surgery because he was at risk of dying within days when they diagnosed his need for surgery. So I think they CAN quicken things up if they feel it's necessary. I would assume they know about the .5 number, and your symptoms so they must not think it's an emergency. Of course even the best docs aren't always right, so if you're nervous, I think I'd push for them to do it as soon as possible. Have the symptoms recently gotten a lot worse, or have they been this bad for a while? If they've recently gotten a lot worse, I think I'd be even more concerned about getting it done sooner. And one thing I've learned is - it's ok to be a pain in the butt and keep asking 'till you feel comfortable with the answers. So don't be shy about telling them you're nervous and would like it done as soon as possible. I'd think they should be able to move things around and get you in. Like you said, maybe the cardiologist you're seeing tomorrow will have more of a sense of urgency when he sees you. Hope you get in as soon as possible. Keep us posted on what they say tomorrow. And you'll probably have a bunch of questions as you prepare for surgery - so fire away - this is the place!

 

[Luckyguy17]

Hi Valerie,

Welcome to the forum and a welcome return to Canada.
Firstly the echo is an approximate measurement and will need to be further confirmed with your newly assigned cardiologist. You are doing well to pressure the system and if you are truly in the measurment stated by professionals in Mexico and are exhibiting symtoms as described, you are likely to move up the critical list quite rapidly to surgery within a month or months...i was driven through the system in less than 60 days to surgery, with those measurements and little symptoms...so would think that triage in Edmonton would be similar to ours in Montreal.

You may want to refrain from driving with symptoms as described, as it is likely how you could do most harm, but in meantime, do slow down, until cardilogists assessment...do let us know how you are doing once you have had echo and some guidance from your cardiologist. Valerie you are quite fortunate in having a cardiology leader in Calgary(not too far)...Dr. Fedak and you may want to inquire about kryptonite glue for sternum closure when you meet with the surgeon in Edmonton.

Good luck with the process and am quite sure you will find the forum very beneficial as I have

Gil

 

[Mentu]

Valerie, .5 cm2 indicates that stenosis is very advance and the symptoms you list are consistent with stenosis. If that estimate of your valve area is correct, you will likely find that the medical machinery will begin to move. As for what you should do, you might consider avoiding emotionally stressful situations, temperature extremes, vigorous physical exercise and chemicals such as caffeine that increase heartbeat. Should you start having a problem it would be a very good idea to go to an emergency room. If you are feeling OK today, however, the odds are excellent that you will have no major problem before surgery.

Larry

 

[ottagal]

Hi Valerie,

Just wanted to add a warm welcome to you from a fellow Canadian. Getting news like this is always a shock and alarming for all of us. As Gil said, you are in a great place for excellent care. For the record, I was followed for a year and a half with severe aortic stenosis (.8) and then the last echo showed .5 (in June of last year). At the time the cardiologist said that I would require surgery within 4-6 weeks. In my case, I ended up having surgery at the end of October for various reasons that are too long to get into.

For the record, the intra-operative TEE report showed that my stenosis was severe, but not as severe as what the June echo showed at .5. Take a deep breath and know that you are in good hands with the experts. Your cardiologist and surgeon should be able to guide you in your decision making. Ask them what you should and should not be doing in the meantime.

Please note that indexing to body size is important. For example, if you are a petite woman with a .5 valve versus a large man with a .5 opening, the severity will be different. They also look at the pressure gradient across the valve to determine severity and timing of surgery as well (amongst other things esp. symptoms etc).

Feel free to ask any questions that may come up. This is a great site!

 

[Freddie]

Welcome to the forum Valerie, I'm sorry I can't add much that hasn't already been said to a fellow Canuk, but you may want to check out our member named Zipper2 - under the members list and find her thread in regards of the surgeon she had in Edmonton. I think the thread would be dated on January (or before) 2008.

Stay on top of those doctors and get copies of all your reports.

Try to relax for now until you get results from your upcoming tests.

 

[Maryka]

I second most of the advice you have been given. (I am confused by the .5 and .9 stuff, but I always watched my aortic aneurysm which was between 4 and 5 centemeters...I knew it was "time" when I could no longer walk many feet without stopping to catch my breath) Please DO return to Canada. Then, if you have any small symptom, head to the hospital. That includes back or chest pain/discomfort, extreme shortness of breath, inability to walk up inclines or stairs, etc. People can black out from situations such as yours, which is why a person on this list told you not to drive. I second that. In the meantime, I found being on lots of beta blockers helped show down my deterioration. But, all in all, calmly return to Canada and prepare for this event. Wearing or carrying some sort of medical alert notification would also help a lot.

 

[ARGreenMN]

That includes back or chest pain/discomfort, extreme shortness of breath, inability to walk up inclines or stairs, etc.

