Check up frustration

[Guest]

*glances warily around the room*

Not even sure why I'm posting this, as I should get it straight from the horse's mouth first.

But...

*sighs*

I don't even know where to begin....

(And, if you are on the other heart boards of which I am a member...I apologize for the "duplication", but I know people on each board are curious as to how my checkup went...easier, thusly, to simply "cut and paste"....no offense meant, btw.)

Perhaps the good news.... My checkup last Thursday revealed that the arythmias (sp?) are gone and the pacemaker is currently good for 23 months.

That's, unfortunately, where the good news stops.

*pauses*

It's hard to admit this...but, apparently, I don't know my own condition that well.

Let me back up....

My cardiologist wasn't there (apparently in clinics), so I saw someone I had never seen before. Not very comforting, tho, at some point, you have to have different doctors (i.e. moving, etc.).

Then, the echocardiogram couldn't be done because they got backed up....

The kicker was when the cardiologist I did see thought that the Cozaar I'm taking was prescribed for my heart condition.

*red flag bursts up*

Eh? What?

I kindly informed him that the Cozaar was prescribed by my PCP to lower my blood pressure which, in turn, lowers the protein going through my urine, and thusly, reduces the scarring in my kidneys.

He looked at me a bit surprised.

I asked him why the Cozaar would be beneficial for my heart.

To help stop the leaking, was his reply.

*red flag waves wildly*

Eh, what? What leaking?

This is, unfortunately, where I played a bit "dumb"...basically because I had no idea what he was talking about.....

I _thought_ that "Truncus arteriosis" meant that I was born without an artery (which I was) and it was corrected with the pig's valve.

No...apparently, it has to do with leaking, too.

*shrugs*

He pointed out that you could "feel" the leak by touching my chest.

OK.

I felt it. But, that's the way my chest has always felt. I _thought_ that was simply my heart murmur. But, no...it is leaking....? Or, is a murmur leaking and vice versa?

*scratches head*

*pounds head on table*

I'm so confused...and a bit frustrated...and not sure where to turn.

*pauses*

No, I know I need to contact my cardiologist...which I fully intend to do...but, at the same time...well, I guess I feel a bit "stupid".......for not knowing my own condition as well as I thought I did.....

The appointment resulted in the Cozaar dosage being increased from 100mg/day to 150mg/day. I also have an appointment scheduled for November in which they will do an Echo first thing to monitor the aforementioned leaking.

I know other friends/family (I've told my parents and sis, obviously) are wanting to know how my appointment went, but frankly, I don't know what to tell them because, even reading what I've written, I feel like I sound like someone who has no freekin' clue what his condition is....which unsettles me more than driving a front-wheel-drive "monte carlo".

*sighs*

Which reminds me...it's been about a year since my 2000 "mc" got flooded! Woohooo! Party time .

*pauses*

Not sure that I'm really posing any questions here...just venting I guess....

Thanks for reading (if you've made it this far).

Cort, "Mr Road Trip"/"The Uniter", 30swm w/pig valve & pacemaker
member & newsletter editor, Faith COB, Batavia IL
"Mr MC"'s Family...& train & models = http://www.chevyasylum.com/cort/
K's BL = http://forums.demonsoftware.com/index.php?showforum=15
Spotting MCs = http://www.chevyasylum.com/mcspotter/main.html
MC's Future = http://www.projectmonte.com/petition/

 

[Karlynn]

Cort, why are they waiting until November to do an echo, when apparently they were going to do one this time, but it got bumped?

Let us know what your own Doc says. This is the problem with seeing new guys.

take care!

 

[Guest]

*grumbles*

I knew I'd leave something out...lol.

They aren't doing the echo until November because, according to the cardiologist I saw, the upped dosage of Cozaar will help stop/eliviate the leaking enough. He told me his goal is to keep me from more surgery......

And, yeah, alarms were going off in my head when he said that.

But, I FEEL fine.... Yeah, I've been sick off'n'on the last few months, but my PCP has run numerous tests...all point to nothing wrong, but stress....

Heck, I'm not even sure of the symptoms of a leak.......lol.

*sighs*

 

[Abbanabba]

Ummmm, I'm wondering if the reason you don't know so much about your condition is because the doctors don't know that much about your condition either, or they've not been giving you the full story....

....not like that's ever happened before..!!!

I'd still be pushing for an echo before November though, even if just to make sure that this extra dose of Cozaar is doing what it's supposed to be doing with the leakage.

Keep us posted Cort!

Cheers
Anna : )

 

[Ross]

Cort don't dive off the deep end buddy. They gave me Cozaar to try to slow the leak and to control blood pressure, but I knew I had a major leak. No offense bud, but I think this new guy is a bit off base. Cozaar or not, that echo needs to be done now, not November. If it truly is leaking, why does he want to mask it and then check it. I'd want to see it at it's worst to even determine if meds can do anything at all. Just my thoughts. Not trying to further frustrate you.

