Introducing Myself...

[ruth]

Welcome!

I understand how scary it feels to hear there is something wrong with your heart. Sometimes researching online just leads to lots of scary search results. I hope you get to have a nice reassuring chat with your Dr. soon; 'Mild' usually means just that. You've come to a wonderful place with lots of supportive people who generously share of their time and personal experiences, they've all helped me a lot.

Best wishes,
Ruth

 

[sonavogel]

Hello to so many wonderful, compassionate posters to my thread! This means so much to me...well, I was going to say "you can't possibly know"--but in fact, you surely do know!

At this point, I know nothing more than my echo results (done in May) and the fact that my last EKG, done in March, showed a PR interval of 108 milliseconds--which my PCP did not tell me about at the time (I learned that it was something to watch out for only in April, when I had surgery to remove a cyst and the anesthesiologist pointed it out).

I have two cardio appts. (one Wednesday) and another that I'm about to make, after which I expect to choose from among the three (each refers to a different surgeon in NYC, all good, but I have to make sure they're aortic specialists, if possible, and also amenable to both minimally invasive surgery and ON-X valves--even if I choose not to go that way).

After the tests I expect to have run on me--and that I will ask for--I hope to have a clearer idea of my condition. And monitoring will proceed from there.

The only caution I would suggest is to limit your Weight Lifting which can increase your BP and possibly damage your valve. Most likely your Cardiologist will consult with you about an acceptable exercise plan after his evaluation. It is not uncommon to hear "more reps, less weight". In the early stages, aerobic exercise is usually acceptable.

Al, this certainly made me go cold all over. I have been weight lifting for years--always as heavy as I can, with all due respect and caution for the weight, of course. I would be very sorry to have to let go of this activity, although I will, naturally, if my cardio says the same. I also jog, and do body weight cardio exercises (you know, push-ups, chin-ups, lunges and squats) in a circuit designed to get my heart rate up--called tabatas. I wonder if this would be something to avoid as well...? I will ask.

Evelyn, thank you so much for the Roslyn hospital suggestion! I grew up on Long Island (Freeport), and my mom still lives there, so I know the hospital, naturally. At this point, though, I think I might try to focus my research and contacts on NY Presbyterian (either Cornell/Weill or Columbia) and NYU Med, since I live in NYC most of the year. My husband would be happy to fly us to the Cleveland Clinic, if it came to that, but I'm a bit nervous about having a team so crucial to my health and particular situation so far away from where I will be spending the majority of my time, once I'm recovering--should that time come. (And man, do I hope it never does. Please.) Evelyn, I see you have a springer! So do I--Melanie. She's the love of my life, a liver-and-white good-natured bundle of love.


Ruth, thank you so much for the kind words. Everyone's been so kind and helpful! And every kindness, every understanding post, feels like warmth. Which I very much need.

XXXXXXXXXXXXXXXX

 

[Lynlw]

Hello to so many wonderful, compassionate posters to my thread! This means so much to me...well, I was going to say "you can't possibly know"--but in fact, you surely do know!

At this point, I know nothing more than my echo results (done in May) and the fact that my last EKG, done in March, showed a PR interval of 108 milliseconds--which my PCP did not tell me about at the time (I learned that it was something to watch out for only in April, when I had surgery to remove a cyst and the anesthesiologist pointed it out).

I have two cardio appts. (one Wednesday) and another that I'm about to make, after which I expect to choose from among the three (each refers to a different surgeon in NYC, all good, but I have to make sure they're aortic specialists, if possible, and also amenable to both minimally invasive surgery and ON-X valves--even if I choose not to go that way).

After the tests I expect to have run on me--and that I will ask for--I hope to have a clearer idea of my condition. And monitoring will proceed from there.

Al, this certainly made me go cold all over. I have been weight lifting for years--always as heavy as I can, with all due respect and caution for the weight, of course. I would be very sorry to have to let go of this activity, although I will, naturally, if my cardio says the same. I also jog, and do body weight cardio exercises (you know, push-ups, chin-ups, lunges and squats) in a circuit designed to get my heart rate up--called tabatas. I wonder if this would be something to avoid as well...? I will ask.

