27 y/o

[Archer8]

Hello Everybody,

I was diagnosed with a Bicuspid Aortic Valve when I was about 11. My experiences led me down the path into becoming an ultrasound tech focused on both echocardiography and vascular imaging. I'm doing my clinical rotation at a hospital in one of the boroughs of NY now, but unfortunately it's unpaid and so I'm currently between insurance carriers and just looking for some advice from people who have been in my situation.

My valve have been progressing for me over the past few years, but I've recently lost trust in my cardiologist due to some very incorrect measurements on my last echo. He also seems extremely resistant to the idea of surgery, stating that he would rather keep me alive for another year over risking death during surgery. I feel that this is way too conservative of an approach for someone my age, but would love to hear what you guys have to say.

In 2011, my left ventricle at it's largest was 5.8 cm, and it's currently at 6.3 cm. My aortic root was 4.0 cm, and it's currently at 4.4 cm. My regurgitant jet is classified as severe, it was classified as moderate in 2011. I should also mention that there is sudden cardiac death in my family history, I have death at age 39 and 41 both on my mother's side due to cardiac issues, but autopsy's were never done. Where do you guys think I am in terms of surgery? One of my main concerns is waiting too long and letting my heart dilate and compensate for the insufficiency and it effecting my heart for the rest of my life (even after valve replacement). I'm a pretty young guy, so I want to get the most out of this one heart that I can!

I've also been experiencing some issues with caffeine lately, for the past 2 months or so (and getting worse) I've been extremely sensitive to caffeine. I've been drinking at least a cup of coffee a day since I was about 17, but lately it's been giving me palpitations and light headedness and forcing me to lay down for an hour or so. Has anyone else experienced issues like this with caffeine?

Thank you all for reading my post, and for posting your own stories. My wife and I have been going through them for the past few weeks and have found them extremely helpful and calming.

 

[pellicle]

Hi there

Hello Everybody,

I was diagnosed with a Bicuspid Aortic Valve when I was about 11. My experiences led me down the path into becoming an ultrasound tech focused

interesting ... that's sort of how I found myself interested in genetic stuff and why I did my Biochem degree ,,,

I was diagnosed at 5 and (being born in 64) medical imaging was quite primitive then ... recently (being now in IT) I had actually considered the move into some medical imaging area but was put off by 1) costs to acquire such skills 2) low pays 3) I'll be mid to late 50's when I get out, so why??

anyway ...

My valve have been progressing for me over the past few years, but I've recently lost trust in my cardiologist due to some very incorrect measurements on my last echo. He also seems extremely resistant to the idea of surgery, stating that he would rather keep me alive for another year over risking death during surgery

wow ... like which planet is he from? Or are there some other serious co-morbidities I missed in reading your post?

Last I read OHS was about the most successful medical intervention we had for a major life threatening illness.

In 2011, my left ventricle at it's largest was 5.8 cm, and it's currently at 6.3 cm. My aortic root was 4.0 cm, and it's currently at 4.4 cm. My regurgitant jet is classified as severe,

there is an emerging view in what I read in the literature that early intervention is preferable ... what I understand of what you wrote indicates we are past early intervention.

I should also mention that there is sudden cardiac death in my family history, I have death at age 39 and 41 both on my mother's side due to cardiac issues, but autopsy's were never done. Where do you guys think I am in terms of surgery?

err ... well to me *you're* more the expert than us, we are all patients in the main here, having said that I'd classify you as "overdue"

One of my main concerns is waiting too long and letting my heart dilate and compensate for the insufficiency and it effecting my heart for the rest of my life

uh huh ... me too

I've also been experiencing some issues with caffeine lately,... like this with caffeine?

when I first got out of my last OHS (had 3 since I was 9) I had a similar issue ... but it has declined substantially lately.


Best Wishes.

feel free to discuss more, but just be a bit patient with those of us who don't know the tech details and measurements for the significances they may / should hold.

 

[knotguilty]

My cardiac surgeon drinks coffee like crazy and says he has palpatations all the time. Palpatations alone, I don't think, are uncommon or dangerous. But it is probably a sign of something going on. When I was first diagnosed, my cardiologist told me to stop the caffien and see if that helps. I had developed other issues after that which took me the the operating table. Family history also adds to the statistics. You are right about wanting to preserve your heart, my surgeon wanted to operate on me before I had any enlargement issues. He said the prognosis is better down the road if it is handled now. You should look into the website einsurance or look into the affordable health care, so you can get yourself looked at. You don't want to play around. You would feel better knowing one way or the other.

