Patient Vigilence

[MelissaM]

Recently I heard the term "patient vigilence" and thought it to be an interesting concept. The notion was that we, as patients, are part of the patient-doctor team, and how vigilent we are can contribute to the level of our overall care.

So. . .my questions is: how vigilant are we as a group? It seems that just by being here, we are taking an active role in our health. But beyond that, there seems to be some varience on how much we choose to take on vs. how much we let our doctors take on.

What do you think?

 

[Ross]

Hey where's your vote?

I'm pretty vigilant. I could sway to totally, but many times my questions don't get answered by my Doctor because he knows that I'll go parafreak on him. I still want the answers though. I don't like being placed somewhere and having things done when I don't know what direction things are going.

 

[fyrfytr]

I am pretty vigilence, I don't like them to do things to my body that I don't what it is about or what to expect from it. I also don't like a Dr. that will not answer your questions.

Dave
_____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[MelissaM]

I am totally vigilant - probably annoy the heck out of my docs. I tend to want to know everything about everything, be totally involved and want to second guess everything the doctor does.

I feel medicine is best practiced as a partnership - the doctor can do everything in his or her knowledge, but ultimately, I am the only one who knows how it feels inside my body. Generally, my gut tells when something feels right or not. I tend to believe my gut over some of the medical advice that is out there - medicine is an art as much as it is a science. If I can gather all of the information possible, bounce it off how I am feeling inside, and help the doctor make an informed decision, that feels right to me. As a result, I am super-involved.

Or maybe I am just a control freak.

 

[hensylee]

We all need to question. I learned the hard way that things done by doctors can permanently damage your body - i.e. my brother. And now me. I am still suffering hip damage from a May, 2003 abdominal surgery and nobody can tell me what happened, how it happened or what is wrong, and the surgery had nothing to do with hips! Obviously one can't oversee when under anesthetic! The hip doctor didn't believe me when I told him my story and his treatment was painful - so I quit going. Am pondering what next step. Anybody know anything about chiropractors - because I think something has been pulled out of joint.

Be vigilant. Study your meds, check your doctor's certificates, ask questions. All doctors are not as good as we think they are. And search the internet as most answers can be found somewhere. We never can get all we need, but we can sure try.

 

[BillCobit]

I'm w/ Melissa

I'm w/ Melissa

I'm w/ Melissa - I try to corroborate everything I'm told with an independent source...and I ditch doctors who aren't up to speed with current practice & knowledge. The fact that I've found so many discrepancies and received clinically unsoud advice reinforces my behaviour.

 

[bvdr]

I am very vigilant with most medical things but I sometimes don't bother to research. For example: I have been on Moduretic for going on 20 years and have never researched effects of long term use.............but now that I've thought about it I'll end up doing it.

 

[LUVMyBirman]

Totally vigilant! I can be very pesky patient on the part of my docs. Had a few awful mistakes happen to me on the doctors part....so my trust threshold is very low for most.

Treated the nurses in the hospital with the utmost respect.....it goes a long way believe me. Was told time and time again what a great patient I was! It would be like biting the hand that feeds you so to speak! They are overworked and underpaid if you ask me.

 

[hensylee]

Gina I agree - they are our lifeline and sadly, many doctors treat them like dirt. My nurse cousin can tell some real horror stories.

 

[Karlynn]

I used to be totaly vigilant because I started out with a few pretty rotten doctors. Once I had a doctor I trusted I became pretty vigilant, but I still ask a lot of questions. Just last week my doctor was going to lower my coumadin and I thought it was too much, so we discussed it. I filled her in on my reasons for suggesting a different dose and she agreed. I only have myself to look after. She has many patients to keep track of, and I can't expect her to remember everything when on the phone with me on a Friday afternoon. But I trust her overall, I just don't expect her to be Super Doc. Now I also haven't had any major tests done under this doctor. I've only been with her 4 years after my Super Doc retired. The biggest test I've had while seeing her, is a Stress Echo.

Karlynn

Ross - I think I know how you spend your free time - looking for crazy Avatars. keep 'em coming.

 

[KimC]

I think it's vital to be vigilent. Specialists tend to be arrogant, overworked and abrupt in my opinion.

FOR EXAMPLE: Last Thurs. I had a contrast echo to check for an intracardiac shunt. I passed the test, thankfully but afterwards my doctor said that he won't need to see me again. The he walked a few steps, turned around and grabbed my hand saying, "Oh, that's right. You have aortic insufficiency. I'll see you in six months!"

I was shocked that he had performed the echo without even looking at my history. Reason number 6,000 that I'm heading North for a second opinion.

 

[Susan BAV]

For years and years I had doctors that always treated me with my heart condition first in mind.

When we moved here though, a family doctor that we ended up going to for several years, asked me (at least) TWICE if the scar on my back (from my aortic coaractation repair) was from lung surgery! He was always surprised when I told him what it was from! And his ***** nurse, seriously, could not take blood pressure! I had severe headaches for two years before the (regular) cardiologist's visit caught it... 178/138 that day! When I was sent back to that family doctor with the BP information, well, you wouldn't believe the ridiculous response I got from him. (Maybe you would.) I changed doctors.