 

[Shine_on_Syd]

check up and hotel room

check up and hotel room

This is what makes me wild about cardiologists and PCPs. I get the impression that they deal with a lot of coronary artery disease patients and don't understand "us". When you are talking about the level of care that is needed for valve replacements i don't find them all that helpful. While I am not a medical professional, I make it a point to study as much as I can before an appointment. I keep copies of all my files, I practically have my operative report memorized verbatim, become conversant on all my echo stats and study information about meds and such before the appointment.
All I can say Cort is that I often feel like I know more than them and often get the "I?m not sure reply" when I ask some detailed questions.
I'm considering a roomie in Golden. Haven?t asked my boss for the time off yet, What days do you have the rooms for?
Jim

 

[Guest]

Ross,

I'm not goin' off the deep end . I know my post may've sounded like I am...but no, my evil twin is not coming back. He checked the echo done a few months ago and the EKG done Thursday...as well as a "physical" listen to me...and decided that an echo really wasn't warranted. Apparently, it may not have been scheduled to begin with..... *shrugs*


Anna,

Very true. Then again, I read and hear about all these other patients that are A+ on top of their condition...and I get to feeling a bit "inadequate"....lol.


Jim,

I have the rooms booked for Oct 14, 15 & 16. I probably will cancel Oct 14, depending on when I actually arrive in Colorado.... And, I hear ya....lol.


Other notes:
I have left a message on the nurse's line, requesting my cardiologist to call me to discuss the leaking, etc. Unfortunately, I neglected to mention whether or not she felt an echo was needed before November. I figure I'll ask her that when she calls....

As for getting an echo done before November, I'm going to push to have the echo done in Elgin. I _hate_ taking a vacation day for a 2-hr drive into Chicago (yes, during the week it sometimes takes us that long to get into Chicago) followed by a 2-hr drive back home.... *sighs*

 

[Ross]

Well alrighty then, that's what I wanted to hear.

 

[Nancy]

When you get your regular cardiologist on the phone, make sure to explain everything that was said, the dosage change and have HIM/HER give you his replies, one by one. Make your list and have it handy, so you won't leave anything out.

There is a LOT to be said for being seen by someone who is familiar with your own particular heart and lung sounds. And, not every doctor is perfect at interpreting body sounds.

If your echo was supposed to be done at the time, make sure that it is done asap. Waiting until November is not right.

Hopefully, it's just a matter of the new guy not being familar with you.

But there is also a lot to be said for a fresh pair of eyes to bring some potential problems into the light and most of the time, it's just something that is normal for you.

Keeping my fingers crossed for you.

 

[Guest]

Ross,

LOL! Glad I could tell ya what you wanted to hear .


Nancy,

I'm big on lists....so I shall have that in front of me...LOL! And, I do believe that your comments/post personify my "lackadaisical" (not _quite_ the correct word...but getting there) attitude about this. I have a feeling it's a matter of the guy not being familiar with me; as I mentioned before, he thought the Cozaar had been prescribed by my regular cardiologist, and she hadn't.... Then again, maybe his perspective will open up some new issues and ways to handle/correct things.... I dunno.... Either way, I can't control it...so I'm not letting it get to me...yet....after all, I have a whole freekin' summer planned

 

[epstns]

Cort - I'd have to go along with the group suggesting a consult with your regular cardio ASAP, and press for the echo now rather than in six months. As Nancy said, go over each of the "new" doc's points individually, so that you and your cardio can both process what was said, and you can get the regular cardio's reaction. That would also be the time to ask if your regular cardio has noted any significant leakage, and if so, why there hasn't been a discussion of same. (Is it possible that it was mentioned as "insignificant" but that you were overloaded with info on another point and just didn't take it in?)

One good indication so far -- they aren't rushing you off to more tests or specialists. That must mean that they feel things are stable enough to wait another six months to monitor.

Hang in there -- we're here for you, bro.

 

[Lisa]

I echo the comments of Nancy and Steve. Go over everything with your doctor and push for another echo. Good luck.

 

[Guest]

*sighs*

My cardiologist did not call today..... Don't know whether to laugh or cry...lol. I'm exhausted from this whole situation....

Steve,
Yes, I've wondered that myself...that the leaking has been mentioned to me previously and I was too overwhelmed (or overjoyed at little to no issues) to take full notice of what that meant, etc. And, that was sorta my thought, too, that if it was that serious, the cardiologist I did see would've made me stay or come in again within the next week.... And, thank you!

Lisa,
Thank you...and, as soon as my cardiologist calls me, I'll be asking some detailed questions .

