New: Is there an antechamber to the Waiting Room?

[Halya]

Brand new to this...I’m not sure whether I’m ready to open the door of the Waiting Room yet, but it’d be nice to have just a little place sheltered from the cold wind.

I was waiting to get back the results of my echocardiogram, which took a couple of weeks. The internist’s receptionist said the doctor had reviewed the results but would leave it to my GP to discuss with me. The GP’s office eventually called and said to come in but it was nothing urgent. So I thought, ho hum, just routine and hadn’t I been good for actually getting a physical. I’d recently turned 45 and thought it would be a good idea to get some of the little niggles, aches and pains checked out.

Well, I saw the internist for another matter and he looked up my echo results. He read some stuff and turned to me and said “You will need open heart surgery. Not in 2 years, probably not in 5 years” and then he got a bit vague. I got a bit hazy...

I had an appointment with the GP right after and the internist had already talked to him. Definitely a more grave appointment than others I’d had. The GP read words like pulmonary hypertension and said “that’s outside my expertise” and started writing referrals. And so it starts...

The echo report had these findings: bicuspid aortic valve (1.8cm2) with mild stenosis, trivial/mild regurgitation on all valves (except the pulmonic), borderline pulmonary hypertension, and a slightly dilated left atrium.

That seems to be quite a shopping list of issues but I think I like all the trivial-mild-borderline type of wording. Maybe I just had an extra-vigilant radiologist? I’d had a previous echo 7 years ago after a heart murmur was found. At that time the only thing on the report was mild tricuspid regurgitation. I was told no restrictions and no follow-up required.

I’m in a bit of an information vacuum from official sources right now, waiting for further tests and appointments, but have certainly spent a fair bit of time trying to educate myself. Thank goodness for this site and all the fine folks contributing. I also hauled out my old textbooks (I’m a paramedic) and started re-reading everything about the heart.

So, I guess it’ll mean watch and wait for me for quite some time. Stress test in a week, then an appointment with another internist (I’m in a small town, no cardiologists nearby), and then ???

Trouble is, the first internist is suspicious that I may already be displaying some cardiac related symptoms. I had a number of pre-syncopal episodes in the month after an endoscopic examination for which only mild sedation was used. He’s trying to figure out why that happened.

I think I’m starting to move out of the shell-shocked stage and now am just looking to get some real information. If everything is so trivial/mild, is it even possible that I am already having symptoms? Good thing I documented the events before I was told about the BAV, because right now I’m second-guessing myself on every little twinge and weird sensation I feel.

Anyway, just wanted to say hello and thank you to everyone involved in these forums. Sorry about this being so long winded. Any advice for these early stages – especially coping with the waiting - would be greatly appreciated.

Halya

 

[dornole]

Can you get to the big city and see a cardiologist?

 

[Mentu]

Hi, Halya, we have done a lot of waiting so you are in good company here in VR. 14 years ago when I was 50, I got a new doctor who almost at once asked about my heart murmur. No one had ever said anything about it to me so she sent me to meet my cardiologist for the first time. My results were somewhat like your's and at the time he told me that it was likely that one day I would need a new heart valve but it wasn't certain and would not be soon. Nine years later, I began to experience some shortness of breath that didn't seem to go away with exercise. In fact, exercise was becoming more difficult and about a year later, my aortic valve was replaced. It is pretty typical that a valve will not change very much until something happens to make it begin changing rapidly. Its possible your valve will never change much in which case you just need to be aware of the possibility but otherwise go on about your life. If it does begin to deteriorate more rapidly you and your cardiologist will know it well before it becomes serious. So you need to know the symptoms that can appear if it changes, be watchful and get your cardiologist to check it regularly - you will need to get a cardiologist although you may only see him once a year or so. Currently there are no medications that can treat Aortic Stenosis so the only thing you can do to help is to be in the best health possible. Should the day come that you need a new valve, the more healthy you are, the more likely an excellent outcome.

You are, at any rate, in the right place and you are welcome to come in a chat. Many of us don't find this haven until we are near the end of the process; I think you are in a better position where you can become familiar with the various topics and follow the experiences of others before there is any necessity. Welcome aboard.

