HealingWell
Search Close Search
☰

Heart fistula

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/19/2005 1:14 PM (GMT 0)
My youngest daughter has an enlarged right coronary artery with a fistula that sends blood to the wrong part of her heart.  We think she was probably not born with it because it never surfaced until junior high.  (Actually after a very severe case of mono)  She's had three unsuccessful procedures where doctors tried to coil occlude the fistula via heart cath.  The last attempt was almost 5 years ago.  After telling us that it would only get worse, not better, they're now saying she'd be better off not fooling with it again.  The last procedure took 8 hrs and they inserted 7 caths to work through.  She is now 19 years old and scared to death to go back to a cardiologist.  They originally told us that if she was ever able to get insurance due to this condition, it would cost a fortune.  Since she's a full-time student she's still on our policy.  We live in TN and the first 2 procedures were done here.  We took her to TX for the last.  Anyone familiar with this type of problem?   We were told that opened heart surgery was to be our last option but then they dismissed us after the last failed attempt and sent us back to TN not knowing what to do.  confused
Posted 8/19/2005 5:49 PM (GMT 0)
As one who is uninsurable and without health insurance, I can certainly see your urgency in trying to get this taken care of while your daughter is still insured. However, also as one who was told at 27 that I would need OHS within 5 years and didn't do it, (still haven't, and I'm 54 now) I can also see your daughter's point of view.
My personal opinion is that it's time for another opinion. The past doctor has essentially fired him/herself by dismissing you with no follow up.
Since this sounds like a difficult situation, what I would do if I were you, is to go to one of the renowned heart hospitals for another opinion and diagnosis, course of treatment, etc. It would be a little expensive to leave your immediate area (travel, hotel, etc) but IMO it would be well worth it. And do this while you still have coverage. As far as your daughter and her fears are concerned, I sure don't blame her, but this doesn't mean that anyone is necessarily going to suggest surgery now - and even if they did, the very good heart hospitals have more minimally invasive treatments, and MUCH more experience and expertise than anywhere else.
What I would not do is wait and do nothing. Her only option after her coverage under your policy runs out would probably be a teaching hospital, and her situation sounds too complex for that to be the best solution.
What I am having to do, since I am symptomatic now (rheumatic heart disease) is to go to the teaching hospital for tests, and take the test results to a cardio at the 'famous heart hospital' for a consultation and diagnositics. They don't require a referral - you can self-refer, and they do not require insurance - in other words, they accept cash, but then there is only so far I can go with them for that reason. I haven't had my first consult with them yet, so I'll have to see what they suggest and what happens from there...(and tell your daughter I'm scared to death to go back to a cardiologist too! - or don't tell her! lol)
I hope you'll get ideas from others here too!
You have my best wishes - keep us posted.
Oona
Posted 8/19/2005 6:52 PM (GMT 0)
Yes please get a second opion I also have no health insurance and have a great CArdio Doctor at my Hospitial I go to and it is a Teaching hospitial too and  does alot of open heart surgeires too. Yes all of us are scared adn want what is beast for us but I do hope yu can find a doctor that is  familiar with yuor daughters condition and walk you both through the process on what he or she wants to do for the course of treatment. All of us have uor fears and have to see many many Dopctors but for me I wouldnot  trade my cardio at all I feel so comfortable with him. I have had 2 heart attachs, congestive heart failure right sided, anginia, and other health problems for if they act up so does my heart so I am in good hands. i am hopeing others can come along here too and offer you good advice too.

Heidi

Posted 8/19/2005 7:06 PM (GMT 0)

Hi and Welcome to HealingWell, Leighanne!! yeah

I'm sorry to hear about your daughter's heart health issues, it does sound pretty complicated and since none of us are Dr.'s here, we can only offer our opinions of things.

This must really be very stressful for you as well!  I have 2 children myself with the youngest being a daughter of 17 - I can only imagine how hard this is on you.

