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C

cbsmith

Hello. I'm a new member on this forum.

I've recently been diagnosed with moderate to severe aortic regurgitation.

A little background.

I'm 39 years old. I have no history of heart issues. Since March of 2007, I have lost 65 pounds - starting at 245 and now about 180-185 depending on the day. This has been through exercise and eating better.

Beginning in late October, I started to have occassional heart pains and shortness of breath. I went to the doctor for a physical and he did an EKG. It showed that the walls of my heart were somewhat thicker than normal. He decided to send me for a echo.

I got the results back last week:

Moderate to severe aotric regurgitation
Aortic root diameter: 3.56 cm
Mild mitral valve regurgitation
Atrial diameter: 4.00 cm
Left Ventricle: Diameters - End-diastolic: 6.56cm; end-systolic: 4.19 cm. Diastolic Wall Thickness - Septal: 1.25cm; posterior: 1.25 cm
Mild concentric left ventricular hypertrophy. Moderately dilated left ventrical.
Right ventricular size and function appear normal.
There is mild tricuspid regurgitation.
Estimated left ventricular ejection fraction is 60%.

I don't really know what all of this means yet but I'm learning.

I went to see the cardiologist for the first time today. She is going back to review the first echo because she saw significant reguritation and wants to be sure she read it right the first time. I am scheduled for a stress echo tomorrow morning. She put me on Atacand since my blood pressure is high (150/90).

My mind is running a hundred miles per hour.

I'm glad I found this place where I can learn about all of this stuff.
 
Ok, not the end of the world, i'm 38 and have just had this sorted.

As well as the ekg and echo's you need to get a CT scan of your ascending aorta to assess if that needs attention also, mine did. The echo's can't get a truely accurate picture of the ascending aorta and the measuments made of it using just echo's can be prone to mis-interpretation.

The figures don't mean much to me and there are much more cluey people who will post on the relative merits of these figures when they check in.

Suffice to say that you are having issues, minor ones, but issues and to be classed as moderate to severe means that some intervention is going to be requried so its time to prepare yourself with the info to ask the right questions.

Take the time to read everything you can find and ask all the questions you need to ask, don't consider anything as 'too simple' to ask.
 
I am sure you were in shock, that is only normal. I know I was when they found my mitral valve regurgitation at the severe level during a yearly check-up.Never knew there was anytning wrong until then. Of course I was much older than you are, mid 60's.
Welcome to this site. You are at the right place. The people here are wonderful and very knowledgeable. They carried me through my surgery.
Mine was mitral valve and I have no idea what your numbers mean but just hold on...someone will be along shortly to discuss this with you.
Just remember that valve problems are fixable... with good results. Keep reading the posts here and hang tight.
 
Hello cb and welcome to the group!
Try not to freak out....I know it all happens very fast, but that can be a good thing. It's better that things get discovered and diagnosed now when you are able to make some choices and plans.
 
Hey CBS
First and foremost, welcome to VR. I believe you'll find everyone here to be very open to any questions and comments that you may have. Feel free to ask whatever comes to mind without reservation.

Second, try to take a deep breath because being told that you have anything wrong with your heart, let alone that it is "moderate to severe" tends to feel like a cold bucket of water thrown in your face. Rest assure that many here have had the same cardiological issues and are doing quite well and plan on long and fruitful lives.

Third, you probably already know that aortic regurgitation indicates that the leaflets of the aortic valve do not close properly (it is designed to be a one way valve) so that it allows part of the blood that is supposed to flow forward into the circulatory system, to seep back into the left ventricle. The echo report reflects a good ejection fraction, indicating a strong and healthy pump from left ventricle. It is, however, moderately dilated and suggests that it is a bit "stretched" from its attempt to compensate for the extra workload and the walls of the ventricle have hypertrophied (thickened) as any muscle would when called upon to work hard. Your cardiologist should discuss with you what all this means in your individual case. Dont be bashful to ask questions of your doc.

Lastly, let me encourage you to become as educated as you can about aortic regurgitation, possible valve choices should it come to that, and the best possible choice of surgeons. There will be others to follow here that can be of great resource.
 
tcopel said:
Second, try to take a deep breath because being told that you have anything wrong with your heart, let alone that it is "moderate to severe" tends to feel like a cold bucket of water thrown in your face.
Click to expand...

That about explains it. My mind is going is so many directions. I'm trying not to get too freaked out because I'm still in the learning process to find out what is really going on with me.

Thanks everyone.
 
Welcome to the VR community. Sorry for the circumstances but glad you found us. To be honest, I don't understand the numbers as I'm a bottom line kind of guy and so that's how I approached it with the doctors. Similar to you, I had no history of heart problems and so the diagnosis that I had severe regurg and needed heart surgery came out of the blue. :eek: My mind ran a hundred miles an hour, too.

