Need info

[LoriSue]

Hi guys, I know it has been a week or so since my first post but I have been lurking ever since. You guys all helped immensely. It helped me to get out of the "victim" mode and stay in the "in charge" frame of mind. I went back into my PCP and told him that I wanted a refferal to a cardio. He told me that although he couldn't attribute my symptoms to any other cause he felt that the valve was not the problem. He said I had had the echo done and the Persantine Stress test and they didn't indicate surgery at this point. I pointed out that when we did those tests 18 months ago I wasn't having the symptoms I am having now. I also pointed out to him that in the last six months I have become so bad that I have to take a nap every 4-5 hours. He said he would make the referral but he wanted me to do some other stuff first. He took me off my digitalis (I feel worse now by the way). I left his office and found someone else to give me a refferal who scheduled another echo for me on Tuesday. What I want to know is this....how were your numbers (surface area, etc) prior to surgery and how were your symptoms correlated with those numbers? I know everyone is different but this would help me a little to get more information. I don't have my numbers from the previous echo but I am having the echo done at the same hospital and am going to request a copy of the report when I am there so that when this one is done I will have both for comparison. While I know it is not my job to diagnose, I now feel the need to hold the doctor's accountable. I also plan on incorporating some of this info into my lectures. I teach Anatomy and Physiology at local college. Maybe if I am lucky I can sweet talk the Tech into getting me a picture for educational purposes to show my students. I found if you ask the Tech about himself and why he likes his job he pretty much is agreeable to conversation.
Give me any ideas you may have, your input makes all the difference in the world!

Thanks,
Lori

 

[Ross]

Don't be buttering up the techs, they'll drop you like ice if you really try to pry info out of them. They don't want to risk losing their jobs. Now if you take them a steak dinner...........You might get a little inside info.

The numbers thing. All I can do is point you to yet another website for your educational enjoyment. Perhaps others here can help with the numbers.

www.echobyweb.com

Normal Diagnostic Values Here

 

[LoriSue]

Thanks Ross,
Everything you guys can tell me helps immensely. I never paid close enough attention to that kind of stuff when my mom, grandma, and aunt were going through it.
Thanks a million,
Lori

 

[bethanne]

Hi Lori,
I am one of those whose numbers did not match up with my numbers. I left the cardio's office without the latest copy so I don't have them to share. However my blood pressure was up to 160/90. My cardio said that the valve was not necessarily causing the blood pressure but the blood pressure with the valve regurgition was contributing to my symptoms. The blood pressure med he gave me is specific for being beneficial for high blood pressure and preserving the valve. Also my cardio was not pleased that my pcp handed me over an antibiotic (3 weeks ago) without confirming my symptoms were from an infection versus complications with the valve. (I may not have this info exactly correct as it was alot of info to take in. I am still adjusting to the meds, then I plan to research to make sure I am understanding correctly. Maybe Nancy, Al or Tom or... can correct me here if I am wrong..)

What I am learning is that if you have valve disease congenital or chronic you need to be under the care of a cardiologist. They understand the dynamics differently than your pcp. Your primary care physician, in my opinion, does not fully understand the implication of your condition. I am glad you have moved on.

Also my cardio is concerned about my symptoms even though my numbers are not the typical high numbers associated with replacement. I am glad because several have posted that the surgeon review of the excised valve is often worse than echos showed. Your symptoms are important....

 

[Nancy]

Hi Lori-

You did the absolutely right thing. I'm glad you got someone to help you. Your symptoms speak volumes. You, without a doubt should be under the care of a cardiologist. That's where people with valve problems need to be. You will also have to have the care of someone for your overall health. Sounds like you will be shopping for that.

Let us know how things go.

 

[LoriSue]

Bethanne, I it is interesting to me that the other posts refer to the fact that a cardio had said the echo didn't reflect the actual state of the valve. In all three cases in my family, each surgeon came out and said that the valves were worse than the echo showed. In my mom's case the surgeon said after the cath that it was worse than the echo showed and after her surgery the surgeon told me that the valve was worse than the cath showed. One positive note though is that at least there is a diagnostic test to find the BAV so that we have the opportunity to obtain proper medical care. I am also glad I learned of the valve 18 months ago and can take proper procedures to help myself. One big concern I have is that at work I will be exposed to multitudes of Staphylococcus aureus and some strep strains. My lab is in the same lab as the Microbiology lab and the incubator for the pesty little microorganisms is in the same room. I am familiar with aseptic techniques but while students are learning about Microbiology they have a tendency to make mistakes or to not be so diligent about preventing the transmission of pathogens. I know I need to be extra careful. If anyone has any ideas about preventing infection while being around colonies of strep and staph (along with other bacteria) Let me know. It is kind of scary when I stop and think about it.
Lori

 

[bethanne]

sounds like a good question for your new cardiologist. When I first found this site that was the first thing everyone said was your symptoms tell alot.

