Drs. before and after Tests

[ericaj]

In reading Karlynn's post about "you have a murmur" it made me think of this.
How many times have you seen your Doctor or Cardiologist and they have been worried about the sounds of the murmur vs. what htye had heard before
or what they tell you they think is a worsening sound and get you all hyped up and then after they read the Echo they suddenly change there mind and say that it isnt any worse or your symptoms you described to them before are from something else and not the valve?

I ask this b/c twice now I have had Cardios listen to my heart and get a bit preoccupied and of the cuff mention valve replacement surgery sometime sooner than thought and they take extra time to listen but then upon seeing my echo's suddenly are not so worried about the symptoms I present with!!?

My current ACHD Cardio kept asking me if I was sure it was my aortic valve that was the affected valve and not my Pulmonic valve (repeatedly he asked me if I was absolutely positive) and on;y until I told him i'm absolutely 100% poaitive it's my aortic valve he then relented. But in his transcribed Echo report he listed the aortic and mitral valves and then the pulmonic valve as trace leakage - nothing has ever before been mentioned about pulmonic valve
in years past - so that is something new but thankfully only very mild so far. The mitral valve is mild to moderate but was also only first dx'd a few years back as myxomatous (changes due to damage from other valve in my case from hte aorta being narrowed and leaking back blood)

Anyways - although my Cardio is certain about not needing valve surgery now
he has con't. to pursue the cause of my symptoms and I hopefully will learn something new next week when I see him. (3rd time seen him in 3 months)

Whew, asorry to talk on so long, it originally just started out as a thought on Drs. and there great reliance on tests as the end all.

Erica

 

[Abbanabba]

Erica, I can 100% relate to what you're saying. I was told I needed the PV replaced, then after another round of tests was told I didn't. I've got Dopplers showing moderate-severe regurg in the PV and mild in the tricuspid, but all the heart specialists keep telling me my tests don't warrant surgery and my ongoing (and often restrictive) symptoms are from something else (..although after a million and one tests they still can't say what ..).

My biggest concern is the apparent inconsistancies with what I'm being told, but......."the latest test show things are not as bad as we thought". Mind you...... I'm STILL waiting to hear back (3 weeks later) from my cardio about my lung/holter/exercise tests. Seems their phones only take incoming calls...

I guess the old standard is "you're just suffering anxiety about your heart which is causing the symptoms..... have some anti-depressants and go away" (...me.....bitter?!!.. ..).

Meanwhile, I hope we both can get to the bottom of our woes. Good luck with the next visit.

Anna : )

 

[Nancy]

It is very important for everyone to get copies of their echoes and any other tests done. The reason I say this is because my husband's actually showed pulmonary hypertension for several years and we never knew because we didn't have copies of the tests, and it was never mentioned. I was floored when we found out about this problem when Joe was in the ER, and we found out at that time that his PH was in the severe category. He could have been spared many years of suffering had he been referred to a specialist when it first showed up in the tests.

His echoes also showed leaking of the pulmonary valve and tricuspid valve (severe), and we never knew that either. Once we went to the specialist, he was tested extensively and those leaks were determined to be secondary to his PH, and not something that needed surgery.

Seeing things in black and white is important for everyone, even if you cannot understand everything in the report. There are people here who can help you decipher things.

 

[bobbie416]

Thank you so much for this Nancy. I ALWAYS get my records and have driven my family crazy with telling them NEVER to forget to get the report and not rely on the doctors "telling" us everything is normal or OK.

Just a few weeks ago, my endocrinologist called me with the results of my latest ultra sound.I had a needle biopsy 6 months prior because of a large mass. He said no change. I was happy. But the next day daughter and I were out and about and I went in to get the copy of the report. Well, seems he failed to tell me there were "very questionable" nodules now on the left side. I called the office and called him on it. He copped quiet an attitude about "in his expert opinion" and it probably is nothing. Asked me if I wanted another biopsy.. in a very condecending tone and I replied I don't know what do you think? He replied, "I told you what I think." Then gave me 3 options- so I wouldn't feel "backed into a corner" he put it. Have another biopsy, have another ultra sound in 3 months instead of 6 or do what he thinks.
I told him I'd think about it over the Thanksgiving Holidays and I would get back to HIM. He snickered and we hung up. Needless to say, I have another appt. set up Jan. 14th with another doctor.(He also has taken no interest in my questions and brushed me off whenever I asked something..acting very annoyed that he was being questioned.)

Instead of giving me these options when he called- he chose to play God and make the decision for me to wait Maybe it is nothing-but if I didn't read the report I would never have known there was something questionable.

If we don't take things in our own hands we're lost it seems..

Sorry this was long but it has been very upsetting.. Sorry to hear abiut all your mess.. what a shame.

blessings,
bobbie

 

[Guest]

*grimaces*

I admit that I have yet to obtain copies of my tests, etc. Part of it is due to laziness and part of it is due to, without a better way to twist it, lack of interest....