Larry

 

[mbeard]

Wait and watch

Wait and watch

Hayla,

Welcome to this forum...it is informative, experience-filled, and an expert source of first hand knowledge about heart valve issues.

When I came here last November, my diagnosis was only a few months old. I was 58, and had gone an entire lifetime not knowing I had a congenital BAV, accompanied by an enlarged aorta. Shocking to say the least. I became afraid to pick up my heavy purse or my light grandson.

I went through an ACUTE period of stress and fear.

Then I found this forum. And a new cardiologist with a technician who performed his echos, with him in the room, brought me a newfound confidence.

A peace of mind is hard to come by but it can be done. I sincerely hope that with some time you can learn to live well with the "wait and watch", routine.

 

[river-wear]

Welcome, Hayla!

Don't pay much attention to the 2 years, 5 years guesses. They don't really have any clue and the doctor probably just wanted to allay your fear that surgery was imminent. You've had a shock, so it's understandable that you might panic a bit. You're doing the best possible thing now by researching your condition and following up with the doctors.

I can't help with the stenosis part; I have the opposite problem - my valve leaks like crazy. I've been upgraded to "severe" but still don't have any discernible symptoms. Maybe more shortness of breath when I work out and my pulse goes into the 140s and above. Everyone is different though, as I'm sure you know as a paramedic.

Best of luck to you.

 

[Halya]

Can you get to the big city and see a cardiologist?

I'm hoping that will be the next step after I see this new internist. Closest General hospital is about 5 hours away and they have cardiac surgery capability there. A colleague just had a valve repair there a few months ago. We take a fair number of patients there by ambulance. I might take a walk around next time I'm over there for work.

If that doesn't work, I guess that Vancouver or Calgary might be an option. They both have top notch centres. Not sure how much choice I will have within the Canadian health care system.

 

[Halya]

Hi Larry,

Thanks so much for your reply and welcome. It feels amazing to hear from folks who've been through similar experiences. I have a pretty good support network, even though I've been selective about sharing the news. I haven't told members of my family yet - they've been through too much already the last few years. I quickly found out, though, that not everyone is comfortable talking about such things so I think this forum will be a great outlet.

I have been taking a lot of steps to get healthier even before this latest news. Pretty much stopped drinking, am exercising 5-7 days per week, and have dropped over 30 pounds in the last 4 months. I guess it sunk in that I was approaching middle age and needed to start looking after these things. It's amazing how much being active helps, I actually feel much better now than I did last year. I must say, though, it took a lot longer to see results this time than when I was younger.

I'm very glad I found this place, and found it early. Thanks again,

Halya

 

[Halya]

I went through an ACUTE period of stress and fear.

My goodness, I can completely relate. That's where I've been for the last 13 days. Dazed and confused. I even checked out what my employer offered for counselling services. It is better this week. I had a bit of an emotional melt-down on day 8 and I've felt a lot calmer since. I needed that release, I guess. Now I just want answers and can't wait to get on with more tests, appointments, etc., whatever it takes to figure out a plan.

I had no clue I had a congenital heart problem. A murmur, yes, but nothing I needed to be concerned about. I'm just so glad that my GP referred me for the echo as a matter of routine. And that the internist, who I've heard described as "god-like" by other physicians (he is considered the great wise man of medicine in this town), insisted on investigating the cardiac side after the reaction to the anaesthetic. I've had lots of luck already and hope it will continue.

So you are in the watch and wait mode now? I'm glad to hear that you have a good cardiologist.

Thanks for the welcome and it looks like I'll be in good company in this waiting room.

Halya

 

[Halya]

Thanks for the welcome, Michele.

I'm hoping I'm past the worst of the initial panic stage. More like obsessive research phase now.

In regards to the timing, the doctor stopped meeting my eyes after saying 5 years and then tried to make a joke about "maybe not for 40 years". I said "I'll take that". It was pretty obvious that neither of us believed that. Also, this guy doesn't have a sense of humour so it really fell flat

I appreciate that he didn't try to sugar-coat it. He got my attention and set me up with further referrals. I can't ask for more than that at this stage.

