Clueless

[tobagotwo]

Why a surgical consult...

Why a surgical consult...

Breakingwaves,

I also like to gain information from a wide range of sources, so I am completely in sympathy with your approach. Coaxing the similarities from widely varied sources makes for compelling results.

I don't know what to say about the timing and your three, new, stability-starved kids. Just that you need to be around for more than the next year for them, and please try to take the long-term view. You may be surprised to find that they may want to help you, as that is sometimes the case with kids who have been through a lot. I know we take displaced kids to a store and give them a budget to buy themselves something for Christmas, and they almost always come to the counter with little gifts for everyone but themselves. It tears your heart out. Well, not the same thing, but there's a parallel there, somewhere.

Very glad you are headed for a second opinion with a cardiologist, and will speak to him about a consultation with a surgeon. You are quite close to Philadelphia, and I would very seriously consider some of the fine institutions there, as that is likely to be a hub of surgical talent and volume.

Be aware that a consultation with a surgeon does not mean you're setting up surgery. Surgeons provide a different perspective of the condition of your heart, and it is the surgeon's opinion about when, whether and why surgery should be done that is of interest to you. You may decide you need to set up surgery based on his input, or you may not. He may not even feel you are ready for surgery yet. It's not a given.

The basis for taking this route (consultation with a surgeon) is that in general, cardiologists are conservative about heart surgery, preferring that you keep your own parts as long as possible. This is good in some ways, but sometimes leads to having some of the enlargement and damage to the heart become permanent, not going back toward normal after surgery. Some cardiologists may find that acceptable, as it is "manageable" damage, and still feel it is better than having surgery and its associated risks sooner. Some cardiologists may also feel that if they send someone to heart surgery before they absolutely have to, others will feel that they gave up too quickly on managing the symptoms.

Surgeons tend to want to do their work before the heart develops permanent damage. Their viewpoint tends toward being that they want their finished work to be as perfect as possible. As a surgery recipient, I kinda like that notion.

There is one more thing I want to nag about. It is not true of all physicians, but...

Physicians in general, including cardiologists (both male and female), seem to let women go longer than they would men, with apparently equivalent symptoms. They seem to put less weight to a woman's description of her symptoms than a man's. Please be sure to impress on them your level of activity, so that they don't assign you the label of "sedentary female" or disregard the severity of your symptoms.

I hope things work out well for you, and you find a surgeon and facility you feel comfortable with. Think Philly.

Best wishes,

 

[breakingwaves]

tobagotwo

tobagotwo

This type of encouragement and guidance is so good for me because it helps me make sense of the thoughts in my head and helps me to remain calm when I go about asking questions, I always was a person who does not enjoy surprises, so information is helpful. Especially when it comes to dealing with professionals that I feel intimidated by. Funny thing you mentioned the active question, already the doctor in the hospital asked how active I was, it would have never occurred to me that would be something to be apart of any decisions. thanks for mentioning that.

I used to be an over 60 hour a week Fund Development Director for a non profit, worked all the time, even weekends, planning and executing countless fund raising events. I also served on many community boards. With accepting full time responsiblitiy for this three children who go to three different schools and have lots of difficulty coping with life, I swear I put in more blood and sweat time dealing with all the things that come up in a week. I spend three hours a day on the road just transporting them to three different schools, one 40 minutes back and forth for specialized education. My husband also travels out of the country every week for his employment so I function as a single parent. Active is an understatement most weeks, I fall into bed nightly and then start all over at 6 the next morning.

so thanks for the tip off! also Philly isn't something I had thought about, I had thought of the other direction, being Washington DC, so I will now think broader and out of the box!

Wanted to ask this question but pushed the submit too soon, is afibs meaning that sometimes my heart feels like its doing flip flops and feels so loud I can feel it through my neck? If that is so I have felt that for quite some time.

 

[bvdr]

Hi Breakingwaves,

Maybe I missed it somehow but do you know the cause of your heart problems? Do you have a bi-cuspid valve, rheumatic heart disease, or is it unknown? I too want to welcome you to this forum. It is always nice to get to know more of the family.

 

[breakingwaves]

McClin

McClin

Thank You! I handle alot of challenges by trying to educate myself, I think for me it keeps me from getting lost in the problems. Basically I find life fasinating, and now this journey for me is probably not going to be dull either. I also have a husband who doesn't deal well with these kind of situations and the children I raise certainly can't handle anymore trauma in their life, so being able to talk with a group of people who know all sides of this is a great comfort to me! Otherwise I feel kinda all by myself and I am not one to want to get myself feeling sorry for me.

