New to this - and confused

[jax3172]

I just joined the forum today. A recent echo indicated I had aortic valve sclerosis; leaflet motion moderately restricted; calcified aortic leaflets; aortic stenosis; mild regurgitation; mild to moderate increase in left ventricular wall thickness; dilated aortic root; dilated ascending aorta.

A mouthful - and I'm not sure what it all means. What I am sure of is that I have been feeling progressively worse over the last 18 months: shortness of breath, very tired, mild pain in chest. I've been told that I can talk to the cardiologist (whose technician did my echo) in 4 weeks. I told the person on the phone that I appreciated his dedication because I was looking for an appointment about a year out. She didn't appreciate my sarcasm/humor.

Needless to say, I think this doctor is a dud. Can anyone recommend an aortic specialist in the S. Jersey area? I can also go in network to U of Penna and Jefferson in Phila. Any suggestions? Thankx in advance.

In the dark in Ocean City, NJ

 

[hensylee]

Welcome, Jax (since you are in NJ, I guess that doesn't stand for Jacksonville, does it?) Glad to have you aboard. We've got members from all over the globe, quite a few in the northeast U.S. and they will come along to give you much info about drs. and hospitals. They can also explain some of the things you are talking about. This is a well informed bunch (well, except me). You posted last night after most of 'em went to bed, but they are coming.

We like your sense of humor - too bad the caller didn't.

 

[JimL]

Hi Jax, all that medical terminology sounds identical to what I had. They mentioned rheumatic fever in my case also, but we could pretty well exclude that -- not that the cause seems to matter much, it's the condition you have.
It's really nice to have a cardiologist you can talk to -- there are one or two of them out there somewhere. I had one, but he moved away. But the surgeon is the guy who can make you feel a whole lot better overnight.
I of course can't tell from that medical terminology how soon you may or may not need surgery, but it sounds to me like you definitely need to follow up on it, with this cardiologist or with another one.

 

[CCRN]

I just joined the forum today. A recent echo indicated I had aortic valve sclerosis; leaflet motion moderately restricted; calcified aortic leaflets; aortic stenosis; mild regurgitation; mild to moderate increase in left ventricular wall thickness; dilated aortic root; dilated ascending aorta.

A mouthful - and I'm not sure what it all means. What I am sure of is that I have been feeling progressively worse over the last 18 months: shortness of breath, very tired, mild pain in chest. I've been told that I can talk to the cardiologist (whose technician did my echo) in 4 weeks. I told the person on the phone that I appreciated his dedication because I was looking for an appointment about a year out. She didn't appreciate my sarcasm/humor.

Needless to say, I think this doctor is a dud. Can anyone recommend an aortic specialist in the S. Jersey area? I can also go in network to U of Penna and Jefferson in Phila. Any suggestions? Thankx in advance.

In the dark in Ocean City, NJ

Yes, I have a recommendation. When you have something that can only be corrected by a SURGEON, you get the opinion of one. Call that cardiology office and tell them since you can't see a cardiologist for a month and you obviously have symptomatic valve/aortic disease, you would appreciate a referral to a Cardiothoracic Surgeon. Pick up your echo report and take it with you. Informed patients usually get attention a little faster, unfortunately. I'm in Tennessee so I can't help you with a Doc up in that Yankee area.

 

[epstns]

Hello, Jax, and welcome to The Waiting Room -- the virtual room where many of us are waiting our own turns for valve surgery.

When I "fired" my previous cardio (who was chosen as the one closest to home. . . ), I did some internet research. First, I looked at what hospitals nearby were highly rated for heart surgeries in the most recent US News survey. Then I looked through all the web sites of the hospital of interest, to see what cardio practice groups were members of their organization. After that, I looked for a cardio who professed a specialty in valve disease among middle-aged patients (as opposed to geriatric patients, who are more common), and made an appointment. In my case, I was also scheduled out a month or so, but was asymptomatic so it wasn't an issue. I met with the new cardio, liked him immediately, and have stayed with him for the last two years or so. You might be able to get an earlier appointment in one of the busier groups if you explain any symptoms you have and also explain that you have to change to a new cardio, etc. Maybe they'll find an opening if another patient cancels, or just one of those "hold for emergencies" time slots.

Be friendly with the office staff, they can often pull strings for patients if we ask in the right way.

Good luck, and please keep us posted.

 

[bvdr]

I had to "fire" my first cardiologist also. He had been the cardio who had done my initial echo and cardiolite stress test but he just was not a good fit for me. I made my own surgical appointment and gathered my records and went up to Duke for an evaluation from a valve specialist. I had surgery within a few months to replace my mitral valve. Before surgery I made an appointment with another local cardiologist for follow-up after surgery and had my records from Duke sent to him. I've been happy about the way things worked out.

It may feel strange for you to assume a more pro-active role in your own care but that may be what is necessary. Make sure you get copies of all your tests for your own medical file too.

 

[Sherry]

Hi, Jax,
My sis-in-law was a transplant coordinator at Jefferson about five years ago. (She now lives and works in Wisconsin.) I'll try to talk to her within a day or two and ask for a referral. Best of luck to you.

 

[jax3172]

Reply to Sherry & others

Reply to Sherry & others

Thank you all for the support.