I'm going to list a couple of links here that are extremely well known and reputable.  Please check these out and see if any of this rings a bell or gives you a clue as to what might be happening with your daughter - have her read them as well. 

You've gotten a lot of good advice above and I wholeheartedly agree that getting a second opinion, or 3rd as the case may be...could be extremely useful for your daughter.

Hugs, Teri tongue

http://www.merck.com/mmhe/sec03/ch020/ch020b.html?qt=Heart%20Fistula&alt=sh

http://www.merck.com/mmhe/sec03/ch036/ch036e.html?qt=Heart%20Fistula&alt=sh

Posted 8/19/2005 10:59 PM (GMT 0)
You guys are great!  Thank you all so much for the feedback.  I did check out the Merck Manual sites you recommended and they were very informative.  We are in the process of trying to find a good cardiologist for another opinion.  What are the best 2 or 3 heart hospitals in the US?  We are fortunate to have access to an RV so hotel expense won't be bad but gas prices horrible!  The last cath she had was out-of-state at a hospital that was supposed to specialize in coil occlusions.  I'm from TN and the doctor's here haven't done much in that field.  She did have a radio frequency ablation here because they caused an arrhythmia during the first procedure.  Thanks again for the concern and support.  I wish I'd found this site long ago!
Posted 8/19/2005 11:08 PM (GMT 0)
Hi Leighanne,

What a thing to be going through! I'm sure everyone here would agree that the Cleveland Clinic and Mayo hospitals are probably top notch. I'm not sure how you find doctors at these hospitals that have direct experience with the issue you are dealing with, but I'm sure they have a directory online or over the phone where they can link you with the experts.

Good luck with this, you and your daughter (and family) are in my thoughts!

Maya
Posted 8/19/2005 11:40 PM (GMT 0)
Thanks Maya!  I'll check out both of these hospitals.  Your reply is very much appreciated!

Posted 8/19/2005 11:54 PM (GMT 0)
Leighanne, I'm going to one of the FL Cleveland Clinics, but you might be closer to the one in Cleveland. Also, I wouldn't suggest coming down here during hurricane season in an RV! I would probably call them and ask who to see. You can just refer yourself, that's what I did. BTW, I had never heard of an 8 hour cath before, using 7 caths. No wonder your daughter is afraid of going back, but I doubt that would happen again.
Best wishes,
Oona
Posted 8/20/2005 12:34 AM (GMT 0)

Where in FL is the CLeveland Clinic?  We love FL and go as often as we can get away.  We do pay close attention to tropical storms though.  Remember the girl on the gulf coast that was killed by a shark earlier this summer?  We had left the same campground an hour before it happened.  Thank goodness my husband wasn't in the water at the time because he loves to get in the ocean.

Posted 8/20/2005 1:21 AM (GMT 0)
Austin Heart Hospitial in Austin Texas is the best one that I know of and one of our mods has gone their and really likes it I am sure she can tell you more about it but if it were my daughter I would go to Austin Heart. No if and or butts.

Heidi

Posted 8/20/2005 1:59 AM (GMT 0)

Leighanne,

Here are some online links to check out...these are sites that I use for info and perhaps you'd find some help there as well. 

There are so many wonderful hospitals across the country to choose from and everyone has their favorites - it really boils down to who specializes in this particular treatment.  So hopefully the following may guide you.  

Best Wishes and Hugs, Teri   tongue

http://www.clevelandclinic.org/

http://www.texasheartinstitute.org/index.html

http://www.mayoclinic.org/patientinfo/

Posted 8/21/2005 12:29 AM (GMT 0)
Thanks to everyone!  I'll check out all of the sites you've recommended.  The last procedure she underwent was at the Texas Children's Hospital.  I'll be interested in finding out more about Austin.  If we ever get everyone in the family tended to perhaps we'll return to some sort of normality again.

Posted 8/21/2005 12:33 AM (GMT 0)
My cardio is from the Heart Hospital of Austin and I love them!
Hugs, Teri :)
✚ New Topic ✚ Reply