plea for help

[jholl]

I have a son who went to the internist for exhaustion issues. He was sent to the cardiologist after a heart murmur was detected. He has a small ASD and borderline tricuspid valve prolapse. He is 22 and so far has not sustained any damage to his heart. He has been plagued by migraines for about ten years. The cardiologist who looked at the echo cardiogram with the agitated saline test as well, said there was nothing to do at this time.
I am concerned that he will be living under the gun for stroke, enlargement of his heart or a prolapsed valve leading to a heart attack. I feel we have been told to more or less forget it. How do you do that? I am at a loss as to what to do. Any guidance, suggestions, advice etc. would be most appreciated. I do not want to encourage surgery, but wow it seems a heavy burden for a young man to bear. He is mid way between his bachelor's and master's degrees.
Thanks, I hope to learn a great deal from those of you who have been there, done that and can advise me.

 

[Nancy jane]

You will b hearing from so many good & knowledgable folks very soon. Im only up this late because my surgery is Thursday & I have cath Wednesday. Am

I sure don't have any answers for you but i sure as heck know I would get. Second opinion. That's for sure

Best to you & a I say you'll be hearing from folks soon. Nancy Jane. AVR2-9 st Louis

 

[neil]

yea agree with nancy jane, a second opinion would be my first port of call, hang in there am sure others will be along soon to give you sum advice,

 

[Ovie]

Agreed. Defiantly get a second opinion, the difference between the 2 cardiologists were miles apart, my second opinion I ended up finding out what was really going on, told me specifics, and told me I needed the surgery, now I'm 2 weeks out from my AVR surgery. My first cardio told me the same things as my second, but didn't mention the urgency of it. I'm 25, and it's most defiantly a scary thing to learn at a young age, so I hope your son is doing alright.

That being said, you'll get better information from the veterans of this site I'm sure, I haven't made the jump quite yet and don't have the years behind me to really relay any knowledgable information, other than my personal experience on the whole second opinion.

Good luck, and welcome.

 

[kfay]

I lived with an ASD for 45 years before it was finally closed. I think it would have been closed much earlier had I gone the the place where I eventually ended up having my surgery done. The bubble test lets them see which direction the blood is flowing through the asd (right to left shunt or vice versa). I think a right to left is worse than the other way around. Maybe he isn't really shunting across the asd. Also, as far as the tricuspid valve, most people who have issues with this valve seem to tolerate it much more so than the other valves.

If you are really concerned about all of this, I would definitely get a second opinion. You may even seek out a clinic with ACHD (adult congenital heart disease) experience since he would have been born with that asd. You can go to http://www.achaheart.org/, which is a group for people with ACHD and they have a list there of all the clinics in the US who have experience with ACHD. If they do decide to close it, hopefully they will be able to use one of the devices that is delivered through a cath vs. heart surgery.

 

[Greg a]

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters, there are many moms , dads . blood brothers and sistzers here all looking to be supportive od a loved one. The best way is to learn as much as you can so ask away, there is a wealth of knowledge here for the future ..... you will prove to be your son's strongest advocate....so yes a secomd opinioan an d ask a LOT of questions here and in the offices of those you encounter


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[Lionheart]

jholl,
You should request a copy of the doctor's notes and a copy of the echocardiogram and any other results from other tests that they did for your son. Maybe his results from those tests are within the acceptable range, but you can provide a copy of those results to another doctor to see if he concurs. Keep a copy for your own records also.

It seems important that your son if showing some symptoms with his exhaustion and migraines. The other thing is that any good cardiologist should take the time to explain exactly what he is measuring and explain when those measurements will be far enough from normal that they think your son will need a more aggressive course of action (like surgery). They other thing they should explain is how often your son should see a cardiologist and what tests he should have to monitor his condition. They should also recommend any restrictions or actions for your son. Finally he should finish his Master's degree and get a good job with good insurance.
Take care,
John

 

[dcc617]

jholl

Welcome. I can't tell you how supportive everyone is. My reaction? ding ding ding......2nd Opinion. I'm not sure how you found the cardiologist but you should ask around for recommendations. My cardiologist even offered to refer me when she diagnosed me. Your insurance most likely covers second opinions. If that's a concern, contact Customer Service on the back of your ID card and check. Be sure to get the name of the person you talked to, date/time, etc.