 

[breakingwaves]

Bvdr

Bvdr

Thank you, it feels so good to be apart of people who really know what it is like. I am not one to mention this to my friends and family because I know that it is beyond their understanding for the most part, so for the last couple of years I have just kept it to myself, and now I find myself trying to be a quick study so that the decisions I have to make can be ones that I don't just pull out of a hat! LOL!

I just realized in reading my post, I didn't answer your question, actually I would have to pcik unknown, I have heard this comment from doctors for a very long time, since a young adult, but it was always did you know you have a heart murmur? I always said after first hearing it, yes but didn't think anymore about it, my family is not very close, so where it comes from I have to say, I am in the dark.

 

[Harpoon]

Before you go anywhere else on this stuff, you REALLY should have at least a "good" understanding of your heart condition and WHY you may be a candidate for valve surgery....


A heart "murmor" is defined as ANY sound that is not considered part of the normal heart function.

ANYTHING.

The clicking of an artificial valve is actually a murmor and to the "untrained ear" would be identified as a potential problem without other empirical data (medical charts, seeing the scar on your chest...)

I've had a murmor almost my entire life. It's actually the sound of blood running through a baffle or "conduit" that is part of the original repair on my heart which was done almost 30 years ago.
Once upon a time, while I was in college (the first time, not now) I had a physical for insurance purposes that was performed by an oncologist. During his exam, while listening to my chest, he asked if I knew I had a heart murmor. The guy must have been at least in his upper 60's and probably never heard of transposition of the great vessels before I explained it to him.


Ask specifically what's wrong with your heart. What valve isn't working right, why, what is it doing to the rest of your heart, your body, your lungs???

Are there limits to your physical activity, what are they? Water retention? Should you watch yoru diet/sodium intake/fluid intake?


You gotta know this stuff, it will help you later on in more ways than you'll be able to count.

 

[breakingwaves]

harpoon

harpoon

thanks, that's why I actually put the test results out there because I am trying to read where I am at this moment. Until going over them here and for myself, I didn't even think about the mitral valve or the enlargement. I am really new to displaying symtoms, or at least ones I haven't ignored. I came from a family who worked physically hard, my Dad moved us to a farm in our childhood, so being tired was a benefit of that, not a problem, so I always ignored being tired. I also have had swelling in my feet, which I contributed to getting older.

History, well I know that now instead saying do you know you have a heart murmur, they say do you know you have aortic stenosis, they can hear it pretty clear without any tests. I do not know why except for calicification, I have had gall bladder, kidney stones, diverticultis, and it all seems to come from too much calicum if I understand correctly.
my blood work doesn't show any kidney damage though, or high sugar, and only slightly elevated cholesterol.

I am trying to have a crash course on not only where I am at the moment but learning what's wrong with where I am at this moment. I have already learned alot from what others have shared and explained to me.

all I can go from is two different events, the first being about 5 years ago where I woke up with feeling like an elephant was sitting on my chest and I couldn't breath. I went to emergency and ended up with a cath that the surgeon said was clean, went back to my pretty hetic working life, then came down with the stomach ailment, and the surgeon for that informed me of the aortic stenosis, bug surprise, and disappointment.

So for the past 3 years, just follow ups and a visit with the caridologist to confirm and keep watching. three weeks ago I woke up out of sound sleep with the most incredible chest, arms, neck and back pain, I couldn't hardly move, back to hospital and the Dr. told me it was now moderate to severe, and that I should look for a heart surgeon. that pretty much brings things up to date with the execption of my appointment is the end of Oct. with the new cardio who is to refer me to a surgeon. Is that how it is done or do you find your own?

 

[bvdr]

I actually gathered my own records and called the surgeon I wanted to evaluate my situation. My cardiologist at the time wanted to do a cutting balloon angioplasty on a couple of coronary arteries with some blockage. He, however, did not do balloon valvoplasty so I declined his offer and searched for someone who could do both procedures at once. I made the appointment and I ended up not yet needing the coronary artery and my mitral valve was not suitable for the valvoplasty so I had valve replacement instead.

If you find a surgeon that seems qualified then call his office and see how you go about getting an appointment with him. Also call your insurance company to make sure you can self-refer. It takes a while to get all your records (probably copies of all applicable tests you have had is enough) and make sure you check and double-check that they have been sent and received. I hand carried most of them. Copies of your ER records might also be helpful.

 

[breakingwaves]

Bvdr

Bvdr

thanks, good to think about, I am now offically a record gatherer. I used to let all that stuff be kept where ever they keep those things but after peeking in here had my first doctor visit where I asked and he didn't even miss a beat. I felt kind of empowered to take stuff away from his office about myself!