Evelyn, thank you so much for the Roslyn hospital suggestion! I grew up on Long Island (Freeport), and my mom still lives there, so I know the hospital, naturally. At this point, though, I think I might try to focus my research and contacts on NY Presbyterian (either Cornell/Weill or Columbia) and NYU Med, since I live in NYC most of the year. My husband would be happy to fly us to the Cleveland Clinic, if it came to that, but I'm a bit nervous about having a team so crucial to my health and particular situation so far away from where I will be spending the majority of my time, once I'm recovering--should that time come. (And man, do I hope it never does. Please.) Evelyn, I see you have a springer! So do I--Melanie. She's the love of my life, a liver-and-white good-natured bundle of love.


Ruth, thank you so much for the kind words. Everyone's been so kind and helpful! And every kindness, every understanding post, feels like warmth. Which I very much need.

XXXXXXXXXXXXXXXX

Hi Welcome,
It is good you are being as informed as posible. As many others have said,with a 'mild' AI, it could be years ,if ever, that you need surgery. Everything in the heart world is improving, since it could be over a decade before you need surgery, it is POSSIBLE by then, replacing valves in the cath lab and not even needing have minimally invasive surgery,will be more common.
Don'tbe surprised if the cardiologists don't talk about a particular valve at this point, alot of times Surgeons are the ones to really discuss valve choice w/, also who knows by then, there may be better things that come along, like Tissue engineered valves they have been working on. They are working on growing them from the patients own heart cells,still mainly research, butI think clinical trials will bebefore 10 years. So I guess my advice would be, even tho it is great to learn about all the valves offered NOW and what your thoughts are about the pros and cons with each, I might not worry about if a cardiologist you like has strong feelings about any particular valve. Heck 10 years ago, if anyone talked to a cardiologist,the ON-X wasn't really around.
I am NOT a heart/valve patient, But My 19 year old son has had many heart surgeries and my Dad has mitral valve issues,so I do alot of research.
Speaking about cardiologists that refer to specific surgeons, since your surgery isn't probably in the near future, I wanted you to keep in the back of your mind heart surgeons and cardiologists ,seem to be doctors that switch around from center to center, so don't have your heart set(no pun intended)on having surgery at a particular center w/a certain surgeon and cardiologist, and planning in your mind around that. In the 19 years we have been doing this, so many of our doctors have moved,ect and it isn't just the ones we use, it seems to be heart doctors in general,as new places decide to expand ect or hospital politics, they tend to be alot like baseball players lol.
Well I wish you the best of Luck. IF you haven't yet,I would get a notebook and write down all your questions,test reults, ect and you can keep that with you,adding things after each appt. Lyn

 

[MaryC]

Hi Sona,
I was mild mitral valve prolapse in 1993 when I began seeing a cardiologist. I just had surgery this last February but your condition might not progress. I would ask your cardiologist, when you find one, about the weight lifting. Good luck and welcome to the site.

 

[chezza]

Welcome Sona

I find it a great comfort having the support of everyone here at valve replacement.com.
All the best, I'm in the situation now of finding a 2nd opinion doctor.

 

[sonavogel]

don't have your heart set (no pun intended) on having surgery at a particular center w/a certain surgeon

Puns are good! Thanks for the advice, Lynn--I hadn't been thinking along those lines, this is true. I simply started with the U.S. World report about the best hospitals and worked from there. I have seen already that a few of the renowned surgeons moved and one cardio started his own practice in January...stuff like that. So your point is really good.

So is keeping a journal/list, which I started to do with a Word page, gathering all questions and contact info. And I've started to do a cut-and-paste of info I read here that strikes me as relevant--since if I don't do that, I'll never remember which thread I saw it on!

What you write about advancements being made is hopeful to read, but I do get that little niggling feeling inside about how reliable new treatments would/will be if by the time (if it comes) I'm in need of help, something has been around for only 2-4 years; not much of a track record, in other words. It's inspiring to read about, and it bodes well for the future--but I wonder if we'd be talking my future, or my children's (or their children's).

At any rate, it's something to keep in mind, for sure.

Mary and Chezza, thank you so much for coming to say hi!

((((hugs)))) to all!

 

[Lynlw]

Puns are good! Thanks for the advice, Lynn--I hadn't been thinking along those lines, this is true. I simply started with the U.S. World report about the best hospitals and worked from there. I have seen already that a few of the renowned surgeons moved and one cardio started his own practice in January...stuff like that. So your point is really good.

So is keeping a journal/list, which I started to do with a Word page, gathering all questions and contact info. And I've started to do a cut-and-paste of info I read here that strikes me as relevant--since if I don't do that, I'll never remember which thread I saw it on!