 

[BlindFaith]

Welcome to the site. I don't know enough about your details to comment. And putting the cost of insurance aside, why not get another opinion. If you have the echo results over the past few years, should be straight forward to get someone to review. Good luck and hang in there. And I agree, don't stop searching until you are comfortable.

 

[Archer8]

Thanks for all the responses.

Unfortunately the training is pretty expensive, but the salary in my area is above average so it should work out in the long run. It looks like it's a field where salary is very highly location dependent. I think my current cardiologist is used to dealing with older patients who have a higher risk of complications during surgery, in which case I would agree to wait. That's not my situation though. I guess the biggest challenge is opting for a serious surgery without any real symptoms.

My concern with the caffeine issue was that it was new, I've never really had that issue before. But it could just be nothing but harmless palpitations. My wife's open enrollment is in February so I'll be added and I'll be able to get everything in check then.

I do have the echoes from the past few years, and I should be getting an MRI sometime this week at the hospital. I'll have to find another cardiologist and a cardiac surgeon to meet with and see what they say.

Thanks again to everyone who responded, it's a huge help.

 

[epstns]

I guess I'd prefer to err on the side of aggressive action here. You have family history against you, and you are young and will need to depend upon this heart for (hopefully) many, many years. Best not to damage it unnecessarily now.

That said, and seeing that you are in Long Island, I would opt for at least a second opinion, if not a complete change to a new cardio. I went through something a bit like this when I was first diagnosed. The cardio I was seeing wanted to treat me the same way he treated all of his octogenarian patients, but I was then only in my early 50's. Needless to say, I rejected his treatment plan, fired him and sought out a cardio who had a practice that dealt with valve issues among younger patients. He understood my desire to keep up a gym and running routine, and treated accordingly. 13 years (and a valve) later, I am still seeing his successor and am happy with the plans we have followed.

That's what I would do. Even if you like the current cardio, it sounds like you are not happy with his treatment plans. There are many cardio's out there - find one who will treat you as you want to be treated.

 

[Archer8]

I'm of the same thought process, I know I"m going to need this surgery sooner rather than later. My wife and I were just married last year, I'd like to have this whole process behind me when we look into buying a home and having children. The last thing I would want is to NEED the surgery with a new home or a new baby on the way.

I just had an MRI at the hospital I work at, and I at least now know I have no coarctation. The maximum diameter of my aorta is about 4.4 to 4.5 cm. My wife's open enrollment is in February so my plan is to add myself to her health insurance policy and then start shopping around for a cardiothoracic surgeon. Being from Long Island, and with NYC right next door, there are quite a few options. Does anyone have any recommendations for a surgeon that has experience dealing with younger patients like myself? I'm getting the feeling that most cardiologists deal with the older population and I want to find one who understands my specific circumstances.

Thank you all again for the help, it means a lot.

 

[dick0236]

............ I'm getting the feeling that most cardiologists deal with the older population and I want to find one who understands my specific circumstances.
.

LOL, my experience is quite the opposite. I have a hard time finding one OLD enough to have experience with this OLD valve I am packing around. The newer breed of cardios seem to be a little uncomfortable when confronted with a valve technology that gets little mention in todays medical textbooks.

I agree that IF surgery is needed......get it done sooner rather than later, but not too soon and certainly not too late.....and then go on with your life.

 

[Patsman07]

Hi, Im currently 14 weeks post op. I was told to go for surgery over a year and a half ago but I didn't want to because I had no real symptoms and I was still playing sport. My Left Ventricle was 6.4 at that stage and I got a second opinion from another cardiologist who said I could wait as the enlargement only becomes irreversible at 7.5. A year later my Left Ventricle was 7.4 so was referred for surgery. In retrospect I am glad I put the surgery off for the year although I became extremely anxious after I was told that the ventricle was 7.4 and I felt like that for 3 months waiting for my surgery.

If your cardiologist is telling you that you don't need surgery yet and if your able to believe that without fretting too much then I would try putting your heart issues to the back of your mind and get on with enjoying your life. I also had regurgitation-it can't lead to a sudden death, unlike stenosis, so don't worry on that front. Regurgitation manifests itself in a slow progressive decline, not a sudden one.

 

[Patsman07]

Hi, Im currently 14 weeks post op. I was told to go for surgery over a year and a half ago but I didn't want to because I had no real symptoms and I was still playing sport. My Left Ventricle was 6.4 at that stage and I got a second opinion from another cardiologist who said I could wait as the enlargement only becomes irreversible at 7.5. A year later my Left Ventricle was 7.4 so was referred for surgery. In retrospect I am glad I put the surgery off for the year although I became extremely anxious after I was told that the ventricle was 7.4 and I felt like that for 3 months waiting for my surgery.

