Adults with congenital defects - do you see a pediatric or regular cardiologist

[LL_beanie]

Question for adults who are living with congenital defects.

I was born with Tetralogy of Fallot and an absent pulmonary valve. 1st OHS in 1988 (I was 14), fixed VSD and inserted St. Jude mech valve in pulmonic position.

21 yrs later, pulmonary stenosis, right ventricular hypertrophy, and the St. Jude valve was stuck open (bc of the stenosis and other congenital reasons). No major problems ever in my recovery.

2nd OHS, Aug. 2009, replaced St. Jude with On-X mech valve in pulmonic position, cut muscle away from right vent., and opened right vent. outflow tract. Recover was good for about 4 months, walking every day, losing weight, feeling good (other than normal pains associated with OHS, but since it was my 2nd one, I knew what cracked ribs already felt like and didn't mind the sound of the ticking).

Around Feb/Mar 2010, health started to go downhill. Been tested, beta blockers, stress test, and am on cardiac monitor for 30 days (actually 10 to go). But I am getting weaker, constant fatigue, extreme shortness of breath. Have been in and out of dr's offices but no definitive conclusion.

I have gone downhill in the past 2 months to the point where I am as tired now as I was before my first surgery, when my fingers were turning blue and I was at risk for having a major heart attack.

I felt better 1 month after my 2009 surgery than I do now. it worries me.

My present cardiologist will be out for a will due to personal reasons, but I've been seeing him for many years, and he was referred to me by my pediatric cardiologist. He's a great doc, and the surgeons, and the arrhythmia specialist are all top notch, high rankings. But I will have to find another regular cardiologist.

Have adults who's had surgeries (single multiple) due to congenital defects see pediatric cardiologists or do you have a regular cardio? Any suggestions in the New Orleans/Baton Rouge area is helpful. It's likely that I'll stay with the cardio group I see now, but I don't know if I should ask to see a specialist in pediatrics. Before my 2009 valve replacement, my surgeon asked if I was a patient at the Children's Hospital since they work with adults who have congenital defects.

But I don't know if it would be better to have a regular cardiologist or a pediatric one. Advice?

 

[kfay]

Sorry to hear of your current problems. My local cardio is a pediatric cardiologist, however, he does run an adult congenital clinic a couple days a month. I also go to the Mayo clinic and I see a cardio there that specializes in ACHD.

I'm sorry, but I can't help you with any recommendations in La, however, if you visit a support site for Adults with congenital heart defects, they have a directory of the ACHD clinics in the US (http://achaheart.org/for_members/clinicdirectory/index.php). You'll have to join (free) to view the directory. There are also a lot of other people on there with TOF, you might find it helpful to compare notes with them.

Kim

 

[nate_c]

My valve problem was discovered when I was 11 and contracted rheumatic fever. At the time, everyone assumed that the valve problem had been caused by the rheumatic fever, but it turned out when I had AVR recently and they actually saw the valve that I actually had a rare congenital heart defect (not BAV, don't know if it has a specific name). The RF may not have made any difference at all. In any case, I saw a pediatric cardiologist for most of my childhood. Switched to a regular cardiologist around 19 or 20, I think, and everyone seemed to think this was the correct progression. The only difference I noticed in the switch was that the regular cardiologist was more accustomed to dealing with much older patients (I'm in my mid-30s) whose conditions tended to be more lifestyle related, whereas the ped cardiologists, for obvious reasons, were much more focused on things like rheumatic fever, congenital heart defects, etc.

 

[Diane]

LL,
I also have TOF. Please check out the Adult Congenital Heart Association (ACHA) at www.achaheart.org. I have to agree with Kim.....you should definitely seek out a cardiologist that specializes in ACHD. The American College of Cardiology now recognizes ACHD as a subspecialty of cardiology. In 2000 the ACC set out some guidelines for the care of adults living with CHD at their annual Bethesda conference. The full text of that Bethesda report is available on ACHA's website. You should definitely read the full text when you have a chance but what is most important to you right now is that TOF is considered a moderately complex congenital heart defect and the recommendations are that you be under the care of an ACHD doc.

It is not unusual to have to travel to see an ACHD cardiologist but they will usually partner with a local cardiologist in your area to help ease the burden of traveling when possible. I have to travel about 3 hours to see my ACHD cardiologist. The first year I had to go see the ACHD doc several times while we were sorting things out but now I only have to go once a year for a checkup unless I have some problem. I have a local doc here that is just a "regular" adult cardiologist but he works with my ACHD cardiologist to insure that I have appropriate care on a local level year round. As Nate pointed out, the "regular" adult cardiologists are used to dealing with a different patient population...those with coronary artery disease. They just really do not know how to deal with the nuances of our heart's different anatomy. In fact, my local cardiologist was telling me that the average "regular" adult cardiologist only has approx 4 hours of training in congenital heart defects!

