New member intro

[Tass]

Howdy,

Just wanted to introduce myself. I recently found out I have a bicuspid aortic valve and aortic regurgitation. History: (Am a 41 year old female)I have had bilateral edema of the lower legs/ankles for the past 14 weeks. Could not get a resonable diagnosis from any of the GP's I saw (one quickly decided it was fallen arches) so I pushed and was sent on to a rheumatologist. It was she who detected a heart murmur. Then she goes on to ask if I was sure no one had every mentioned heart problems to me and even said cardiomyopathy (panic time). I went for an echo and the results were mild aortic regurg./suggest bicuspid structure. Yesterday I saw a cardio. due to the continued swelling of the ankles and shortness of breath. He was very nice, but I had the feeling my symptoms were being dismissed. The swelling he said wasn't pitting enough to be significant-just wear support stockings. I am presently on a 24 heart monitor for the shortness of breath and occasional lightheadedness. I've always been active and participate in performance events with my dogs. Recently i've noticed being more out of breath following my runs and even dragging the lawn bags around the house to the curb. He did suggest cholesterol lowering drugs pending blood test results (I did have an elevated C reactive protein on the last blood test) and an echo every 3 years.

Does this track with anyone else's experience? 2nd opinioin needed?

Tass

 

[AgilityDog]

Yack! you sound like me!! My mitral valve failed as a result of bronchitis. I was coughing, legs swelling, couldn't breathe, could barely run my dogs.

My PCP said it was just that I stripped the lining of my lungs (which I did), and I "couldn't run dog agility if I had a heart problem." She ignored my concerns, not once but 3 times in 6 weeks.

She finally sent me to a pulmonologist, who, after seeing me another 3 times in 6 weeks and trying different treatments, and listening to me bitch about the swelling legs to the point of pain, shortness of breath, coughing all night, etc., decided it probably wasn't my lungs. He sent me to his buddy down the hall - my beloved cardiologist. That pulmonologist saved my life! and I changed PCPs! I called that broad up and told her "Yes, you can run dog agility with a heart condition - I'm fixing to have a valve replaced!" I was in class IV heart failure. Class V is probate.

Now my aortic valve is failing, I've started a daytime cough this week, more dizziness/near fainting when trying to garden this past weekend. I just called my cardio to keep him up to date on the increased symptoms. I'm not making book on getting through 2010 without surgery...maybe not even 2009! I'm getting an echo every 6 months. My cardio takes very seriously that I can do a 15 obstacle novice agility run just fine, but an 18 open level or 21 obstacle excellent/master level is too much. He says that's a symptom. Wanna come visit my guy????

 

[escargome]

Welcome, My story is a little like yours. SOB, swelling occasionally, just tired all the time no matter how much rest. I knew I had a murmur, but my GP told me no problem, we'll do EKG's you don't need surgery at this time. Came Jan. 2008 and I got bacterial meningites. Next thing I know, cardiologist @ hospital is doing TEE, CT Scan and getting panicky cause the murmur was my Aortic Valve which was bicuspid. So yes by all means, get another opinion. Push those doctors to give you straight answers until you feel sure and comfortable with what they say. Good Luck to you.

 

[Tass]

Laurie,

I wish I was closer to you! I am currently seeing doctor's within the Kelsey system (hating it at this point) and am planning to ask around for a cardiologist outside the system. My doctor yesterday didn't seem to get it when I told him I was short of breath at agility class...it was a very easy/flowing Open type course, 22 obstacles (only required one front cross to get in front of the dog-the rest was great, just hanging back and handling from the rear). I should have been able to run that one back to back. Having an 8" corgi, we often go big to small and then just small back to big.

Will you be coming to Reliant in July?

Chris,

How did you resolve the swelling? I've lived in sneakers and slide type shoes since March. I'd love to get back into my pre-swelling shoes.