Maryka's comment above reminded me of something I've been meaning to ask. I've always heard about chest pain being a warning sign, and my cardiologist would always ask "any chest pain?" at my annual checkups before surgery. But he never asked "any back pain?". My "angina" symptoms usually felt more like back pain (or more accurately back tightness and neck pain) than chest pain to me. I also had pain in the back of my neck (like a stiff neck) often, which I think may have been related as well. Although once in a while, I'd feel some chest pain too (which I'd try to convince myself was just radiating from my back). I mentioned both (back pain/tightness & neck pain) to both my cardiologist and my regular physician before surgery - trying to get them to clarify whether that could be related to my valve, or if it was likely something else. I never got them impression they were convinced the back pain/tightness or neck pain was due to the valve. I'm pretty convinced now both were likely related to my valve, and I've talked to a few others that say the same.

So my question - why aren't upper back pain/tightness and stiff necks advertised more as a symptom to watch for? I wonder if it might save some lives... I suspect there may be others out there, like me, that wait too long because of this. Especially guys, because we seem to live in denial - not the river but the mindset - more often about our health issues than the smarter species (aka women). I was trying hard to convince myself that this is all just back pain - nothing to do with my heart... And it caused me to put off my visit to the cardiologist for over a year longer than I should have. If I would have known that it's at least somewhat common to feel upper back issues, I might have been less likely to put things off. Oh, who am I kidding, I would have found another excuse to put it off. But seriously - shouldn't back pain be advertised a little more as a possible symptom?

 

[ALCapshaw2]

Valerie,

It seems that no one is paying much attention to the pains in your neck.

Be sure to ask (BUG) you Cardiologist about the possibility of stenosis in your Carotid Arteries which can be a risk factor for Stroke. The usual test is another fairly simple Echo of the neck to assess the Carotid Arteries. The Sooner, the Better!

'AL Capshaw'

 

[Lily]

Valerie, no wonder you're worried. I'm no doctor but I really don't think that people are "walking around" with an aortic valve stenosed to .1 , though there are many walking around with a 1. I hope this doesn't sound presumptuous but I think that doctor may have been confused.

Ask your doctor all of these questions you have. Pre-op, I was having "sick achey pain" that went up my back and on up both sides of my neck and the cardio told me it was angina. I was very surprised.

Also, you don't have to pass out to be in a severe situation. In fact, from what I've read, you really don't want to pass out. It could be a very severe and life-threatening symptom.

Also, the swallowing problem you mentioned is worrisome; I don't recall anyone else here ever mentioning an issue like that. Please mention these things to your doctors and post again and let us know how you are.

 

[tobagotwo]

There are not people walking around with an aortic valve stenosed to .1 cm², but as Lily mentions, there are people walking around with a 1.0 cm².

A .5 cm² aortic valve opening is a big deal, assuming the echo done was accurate, although you may well get a slightly different reading from a different technician. Either way, don't do any heavy or even moderate lifting (anything that would make you grunt). A .6 cm² opening puts you at critical, so you you should do your level best to keep the medicos moving until they get you onto the surgery schedule or prove to you that the Mexican echo was way off.

I agree with Al, that you should get an echo done on your carotids, just to be sure.

As Ottowagal points out, your body size weighs in on the scale of concern. A smaller, petite size is a help in this case.

In any case, you will still likely be fine until you have your surgery. People are amazingly resilient.

Andy, you should do a search on angina. Many forms of angina have been listed out numerous times, including such things as neck and jaw pain. They may even be listed in the Glossary (see link in my signature below).

Best wishes,

 

[valerie415]

Wow! Thank you all for all your thoughts, encouragement, advice, comments! It's so encouraging to know you're all out there and I'm not alone in this!!

I went for my echocardiogram this morning, but the technician was very tight-lipped and wouldn't give me any information at all. She said that I will have to request a report from my doctor, which I will do right away, as I would really like to know what the results were.

Gil, I hope I am moved along as fast as you were there in Montreal when the dr. sees the results.

When I got home, I started having chest pains on the left, and pain in my back on the left too. I've never quite had it like that before, but it seems to be letting up a bit.

For all those who mentioned body size, that was encouraging to me, as I am on the petite side, so I guess that is working in my favor!

As for the driving issue, I don't have a car here, and am taking the bus or taxis to my appointments. I'm in walking distance to the hospital, which is a comforting thought.

Thank you again for all your input, I'm going to read it over all again and study it. I'm sure you'll see me back here asking lots of questions!! I guess I'm just at the start of a long journey that a lot of you have already taken, so I really do appreciate all your input.

I'd like to put a picture of myself up here, but I can't figure out how, it doesn't seem to be letting me.