In the end, the OHS was not as bad as I imagined and now it's behind me, the regurg is gone, and my heart didn't have any permanent damage. It's no picnic, but I'd do it again without reservation if I had to....I just hope I never do. :rolleyes: ;)

Like you, I have high BP, which my Cardio says is unrelated to the heart surgery issue, and I'm taking Atacand as well.

Best wishes and good luck.
 
Dear CBSMITH

Sorry for your news on your heart. I am also 39 years old, and had moderate to severe aortic regurgitation. Thurs. I will be 3 weeks post op for open heart surgery, had my aortic valve replaced with a tissue valve, would have chosen a mechanical valve, but it turned out not to be an option for me due to other medical problems. It's a bummer to get this kind of news at our age for sure. Just like everyone here is telling you take a deep breath and start your research. Some people on here seem to bounce right back right after surgery, but for me I don't know, I've been really depressed, and in pain, BUT...the main thing is I am still here. My doctor told me it was a life or death choice for me, so I had the surgery. I go for my first follow up appt. tomorrow and am sure he will give me a good report. I'm sure things will work out for you to; it's just scarey right now. Will be sending prayers your way.
Take care and best wishes.
 
Welcome! You have had great responses so far, and there will be many, many more as you traverse this new journey you''re getting started on.

Magic is right. NO question is too simple. Ask us anything!!! There is a wealth of experience here, not any real doctors per se, but guidance and support pretty much 24/7/365!! Seems like there's almost always someone awake and ready to respond. So don't be shy.

Basically you have just joined a new group of people. There are so many of us who have successfully been through what you are just learning about. It is very natural to be completely freaked out.....but open your mind to the notion that truly, this is a very livable condition. You are gonna be fine!!

Best wishes. Please start a new thread with each new kind of question. That way more people will see it and you'll get richer answers!!

Be well!

Marguerite
 
CB ..... welcome. I remember what I felt like when they told me I would need surgery. Unflippin believable (nice way to say it), like a kick in the gut. I adjusted to the idea and so will you. There are many here with that are very knowledgeable and a few clowns:D We will get you through this. It really is not so bad, promise.
 
Hi CB

Welcome to the group. You will find many knowledgeable people here who will help you make the right decisions. It's a great group. I found it almost 6 years ago when my husband was told OHS was in our future. I'm still here because of the comradarie and support everyone gives so freely.

First of all, take a deep breath! Don't panic! Don't go on "overload." Take one step at a time. I'm sure your mind is going in a million directions right now, but everything will sort itself out over time.

Learn as much as you can about your situation, if surgery is in the near future, check out your surgeon carefully and ask him/her how many procedures they do. Get the very best heart hospital and surgeon you can. I was surprised, when Tyce had his surgery, that our hospital really treated this type of surgery as "Just another Day," when it was humongous to us.....well, me.

You will get through this....I believe the success rate is about 98-99 percent. Try to relax and take it one day at a time.

We'll be here for you.

Evelyn
 
Welcome to our world CB !

The GOOD NEWS (and there is a LOT of it) is than your condition was discovered fairly early, before reaching a critical stage, giving you time to learn about your condition and the treatment options.

The other Good News is that first time surgeries in patients under age 65 have an extremely high Success Rate. Nationally, there is a 1% risk of Stroke and 1% risk of Mortality. That risk is even less with Top Rated Surgeons who do a LOT of Valve Replacements (say 200/yr). The alternative of Doing Nothing is almost certain Death. When a Valve Wears Out, it's All Over.

Your BIG Decision is in the choice of a Valve, i.e. Mechanical versus Tissue. Please read the "Sticky" Posts at the beginning of the Valve Selection Forum for a good overview. Note that Tissue Valve tend to wear out, and the younger you are, the faster they wear out. Mechanical Valves can cause Clot Formation which can cause Strokes. To minimize this risk, Mechanical Valve recipients are put on Anti-Coagulation Medication (Coumadin or generic Warfarin) for Life. See www.warfarinfo.com to learn all about living with/on Coumadin. Mechanical Valve sites of interest are www.sjm.com, www.onxvalves.com, and www.heartvalvechoice.com

That should get you started on your Heart Valve Education!
Feel free to ask more questions as they arise.

'AL Capshaw'
 
Hi, CB.

I'm sorry you had to meet us under your present circumstances, but I'm glad you found us! :) :)
 
Thanks again everyone.

I went for the stress test today and had another visit with the cardiologist.

The stress test went well. My exercise tolerance is excellent. No issues there.

The Doctor went back and looked at the echo. She said the regurgitation was strong-moderate. Not quite severe yet. Based on her review, I was not born with the issue as the valve looks like a normal shape.