For so many years, medical technology was just focused on getting us CHD patients to survive. There wasn't really a lot of thought given to what they were going to do with us once we started surviving. But now that we are surviving and have started to age, they are finding that we are having problems that are unique in that they are directly related to our CHD from decades before.

Many times ACHD patients are misdiagnosed in their community by their regular adult cardiologists. Here is my story: Before I knew that I should have an ACHD doc, my internist and my "regular" adult cardiologist diagnosed me with pulmonary hypertension so I went to a PH specialist at a teaching hospital for an evaluation. The PH specialist called a pediatric cardiologist in on my case to assist in performing a heart cath. When the pediatric cardiologist saw the case, he suggested cancelling the heart cath and sending me to their newly-formed ACHD clinic for an evaluation instead. After the evaluation by the ACHD doc, it turned out that I didn't have PH at all....what I had was TOF and I needed to have my pulmonary valve replaced!

Please let me know if you have more questions....I am happy to help!

~Diane

 

[Debbrn]

I have a local peds cardio that I see, but I do not rely on him for much. I see an adult congenital heart specialist for any major decisions. Changing to an adult congenital doc has been the best thing that I ever did. My doc is an adult cardio, but trained in congenital heart disease.

Debbie

 

[Lynlw]

My 22 year old son sees his ped card and an Adults with CHD card. As others have said, regular adults cardiologist really don't have training in Complex CHD, or people who've had surgeries since childhood. My personal opinion, IF at all possible, if you have to travel for your Adult w/ CHD cardiologist, I would have a ped card as the local doctor and not an Adult card, whose main patients and experience are in CABG patients and some valves. Complex CHD involves so much more, so the more knowledge and experience the doctors has with CHD patients the better.
Like the others I would really reccomend checking out the ACHA
I'm sorry you are having problems again. Have you had an echo or MRI to check your heart? I hate to say you sound like my son, but after his pulm valve/conduit replacement in 05 he felt GREAT, the day after surgery he already felt better than he did before surgery and for a few months he had more enrgy than he had in a while. Then by the 1 year mark he was starting to feel tired again ect. He had an echo and they didn't see a problem anywhere, but his right ventricle pressures were getting higher so they did a MRI to get a better look. Still didn't see a stenosis/blockage so he had a cath and it turned out his conduit was almost completely closed right on the seam where it was sewn to his ventricle. His was a combination of scar tissue and since the conduit is on top of his heart , it was also getting smushed by his sternum. So a section of it was replaced in 07.
I was surprised to see you have another mechanical valve in the pulmonary postion, I know many CHD surgeons don't use mechanical on the right side because the chances of clots are higher.

 

[Trinityheart8891]

hey,
I see an ACHD cardio in Boston abt 4 hrs away but I have a local cardio who does see some ACHD patients as backup... I'm gonna agree with the people here who say check out the ACHA, its awesome.....hope to see u over there

 

[vtbecca]

I don't have any input (my CHD child is 9) but it helps to read this information, I know he'll face this one day. I think the good thing is that so many more CHD babies and children are surviving into adulthood that more and more programs are starting for adults w/ CHD. It really is a unique category. CHDs are so different from other cardiac issues that it really is it's own field. I hope you find a doctor that you like who has experience with CHDs!

 

[tommy]

Wow, my heart goes out to you. Sorry you have to go through repeated surguries and aren't coming around out at fast as you'd like. I hope it all works out for you.

My opinion......... Find an adult cardiologist that specializes in your condition. You may have to do some homework and travel to find the right fit for you. I'd start with teaching hospitals at major universtities.

My opinion/suggestion comes from observing a friend and neighbor in the Dallas area that was born with TOF. She feels like she is a bit of a pioneer at the age of ~50. She sees top specialists at University of Texas Southwest Medical Center in Dallas. Her doctors are on top of the latest treaments.

 

[LL_beanie]

Thank you for all the good advice! I went to see the heart failure specialist today.

I have been referred to another hospital to see a physician who specializes in adult congenital heart diseases. I know my current doctors are good, but I've been having so many complications, that I'm looking forward to seeing someone who works with adults who have congenital defects. Luckily, it's in the same city (and my insurance is accepted there, which I was a bit nervous because there's been insurance changes at my place of employment.)

The appointment is in 2 weeks, and hopefully the problems I've been having can be managed better. I know that I may never have the full range of strength compared to people who were born with healthy hearts, but I'm at the point where walking just a little makes me slow down to gasp, and I've never experienced this before. Thanks for the support!

 

[vtbecca]

I'm glad you found someone! I hope the visit goes well and you can get some answers to being out of breath. That doesn't sound like something that should be happening. Be sure to take it easy until your appointment!