What you write about advancements being made is hopeful to read, but I do get that little niggling feeling inside about how reliable new treatments would/will be if by the time (if it comes) I'm in need of help, something has been around for only 2-4 years; not much of a track record, in other words. It's inspiring to read about, and it bodes well for the future--but I wonder if we'd be talking my future, or my children's (or their children's).

At any rate, it's something to keep in mind, for sure.

Mary and Chezza, thank you so much for coming to say hi!

((((hugs)))) to all!

Another thing, rankings are important, But many of the rankings are based on bypasses, heart attack patients and other aquired heart problems,and not necessarily a reflection on their experiences with valve surgeries or aorta's (OR congenital Heart defects, which most of the hospitals I know about specialize in) so IF at all possible, read what the rankings are based on.

Your other point also is very good about newer treatments, Alot of things I write are for your specifically,but I try to remember alot of new people will come here and pull up threads too. People are so different, as you can tell just from VR, many people are more willing to try newer things in hope, while other prefer to rely on the tried and true, with proven track records like the St Jude valve (and still hope lol). One of the reasons I even mentioned them, is you mentioned the ON-X valve which has only been approved in the US for I think the past 7 years. Valve replacements in the cath lab are already being done, both in Europe where alot of medical things are being used for years before they can be in the US, and right now,there are already clinical trials in the US replacing valves in the cath lab, so 5-10 years from now, for some cases I imagine they will be more wide spread. By then the people having the valves placed now, will have had them that long.
Tissue engineering most likely will be you or your childrens, altho when Justin had his surgery 2 years ago, he had his conduit (dacron tube)and pulm valve replaced. at the time it "should" of lasted 10-15 years, I talked to a few of the biggest Congenital Heart centers in the US and for the most part, doctors in each center told us they believed that by the time he needed it replaced again, he would "probably" be able to get a tissue engineered one. Am I counting on them being common in 10 years? No, But I don't think it will be decades away either, they already have successful grown some already.
So it will bevery interesting to see what choices people have in 10 years,There already has been sooooo much of improvements in the 19 years I've been doing this.
As for your records on Word, I'm sure you know this, but back everything up or put it on a flash drive, I had somany of Justin's records on my computer as well as many papers,articles ect bookmarked and my computer died. it is ALL lost. My nephew luckily is a computer expert so is going to try and "find' all my important stuff on my old harddrive forme,but it would have been so much easier if I actually downloaded it onto something every so often.
I'm glad you found us,I think VR is just what you needed.Lyn

 

[Katlee]

Welcome Sona

Welcome Sona

Welcome to the group Sona; it's a great group, always ready to offer an
ear and share information. Hope you don't need anything done for a long,
long time.

 

[sonavogel]

I have an update that comes with a plea for strategies to proceed:

I have had an initial meeting with a cardiologist recommended by NY Presbyterian/Columbia, who refers to the Craig Smith, Yoshifumi Naka, Jeffrey Moses surgical team.

I thought he was exceptionally careful, conscientious, and patient-friendly, although this was only visit one. After asking me quite a few of the expected questions about symptoms (of which I could cite practically none, except for the week since I received my PCP-authorized echo, during which I experienced every symptom in the book), he did a thorough heart-stethoscope exam, an EKG, a blood panel, and finally another sit-down talk. He was not able to discern any murmur or soundings in my heart to indicate any aortic abnormality, and the EKG was perfect. He ended by authorizing a second echo, which will be done in in his office--I had a choice of three locations, but he's closest--this coming Wednesday, after which he will sit with me to look over the echo, tell me about the blood panel, and go from there.

I have a concern, one that I have noticed in threads on this forum: He's a cardio, not a surgeon. He may be an excellent cardio, but his preference(s) may be to interpret the echo--if it does not show any untoward thickening or swelling of the heart--as no cause for alarm and to tell me not to worry, as long as I'm not exhibiting worrying symptoms, and to see him again in 6 months (or a year).

I, on the other hand, would/will want to get an even clearer indication of my condition--the echo would not be able to show me the full aorta (I cannot think of the proper term--ascending aorta valve...?), and it can miss other specifics that might clarify how much deterioration there has been.

My question is, for those who have been in this situation, how do you approach the cardio with your concerns? And which tests, specifically, do you ask to have after the second echo? A stress echo? An MRI? A TEE? Would he consider a CT (considering the radiation effect)--or should I leave that one alone?