Another Q:

The swelling appeared 2 days after my 2nd boxing class in 2 weeks. It was a very intense class, actual boxer type conditioning. I know I wasn't in great condition before the class, I could handle moderate exercise but this was serious training. Could the sudden intense conditioning exercises have triggered the regurgitation?

Tass

 

[ALCapshaw2]

I vote for a Second Opinion from a Cardiologist who understands about BAV (and the often associated Connective Tissue Disorders). You need to be seen by someone who understands and appreciates the special characteristics of BAV.

You may even want to consider a Surgical Consult.
One of the Best Aortic Surgeons in Texas (and USA) is Dr. William Ryan (DFW?). Several of our members have used him.

You may want to ask for the names of Good Cardiologists and Surgeons around Houston but for BAV you will want a Surgeon with LOTS of BAV experience. These are most often found at the Major Heart Hospitals.

Hopefully some of our Texas members can give you some more names.

'AL Capshaw'

 

[AgilityDog]

No, I won't be coming to Reliant, though some of my friends will be. I tend not to travel for agility. Tank was way too slow, was never going to MACH. Jet might MACH someday, but is just not ready for prime time yet - she has her NAP, NJP, but we're still working on control and full height jumps. She hated the Watt arena in Ft Worth because of the echos in the tunnels beneath, so I'm hesitant to go someplace I don't know. Plus the $$. Mostly we show at McKinney.

I don't know that the swelling could be caused by the boxing. doubt it. Lasix (which must be taken with a potassium supplement) may help the swelling. It gets rid of some of the water retention. Walking helps get the blood moving, and may also help, as may the stockings. But really, fixing the valve is what does the most good on the swelling. I went up a shoe size before surgery.
I've got to run, pm me if you want.

 

[AgilityDog]

Yes, William Ryan is in DFW. He office shares with my cardiologist and my surgeon at Baylor Plano.

 

[escargome]

Chris,

How did you resolve the swelling? I've lived in sneakers and slide type shoes since March. I'd love to get back into my pre-swelling

Actually I didn't have a lot of swelling, but most times I tried to stay moving. Summer was really heck until after my replacement. Now I exercise 6 days a week plus have a diaretic in case my ankles get too puffy. Again, please get another opinion. You need to find a gp and cardiologist who take you seriously.

 

[Maryka]

Good luck with getting a true diagnosis! I have known people who had good luck at Baylor, though I see from previous posts to your thread that things get very complicated there in Texas.

Welcome to the list and keep looking for the answers!

 

[WayneGM]

Just want to welcome you to VR, Tass. Glad you found us and decided to post.

 

[Ross]

You need to get a second opinion from another cardiologist and have some real tests run. If your showing signs of edema, that's a big flag that something needs some serious investigation and not just blowing it off.

 

[njean]

Welcome to the forum & I echo what others before me have advised. I would definitely look for another cardiologist & get a 2nd opinion. One very good thing, is that you're in the Houston area --- some of the best surgeons & drs are at the Houston Heart Center which is where I'd be calling if I were you!

And as for the adema, sounds to me that an Rx for Lasix is warranted but you need to first find out for sure the root of your problem.

Best wishes to you & take care!

 

[Eva]

Tass, welcome aboard and good luck. I like only to add to all the good advice you received above if you can substain from salt for the time being as much as you can. It might help with the swelling even though it is not the main cause of it.

You may also want to lift your legs up (as in Ross' avatar) to help bring swelling down...I am serious and this is a good advice.!

Keep us posted.

 

[Cooker]

Welcome to the zoo .... glad you found us

 

[Lorimacm]

Hi Tass,

I am new to the site as well. I have bicuspid aortic valve and in the process of finding a new cardio and/or surgeon at the moment. I too am having swelling in my legs but not so much in my feet it starts in my knees with minor swelling in ankles and feet. Really puts a damper on walking much - not to mention the getting tired. I think second opinions are definitely good. I am in California and started calling around to some of the hospitals here to find a doc and actually talked to Dr. Shemin's office today at UCLA Medical Center. And will probably be seeing him soon. Still debating on whether I should stay in California for this or travel to another state for surgery.