 

[PapaHappyStar]

Dont feel like you have to play by any rules in order to save your health, go to as many professionals, ask any number of hard questions as you see fit. There are a lot of cardiologists and surgeons out there and if someone doesnt satisfy you go somewhere else. Dont let anything deter you.

I dont know what the cause of my stenosis is: reality seems to be I have a severe blockage, if this is not fixed I face permanent heart damage, so I will get it fixed and the surgeon will probably tell me whether it was congenital from the lesions on the valve.

I am getting yet another cross check on the echo though and I would like to get a 3-D echo so they can get some idea of the morphology of the heart valves if possible, in my case the initial echo mentionaed mitral annular calcification and mitral leaflet thickening as well but the latest one doesnt. I have a few questions regarding both echos.

My opinion: Get as many looks at your heart as you can before you get any cutting done....

 

[breakingwaves]

PappaHappyStar

PappaHappyStar

sounds like good advice, as many looks makes perfectly good sense to me, as I would like as much to be known before the big operation. I am so in awe of the people here who have had to go through this more than once.

 

[tobagotwo]

Breakingwaves,

That feeling could well be atrial fibrillation (afib). I had it increasingly before my surgery. It certainly sounds like one of the arrhythmias.

You should definitely mention it to your cardiologist, so he knows it's happening.

Afib to me felt like the beat was off-sequence, and it frequently was accompanied by a "sinking stomach" feeling, or "elevator stomach," like there was something wrong. It drew my attention to itself any tme it happened.

Best wishes,

 

[breakingwaves]

tobagotwo

tobagotwo

I will. Is it only me or does the fear of what's to come make me wish it away, or am I just the only one to fear myself into denial. Just posting here has had to make me face more of the reality than even seeing the doctor, it seems so surreal.

 

[Bryan B]

BW,

It's just you...kidding.

When I first found this place I would read the stories and posts for awhile and then I would have to stop because it was freaking me out...lol...my skin would literally start crawling. Slowly though, this place helped to desensitize me somewhat while at the same time helped me to learn the truth about heart surgery instead of what I had conjured it up to be in my head. I was still scared right up to the day of the surgery, but much less so than before I found this wonderful site.

Now I'm having my wires removed tomorrow. Scared? You bettcha. Anytime I get rolled into an OR I'm going to be scared to some degree, but I haven't given this surgery nearly the amount of time in my head as the OHS. All I know is that as soon as they start my IV and push that first bit of "happy juice" though my veins...everything will be right with the world.

 

[breakingwaves]

Bryan B

Bryan B

I love the humor ! I have used it to get me out of some tight spots before! Your thoughts are exactly what I am feeling, its all a bit much to process, and sometimes lately I have tried to distract myself from time to time. I can see the real benefit though in dealing with the fear in a way that it doesn't overcome you, and I am hoping my mind will settle down at some point. I keep hoping the more I find out the more I will be able to be more clinical about it. I am trying to do this so when I do have my moment with the cardiologist, I don't sound like a blubbering idiot. thanks for your words and I will be thinking of you very loudly tomorrow!

 

[tobagotwo]

It seems like just about all of us must have gone in and out of denial before surgery. Even fully tuned in to what's supposed to happen and why, there's always a little guy in there, jumping up and down, screaming, "Don't let them do this to me!" And another one lounging around, saying, "Don't worry. They're not really going to do it."

I found that surreal denial very useful in the hospital before surgery. I didn't let myself take it seriously. I focused on the inconsequential. I was asking about the surgery steps on the way down to the OR, and oddly enjoying the ride through the hallways. They hadn't spiked my IV yet, so it had to be some protective, internal, stupefying chemical in my brain. Like a deer in the headlights.

Even afterwards, I think my body was in complete denial. "They didn't do anything to your heart, and we're not going to talk about it. You've, uh, been in an accident. You hurt your chest, but you're okay. We're going home now..."

Best wishes,

 

[Mary]

I'm glad to hear these stories. I know I wake up at night and think, surgery by Christmas; nah, think I'll wait!
I guess most people go through this denial, unless it's an emergency case?
Mary

 

[breakingwaves]

tobagotwo

tobagotwo

I like the play by play,I can almost see the ceiling tiles as we go rolling along! I have one of those guys in my head too! You have left some very vivid images that I think are gonna stick! Denial sounds like it can be a good friend at times. One of the things I like best about raising kids is that you rarely get too much time to be thinking just about yourself.