Do I emphasize that having a clearer indication of my condition will help allay any current fears--but also might enable him to determine when/if surgery would be warranted before the absolute cutoff--to avoid the possibility of heart damage prior to an emergency intervention?

Help???

Thanks, Sona

 

[ALCapshaw2]

Sona,

Take a deep breath (or several). I suspect you are still in a MILD state of shock after discovering that you have a "Heart Condition", i.e. "MILD Aortic Regurgitation".

To help put things in perspective, here is the list of Medical Modifiers in increasing order of severity:

NO / NONE
TRACE
MILD
MODERATE
SEVERE
CRITICAL

MILD is usually intrepreted as "OK, there might be something going on here, lets WATCH it every Year or TWO" for signs of progression.

I would 'think' that a standard Echocardiogram would see Aortic Regurgitation "well enough" not to require more sophisticated tests. Ask your cardiologist to confirm this for your own satisfaction.

The issue with seeing the FULL Aorta is to look for aneurisms (NOTHING to do with the Valve). Aneurisms are often the result of a connective tissue disease (a Bicuspid Aortic Valve, a.k.a. BAV, may be an indicator) and may or may not be preceeded by Pain. That is one reason the Cardio grilled you about symptoms. It sounds to me like this Cardiologist is being thorough and reasonable. I recommend trusting HIS judgement at this point.

The typical Cardiologist - Surgeon 'debate / standoff' doesn't happen until your KNOWN disease has progressed to / near the SEVERE stage. At that point, old school Cardiologists tend to like to wait until your symptoms are more severe while surgeons like to operate *before* there is permanent damage to your heart muscles or walls.

YOU are NOT THERE YET.

Take another Deep Breath, trust your Cardiologist (or get a second opinion if you have any doubts), and RELAX. It may be YEARS before you need surgical intervention, or maybe even NEVER. Just keep those regular checkups. "Wait and Watch" seems like the appropriate protocol at this time.

'AL Capshaw'

 

[sonavogel]

Al, thank you for stepping in to reassure me and stabilize my thinking--I can use the clearheaded advice! Nevertheless, I still am hoping that this cardio will agree to at least one further test (beyond the echo) to take a look at the entire aorta, to rule out any dilatation or bulging at this (admittedly early) point.

If he agrees, and that kind of test shows nothing to be concerned about, then I would/will indeed take a deep breath, follow his instructions, and see him at the intervals he suggests.

Here's hoping for an encouraging and uneventful appointment!

Best, Sona

 

[Lynlw]

If you want your whole aorta imaged, that can be done with either MRI or CT. It's not a bad idea at all, especially if you know or suspect that you have BAV. In fact, if you do have BAV or if it is strongly suspected, or if you have a history of sudden cardiac death in your immediate or extended family, you probably should have your whole aorta imaged. But don't get bent if it doesn't get ordered on this first appointment. You have no symptoms. Your regurge is mild. There is time. Chill. Really.

I wish I had known when I had mild regurge.

I also wanted to add,i'm not sure about your insurance,but that MAY be an issue to get an MRI approved for Mild regurge. Justin's cardiac MRI was 14,000 dollars (Just the test itself, not the doctor and other charges to read it) and was the only test/surgery we had to have pre-approved by insurance.We have a PPO.I don't know what a CT cost, Justin never had one of those until his infection,and that bill hasn't come in yet.Lyn

 

[sonavogel]

Just got back from my second visit with the cardiologist I have opted to start with: Dr. Christopher Irobunda, affiliated with NY Presbyterian/Columbia. I am still pleased with his caring, concerned attitude. Specifics:

He had wanted to have another echocardiogram performed, and this I opted to have done in his office (it?s closest); the technician took the proper amount of time, and at one point Dr. Irobunda came in, pointed to a few stats, and she nodded and then continued on.

After it was over, I was in his office for about twenty minutes; the report will be sent to me presently, but the results indicated the same DX: ?mild aortic regurgitation.? However, he was puzzled by what he saw from the tape that indicated that such regurgitation as there was, was flowing back through the aorta at an angle rather than directly in. To him, the ?angle? aspect of the regurgitation has to have a reason, and since the echo wasn?t showing why, he has ordered a TEE.