I also saw a post (i'm not remembering where at the moment) that someone had the oppostite experience ... their numbers were close, but they are opting to not have surgery because they are not symptomatic.

I guess the important question for a cardio appointment is what symptoms to be most concerned about. For me, it was my feet swelling that got my attention.

For your other family members what were the symptoms they were most concerned with before surgery?

I am also looking for an internist as a primary care physician.

 

[LoriSue]

My feet are swelling like BALLOONS! My PCP told me it was because I am getting older. I am only 40, I think he is full of crap. That is why I am going somewhere else.
My other family members had shortness of breath, fatique, and some blood pressure issues with arrythmias and each one was to a varying degree before they changed their valve. My mom changed hers before she even had symptoms that I have now. Her big concern was that she was finding it difficult to hike (she couldn't get up Mount Saint Helens for the fourth time). I don't think I was ever in that good of shape! My grandmother seemed to feel about how I do now. Naps a couple times a day, easily exhausted without much effort, feet swelling, feeling like you can't breathe but you know you are, arrythmias, etc. My aunt had her first one done before I was born so I don't know too much about her symptoms. She had a second one done not too long ago but she lives in England and though we had talked about it I didn't get to ask all the questions I would have wanted to. So I don't know a lot about her symptoms. I know her first valve was a cadaver valve and it was done very early on in either 1959 or 1960. She was one of the first I believe. She had it done at Mayo's that one lasted for a good thirty to forty years (I can't remember when she had the second). She has a mechanical valve now but I don't know which one. Mother has a porcine valve (hers was done February 2003) and Gramma had a mechanical put in at Mayos around 1983 or 1985. My gramma is still alive but suffers from dementia and so the only info I have from her is what I observed from watching all these years. As a matter of fact when my mother commented that they both have matching scars gramma looked right at her scar and said "I don't have a scar....what are you talking about", her eyesight is exceptional by the way, she is just not too cooperative. All women in my family have taken stubornness to an art form. I am going to use mine to make sure that I find a doctor who will listen to what I am telling him about how I feel and properly address
the symptoms I am having now.
Thanks for the reply, it helps me a lot to hear from others and get their view points on things.
Lori

 

[LoriSue]

Ross,
Thanks for the web sites!! They are sites a Physiology Professor can truly love. I am sure my students will thank you immensely (HA HA) I have a tendency during lectures to go to web sites, via my projector hooked to my laptop, that will demonstrate topics I am discussing, there are a few shots here that would be great.

Nancy,
Thanks for all the support your experiences are helping me understand what I need to do and giving me the diligence to do it.

Lori

 

[Bryan B]

Lori,

As far as aseptic technique, just follow it assuming that you will be exposed to the bacteria. Gloves, mask, protective eyewear, gowning, washing before and after, whatever the protocol is. And if you have any cuts, lesions, etc. you may want to use extra precaution. Whenever I've worked in a "clean" area requiring aseptic technique, I've always assumed "worst possible scenerio" as far as protecting myself.

 

[Nancy]

Lori-

Because of Joe's valve and other heart problems and also because of his pulmonary hypertension, it has become abundantly clear that the echo cardiogram is a very inexact test. A lot depends on how good the tech is who's doing it, also the doctor can order or not order certain things. And then most times, a remote doctor reads the echo and sends his interpretation of it to the cardiologist. A lot of surgeons like to read the echo themselves.

In the world of pulmonary hypertension it is considered not accurate at all, just a "snap shot", with measurements varying by 20 or more points. The gold standard there is the right heart cath.

One of the best things about the echo is that it is non-invasive, so can be ordered as often as the doc wants.

Joe's last echo is a perfect example of what I would consider a pretty poor echo, and it was done at a wonderful hospital, with supposedly very high standards. The tech could visualize 0 out of 4 heart valves. She was able to get some measurements. But really, 0 out of 4???? When I questioned the card, he told me that they do not put up with poor technicians. So, if that is the best that they can do on Joe with his 2 mechanicals (which should have shown up), really makes me wonder.

If Joe were in deep trouble and only an echo was ordered, I would be very unhappy, and would consider it poor medicine. Thank goodness, at the present time, he's fairly stable.

So if I were you, I would push for as many tests as you possibly can. Something's going on there. It needs a diagnosis.

