Passing our heart problems on to our kids

[KatieD]

Two years ago, in between my brother having an emergency mitral valve replacement and my sister MaryC and I having mitral valve repairs, I took my then 8 year old twins in to have their hearts checked out. I probably wouldn?t have done it, even with my family?s history, except that my son had commented several times about symptoms that gave me concern. As it turned out, he was diagnosed with MV prolapse and minimal leakage in the tricuspid valve, just as I have (had). My daughter did not have MVP, but they ?thought? it looked like she ?might? have the beginnings of MVP because one of the leaflets ?looked like? it wanted to billow. The doctor wanted to see them back in a year, but I waited two years.

I took them back yesterday for a two year check-up and the situation is virtually the same. He has, she ?almost has? (although the ?almost? sounds even more ?almost? this time!) a MVP. The doc wants to see them back in two years this time.

I, like most parents, want to do everything I can to watch out for my kids and keep them healthy. Two things I ponder and am concerned about. 1. They?re now marked for life as far as getting medical insurance coverage. There is really nothing I can do about that now. 2. What is the point in getting two year tests done on otherwise healthy children unless they start having symptoms?

 

[ALCapshaw2]

I, like most parents, want to do everything I can to watch out for my kids and keep them healthy. Two things I ponder and am concerned about. 1. They’re now marked for life as far as getting medical insurance coverage. There is really nothing I can do about that now. 2. What is the point in getting two year tests done on otherwise healthy children unless they start having symptoms?

Second Question First -

Symptoms are often NOT predictors of problems, but signs that Damage is being done. Some (many?) of our members reported that they were NOT symptomatic before their surgery (or at least they didn't think so until after their recovery when they noticed they had more energy).

Bottom Line: Diagnostic Testing can spot changes / signs of Valve Disease BEFORE symptoms are recognized.

Insurance Questions -

As we know from this year's political activity, Health Insurance and Universal Health Care are Hot Topics of debate. The problem is how to make Universal Health Care affordable to the country and accessable to all who need it.

Check out the Tax Rates in Countries with Universal Health Care... and complaints about accessability. Access to the Best Doctors / Surgeons seems determined by Referal in most systems. Does this mean that patients would no longer be able to call a desired Doctor or Surgeon and ask him to examine them?

'AL Capshaw'

 

[kfay]

Katie, I can appreciate your thoughts and concerns since I am in the process of having my 15 yr old daughter's heart checked out as well. As far as the insurance thing for your children, as long as they are aware of it and the ramifications of not always maintaining it, they will be ok. I have had to think about this issue for all of my life, having been diagnosed at birth with my heart defect. Even as a generally irresponsible 20 something, I always made sure I had a job that offered insurance to me.

Al, as far as your comments about universal health care, I agree. As an American having lived in the UK for 3.5 years, I had the unfortunate experience of having to use the NHS. I delivered a baby there and was hospitalized twice for heart related things. At the risk of offending our overseas counterparts, from my personal experience, it doesn't even begin to compare to the care that I have received here. Every one who thinks these systems are "free" are kidding themselves. More pay came out of my husbands check there to fund that than we have ever paid for health insurance here. We also had a french employee and 55% of his pay was taken out for taxes and as the empolyer, we had to match that at 50%! Obviously not all of that was for healthcare, but can you imagine if that happened here? The only good thing about those systems as far as I'm concerned is that everyone can get the same care (for better or worse). I know if we go there in this country, it will be a nightmare. There has to be a happy medium somewhere, I just don't know what that is.

 

[KatieD]

As we know from this year's political activity, Health Insurance and Universal Health Care are Hot Topics of debate. The problem is how to make Universal Health Care affordable to the country and accessable to all who need it.
'AL Capshaw'

Al,

I don't intend for my question about how closely to monitor my kids' hearts to start a political debate on insurance.

 

[Adrienne]

Here is a link for the World Health Organization which ranks countries as to their health care.

http://www.photius.com/rankings/healthranks.html

From what I have heard, France and Italy combine the public and private systems in a way that seems to work.

Sorry, I know this thread was not really about that subject.

 

[KristyW]

Two things I ponder and am concerned about. 1. They?re now marked for life as far as getting medical insurance coverage. There is really nothing I can do about that now. 2. What is the point in getting two year tests done on otherwise healthy children unless they start having symptoms?

Katie,

Al answered question #2 quite well.

As far as question #1 kfay did a good job with that.