*shrugs*

Not that I'm disinterested in my condition/well being...far from it. I just feel intimidated by some of the information. I was given copies of some letters that my former kidney specialist wrote to my cardiologist and PCP...and was downright shocked (in a good way, if that's possible) by some of the things noted, such as my demeanor, attitude, etc. While those views were good, I'm not sure I want to know everything my doctors think about me .

As to the "switching back'n'forth" that prompted this thread, please keep in mind that doctors are human, too. They don't have all the answers, nor can any of us be guaranteed anything. What I'm trying to point out here is that I don't think we can hold doctors completely accountable for our situations, diagnosis, treatments. Grrr....that's not sounding right. I'm not quite sure how to put it in words....guess the _bottom line_ is that things change in our environment, in us. So, what a test indicates one time may not be the same thing seen another time...due to changes within us, or even differences in the used equipment.

For instance, when I have my blood pressure checked every Wednesday morning at the Wellness Center at work, it generally is 80/40 (keep in mind, those are "ish" #s). Meanwhile, the last couple appointments with my cardiologist (about 1pm on Thursdays) have shown readings more like 110/60. I have yet to know whether this is difference in the equipment being used or changes within me...or both. And, I'm not sure how to tell for sure, either.

*shrugs*

But, then again, what the helk do I know?


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html

 

[bobbie416]

Of course doctors are human. I totally agree but I guess I am just the kind of person that has to feel like I am in some sort of control of myself and my care. I am always interested in my reports and the families stuff too. If I don't understand it- I look the terms up and then bring it to the doc and ask it all explained to me. It's my body, and I want to play an active role in what's being done to it. But that's just me. What ever works for each of us is what matters of course.

I just feel doctor's aren't god's and if they take an attitude like that with me- I'm out of there. I saw my mom be intimidated ( and she still is at 88!) but I never was. I had to learn to speak up at age 19 when my husband (then boyfriend) became very ill and have been taking on that role of advocate for anyone and everyone I can- and not being afraid of speaking up to the doc. If I have to wait for an hour or more- if I then get only 5 minutes of his time and with an atitude- you know I'm not leaving without satisfaction.

This is a sore subject with me as you can see. I just feel we as the "paying" customers aren't always treated with the respect and care we deserve.

blessings,
bobbie

 

[ericaj]

Bobbie

Bobbie

Hi Bobbie,

I veyr much side with you on your thoughts! I have a good set of Drs. now really just a matter of getting to the bottom of all the things now. With my current Cardio the frist time I met him a couple of months ago when he had just come to the Children's Hosp. Heart clinic here in WI I was a bit taken aback as when he sat down to take the history report and all that fun stuff he was leaning one arm against his head on the desk, but I quickly came to realize it wasnt because I was boring him, it was more of a relaxed position as in he was ready to take all the time we needed, to put me at ease. And after the test he ordered (Echo, EKG) he came back in and sat for probably another 20min and we talked at the door to the exam room for probably another 10-15 min. as he was busy telling me a bunch of different things that he had concerns with (any future pregnancy for instance) and his thoughts on why he thought certain things where in order.

I also like my other Drs. including my family dr. who supported me last year when all the tachycardia stuff was just getting worse and who never minded me calling her or coming in w/questions. My EP and his staff who know it is me on hte Phone before I even say who it is, my Lung Dr. and staff who have all tried hard to help me.

A great plus to me with my Drs. I believe is there wilingness to give me as much time as I might want or there ability to help even when I don't ask at appts and after and my favorite thing is my Cardio and my Lung Dr. both email with me .. I like that it is easier than using hte phone at times when we are both busy.

Monday I start seeing a Social Worker for Counseling so I also hope that she is equally as nice!

Kind of off track here, sorry.

Erica

 

[bobbie416]

I am so happy for you that you have docs that you are happy and confident with. That is sooo important for our physical health and I find sometimes more important for my emotional health!

My PC doc is a doll and he calls me right back and has given me very good imput and I feel a genuine concern from him. Never blows me off as some "nervous female".

Like this new cardio guy- my first real experience with them except for my daughter with her OHS. I go tomorrow to get the results of all my tests.

The endo doc is another story as I told you- so I am praying this new one has some better information, more knowledge and spends some time with me other than looking at the floor and running out of the room. That is just not acceptable to me. Being comfortable is one thing- but making it very clear that you are not interested in what your patient has to say or ask is quiet another.

Wish me luck.. I see the new one Jan. 14th.

I'll be sending you some positive thoughts seeing the social worker. I hope your needs will be met with care.

blessings,
bobbie

 

[Guest]

I just feel doctor's aren't god's and if they take an attitude like that with me- I'm out of there.
...
I just feel we as the "paying" customers aren't always treated with the respect and care we deserve.