And the cardiologist I saw this past January told me that I "might never need the bicuspid valve replaced," and "come back in a year or so for another echo." My husband and I came home and did just a wee bit of research on the echo gradient and the symptoms and saw clearly that his recommendation was way off base. We consulted with three surgeons and they said I would probably only live 1-3 more years if I did not have surgery. (So, technically, the cardiologist was right... if I died, I wouldn't need the bicuspid valve replaced, right?) Surgery is next Wednesday, three months short of that year. My husband is still furious about that other *****, and I have very rarely seen him furious about anything!

So, yes, do your homework! But it is exhausting and frustrating to have to be on top of all of this stuff! But, "Bakers eat their mistakes; doctors bury theirs." Hope that doesn't sound too cynical... I must be in a mood. ~Susan

 

[KimC]

Whoops, I meant to quote Susan's joke re: bakers and doctors. I died laughing! Literally! (OK, that was bad).

I just re-read my last post and hope that the gracious Southerners, (pronounced Suh-tha-nas) in our online community weren't offended by my insinuation that northern doctors are better. That's not what I meant, (although remember who won the war). ;-) I meant that I'm heading North to see a cardio who lives in the same town where I grew up.

I consider myself a Southerner, although you won't see my flying the Confederate flag like they do here before highschool football games!

 

[Karlynn]

Susan, I think your experience is an important lesson. Never take a doctor's word for it. Do research to confirm. Thank God for the Web, it really gives us the ability to be informed first hand about our own health. I guess I rated myself pretty vigilant because I've been incredibly vigilant for so many years (do to rotten doctors like you've experienced) that I just take it as a normal thing that I always ask questions and verify information.

The first doctor I went to 18 years ago when I began having problems with my MVP during a pregnancy, told me it was all in my head. "No one has these problems with Mitral Valve Prolapse Mrs. Anderson." 6 years later, I asked my surgeon if he could send what was left of my extremely deteriorated valve to that doctor. He laughed, I was half serious. I wanted to put a note on it that said "It wasn't in my head, but not much of the valve left in my heart either."

Karlynn

 

[hensylee]

Kim - gotta be Alabama (probably), Ga or Miss you speak of. I don't fly the old flag either, but I think it might be at the courthouse. This section of Florida is truly deep south. the rest of Florida is north.

 

[MelissaM]

Over the past three months, I have had the priviledge of seeing doctors/cardiologists in:

• Boulder - PCP, cardio, surgeon
• Denver - surgeon
• Cleveland - cardio, surgeons
• Lancaster - cardios
• Bel Air, Maryland - cardios

Wow! All I can say is that diversity among doctors is as vast as the diversity among our general population: there are great cardiologists, complete dorks, uncaring doctors, completely compassionate doctors and everything in between. For me, the lesson is to find someone who suits your style ( if at all possible), because there is a wide range of options out there.

Meeting some wonderful cardiologists while on the road makes me question going back to my abrubt, egotistical cardiologist once back in Boulder. He is a highly-regarded cardio, I now know that there are cardiologists out there who are well-regarded AND compassionate.

If you are not happy with your doctor, keep looking!

Melissa

 

[weekycat]

I guess I would say I'm pretty vigilant. The first cardiologist I ever saw in my life was 6 months prior to my surgery. He told me I might need mitral vavle surgery 5 or 10 years down the road...or maybe never. He did stress that I needed to come in for an annual echo though.

Sometimes I wonder what would have happened if I hadn't asked the nurse that was scheduling my hysterectomy, (5 months later), if I should see a cardio first because of my MVP. She said it probably wouldn't be a bad idea just to get it checked out.

I ended up seeing a different guy, who told me I should hold off on the hysterectomy and get my valve fixed first! It had gotten a lot worse in just a few months, and although my PCP says I probably would have survived the surgery, it would have put off the repair for a while.

I do trust my PCP, but I'm a little leary of some of the cards I have met, unfortunately two of them that I did like and trust are no longer with the group, and the last guy I saw I didn't like or trust as far as I could throw him. The thing is; he told me to come back in 2 or 3 years, so now what?

 

[Nancy]

So-- Go back in two to three years, but in the mean time, go shopping for someone else and go to see them in a couple of months.

Makes EVERYBODY happy. And if you like the new guy, well, the two to three year date is off.

 

[Guest]

I responded with "pretty vigilant".

Because I am.

But, I do believe that most, if not all of us, would be considered completely vigilant, compared to the bulk of the population that does not have some type of chronic issue to handle....

I say this because of our company's new insurance "plan" for 2004 which I posted about some time ago here. It seems to "target" those of us with chronic issues, forcing us to pay more and offering to help us "manage" our "disease" more...when, in reality, it is those that do NOT have a chronic issue that need help in managing their care. We as "chronic people" tend to be a helk of a lot more vigilant than those who are not "chronic people"...because we keep up with our doctors, and thus, know more about medical possibilities and prescriptions than the "normal" person.

At work, someone with chronic asthma posted about how the new health insurance plan discriminated against those of us with chronic issues....the response was to tell about all of the different programs available to us to help "manage" our care...did not seem to address the issue at hand...that being that those of us with chronic issues will now think twice about going to a doctor...or taking a new medication...which could cost us our lives. We'll see what they say next....(evil grin here).

Cort S, pig's valve & pacemaker-enhanced 30/swm
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[hensylee]

Cort - sounds like politics, as usual.