Right now as long as you have had continuous medical insurance coverage, your children are ok. The problem is when insurance lapses...then an insurance company can exclude preexisting conditions for a predetermined amount of time with a group plan. If your children needed individual coverage (not connected to an employer)then the problems multiply. BUT I've seen many of the questionaires state "Have you had or sought TREATMENT for the following conditions..." with treatment being the operative word. I'm in the process of trying to get my self-employed husband insured as he has a failing hip. I can't take him to the Dr. for it until I have insuance on him as that would count as a pre-existing condition. Aye-carrumba!

Your children MAY have difficulties getting life insurance though.

 

[aussigal]

I have 2 sons with a BAV which was found after I learnt I had it and that the condition was heritable.

The insurance aspect does not worry me at all. They are covered under our health insurance for a long time and then the cover will transfer to them when they leave our care.

We regualrly have checkups just to keep an eye on their condition to make sure it hasn't changed. I am hoping that this will become a life-long habit for them once they are adults and we wont have to remind them to get checked.

Thats it, simple. It doesn't rule or ruin or lives its just a small part of it.

 

[offwego]

What tests did they do on the children? Echo?

 

[Lisa in Katy]

I've had a heart problem since I was 14. I've never had trouble getting health insurance or life insurance because I get it through my employer. As long as my husband or I work for a company that has group coverage, I'm fine for health insurance. I get as much life insurance as I can without a physical - 4x my salary. It's certainly enough to bury me and give my family some extra. I won't get started on Universal Health Care, but I'm against it. I'm not sure what that ranking is really based on, but people come from around the world to the US for healthcare. It can't be all bad.

Since my problem came from disease, it's not really considered genetic. However, RF does seem to run in families. My father and aunt both had it, although not as bad as mine. I have always been adamant about insisting on throat cultures whenever my kids complained of a scratchy or sore throat, or even if they had an unexplained fever.

I would think that every 2 years is acceptable. As someone else said, symptoms can be a sign that things are bad. It's better to catch it when things aren't that bad. I've also known kids who have grown out of their heart problems. My dad had heart damage from RF that was detectable up until the time he was about 13-14. Then it apparently healed.

 

[Bonzo Dog]

Interesting thread. All my kids had a specialist cardiac ultrasound while in the womb to determine if they had inherited their Dad's bad heart gene.

 

[Duff Man]

When I was born in 83 they knew immediately I had a BAV, Doc made a big deal out of it to my parents and demanded I have a yearly echo. I don't know if they were ahead of their time with technology or what.

I can say that the yearly echocardiograms and stuff like that caused more anxiety for me than anything because my valve function never changed and it lead me to believe I was somehow broken or defective. I believe my gradient is still the same today depending on who does the echo. In the end a CT scan found my issue but only because I went to the doctors for chest pain. There was a point where mild hypertrophy was discovered because of an EKG, but that particular EKG wasn't routine. It was in response to HTN measurements.

If you're asking for my opinion, I would just keep it at two years per echo. The echos can't hurt you physically, so I say why not if there's a valve issue. I personally wouldn't make a big deal out of it to the child and just keep track of when the two years is up. I'd also be weary of any symptoms, but I wouldn't ask direct questions about the heart or even remind the child about the heart issue. Insurance or money should really be the last consideration when it comes to anyone's health, but unfortunately it's not that way.

FWIW, some people go in for an echo every three years if the function is demonstrably stable.

Just my two cents.

 

[Alistair]

I personally wouldn't make a big deal out of it to the child and just keep track of when the two years is up. I'd also be weary of any symptoms, but I wouldn't ask direct questions about the heart or even remind the child about the heart issue.

Exactly right AaronJ. This was the advise my parents received upon my diagnoses in 1966. From that point on, I was aware of the situation but was never limited or treated any different than my brother or other children.

At 17, my Parents had me examined one last time before being removed from their Insurance. Prior to this, it was referred to simply as a heart murmur. After this exam, it was given the label bicuspid aorta.

Over the years, I had myself checked every 3 to 5 years. Never had symptoms. My last exam in 2001, I had my first TEE. The cardiologist told me the sound was worse than the actual situation. He went on to explain that there is an optimum window of opportunity for valve replacement and to simply be aware of any symptoms and act accordingly.

This year, those symptoms manifested and I acted quickly. I had 46 otherwise healthy years with a bicuspid aorta and now look forward to 46 more healthy years with my new mechanical St. Jude valve.

I have never limited myself nor do I plan to.

 

[KatieD]

Thanks for your responses. They both had an EKG and an echo. The EKGs were both normal.