 

[LUVMyBirman]

Hi Cort,

I am so sorry to read of your recent plight. From my experience in stressful medical matters that have received prior intervention........everything turns out ok and passes.

Want to say.......don't worry about it! Sometimes easier said than done right? Please try to take it easy.

Will keep you in my prayers friend

 

[tobagotwo]

It may not be all that it sounds like. I agree that the new doctor may not be all the way in the loop on your condition.

And don't feel bad that you weren't totally aware. I took some doctors' statements at face value, and the result is the thread "Fuming." So, you're not alone. Many of us have been "seduced and abandonned" by physicians who misspoke or even mislead. It's plain embarrassing.

I have an echo coming Wednesday (wish I could give you my time slot). My cardiologist says, "they all leak." If he's right, then you fit in just fine.

Maybe your original cardio can help straighten this out. It could easily be a misunderstanding by the stand-in.

Hope the news is good,

 

[Guest]

*sighs*

Hensylee's idea of fixin' me up (in "the" thread) would come in handy right about...well, now....

*rolls eyes*

I'm not sure which is more frustrating to me...having to take yet another freekin' vacation day to go into Chicago for what will amount to a 1-hr echo (that so many people spoke so "highly" of in the echo thread...lol) OR the possibility that the new valve may actually be leaking.

Yes, that means my cardiologist called today, and despite the fact that the other cardiologist based his diagnosis on her diagnosing the Cozaar (she didn't) and the heart murmur (which I've had all my life)...not to mention that the echo done a few months ago showed no leaking, they want me in for an echo witin the next couple weeks.

Arg.

I'm beginning to feel like my "evil twin" is back...but, lucky for me, this one won't be buying another front-wheel drive "monte carlo" anytime soon...which means my evil twin will not be able to return .

*sighs*

Yes...that was a bit of sarcasm...if only to lighten my mood....

*turns to Gina*

Yes...easier said than done. Tho, somehow, I'm doing well in not worrying about it too much, if only because I'm "miffed" that I have to "waste" another vacation day .

*turns to tobagotwo*

Heh...they all leak...I like that . LOL! I'm a hopin' you're right....

Thanks again all....

 

[Guest]

*grumbles*

Still have not heard back about an appointment time for the echo. They seemed so adament about having it "right away"...and now, narry a reply as to when it can be done....LOL. Irony rocks, I guess....

*sighs*

Adding to the anxiousness....

A beloved Aunt died this week and I wasn't able to attend the funeral in PA.

After the basement water issues are now finally solved, I'm forced into cleaning/sorting through/purging out stuff in my room...just as the summer cruising season begins, putting me in a quandry as to when to work in my room versus drive my "baby girls".

My job is still causing me undo stress, which frustrates me on many levels.

My lovelife is not existant, as ya'll know. But, that's not necessarily bad.......

I'm restless...can't seem to decide what to do or when...lol.

I could name a couple other current, melancholy issues, but even though it's good to "talk" (in this case type) things out, that'd be my evil twin talking....and besides, it's all relative .

Still, I'm doing quite well, thank you. My spirits, while a bit masked right now, are still high...and I'm definitely looking forward to the rest of 2004!

 

[tobagotwo]

Official diagnosis: Hurry Up And Wait Syndrome.

"We have an emergency or maybe not situation here, and we've got to get him in to have an echocardiogram stat.

"What? No, I don't know what stat means. I heard it on Chicago Hope. I thought it meant something.

"Oh, well, then take your time, I guess. But we shouldn't tell him, because we want him to be aware how important this is to him. And maybe to us, too, if I could decipher these notes.

"O.K., then. Let's set it up for next Tuesday, or if that's no good, then how does late October sound? All right, then. As long as it's not November. For some reason, he doesn't want to come in in November."

 

[Sherry]

Cort,
I'm so sorry to hear of your recent frustrations. I remember switching cardios after we made a move about five years ago and really feeling like he was out of the loop and worse yet, that I wasn't communicating well. (I communicate for a living, and I seem to get tongue tied around docs ) Anyway, I would agree with all the other advice in that you need to have a new echo. I can't imagine the cardio denying your request for one, but if you need to go elsewhere, well... Can your primary care doc intervene in some way? Mine has offered to do that for me on several occasions. I always know he's there for me just in case. Also, I'm very sorry to hear of the death of your aunt.

 

[SJJ]

Cort,
Sorry for all the frustrations you've been experiencing lately and the loss of your aunt must be very difficult. I haven't been around long enough to know the guy who used to hang his head, but this guy seems to know how to take things in stride and I have to say I enjoy him very much. Your posts always make me laugh. Hope you get some resolution soon on the medical stuff 'cause I want the way clear for you to really enjoy your summer travels.
Sue