Best of luck.

 

[dick0236]

Hi jholl. There are several good cardios here in Louisville and, as others have posted, if you, or your son, is uncomfortable with his diagnosis, get a second opinion. I don't know anything about his diagnosis, but most problems like his are "fixable". His young age is a "plus" for him, if or when, the time comes for surgery. I also agree that he should get his Masters and go on with his life....while continuing to be followed by a cardio.

 

[Lynlw]

I lived with an ASD for 45 years before it was finally closed. I think it would have been closed much earlier had I gone the the place where I eventually ended up having my surgery done. The bubble test lets them see which direction the blood is flowing through the asd (right to left shunt or vice versa). I think a right to left is worse than the other way around. Maybe he isn't really shunting across the asd. Also, as far as the tricuspid valve, most people who have issues with this valve seem to tolerate it much more so than the other valves.

If you are really concerned about all of this, I would definitely get a second opinion. You may even seek out a clinic with ACHD (adult congenital heart disease) experience since he would have been born with that asd. You can go to http://www.achaheart.org/, which is a group for people with ACHD and they have a list there of all the clinics in the US who have experience with ACHD. If they do decide to close it, hopefully they will be able to use one of the devices that is delivered through a cath vs. heart surgery.

Hi I agree with everyone who reccomended a second opinion, even if it is to just make you feel better knowing another cardiologist suggested the same thing. I'm not sure what kind of cardiologist saw your son already, BUt I really would make sure the 2nd opinion was from a cardiologist that specializes in Congenital Heart Defects or Adults with CHD as Kim said.
CHD Docs are the ones that have the most experience with ASDs and Tricuspid valves (or really valves on the right side of the heart) as well as much more experience treating paients your sons age. Regular Cardiologist usually have the most experience in aquired heart disease and most of their patients are older people who usually need bypasses.

I can understand a little how you must be feeling my son is 23 and is the one that has had the heart problems/surgeries, but we've known about his since he was a day old, hopefully this will just be something to keep an eye on with yearly check ups.

IS your son interested in joining any online groups? (mine has no interest at this point) if so There is a great forum at the ACHD org Kim gave the link to that has alot of younger people

 

[SusQ]

Absolutely get a second opinion. While this is always important when it comes to something serious with one's health, I feel it is even more important when it is a serious issue and you live in a smaller community. Not to bash small town doctors, but with a smaller community the likelihood that they see cases like your sons is obviously smaller.

While the original opinion may be exactly correct, if it were me/my child, I would feel a lot better having another cardiologist concur.

 

[Sarah_Louise]

Also agree with everyone else, get a second opinion!
Keep us updated,
thinking of you!!
Love Sarah xxxx

 

[Boston Tiger]

I'm on 17 hours after your original post, and see that you have already been given the best advice - seek a second opinion, if only to help your peace of mind. I know it can be scary to get a diagnosis of heart problems, both as a patient and as a father. My son was diagnosed with MVP several years ago, but he doesn't have any regurgitation problems. He's also not showing any symptoms of things worsening, but if he were we wouldn't hesitate to get a second opinion. Good luck!

 

[Superman]

Welcome to the forum. As one who grew up knowing surgery was coming - I can't really relate to leading a "normal" childhood, then finding this out. I can imagine that would be very hard to suddenly find you have something like this after years of never facing any limitations.

However I can give a fair perspective on living with it daily, knowing you'll need surgery, but not knowing when. I was "in the waiting room" since I was an infant until I had my valve replaced two days prior to my 18th birthday. I was not allowed to participate in competitive sports or even in regular gym class. But I did play with the other kids and don't remember being overly concerned or obsessive about something bad happening. In terms of disrupting education - my first surgery was in November of my senior year in high school. We made arrangements with the school regarding materials to be covered, work to be sent home, projects completed, etc. I spent basically the next eight weeks home schooling with the full cooperation of my teachers. Actually ended up being my best semester in high school in terms of marks. I guess I felt the most entrusted with my own education and it was beneficial for me.