It's interesting seeing all this from the other side. One positive I can see coming out of this is that it will improve my practice as a paramedic. I think I'll be more empathetic, especially with cardiac patients. And I know I'll interrogate them about every test and procedure they've had, if they're in a talkative mood

Best of luck with getting your surgery date and getting things sorted out.

Halya

 

[Paleowoman]

Hi Halya,

Welcome to the forum. Yes I think there's an antechamber to this waiting room ! I got in the antechamber aged 24. I was working in France and went to a GP because I had bronchitis. He listened to my chest and said "vous avez un coeur qui souffle" - you have a heart that "suffles" ! I wondered what that was. On returning to the UK I went to a GP who listened, said it was a "murmur" and referred me to a cardiologist who thought it was biscupsid aortic valve but couldn't confirm that on echo. So I went the next nearly 30 years knowing of this but not knowing much. A gastroenterologist heard things not right in my early 50s and referred me to a cardiologist who thought it would be nothing, did an echo and said as he was doing the echo "you'll have to have heart surgery"….said it just like that. He later apologised for the way he said that and hoped he hadn't scared me…well of course he had ! It was seven years later that I eventually had surgery. During this period I found out as much as I could about bicuspid aortic valve and heart surgery BUT I made sure I got fitter and fitter and hoped that the cardiologist was wrong in his prognosis as not everyone needs surgery. With yearly echos I could see the progression of the stenosis though - I kept a graph - but I still made sure I got as fit and strong as possible. I took up wieght lifting, serious weight lifting, not girlie lifting, and I think I got fitter than at any time before in my life, and even the last echo technician before surgery commented on the strength of my heart and asked if I did weight lifting - he could see it from my heart ! Yes I freaked on occasions, especially when referred to a surgeon - that was the worst part of this waiting room as then I felt helpless - but until then I did what was best for me.

Btw, the mild regurgitation with all the valves - I've been told that's more or less 'normal'. It's the bicuspid bit that's abnormal. The echo report should say what your pressure gradient is which is a good indication of the degree of stenosis…..they don't normally do surgery until the stenosis is severe.

PS…of course I'm in the antechamber to the Waiting room again now since my replacement valve is tissue and will need replacing at some point…...

 

[epstns]

Hello Halya, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spent so many years in The Waiting Room (over 9 years for me) that for a time I held the post of Waiting Room Host. I was able to greet and to help allay the fears of many people in your situation. Since my surgery 3 years ago, I've not been around quite as much, so the waiting room may be a bit dusty and need some new magazines. (With it being a virtual room, several of us used to joke about how we were decorating it and what diversions and playthings we kept there for others to use as they waited.)

My own story is like many. I had no idea that I had a "heart condition." As I passed 50, I did notice my energy level declining and my exercise tolerance decreasing (yeah, I am sort of a gym rat, too). I saw my internist/GP for a complete physical to try to see what was happening. She told me "There's nothing wrong. You're just getting older. Get used to it." I continued to press her and eventually secured a referral to an endocrinologist to check out things like my thyroid, etc. At my first visit to the endo, he performed a quick physical. As he listened to my chest, he asked me "How long have you had the heart murmur?" I was dumfounded. Murmur? Nobody ever mentioned one - not even the GP who had examined me just 2 weeks prior. To crank my anxiety level up to 11, the endo said "Now, I don't want to alarm you, but I do suggest that you have this murmur evaluated sooner, rather than later." Uh-oh! This cannot be good!

To make a 13 year story short enough to type, I saw a cardio, fired him and saw another, had echo's and follow-up consultations and found out that I had moderate to severe aortic stenosis at age 52. At that age, the working diagnosis was "probable bicuspid valve, with stenosis." After the initial shock, my cardio helped me to realize that although surgery was, for me, nearly a 100% probability, it wasn't yet needed. I was able to just live my life for over 9 years before I decided it was time for surgery. That was just over 3 years ago, and today I'm a different man, but one who not only values life more highly, but one who can live it more fully than I could have prior to surgery.

You've come to the best place to wait for valve surgery. You can learn all about your path and discuss it with many folks who have walked that path before, as well as some who will become your classmates. There is more first-hand experiential knowledge here than anywhere else, and the folks are most willing to share and support each other. Ask all the questions you can think of, and visit often. It sure helped me to deal with the long wait, and it can help you, too.