I think the two year testing maybe makes sense for my son, but I may let it go to three years for my daughter. The doctor probably won't like it, but she'll get over it. I was going to go longer on my daughter this time, but when they figured out my son had an appointment the office called and said the doctor wanted to see her, too, so I went ahead and made the appointment.

On another note, I took my miniature poodle who is about 12 years old to the vet yesterday for his annual shots and to ask the vet about this bad cough he has. I was totally shocked when the vet told me he thinks he has heart disease! I have to go back on Monday to get his blood drawn because they couldn't ship it to the lab on the week-end. The vet listened to his heart and said he definitely has a murmur. Now I know HE can't have gotten that from me!

 

[Andrew'sMom]

I think knowing and watching is best ... rather than having to deal with something once symptoms and possibly permanent damage have occurred. As one doctor once told me, it's much better to know and watch and repair electively as opposed to emergently. We have never had a problem with health insurance being denied due to Andrew's health issues, and we have had to switch several times over the course of his 7 years due to job/insurance changes! I also have another son with BAV.
Best wishes for many long years before your children will need intervention, if ever.

 

[aussigal]

What tests did they do on the children? Echo?

Yeah, so far the boys have had 3 echoes each. They were seen by my Cardio and a childrens cardio as well. My Cardio is an "echo expert" and has evaluated their echoes and noted that one of the boys has a mild coarctation of the aorta and the other one has a mildly dialated aorta. We are watching these and if anything changes they will go and get those 64 slice CT scans. They also had all their pulses , BP and stuff checked and have been evauluated by the genetic clinic for Marfans. Thats about all I can remember.
None of the tests were scary and the kids are fine with it and dont seem worried.

 

[Trinityheart8891]

hey

as an adult congenital pt who is out there advocating for myself first thing (in my opinion) is first I totally believe that they should be followed every 2 years, because disease can progress without symptoms and its ideal to get to a bad valve before it causes damage, for instance, a bad mitral valve can cause enlargement in the left atrium, which in turn can cause atrial fibrillation, if the valve is kept up with and things are noted before they turn bad then you can catch it before the valve causes any permanent damage, and your kids may not even have to endure the symptoms. in other words, knowing about the progression of the disease is priceless. as far as this relates to them, mentally and emotionally, treat them normally, but dont treat the whole disease thing like a big white elephant, they know that there's something wrong with them, trying to convince them that there isnt will just confuse them, just treat it non chalantly (for the longest time I felt like talking about my heart in my household was taboo, this is what I am trying to communicate) if they want to talk about it have honest conversations with them about it, thats all it takes (in my oppinion)

second of all, like someone else mentioned, as long as their coverage doesnt lapse, they shouldnt have any issues, I have been dealing with the insurance stuff myself also, there are ways through the insurance companies little tactics, dont let that scare you. . .

Morgan

 

[ALCapshaw2]

hey

as an adult congenital pt who is out there advocating for myself first thing (in my opinion) is first I totally believe that they should be followed every 2 years, because disease can progress without symptoms and its ideal to get to a bad valve before it causes damage, for instance, a bad mitral valve can cause enlargement in the left atrium, which in turn can cause atrial fibrillation, if the valve is kept up with and things are noted before they turn bad then you can catch it before the valve causes any permanent damage, and your kids may not even have to endure the symptoms. in other words, knowing about the progression of the disease is priceless. as far as this relates to them, mentally and emotionally, treat them normally, but dont treat the whole disease thing like a big white elephant, they know that there's something wrong with them, trying to convince them that there isnt will just confuse them, just treat it non chalantly (for the longest time I felt like talking about my heart in my household was taboo, this is what I am trying to communicate) if they want to talk about it have honest conversations with them about it, thats all it takes (in my oppinion)

second of all, like someone else mentioned, as long as their coverage doesnt lapse, they shouldnt have any issues, I have been dealing with the insurance stuff myself also, there are ways through the insurance companies little tactics, dont let that scare you. . .

Morgan

Well Said Morgan, from your lifetime of personal experience.

 

[Marty]

Katie, I had MVP all my life. I was able to serve in WW11, go through school, and work hard and it didn't require surgery till I was 72- 10 years ago. I don't know how helpful frequent testing is. They used to say don't act on MVP until you develop symptoms. Most people with MVP never need surgery. However I think a good physical exam every year or two is OK. They might pick up a change in the murmur which would then lead to echocardiogram, to rule out significant regurg.