adult congenital clinic

Those of you who are congenital, are you followed by an adult congenital clinic or specialist? I've had the same cardiologist for 20 years and adore him, but he doesn't have other patients like me and the older I get, the less he seems to know how to advise me. Things are great now, but my concern is the day comes when things aren't so great and he won't know how to handle it. I made an appointment to meet an adult congenital ep at a large university hospital that has a good sized (1000+ patients) congenital practice. For now, I'm just going to meet them, then I'll decide if I want to move my care. 


13 Comments

Congenital

by Cabg Patch - 2016-10-27 15:16:12

So there has been some heavy advertising locally for a new medical clinic that opened which focuses on senior health care. From their commercials they're going to teach us how to tango in their office... Strange. I must admit when I first read your title, I immediately wondered two things...

1. Is that really coming out of sweet Tracey's mouth...

2. Does Blake allow that kind of talk here...

Then I re read the title. Can you clarify, for the ignorant here who might not get it (that would be me), What an Adult Congenital clinic is and why it would be important to go to one? I mean very  few of us were adult at birth, it may not be obvious but I sure wasn't. No snickering please.

I see a different problem...

by donr - 2016-10-27 15:27:49


...Tracey, by the time that day comes, he will be either dead or retired & you will have lost all the institutional memory he had of your particular situation.

Perhaps the advantage of going to that Tango School you mentioned is that you can begin to establish a new track record & institutional memory at a place where they will outlive you.

Is it at Shands?  If so, I was a freshman there when that building was a foundation that had been temporarily abandoned for lack of money.

Don

Patch

by Tracey_E - 2016-10-27 15:37:59

A few adults still aren't adults. Not naming names or anything, of course. 

https://www.achaheart.org/

And Why...

by Grateful Heart - 2016-10-27 15:43:24

...After all these years do you want to become an adult? 

From what I hear, it's not all that it's cracked up to be.  (And you have to form proper sentences...unlike my last one).

Here's another one....If it ain't broke, don't fix it.

Grateful Heart 

Don

by Tracey_E - 2016-10-27 15:45:21

Shands is a bit of a hike, going to one in Miami that has a satellite here in town. 

Grateful Heart

by Tracey_E - 2016-10-27 15:49:59

It ain't broke, but there are some cracks in the foundation. 

Cracks

by Grateful Heart - 2016-10-27 16:03:12

Duct tape fixes everything!  That's what my husband tells me.  :) 

Grateful Heart

Congenital Problems

by Good Dog - 2016-10-27 16:58:04

I can certainly see how a congential problems need the specialized care that the ACHA provides. It would seem obvious that their focus and experience would provide the best care available. There are so many different and complicated congenital heart disorders that I wasn't even aware of until I started looking. 

However, I don't understand how someone with a heart rhythm disorder that has been properly diagnosed and treated with a PM will benefit? Is there a difference between a congenital heart rhythm disorder and a non-congential heart rhythm disorder?

I was in,..,,

by donr - 2016-10-27 23:38:50


....high school in Miami when that institution was started.  Everyone in MIami thought it was a joke, considering the reputation UM had.  Looks like the last laugh was on the critics.

Don

Congenital Services UK

by Pacemum - 2016-10-28 03:21:51

All adult congenital patients are now advised to see a congenital specialist in the UK. Standards are now being implemented which mean that only those with simple structural/congenital problems are allowed with the agreement of the congenital specialist centres to be seen in local centres who do not have congenital specialists on site.

We have seen the adult congenital services grow enormously over the last 16 years in the UK.

The congenital adult services run joint pacemaker and cardiology appointments. Therefore, appointments run after each other.  The electrical and structural problems are considered alongside each other.  These specialist adult services also have specific nurses who deal solely with congenital patients. The congenital centres have more experience in how to place wires correctly within complicated heart structures

The appointments are often further away from home but they are long and extremely thorough.

 

Adult Congenital Clinic

by grilor - 2016-10-28 08:57:54

Tracey, If that were offered near where I  lived, I would be interested in seeing them. While our rhythms may be the same as someones who developed later in life, they had different underlying causes. I would just think of it as another specialty, specific to our individual problem. I would be interested to hear what you find out.

Again

by Good Dog - 2016-10-28 09:20:30

So what you are saying is that there is a difference between congenital and non-congenital PM adults that have been properly diagnosed and treated. I am confused. I can certainly understand the difference and the need for specialized treatment of a child with a congenital problem. Especially an infant. 

 

Again, what is the difference in an adult that has been diagnosed and treated with a PM that would dictate specialized care. Here is what I could find:

<<Heart rhythm problems should always be treated in the context of the “whole picture” of the defect and heart history. By getting checked, you will help ensure that your ACHD cardiologist recommends a treatment plan that takes into account your unique congenital heart anatomy. >>

Thing is; I went to the Cleveland Clinic and I did not see the ACHD Doc there. They have my history and they did not even suggest it. Since they are the best, it makes me wonder? Is my heart anatomy truly unique?

Certainly, there are many congenital disorders in which the heart anatomy is truly unique. Rhythm disorders in infants and children are certainly unique for obvious reasons, but in adults treated successfully with a PM? I guess I just don't understand? I too, am interested in learning more.

replies

by Tracey_E - 2016-10-28 09:36:14

GoodDog, that's one of my questions for them, why the need for specialized care when my problem is more or less fixed. We can be expected to pace for a lot more years than someone with an acquired condition for one thing, that has its own complications. Right now I'm cruising along with no complications, but the day will come - hopefully not for many more years- where extraction is on the table, where function drops, where other conditions that come with aging may complicate things. I'd like to know if there's more I could be doing now to put that day off. We may have the same problem others develop later in life, but for them their hearts beat normally then changed. For us, our hearts never beat normally so that alone makes us different, whether our condition is managed or not.

Pacemum, thank you so much for that information! I didn't realize how prevalent congenital clinics were in UK, how wonderful for your kids. I was a pediatric cardiologist until I was in college, the transitioned to a regular adult cardiologst. This was before the days of ep's or extended care through the peds clinics. I can travel 1 1/2 hours to the main clinic, but they have a satellite here in town with a cardiologist on staff. He's not adult congenital but would consult with the guys at the larger clinic. I have back to back appointments with both of them to get started. 

Grilor, check the map on the link I posted above. There are more ACH clinics than I expected, many within teaching hospitals or universities. 

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