 

[LoriSue]

Bryan,
Thanks. The microbiology class will be going in my lab until the third week in august so I need to make sure I don't get lazy about these issues. I haven't had endocarditis but I do know that it is something I don't want to have to deal with. My class shares this lab with the micro class and I have talked to the Instructor about this issue and he understands as he is a former Anatomy and Physiology professor. But I also know that professors can't see everything that goes on. He did assure me that he would pay careful attention to the students and their actions. I do trust him though because I am a former student of his and know how diligent he can be. Wish me luck.
Lori

 

[Harpoon]

Feet swelling? How about your hands???


That could be fluid retention, another nasty side efect of valve regurgitation...


I'll say that the echo isn't very reliable for establishing the structures of a heart valve, wheither it's damaged or not. They can see big problems like if you've got a bicuspid valve or some other major deformity in the structures of the heart, but small stuff is hard to pick up because of the nature of the images the tech and the cardiologist are looking at. It's more useful for the doppler effects, measuring flow of blood through the heart, establishing some pressures and other information like blood mixing or backflow (regurgitation)

The day before I was scheduled to have surgery I had a pre-op echo and they thought they saw a "vegitative mass" on my tricuspid valve, basically an infection. They started gearing up to treat that infection with heavy antibiotics before they could do surgery (maybe a 6-8 week stay in the hospital) when my kidneys crashed through the floor. They all took a second look and decided, lo and behold, I HAD NO TRICUSPID VALVE.

Whoops.

The valve had disintegrated to the point of being almost unrecognizable in an echo and I was rushed into surgery that night to get my spiffy new St. Jude's valve.


They're in "beta-testing" for a newer, three dimensional echo system now. They've been using it in studies on expectant mothers and they seem to be moving right along. Using it for sonograms is fairly low risk to patients because they're not trying to diagnose anything serious, just "playing with their new toy" while using the other diagnostics to do what they've been doing for years.

maybe the 3-D echo's will give a better picture of what the heart really looks like. Right now it's all 2-D slices at selected depths into the chest which take a lot of interpretation on the part of the person viewing the study to make out.

 

[Bryan B]

Harpoon,

My last echo was a 3D...and it was cool! The tech let me watch and she took a picture and was able to turn it all around and look at it from all kinds of different angles. The echo I had a couple of months earlier was a 2D bubble echo and it showed mild aortic regurg and normal mitral and tricuspid function. The 3D showed moderate aortic regurg with calcification on one of the leaflets and moderate tricuspid regurg. Considering the two echos were taken about six weeks apart I found it interesting how different the results were using the 2 different machines.

 

[bethanne]

I am concerned for you. I am glad you are looking for another doctor. You sound like a very strong person, who like many of us ignore our signs and press through them. I'm glad you are paying attention and doing something about it.

Keep us posted with the new doctor!

 

[Rush20]

Good luck with your search. It's always important to listen to your instinct or "gut" during times like this.

I went from diagnosis to surgery within 4 weeks. I had a severely leaking aortic valve that upon operation was discovered to have holes in it due to bacteria from a dental procedure.

In relation to your condition, my PCP (Although a nice guy) after both my stress and echo test was about to dismiss me with the "take an aspirin a day" approach when he asked me (?!) if I would feel better if he scheduled a referral (insurance term ) to a cardiologist. As laid back as my PCP is, the Cardio was very conservative. Needless to say, my PCP was very apologetic upon the immediate diagnosis from my cardio for replacement surgery within 10 days. Amazing!

Trust your instinct. You know what's right for you.

 

[bethanne]

Allen,
I would be curious as to your symptoms that led to your stress echo with your pcp. You can private message me if you would rather not post the details here.
Although I do not have the cause, I have had a sudden onset of a slew of symptoms that has my cardiologist saying it is time for surgery. I have a stress echo next week. Hopefully we will have a better understanding of what is going one with test results. My 2d echo did not reveal anything significant.

Thanks for sharing,
bethanne

 

[Granbonny]

LoriSue

LoriSue

When my Mom died...I started having a funny feeling something was not right. Went to my PCP..He said..stress..He sent me to ENT doctor..for fullness in throat.. Gastro guy...all test run...He said acid reflux..Never had it. I had every test run..x-rays..cat-scan..MRI...Nothing..Finally 3 months later..PCP said go see a Cardiologist... I had NO symptoms of heart problems...just think my PCP had run out of things to suggest for me to do...Cardiologist..order a cath of heart..found a 5 Aneurysm on my valve..operated on 3 days later. Doing great 2 years later. Mech valve...Same thing for hubby..Cardio ordered stress test..then the cath of heart...Found he had CHF..but meds are taking care of that.. I am a firm believer..get a Cath of Heart..It will show everything.. Ask your Cariologist for one Simple..just have to lay still for a few hours after..then you can go home....Bonnie