I would advise your son to just keep living life, not ignoring the issue, but like a person that will have a long full life. It may not feel like it, but you are much better off knowing. Your son can be monitored now for changes in his condition and when the time is right, be treated accordingly. We live in a time when there are "routine" (for lack of a better word) treatments for most heart issues. I don't pretend it's easy. I've had two OHS's and would really rather not have another one. But I'm here, I have wonderful wife and five great kids. I work and have my faith. Were I born 30 years earlier, I likely wouldn't have lived past my 20th birthday. I'm 39 now, and plan on being 39 for a number of years to come!

 

[Bill B]

Taking a line from Cool Hand Luke, "What we have here is a failure to communicate." If I came out of an appointment with a cardiologist with this many inadequately answered concerns, I would be very disappointed in his/her ability to communicate. I second the calls for a second opinion. I had a rather poor communicator for a cardiologist originally. It took me a few visits before I realized this wasn't working very well. I got another referral and my new cardiologist has been the answer to my prayers. On my last visit, when he was an hour behind schedule and going into his lunch hour, he spent almost an hour with me, for what should have been a routine visit, just sitting there patiently answering my questions in detail. I thanked him profusely for taking the time to set a number of issues to rest. It appears he recognized I needed these issues explored rather than brushed off.

I know how scary it is to get a new diagnosis like this with very little information. It's good to come here for some support, but what you need more than anything is a good doctor.

 

[Paleowoman]

I was 25 when my BAV was discovered after doc hearing a heart murmur. I am now just coming up for replacement in a year or so - I'm 58. That doesn't make it easier, btw, time flies very fast ! Definitely get a second opinion in case the first doc was wrong or to put your mind at rest.

 

[Ovie]

Taking a line from Cool Hand Luke, "What we have here is a failure to communicate." If I came out of an appointment with a cardiologist with this many inadequately answered concerns, I would be very disappointed in his/her ability to communicate. I second the calls for a second opinion. I had a rather poor communicator for a cardiologist originally. It took me a few visits before I realized this wasn't working very well. I got another referral and my new cardiologist has been the answer to my prayers. On my last visit, when he was an hour behind schedule and going into his lunch hour, he spent almost an hour with me, for what should have been a routine visit, just sitting there patiently answering my questions in detail. I thanked him profusely for taking the time to set a number of issues to rest. It appears he recognized I needed these issues explored rather than brushed off.

I know how scary it is to get a new diagnosis like this with very little information. It's good to come here for some support, but what you need more than anything is a good doctor.

It really is remarkable what a second opinion can do. My first Cardio, I walked out with more unanswered questions, than actual answers. I saw a second one, and not only did we chat about what was really happening, he spent almost 2 hours after they were closed going through each frame of pictures of my heart, than brought me in and showed me how my Aortic valve looked, and how it was suppose to. Showed how much more blood was leaking back into the other valve causing my heart to work twice what it's suppose to, etc. the fact that he didn't say "hey I'll look at them tomorrow" or " come back tomorrow" was absolutely uplifting for me. With it came the news of having to get surgery, which made my heart drop, but glad it came from him. Second opinion was the greatest thing to happen during it all. Someone willing to spare their personal time to help me, can't ask for more.

So a second opinion can really change the whole ball game. Also maybe calm the nerves.

 

[ChicagoMammy]

Same as the others said - second opinion. I was diagnosed at age 21 (1999) with Mitral and Aortic Stenosis. I am fairly scientific and interested in my own health. I never understood (was told) how bad my disease was until 7 years later in another hospital in another country. Sure things could have deteriorated a lot in those years but I was given the impression like your son to forget about it and that I might need surgery in my 50s. In 2006 I had my mitral valve replaced at age 28. Hopefully this is not the case for your son, but if it is you obviously want to know about it like you said.

Good luck to both of you.