 

[Bill B]

But I just don't know....is .5 considered pretty dangerous? I have a lot of symptoms now: lightheadedness, shortness of breath, hard time swallowing, can't walk very far at all and have to walk really slowly, pains on both sides of my neck. And these things alarm me. I haven't ever fainted, but it's pretty scary.
Does anybody have any advice for me? Should I just wait and pray and hope I don't have heart failure while they slowly do the tests? Maybe I shouldn't be alarmed, and I would appreciate any encouragement!! The dr. at the ER said, "Oh, people walk around with .1 who can't have surgery, and they're still walking around, you'll be fine!" Is that really so??? The drs. in Mexico said my valve is extremely calcified and like a big rock!!
Thanks for any advice, I really appreciate it!
--Valerie

You have some pretty good symptoms. Make sure the cardiologist knows about them. As everyone indicates, a single echo is not necessarily accurate. See what the one tomorrow shows. Take it easy and see what the cardiologist says after that. The ER doc sounds like a boob. No one walks around with a valve area of 0.1 cm^2. That's the size of a pencil lead. He must have meant 1 cm^2. His relucatance to refer you really bothers me. You must have a murmur that could be heard across the room judging by the echo showing a severely stenotic, heavily calcified valve. The idea that people are fine with severely stenotic valves is very old school. I expect that if your echo tomorrow resembles the one in Mexico you will see a different attitude from the cardiologist.

 

[Penny]

Welcome Valerie!
As you can see by all the responses, this is a great site! I have no advice to add except to keep pressing with the doctors. Take many many deep breaths and have faith that it will all turn out as it should. I hope you get the answers that you are seeking from you doctors very soon for we all understand the stress in the unknown and believe many of us have joined this site to find some answers from others experiences.. Just remember no need to walk this journey alone, not here on this site

 

[Woodbutcher]

Hello Valerie, welcome to Vr !
I hope you find a good cardiologist to go through your scan results with you, explaining in user friendly terms exactly what’s going on in your ticker and find a surgeon too.
My scan showed 0.5, this sent bells ringing through the medical system and I was expedited through any waiting lists and having surgery ten days later.
With my 0.5 I was still working 10 hours a day on a demanding construction site ! The Cardiologist insisted I stopped immediately and refrained from any form of exertion until my operation.
The important thing is that you’re in the system now, on the radar so to speak and I’m sure that once your condition becomes clarified by the medical fraternity then wheels will be set in motion to get you fixed as soon as possible.
You’re in the right country at the right time, so try to relax, deep breaths, positive attitude and before you know it you’ll be on the other side of the mountain and on the mend.

 

[Dale 1]

Valerie,

My valve was at .7 before my surgery, and I felt really awful. Your symptoms sound very familiar! I was 2-1/2 weeks between diagnosis and surgery. I was 59 at the time. In my opinion, your Mexican doctors were right to tell you to get back to Canada. I'm not familiar with the Canadian system, so I can't comment on that. I went to the ER because of my symptoms (which included chest pain) a few days after I was diagnosed. Don't be afraid to take advantage of the ER if your symptoms continue or worsen. I was admitted from the ER and kept in the hospital for three days; I felt quite scared when I was released, so I can understand how you're feeling! Hang in there. You're going to be okay. Just be a squeaky wheel if you need to be. Squeak loudly!

 

[Bina]

Welcome,
My valve was down to .8 and I was feeling terrible, dizzy, weak, and was forbidden from driving a car. No waiting for surgery at all, had a cath, then surgery 2 weeks later.

 

[pat45750]

Hi Valerie

Just wanted to welcome you. I am fairly new also. Found out several weeks ago that I had severe aortic valve stenosis from a heart echogram. Don't know my numbers or anything about that. I do know that you feel surprised, panicked and wondering what the heck is going on when they tell you that you need open heart surgery! Surprise! I will be getting my AVR replaced Aug 9 at the Cleveland Clinic. So I am waiting out 2 months and until then being careful what I do.

I would like to give you more information, but am too new for that. Just know that I will think about you and be here to give you some supportive words. There are very nice folks here who can answer many questions for you. They have answered many for me.

Good Luck and take it easy as you work thru the system.

Pat

 

[valerie415]

Hi everyone, remember me? I sort of disappeared off the radar here because the day after I posted, i had some chest pains and went to the ER again, and THIS time the ER took me seriously, they called in some cardiologists from the top floor, and before I knew it, I was having the surgery! I am now 2 weeks post op! It all happened so fast. I was in the hospital a week after the surgery, and now a week at home. I've had to go back to the ER one time with an Afib, but that straightened itself out. I'm just so thankful that's it's all over and I have my new valve (it's a bovine valve) and I am not on any blood thinners except one aspirin per day. I had an awesome surgeon and they treated me so well, I am truly blessed. So though I was off to a rather rough start here, I believe God is in control and took over and made it all happen for me. When they finally took an echo it was about a little over .3, so so narrow. The surgeons were anxious to operate as they said it is very dangerous to wait too long. So that's the happy ending to my story!! Thank you for all the input you gave me when I first go on here, and now I have lots of questions about the post op and I'm expecting I'll find all my answers within these pages. (Still can't figure out how to post my photo, sorry about that!!)

 

[Luana]

Whew! Glad you've made it to the other side, Valerie! Take it easy and you should be doing really well in no time.