She did say, that I will eventually need surgery. It's just a matter of when, which we're going to try and determine. (She said the longer we can delay the need for surgery the better given my age.) My left ventrical is enlarged. She wants to find out why. Since my blood pressure is high, she put me on Antacand. If the blood pressure comes down, and it shrinks my heart, that will help answer the question. However, if the heart doesn't shrink, it's more likely due to the regurgitation which would put me closer to surgery.

She also said she would recommend a biological valve since I would need to be on blood thinner with the mechanical valve. I need to do some research there.

I can continue to run - just no marathons which I was planning. I can stick with what I am doing currently (25-30 miles per week). Also, no real weight lifting - light toning work is allowed though.

I go back to the Cardiologist in three weeks to review my medication tolerance.

I have a lot more to learn.
 
CB, Welcome! And I'm glad that surgery is apparently not a pressing issue for you. Hopefully reducing your blood pressure will bring your heart size down. If it doesn't, it could be due to your valve issue. Keep a close eye out on your body gradually compensating for subtle symptoms that can sneak up on you and have your body compensate for without you really knowing it. Shortness of breath at times when you usually don't get SOB, fatigue or tiredness without any real overpowering reason for it, a bit of dizziness. It's not unheard of to have members come on presurgery and report that they have no symptoms, only to come back after surgery and realize that they did, but they came on so slowly that they didn't notice how they had compensated for them.

What is your age? That will determine for many people whether they get a bio valve or a mechanical. Bio valves don't last as long in younger people due to body chemistry. The life-span projections that you will see for tissue valves are for study groups with mean ages of around 65. There is a whole mess of bad information and myth in the medical community about Coumadin (generic name "warfarin", most often incorrectly referred to as "blood thinners".) From you doctors comment, it makes me think she is not current on ACT (anticoagulation therapy) protocol. Take a look at this Sticky Thread http://valvereplacement.com/forums/showthread.php?t=17116, and also go to www.warfarinfo.com. It is the single best source for correct information on Coumadin. Most of us that take Coumadin feel the worst part about it is having to deal with a medical community that isn't bothering to educate themselves on current protocol and still rely on decades old information.

But all in all, it sounds like you have some time to digest all you've heard and learned and prepare for an eventuality. Some people here have been in the waiting room for years, others who thought they'd be in for years go into an appointment and find that their 10 year projection is now 6 months. So just keep on top of your visits and you'll do just fine.
 
Karlynn said:
Keep a close eye out on your body gradually compensating for subtle symptoms that can sneak up on you and have your body compensate for without you really knowing it. Shortness of breath at times when you usually don't get SOB, fatigue or tiredness without any real overpowering reason for it, a bit of dizziness.
Click to expand...

I do have these occasionally. Based on the conversation with the Doctor, it sounded like I would really know when the symptoms occur. She knows I've had these symptoms occur. But it sounded like she didn't want to rush to judgement. She wants to see if the medication helps with the size fo the heart.


Karlynn said:
What is your age?
Click to expand...
I'm 39.

Before I have any surgery I would plan to talk with at least one other cardiologist to get their opinion.
 
I feel a cross between wanting to be angry and wanting to cry at this point.
 
cbsmith said:
I feel a cross between wanting to be angry and wanting to cry at this point.
Click to expand...

YEP, that sounds like a pretty normal response to being told you have a Heart Condition :)

Your Cardiologist does seem to have a Bias against Anti-Coagulants (not really "Blood Thinners"). There has been a HUGE change for the Better in managing Anti-Coagulation after the introduction of the INR (Internation Normalized Ratio) Test and Measurement system in the 1990's. Before that, there was a Lot of (Uncompensated) Variation in the Reagents used to measure Prothrombin (Clotting) Time. Modern Testers test against a standard and compute the RATIO, thus cancelling out the effect of the reagent parameters. This is MUCH More Accurate and the 'Bleeding Horror Stories' of pre-1990 Coumadin management is quite RARE today (unless you are put under the care of an Out of Date Provider).

Regarding Tissue Valves, the longest lasting is the Bovine Pericardial which has a Proven Track Record approaching 90% durability at 20 years in patients who were OVER Age 60 at the time of implantation. Younger Patients will get LESS durability.

Untreated Porcine Valves typically wear out in 8 to 12 years in OLDER patients and noticably less in younger ones. It is hoped that the newer 'improved' Porcine Valves will last longer but we won't know for probably another 10 years because they have only been available for around 12 years (to the best of my knowledge - you may want to verify this).

The relatively new (1996) On-X Mechanical Valves claim reduced propensity for Clot Formation and are in Studies to evaluate NO AntiCoagulation (with Aspirin or Plavix) and LOW AntiCoagulation. See www.onxvalves.com

'AL Capshaw'
 
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