Ask these folks on this site questions and doc advice. They seem to really know their stuff. I am thankful to be in such great company.

Keep us posted on your progress.

God bless
Lori

 

[Tass]

Thanks for the welcome

Thanks for the welcome

Is there some special way of asking if a doctor specializes in valve disease? I've been calling around for a second opinion and whenever I asked if the doctor specialized in valve disorders all I got was "of course, he/she is a cardiologist!".

Just had the 24 hr. monitor removed...now to get rid of the adhesive!

Tass

 

[JeffM]

Tass,

In my non-expert opinion, something else is going on besides your mild regurg.. I was diagnosed with BAV with mild - moderate regurg back in '86 and was exercising VERY strenuously (competitive swimming, running, cycling) for years with moderate to severe regurg. before I got my first symptom, which was Afib. Once I became symptomatic, I was referred for surgery and had my valve replaced with a couple months. I never had any of the symptoms you are presenting. I agree with the suggestions that you get another opinion. I believe most hospitals and surgical groups keep stats on the number of procedures and what types are performed there and by what surgeons. My concern with your seeing a surgeon now is it seems you have something else going on besides that mild regurg. I have to believe something else in your heart isn't functioning well to be causing those symptoms. If a cardiologist you are researching has a web site with a CV posted, you can see what special research or programs they have led or been associated with that might clue you in to their specialty. My suggestion as to what to ask: instead of a "yes or no" question, you might ask, "what is Dr. Cardio's specialty within the field"? Also, check to see if there is a medical professional at the hospital with whom the cardio is affiliated who is not tied in to the cardio's practice so that you can get more objective (and intelligent) answers.

 

[tobagotwo]

A couple of things about the edema, although Nancy is probably the best source...

Salt. Get rid of all shaker salt, stay away from soups, restaurant food, and other foods that traditionally contain salt or sodium. No salt: none, nyet, nada.

Prescriptions. If you are taking a beta blocker or calcium channel blocker, or worse, both, it can relax your vascular system too much, like stretching the elastic in your socks. Your socks fall down, and so does the fluid, with no firm, vascular pumping system to send it back up. If so, your meds may need adjusting.

Invest in some diabetic socks. It couldn't hurt.

Your symptoms do sound like the beginnings of heart failure caused by valve issues or a blockage, or possible pulmonary hypertension. The valve issues at that level aren't the primary cause, unless the echo was completely faulty. Pulmonary hypertension is also a less likely verdict, but a possibility.

In my uncontritely unhumble opinion, your current cardio sucks. If you are required to stay within the group, find another in the group who will listen.

Unfortunately, it's still often the custom in medicine that women's complaints are not taken as seriously as men's. Women also tend to get small vessel blockages more often, that are less noticeable to cardiologists. You have a cholesterol issue and symptoms. I really don't know what else you need to do to get attention, other than to go ahead and have a heart attack to prove your point. If you get this type of dismissive behavior again, you need to pipe up. "Don't dismiss this. I know my body and I am extremely concerned. You should be concerned, too. If you're not, please refer me to someone who will be."

Best wishes,

 

[COLLEEN S]

Hi there and welcome! I had BVD and AVR and thoracic ascending aneurysm. I also have fibromyalgia, arthritis, and more. I would get a second opinion. If you feel that cardio was dismissing your symptoms, then yes, go.

 

[Tass]

I have a few names and will be calling to follow up on specialties. Currently I am not on any meds. (Former) doc suggested the cholesterol drugs if the new blood tests indicated it, but up til now, i've always had fairly low bp and good cholesterol numbers. He wasn't too inclined to suggest a diuretic, either.

I have some of the diabetic socks and do wear them, I prefer them to the hose. I swear that hose makes me feel worse than PMS ever did (and I know I was cranky then).

Is edema with heart problems always pitting edema?

Thanks again for the support, this forum is a blessing.

Tass