New with questions

[ALCapshaw2]

Diana,

Cardiologists are good for Diagnosing Heart problems but when it comes to Valves and Aneurisms, they can only postpone the inevitable (repair by Surgery) using medications. The downside of postponing surgery is that damage can be done to the heart muscles and walls while waiting for symptoms to get worse, which is confirmation that damage has been done.

Given that your husband has a dilated Aorta, it may be best that he just starts interviewing Surgeons, preferably ones with considerable Experience doing Surgery of the Aorta and possibly Aortic Arch (which is technically 'challenging' and should NOT be done by someone who only does a few such surgeries per year). See the Bicuspid Aorta Valve and Connective Tissue Disorder Forum for LOTS of information on those associated issues.

There are now 4 surgeons at UAB in Birmingham.
Dr. James Kirklin is head of the Transplant Team
Dr. David McGiffin is the #2 guy on Transplants
and seems to be the 'go to guy' for High Risk Surgery
I've heard that Dr. Athanasuleas recently joined UAB from a smaller hospital in Birmingham. I believe he is a CHF specialist who does multiple types of heart surgery.
Dr. Pajaro (in his 40's) was recently hired from Mayo Clinic (FLA.) to replace the retired Dr. Pacifico who was the Top Guy at UAB for many years.

It sounds like Emory in Atlanta is also a good place to consider, especially with their Congenital Heart Disease program. Dr. Puskas heads the LOW / NO Anti-coagulation study on the On-X valves.

Another good group in Atlanta is Peachtree Cardiology with a dozen surgeons (see their website). I've heard very good things about Dr. Wolfe there and some of our members have used him with good success.

Note that Huntsville Hospital is served by The Heart Center with 25 Cardiologists and 5 Surgeons who primarily do ByPass Surgery and some (mostly first time) Valve Surgeries. Many of their 'high risk' surgeries are referred to UAB. Note that the Cath Lab at HSV Hosp is OUTSTANDING and possibly the Best in Alabama. Their cath specialists can do a standard cath in 20 minutes!

'AL Capshaw'

 

[Diana]

Thanks to all on the advice on the doctors. I had no idea that Emory had an excellent adult congenital heart program and I will be checking with my insurance on that. As far as UAB, I knew they had a good reputation but I did not know who to go to there, but now I am sure we will be seeking consultation there soon. I believe from here the next step is to continue on at our current doctor and get the results of the echo performed last week and the CT then probably move on to Birmingham or Atlanta. I am sure I will be back with many more questions as we go. Thanks again.

Diana

 

[gerrys]

Diana:
Welcome and best wishes. An echo merely starts the process, but a CT and catheterization can best tell exactly what is going on.
In 2002, I underwent the full battery of tests and was told that it would be many years before a valve replacement would be necessary (age 52 and they said probably in the 70's). Earlier this year I started to show symtoms of heavy breathing, tired, lack of energy and in April, again went through the tests incl the CT and cath. To make a long story short AVR at age 59, not 70 - so things can progress rather quickly. It is best to know everything you can about your husbands condition if nothing more than setting a baseline for the future. Repeating some other advice, it's better to repair the heart while it is healthy. Delay can further complicate the procedure and interfere with a full revovery.
Emory would be a good place to go. There is also an excellent cardiologist in Atlanta named Jack Dawson (the father - his son Jack Jr is also a dr). His office if on Peachtree in the Buckhead area. He works with Piedmont Hospital on W. Paces Ferry.
Pleas keep us posted on your progress.

 

[Curtsmum]

Hi Diana, hope all goes well for your husband, welcome to the forum.

 

[6 for Sarah]

Al, I saw Dr. Hartley at the Heart center. He really blew me off and told me that according ot my records I brought with me when we moved from Duke, the valve was not in "distress" and told me I could go ahead and get pg again, no echo or anything. I KNEW that was not the right thing at the time and KNEW there was escalating symptoms that were dismissed. I made myself an appt at UAB and had surgery within 5 months, 3 were spent waiting for human valves to be available, I was on the list within 2 months of Huntsville telling me there was not anything that correlated to my symptoms. Dr. McGiffin said the valve was much worse than he thought when he actually got in there as compared to the echo. I am just glad that they listened to me when I was telling them I knew something was amiss. I guess that is why I continue to drive to Birmingham for routine cardio care instead of getting it in Huntsville.

 

[ALCapshaw2]

Several of our members have gone to Dr. McGiffin at UAB and been VERY PLEASED with their results.

Dr. McGiffin is Highly Respected as a knowledgable and skilled surgeon who really Listens to his patients and will take the time to answer any and all questions. You couldn't find a better Role Model for his attentiveness and concern for both patients and staff.

 

[ALCapshaw2]

Al, I saw Dr. Hartley at the Heart center. He really blew me off and told me that according ot my records I brought with me when we moved from Duke, the valve was not in "distress" and told me I could go ahead and get pg again, no echo or anything. I KNEW that was not the right thing at the time and KNEW there was escalating symptoms that were dismissed. I made myself an appt at UAB and had surgery within 5 months, 3 were spent waiting for human valves to be available, I was on the list within 2 months of Huntsville telling me there was not anything that correlated to my symptoms. Dr. McGiffin said the valve was much worse than he thought when he actually got in there as compared to the echo. I am just glad that they listened to me when I was telling them I knew something was amiss. I guess that is why I continue to drive to Birmingham for routine cardio care instead of getting it in Huntsville.

I would expect that Dr. McGiffin wrote a letter to the refering Cardiologist at UAB and probably copied your Primary Care Physician.

Do you know if a copy was also sent to Dr. Hartley?
If not, I think it would be a good idea to see that Dr. Hartley is informed of your surgery and Dr. McGiffin's findings. That's the ONLY way he can learn from his oversight.