*nods*

Amen. Preach it .

I completely agree. If the doctor acts like God, they don't get my respect....and I start to wonder what they are driving . But, that's just me...he he he.

Seriously, though, I cannot stand doctors who think they know everything...and can predict when someone will die. That's another pet peeve of mine...doctors telling patients they have so much time to live. I'm rather surprised that nobody has sued a doctor for being wrong on this....after all, doctors can't be sure that we won't get hit by a bus en route home....let alone die in 3 months from a disease.

*shrugs*

And, I agree about the "paying customers" attitude. That, of course, goes for any type of business, as far as I'm concerned.

*turns to Erica*

Good luck with the Social Worker!

 

[Karlynn]

*nods*

Amen. Preach it .

I completely agree. If the doctor acts like God, they don't get my respect....and I start to wonder what they are driving . But, that's just me...he he he.

Seriously, though, I cannot stand doctors who think they know everything...and can predict when someone will die. That's another pet peeve of mine...doctors telling patients they have so much time to live. I'm rather surprised that nobody has sued a doctor for being wrong on this....after all, doctors can't be sure that we won't get hit by a bus en route home....let alone die in 3 months from a disease.

*shrugs*

And, I agree about the "paying customers" attitude. That, of course, goes for any type of business, as far as I'm concerned.

*turns to Erica*

Good luck with the Social Worker!

It took me about 5 years from first learning of my MVP to realize that I was at the steering wheel of my heart care and not the doctors. Unfortunately I learned because of having 4 pretty bad doctors (for various reasons) in those first 5 years. After having bad doctors, you know the good ones in an instant.

 

[ericaj]

Karlynn

Karlynn

Karlynn,

If your thoughts arent the absolute truth what is????? It is good to feel in control of the medical steering wheel, no matter how sticky the wheels or the controls may be!!

Erica

 

[bobbie416]

One of my pet peeves tooo - the one about predicting how long some one has. I've known people that were given a few months and by the grace of God they're still here 20 years later. No one human being could ever convince me they would be privy to that kind of knowledge. Of course, we use our commonsense- and sometimes the prognosis really looks bad. So we do everything we can.

Just had my visit to go over my results of my echo and bloodwork. Echo is good. Nothing changed since 5 years ago. All systems are good. Thank God.
My blood pressure is down, as is my heart rate and palpitations due to a small dose of a beta blocker. We have decided I'll be taking Provachol for the high choles. and to keep that CRP down. He didn't "tell" me what to do. We talked about options and I made the decision. This is a doc I want to keep.

I left feeling he was concerned, cautious, listened to to me and thought I knew what I was talking about. I felt empowered and thankful. I feel I am on the right track and look froward to much improvement with those numbers- along with meds- diet and exercise. I feel good about the decision and will be vigilant to watch out for any signs of sidde effects etc.

I'll keep preachin the word! "To thine own self be true". That's been my life's philosophy..

God blees you all and be well.

blesdsings,
Bobbie

 

[perkicar]

Ain't it the truth!

Ain't it the truth!

It took me about 5 years from first learning of my MVP to realize that I was at the steering wheel of my heart care and not the doctors. Unfortunately I learned because of having 4 pretty bad doctors (for various reasons) in those first 5 years. After having bad doctors, you know the good ones in an instant.

I too just changed cardiologists. I had been going to a female cardiologist I met through the "Women's Heart Center" at one of our local hospitals. You could go and have health screenings done, learn about your risk of heart disease, yada yada yada. When I needed a cardiologist I thought of her immediately. I had to make the referral myself (thank goodness my insurance would let me) since at the time, my primary doc didn't think I needed to see a cardiologist since I'd had a normal echo several years previous. That's a whole 'nother story.
I changed because I had a terrible time getting information out of her. I had DOE last winter and my PCP sent me to have a stress test. I never heard ANYTHING about the results and even worse, my pCP never even got a copy of the report. As a nurse in a critical care area, we get to see the cardiologists at work. I worked with one on a young patient with CHF and was pretty impressed with him and how he communicated not only with the patients family but his students and the nursing staff. He would hunt ME or whatever nurse had this patient down before he ever went in to see the patient. Many doctors don't acknowledge that the nurses know the patients much better than the attending physicians, at least on our unit (a bone marrow transplant unit). We see them day in and day out, and are more in tune with subtle changes that not everyone notices. But I digress....
So when I had to choose a new cardiologist, I went with this fellow and am VERY glad I did. And I already have a copy of my TEE results.
Carolyn

 

[Guest]

It is good to feel in control of the medical steering wheel, no matter how sticky the wheels or the controls may be!!

*grins*

And, ya'll know how much I love to be in contro of that steering wheel .

*chuckles*

Bobbie, sounds like you had a good experience and a good checkup....excellent news .