Sherry, I look forward to hearing back from you after you speak with your sister. Jefferson is one of the hospitals that is in network for me (BCBJ of NJ) even though it is in Philadelphia.

So a general question: is there a site that rates (or even lists) surgeons or hospitals that specialize in AVR? I'm doing some searches and coming up with interesting stuff but not a real hit for what I'm looking for.

As I said last night, I am not even sure if I'm to that point yet, but I know I feel rotten and even Dr. **** has told me (a year ago) that I shouldn't work out in the gym as hard as I used to.

Thankx!

 

[Nancy]

NEVER put up with a doctor who doesn't want to pay attention when you have serious worsening symptoms. They aren't there for you now, and they won't be there for you when you need them in the future. If they're too busy to fit in a sick patient, then what good are they??

Ask any of the nurses you know, ask anyone else in the medical field that you know, ask other cardiac patients, ask even your dentist. Speak with your neighbors, they might know someone who has a good card. When the same names keep coming up with good recommendations, you might have a winner.

It can be a long term relationship. You deserve to have a person you have confidence in and whom you can relate to.

 

[Phyllis]

Check out US News and world Report- best hospitals, 2004. www.usnews.com/usnews/health/hosptl/tophosp.htm They list them for specialties and check our the hospitals for cardiac care.

 

[jax3172]

Opinion on Dr Bavaria...

Opinion on Dr Bavaria...

The US News and World Report website led me to Dr. Bavaria at Univ of Pa Hospital. Aortic is his specialty. I get good vibes. Here's his infor:

http://pennhealth.com/WagForm/MainPage.aspx?config=provider&P=PP&ID=823

Has anyone out there dealt with him?

 

[tobagotwo]

Philly area has some excellent cardiologists and surgeons. Nothing wrong with them at all.

If you're looking for one in NJ, there is Dr. Tyrone Krause In New Brunswick, who did my AVR. He was listed as a top up-and-comer five years ago, and decided to go the "honest" route, and take on all cases, instead of playing the numbers game. I didn't have any dacron work done, but it's easy enough to check history on, if you like.

Best wishes,

 

[jax3172]

Thankx for the reference...and new question

Thankx for the reference...and new question

Thankx for the reference on Dr. Krause. I've read many of your posts and they are excellent. Since yesterday, I made an appointment with Dr. Bavaria at U of P in Philly for 7/5. Is there some site that rates heart surgeons? The site on US News and World Report only rates hospitals. By the way, how can I find out what dilated aortic root and dilated ascending aorta mean?

 

[jax3172]

Gee - this is getting exciting

Gee - this is getting exciting

Just spoke to personal friend who is a cardioligist. He said I probably need a "valve job". I'm not sure I'll get the same answer from Dr Bavaria the heart surgeon but I am definitely keeping my appointment with him on 7/5. Again, does anyone have a site that rates doctors or does anyone know anything about Dr. Bavaria? Thankx in advance.

 

[Sherry]

Hi, again. My sis-in-law got back with me today and said she knew of a lot of nephrologists, dealing with the kidney transplants, but said she would contact a few of them and get some referrals. It sounds like you've got some great leads, but again, I'll try to stay in touch with you regarding whomever she gives me at Jefferson. Best of luck, Jax.

 

[Christine]

Hi Jax, looks like you're doing your homework.. just keep pressing on.. like many here say.. find a Cardio (a good one mind you) who makes room for high risk patients.. when I became sick.. my GP finally did a EKG and discovered some heart issues.. at that time I hadn't been to a cardio in a long time so I didn't have one. but called around and most wouldn't see me for over a month.. I was calling a friday before memorial day 3 years ago.. I found who would take me in that Tuesday morning.. said, they make room for patients who really need to be seen sooner then later, granted I ended up being admitted from there due to the severity of my stenosis but that's another story.... that was 3 years ago, I have since moved to a philly suburb - but i've changed both GP and Cardio until now when I found both who respect my opinion and work with me and understand that I will be a pain in the butt at times in order to stay on top of my health.. good luck.

 

[jax3172]

Thank you Christine

Thank you Christine

Christine,

If appropriate, could you ask both your GP and especially your Cardio if they have an opinion on Dr. Bavaria. Thankx!

 

[catwoman]

Jax:
Have you googled any of these doctors' names? I've done that with various physicians on the internet and also in my newspaper's own database, if it's a local Dr.
There's also an internet service (paid) you can use to get info on doctors. I've seen a link at this website, perhaps in the last several weeks, but don't remember at which forum I saw the link. Charge is under $10 per name. Perhaps some folks here have used it.

 

[Marguerite53]

Welcome.

Welcome.

Jax. Welcome to our community. You will find lots of info here. If you haven't already, scroll down the list of forum topics and have a look through Reference Sources. Ross has made a list of "must have" sources which is very helpful, especially as you muddle through all the terminology, etc.

Good luck and keep asking questions. I'm in the somewhat long term Waiting Room with Steve (and others). Mary had been in the Waiting Room with us and she just got herself a bovine valve yesterday and sounds like she is doing very well. Everyone has their own timetable and their own story.

Marguerite

 

[Bill Hall]

jax - You should go to the search and type Bavaria. Several members have used him as a surgeon including jjg and Gerry Dorrian. I just looked through a few posts.
Bill