While I?m not a masochist, I am pleased about this. I too want to know more about what?s going on. He indicated that all valves, the aortic root, the left and right systolic and diastolic values, are all normal; he also answered (when I asked) that he does not believe there is an aneurysm, but I?ll be happy to see what the TEE shows about the ascending aorta...assuming the views from a TEE encompass that much more than a regular echo.

He emphasized, when I asked (for confirmation), that it?s ?mild? and not ?trace??but before he?ll go further about definitely not ?moderate? or whatever, he wants to see the TEE. This will be done either Monday or Wednesday morning, next week, and we?ll go from there.

Question: From those who have had TEEs, do you think it will make a difference if I stress to the technicians performing the test that I have a very small throat and the last time I was intubated (surgery), I ended up black/purple from the top of my throat to the bottom of my breastbone--bruises that took over a week to leave me?

 

[Lynlw]

Question: From those who have had TEEs, do you think it will make a difference if I stress to the technicians performing the test that I have a very small throat and the last time I was intubated (surgery), I ended up black/purple from the top of my throat to the bottom of my breastbone--bruises that took over a week to leave me?

IF I were going to mention it I wouldn't wait until you are talking to the tech.I would try to find this out when you are schedualling it. They do TEEs on small children,so I am sure they have different size probes if one is needed. But this might bethe kind of thing that needs take care of before you show up for the TEE,Lyn

 

[sonavogel]

Lyn, thank you for this heads-up! I've just left a message with the cardio's office, asking them to apprise the hospital tech or office about my throat fears; and when I get the appt., I'll call there to raise the issue myself, well in advance of the date. 'Course that doesn't mean it'll be taken care of, but I'll try!

Thanks, Lynn~

Best, Sona

 

[ALCapshaw2]

All of my TEE's have been performed by Cardiologists (and my AVR surgeon during surgery).

Tell your Cardiologist, before you go in.

'AL Capshaw'

 

[strawberry]

I too have mild AI, confirmed by three echos in two years. The most recent one said "there is a central jet of regurgitation." So mine is not off to the side. All echos also say my valve is trileaflet. Is your's definitely not bicuspid? I would love to know what is causing mine. I had my echo in June but don't go back to the cardio until Dec. I may ask for a tee also because the latest echo also found a bidirectional atrial septal aneurysm "with no obvious shunting." Well, the tech did not have me valsava which would show if I have a PFO or not. So I'm left hanging with questions too....

 

[sonavogel]

I may ask for a tee also because the latest echo also found a bidirectional atrial septal aneurysm "with no obvious shunting." Well, the tech did not have me valsava which would show if I have a PFO or not.

<startled> Good heavens! What language is this? I read it and reread it, but I haven't a clue! "Aneurysm" I understand, but ... what does the rest mean?

 

[Cooker]

I too have mild AI, confirmed by three echos in two years. The most recent one said "there is a central jet of regurgitation." So mine is not off to the side. All echos also say my valve is trileaflet. Is your's definitely not bicuspid? I would love to know what is causing mine. I had my echo in June but don't go back to the cardio until Dec. I may ask for a tee also because the latest echo also found a bidirectional atrial septal aneurysm "with no obvious shunting." Well, the tech did not have me valsava which would show if I have a PFO or not. So I'm left hanging with questions too....

Holy Crap!!! What the _ _ _ _ did she just say

 

[strawberry]

Sona..

Sorry, in really big hurry to get off on vacation. Small things like explaining terms and stuff go by the wayside when the beach is calling. I had to look up atrial..referring to the top two chambers of the heart. Septal...the walls between the chambers. Aneurysm...in this case not as scary as it sounds (and sounded to me too). Apparently it just means a floppy wall between the two atria. In some people it bulges to the left, some to the right, and some (me) both ways. I had to look it up and when I did I read it's benign but sometimes indicates a patent formaen ovale (PFO), a small flap-covered hole. Shunting of blood from one side to the otherthrough a pfo usually can't be seen (on echo it would be seen as a flow of color) without the patient doing a valsalva manuever (the same move used to poop if you must know, but you don't poop). AND ifyou have a PFO AND an atrial septal aneurysm there's a higher chance of stroke.

Holy Crap!!! What the _ _ _ _ did she just say [/QUOTE

Cooker: Maybe your post gives me a hint as to why I seem to rarely get replys to my posts. I saw someone had posted after I did and eagerly checked the thread to see that it was just about me, not to me. A lot of people here talk in technical lingo and I don't think a lot of the words were THAT out-there.