Feeling lost and unheard

[Harpoon]

I haven't heard mention of a visit with a cardiologist yet here....


PCP's are good and all for a great many things but frankly, they can not adequately treat a patient with a heart condition such as an bicuspid aortic valve.

You need to be seen by a cardiologist on a regular basis, preferably a pediatric cardiologist because they specialise in congenital heart defects and your biscuspid valve is just that, a congenital heart defect, something you were born with.


Cardiologists are trained to deal with conditions like yours all the time. That's their "bread and butter." They've seen just about every possible symptom related to your condition, they've seen the progression from being fairly healthy to near death. They know how the condition "behaves" and how it changes over time, how it reacts to certain medications and how it's treated. They'll follow you throughout and know exactly what to do at every turn.


The best a PCP can do is scratch his head and try prescribing some "heart med" like digoxin or amiodarone...

If he's unwilling to refer you to a cardiologist.

And be aware, not all cardiologists are the same. Most deal with adults who have acquired heart disease, that is some condition that developed and progressed long after they've been born.

You have something you were born with and that's a very different situation to deal with, you should try and find a pediatric cardiologist who also sees adult patients (most do) with congenital defects.


By the way, I know exactly the symptoms you've been feeling and how much of an effect that can have on your life, your mental status, and feeling of self.... It's the PITS. It sucks rocks and it was probably the worst time of my life, that I can remember at least (there's a month or so after my valve surgery I can't recall anything from, that's another story)


It all gets better though. I know it can be hard, but a positive attitude is what carries you through the best. It's OK to feel lousy and be upset or depressed about what you're going through, as long as you remember at least once in a while that you WILL make it through this. You're strong enough to overcome what's going on right now and you will get better. =)


Go find yourself a new primary physician and get him or her to refer you to a good pediatric cardiologist right away.

Take care of yourself.

 

[Bryan B]

Harpoon,

Several (almost everyone) that posted here suggested that Lori see a cardiologist.

As for seeing a pediatric cardiologist, that is a very good point. And if you are having surgery to repair a congenital defect it's a good idea to get a pediatric cardiac surgen. I'm having my VSD repaired along with AVR and have selected a pediatric surgeon.

 

[Harpoon]

I know, but it's worth repeating and adding the benefits of a peds card.

And peds surgeon too if and when that becomes neccesary.


I'm not sure all folks with bicuspid valves end up requiring surgery... I dunno.

I've heard it can be something you can live a normal life with, depending on the severity of the condition and other "extenuating circumstances"....



Any heart condition you may have been born with, even if it's not discovered until after you've turned 50 or 60, should be looked over by a pediatric cardiologist. They're the best people to treat such a condition because mot adult cardiologists just don't see such things on a regular basis, if at all once they get out of med school....

 

[Bryan B]

I imagine some go through life without ever knowing they have one. If I had not known about my condition I would have never known it from any symptoms until recently.

I grew up in a military family so my VSD was detected at 2 weeks of age and I was followed closely. When I had a cath at age 10 they said I would probably never need surgery because the hole was closing on it's own. Then at age 18 the hole had become quite small (but never closed) and that caused suction which in turn caused a prolapse of one of the leaflets on my AV. They considered doing surgery at that time but decided to wait. I made it another 25yrs, now the wait is over.

 

[Abbanabba]

Hi Lori,

Sorry to see you are having problems being taken seriously - especially in light of the fact that you do have a heart condition. I'm going through pretty much exactly the same problems as you at the moment (..you might want to check my thread "The good news... and the bad", if you haven't read it already..) and after some advice from someone else here, am waiting to see a PH specialist to find out if pulmonary hypertension is the cause of all my symptoms (..and since I just found out it was diagnosed 2 years ago, I know what I'm putting my money on!!..).

The trouble with so many doctors is they assume that because they've spent 7-10yrs in medical school, they know your body better than you. THEY ARE WRONG!!! You have to remind them that you have spent your ENTIRE LIFE in your body and know when something is not right. My symptoms were also put down to stress, depression and anxiety, but aside from not being an anxious type person, I know how I react to stress, I know how I react to depression, and I know how I react to anxiety - and what causes it. Nearly falling over each time I stand up or bend over, or not being able to climb half a dozen steps, or needing to take deep "catch up" breaths when I've just been sitting on the couch, or having the colour completely drain from my face upon exertion, ARE NOT the ways my body reacts to stress, depression and anxiety.

Like Bryan, I'm a bit sensitive about all this at the moment (..and was also told it was my age.... although I was only just 30 at the time, didn't smoke and have always been quite fit and healthy..), so forgive my tirade. I can only echo what everyone else has said: get a second opinion, see a cardio who specialises in your type of problem, and DON'T TAKE NO FOR AN ANSWER.

Keep us posted on how you go, and good luck!

Anna : )