If your cardiologist is telling you that you don't need surgery yet and if your able to believe that without fretting too much then I would try putting your heart issues to the back of your mind and get on with enjoying your life. I also had regurgitation-it can't lead to a sudden death, unlike stenosis, so don't worry on that front. Regurgitation manifests itself in a slow progressive decline, not a sudden one.

 

[MrsBray]

Hi there! Re: caffeine.... For about a year leading up to surgery I was super-sensitive to caffeine. I used to down Mountain Dew and coffee like it was water! Slowly I began to notice I was having more trouble getting to sleep, and a caffeinated drink made me jittery. Post op, I thouroughly enjoyed my first cup of regular coffee, and now am able to enjoy a second cup in the mid-afternoon slumptime with no effects. Decaf *tea* on the other hand, affects me like I mainlined Jolt. Also, artificial sweeeteners still give me palpitations. Which is ok with me, 'cause that s&*t will kill you anyway.
-Meredith

 

[Archer8]

Thank you all again for taking the time to read and respond. Not too many people I can talk to about this so it's nice to have somewhere to hear about everyone's experiences and opinions.

I just got back from a trip up to Maine for a friends wedding. The hotel we were staying at was a ski resort, so it's at the top of a mountain (I'm from Long Island, so basically sea level). Has anyone noticed issues when at elevation? I had two episodes of shortness of breath, one of which was serious enough to bring me to the hospital. I've never had anything like that happen before, but it's scary as hell. Hands, feet, and lips went numb and tingley, apparently the veins in my arms were constricted so it took them 7 sticks to get an IV in (I usually have very apparent veins being a thin guy, I've never had anyone take more than 2 attempts).

I'm getting an echo later this week, but I'm pretty afraid of this happening again in the mean time. I can't see how my heart could get that bad that quickly so I think it had to have been due to the elevation. I just wanted to check and see if anybody else had noticed problems at high elevations, but were resolved when they got back down.

 

[tom in MO]

The ER staff should have been able to tell if your problem was due to the BAV or not. What did they say? With my BAV I did not notice any altitude problems other than what would be expected (a little headache for the 24-48 hours from going sea level to Albequerque). I've spent a lot of time in Me, NH and VT and don't think Maine has any "mountains" big enough to cause altitude sickness. I have been to the top of Mt. Washington more than once and never seen any one with altitude problems and that's the highes point in NE.

I would suggest you report the symptoms to your cardiologist. A BAV will take years to reach the point where surgery is indicated, however per my cardio and surgeon, it can progress much quicker after a certain point. That is why you get echos every year and then one every 6 months and then they say time to fix it within the next few months.

 

[Archer8]

They didn't really know what to say at the ER, basically told me to speak to my cardiologist. It was a tiny little hospital with only 5 beds, all I got was an ECG (which by then was normal, in the ambulance I had sinus tachycardia and indications for possible ischemia). The ambulance ride was about 45 minutes, and it took them about 35 minutes to get to me in the first place so by the time I had gotten to the ER I had been getting oxygen for over an hour, I was feeling much better.

I thought it was strange too, I was only 3,000 feet up in elevation. The first incident happened after getting a tour of the wedding venue which had quite a few staircases and then walking up a hill to the car. The second (and worse) incident woke me up in the middle of the night, but I had a few glasses of wine at the wedding and was dehydrated which always gives me the worst palpitations.

 

[Archer8]

Hey Everyone,

Just wanted to update you guys, I met with a cardiac surgeon this evening. Looks like I'm definitely going to need the valve replacement and possibly an aortic root graft. He would have done it in 10 days but I asked to wait until after Thanksgiving so I can truly gorge myself with delicious food without any limitations.

I'm sure I'll have plenty of questions for you people in the next couple weeks, but first I need to decide if I go with a prosthetic or mechanical valve. I'm leaning towards mechanical but we'll see. Thanks in advance for all your help and support.

 

[dick0236]

At age 27 the question becomes...."how many reops can I tolerate?". As another who got a valve replacement at a young age, I have seldom regretted having a mechanical valve implanted........although I had no idea it REALY would last a lifetime. My valve has had minimal effect on my life or lifestyle and ACT is not the "bogey man" many folks think. One thing is sure....the valve replacement has DOUBLED my live expectancy from less than age 40 to age ???

Good luck to you and stay in touch after your surgery.