 

[Duff Man]

Diana, check this out: I'm 25 years old, I have a valve area of 1.5, a peak gradient of 32mmHg, an aneurysmal ascending aorta and I feel like crap pretty consistently, with chest pain and some SOB. Your husband and I have very similar statistics.

I'm glad I read your post, because I thought I was going nuts. I'm pretty sure my wife thinks I'm faking it. The doctors have maintained that I shouldn't be symptomatic, but I can't reconcile the symptoms with anything else. Seeing another person with almost identical circumstances is convincing to me that my valve is symptomatic.

I'm waiting on the results of a stress test, but judging just from the EKG I am negative for coronary artery disease (aka blockage).

 

[Diana]

Diana, check this out: I'm 25 years old, I have a valve area of 1.5, a peak gradient of 32mmHg, an aneurysmal ascending aorta and I feel like crap pretty consistently, with chest pain and some SOB. Your husband and I have very similar statistics.

I'm glad I read your post, because I thought I was going nuts. I'm pretty sure my wife thinks I'm faking it. The doctors have maintained that I shouldn't be symptomatic, but I can't reconcile the symptoms with anything else. Seeing another person with almost identical circumstances is convincing to me that my valve is symptomatic.

I'm waiting on the results of a stress test, but judging just from the EKG I am negative for coronary artery disease (aka blockage).

Aaron,

Yes the numbers are close and I dont know about your situation but this has been gradually worse and worse over the past year or more. He was working out every morning and slowly cutting back until about two months ago he just cant do it any more, it takes everything out of him to do those pushups in the morning, but he is not out of shape. As for your wife, it is hard for us to understand I think. I did not understand his condition or know anything about it more than he had a murmur until a few weeks ago and I honestly thought he was developing asthma and when we went into the doctors office I expected them to say nope you are great, just a little allergies or something like that, but that was not the case. He has not been dismissed yet. They were very kind and have done a better echo (as our insurance would not pay for two within three weeks) and we have the CT on Monday, they really sped that up as well so they are checking him out. He also mentioned that we could to a TEE and/or cath to see what is going on but he felt that was a little premature, and we agree, lets see what these test show. It is hard because first impression said your symptoms are not related to your heart but he is really fit, and yet tired allllll the time, and this is no way to live until he "is in his 50's" waitng for something to go wrong, not to mention he can't even really play at the park with our daughter anymore, its just really hard but I am hopeful we will find something that is fixable in the near future and wish the best for you as well, as we completely understand.

Diana

 

[Marguerite53]

Welcome!

Okay, I've scanned over all these responses and I have a question. Is your husband possibly experiencing any kind of arythmmia? A distressed heart can go in and out of rhythm. There are benign rhythms and then there are those which must be addressed.

I experienced PVC's for a very long time without ever having them identified. Those are benign...premature ventricular contractions. THey can make you VERY TIRED! To see if there are arythmmias (and the echo might have picked up some) you can wear a very simple device called a holter monitor which records the odd rhythms. Anyway, since he is so tired, I just thought that might be an idea. Definitely worth asking the cardio about.

You are definitely thinking well about all of this. That he has you as a team is a most excellent thing!! You will figure this out in due time and will be able to act accordingly.

Keep up the good work!

Best wishes.

Marguerite

 

[Diana]

Welcome!

Okay, I've scanned over all these responses and I have a question. Is your husband possibly experiencing any kind of arythmmia? A distressed heart can go in and out of rhythm. There are benign rhythms and then there are those which must be addressed.

I experienced PVC's for a very long time without ever having them identified. Those are benign...premature ventricular contractions. THey can make you VERY TIRED! To see if there are arythmmias (and the echo might have picked up some) you can wear a very simple device called a holter monitor which records the odd rhythms. Anyway, since he is so tired, I just thought that might be an idea. Definitely worth asking the cardio about.

You are definitely thinking well about all of this. That he has you as a team is a most excellent thing!! You will figure this out in due time and will be able to act accordingly.

Keep up the good work!

Best wishes.

Marguerite

Marguerite

Thank you. He has had palpatations as long as I have known him, just crazy heart beats sometimes, but he says he has had that since he was a kid, nothing is different with that now. His echo, which is questionable in quality, reported sinus tachycardia with left ventricular hypertrophy so that may be what he is experiencing, I am not sure about arythmmia, as it did not say anothing about that. I am very very anxious to get the results back from the one we had done in Huntsville, which hopefully will shed more light on this. As I am learning though this site and others, I am developing a long list of questions to ask our cardiologist no matter what his final word is and I thank you for helping me with that by your responses.

Diana

 

[Arlyss]

There is a reason for symptoms, but sometimes that reason is not obvious or easy to find. It is confusing when the person is young and apparently healthy, and the initial testing may not provide clear answers.

It does not mean what the person is experiencing is not real - it is. It just means that physicians have not been able to identify/understand/explain it yet. Do not let anyone discount what you feel if you have BAVD.

There is a lot of variation - those with BAVs are not easy to explain, some more complex than others. For some, their symptoms are not expected based on testing results. For others, like my husband, they wonder why there are no symptoms when there should be based on the tests!

I have learned to observe carefully and look for trends, never discount anything someone with BAV experiences, and to persist, along with medical professionals, in looking for answers. For my husband and I, this will always be the case - because he has BAVD and there are things about him still not understood today. Also, as time passes, BAVD may express itself in new ways in him.

Don't be discouraged - there are physicians out there that will push to find answers when something does not make sense. Look for them, and partner with them to get the answers you need. That is what we continue to do.

Best wishes, courage, and strength in your search for help,
Arlyss