 

[Midpack]

Hi Halya! Welcomed to the forum!

Regarding grading terminology in echos, from my experience, i can tell you that:

Trivial/Mild: Not worth worry. Almost any healthy person will show, for instance, some trivial regurgitation on some cardiac valve.
Moderate: Merits some worry, but not too much at this point. It is something that must be controlled and followed according to your cardiologist indications.
Severe: Requires an strict control. The surgeon is sharpening his knife :eek2::biggrin2:

You will be fine!

 

[Halya]

Thank you all so much for taking the time sharing your stories. It helps so much to know that others have gone through this and come out okay on the other side - probably even wiser and stronger.

Midpack and Paleogirl, I needed to hear that much of the echo report is basically normal. I think that's how my rational mind reads it, too, but it just takes a while to get back to believing it emotionally, too.

The facts are that I now know something new about myself: I have a bicuspid aortic valve and some weak indications that things are starting to progress compared to 7 years ago. That's about it for now. I will be tested further and then monitored closely by a team of professionals. Not a bad place to be, really. Even better, there is support available from friends and this online community.

Medically, this might be the best thing that's ever happened to me, at least now I'll go to the doctor on a regular basis, no more excuses...

Steve, I'll do my bit and bring some magazines to the door of the waiting room. I hope everyone likes to read about dog shows

Halya

 

[Paleowoman]

Medically, this might be the best thing that's ever happened to me, at least now I'll go to the doctor on a regular basis, no more excuses...

That's very true ! We get watched and checked up medically better than ever and the docs make sure we have appointments to see them for reviews regularly. This happens before and after AVR. And I was used in the MRCP PACES medical exams for doctors progressing up to consultant stage, and yesterday one of the consultants I see who organises the exam said I'd be used even now I've had my BAV replaced :biggrin2:

 

[epstns]

Hi Halya! Welcomed to the forum!

Regarding grading terminology in echos, from my experience, i can tell you that:

Trivial/Mild: Not worth worry. Almost any healthy person will show, for instance, some trivial regurgitation on some cardiac valve.
Moderate: Merits some worry, but not too much at this point. It is something that must be controlled and followed according to your cardiologist indications.
Severe: Requires an strict control. The surgeon is sharpening his knife :eek2::biggrin2:

You will be fine!

Forgot the last one-

Critical: What are you doing later today?

 

[epstns]

Oh, and Halya - You don't have to stand at the door to The Waiting Room. Even folks who only think they might need valve surgery are most welcome here.

 

[Duffey]

Halya, my story is similar to Mentu's. No one ever heard my murmur until I was 49 years old. I was sent to a cardio who told me I would need my BAV replaced someday. My "someday" turned out to be four years later.
Happily I had found VR.com before that time and spent a fair amount of time in the waiting room with epstns. The Waiting Room is a great place for support and companionship, and we always leave the light on. Welcome, and come on in.:smile2:

 

[Halya]

Allrighty, then. I'm cracking open the door to the Waiting Room and looking for the comfy chair

 

[epstns]

It's the one on the right. I'll be sure there are new batteries in the TV remote. I sure hope Cort has been paying the cable bill. . .

 

[BackDoc]

My best advice; stop listening to the GP and the internist; both are out of their league on this one. 9 years ago an internist actually told me that I had suffered a heart attack, and that I needed to see a cardiologist asap. I had a patient who is a cardiologist and I called him right away. he looked at the EKG, did one of his own and told me in no uncertain terms that I did not "have a heart attack", but he did hear a murmur. No one else ever told me that. I played ball in college, and spent 4 years afterwards in the military. No other doctor ever mentioned a murmur.

An echo confirmed his suspicion of a bi-cuspid aortic valve. Two years later the surgeon I consulted with decided it was time for a replacement. I was 50 at that time. Surgery was breeze and I have a bovine aortic valve. Within 12 weeks I was back to all activities. I was back in my own office 4 weeks post op. It has been 7 years post op and all is well.

Moral of the story, we are all experts at something, our own little piece of the world, but we can't be a master of everything. Consult with the specialist for your specific situation. Good luck.