Check up frustration

[Guest]

*grumbles*

I realized after I had gone to bed last night that I had neglected to mention one more dimension to this whole "mess" (for lack of a better descriptive word/phrase)....since the newest diagnosis (however odd it seems), various types and degrees of chest pains seem to be more common. I'm not sure what the helk gives on this..... I didn't have them before the diagnosis, so I'm wondering if they are of the "self-fulfilling prophecy" genre....

*rolls eyes*

And, as for my sicknessness being caused by a leakage, I'm not so sure about that either.... I had bouts of sickness before my last appointment...which showed no signs in the exam or the echo of a leakage....

Aye.

*turns to tobagotwo*

Well-written, my friend...well-written. Definitely made me laugh quite out loud this morning .

*turns to Sherry*

Thank you; definitely appreciate your comments. But, I should note here...I'm _not_ changing cardiologists as far as I know. My cardiologist just was not available on my appointment date. I'm sure my PCP will intervene if necessary, but I really don't want to have to go that route...lol.

*turns to Sue*

LOL! Well, glad I'm able to make someone laugh . Now...if only I could do that to a gorgeous, single female...I'd be all set . LOL! Thank you...I appreciate your words, too. And, you might, actually, have hit it on the head about why I'm so "anxious" these days....the _possibility_ that my summer travel plans will be derailed....gosh, I hadn't, er, at least not consciously, thought of that possibility. Hmmm.... *raises eyebrow* I shall be thinkin' of that on the drive to church this morning.....

 

[McCln]

Cort

Cort

I hope you will gat some answers soon. On the Cozaar, it is a water pill, and doe not prevent or controls leaks of the valve. I was born with a congential heart murmur on the aortic valve. I had taken cozaar after experience CHF. And was on it for over a year till insurance made it a change to other med. I would ask the doctor for a better explaniation on the cozaar. For it being used to lessen leaks is not true. Otherwise, I hope you find ways to lessen the tension in your life. It is not good for you. I hope you are taking walks, for crazy doctors are always stressful. I had one cardio who took my blood pressure and had me on water pills for high pressure. He said my BP was 500 over something. I was angry as he told me and my BP was going up at the same time. I thought I should have been dead the way he did my BP. Well, I never saw him again. When the information sounds crazy, never listen. Just prentend to understand and get the straight scoope from the regular heart doctor. And if no answer is forthcoming, get another doctor. You need to have a doctor who is there for you. I will pray for you that you will get the right answers soon. Take care and hang in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[tobagotwo]

Cort? You say you're on 150mg of Cozaar daily? Perhaps you should check out the following link:

http://emc.medicines.org.uk/emc/assets/c/html/displaydoc.asp?documentid=8320

It's kind of long and wordy (like one of my posts), but it does seem to be generated from the Merck Manual data.

Cozaar appears to be an antihypertensive, rather than primarily a diuretic, although it apparently also has that effect. It seems to have a secondary beneficial effect for renal issues, especially those associated with type II diabetes.

There is no indication given that it would have any effect on valvular leakage. As far as valve issues, it says, "The use of 'Cozaar' in patients with haemodynamically significant obstructive valvular disease or cardiomyopathy has not been adequately studied." Well, leakage isn't obstruction...

Also, there is no recommended dosage listed that is over 100mg/day, although the information there may just be incomplete.

Be sure to check out the "4.4 Special warnings and precautions for use" section, as it has segments on kidney (renal) and liver (hepatic) cautions. It also states concerns with electrolyte imbalances. There may be things to watch out for now, if you're on a high dose.

Don't let the drug cautions drive you crazy or make you worry. It's good to be aware, but not paranoid.

As far as the other symptoms suddenly showing up, Cort: that drives us all crazy. Is it live or is it Memorex? Aside from the obvious rhythm faults and real angina, I could never tell how much of mine was real, and how much was just profound valvular hyperaesthesia.

Best wishes,

 

[Guest]

Ah, Crap.

*rolls eyes*

According to that linked article, I'm taking Cozaar for nothing related to any of my conditions. WTF?

*turns to Ross*

Hey, buddy...I thought you wrote earlier in this thread that they did give you Cozaar to help control the leak.... But, reading that article and the posts of tobagotwo and Caroline, it seems as if Cozaar has no affect on leaks...?

*grabs a section of hair and tries to pull it out*

And...that article does not even mention proteinuria...for which Cozaar was prescribed for me in the first place. Aye. Apparently, I had too much protein in my urine, which scarred my kidneys. Thus, Cozaar was prescribed to lower my blood pressure to reduce the protein to reduce the scarring in the kidneys. Blood pressure and protein has dropped....

*sighs*

I've no idea what to think anymore....and I think my tension just skyrocketed ...which is not good since that dull pain hasn't gone away.... It isn't constant...just when I breathe deep or cough....

*sighs*

 

[tobagotwo]

Cort, Cozaar does seem appropriate. I just don't see anything that points to a 150mg/day dosage. They only discuss going up to 100mg/day.

To wit, from "Theraputic Indications:"

"Renal protection in type 2 diabetic patients with nephropathy (macroalbuminuria)

"'Cozaar' is indicated to delay the progression of renal disease as measured by a reduction in the combined incidence of doubling of serum creatinine, end stage renal disease (need for dialysis or renal transplantation) or death; and to reduce proteinuria." (Bold mine.)

Best wishes,

 

[Harpoon]

OY!

Suffering from a few of my own bad memories here...


I had a leak in my heart (it was part of the original TGV repair, not my now artificial tricuspid valve) way back when and my cardoilogist put me on lisinopril (AKA Zestril) to try and fix the leak. Lisinopril is an ACE inhibitor that acts by causing heart and blood vessel tissues to expand. It's primarily intended for people with high blood pressure and the like. in my case, the hope was that expanding the tissues inside my heart, would plug up the leak. Lisinorpil had the added effect (of course) of lowering my blood pressure which helped my heart pump easier.

Ok.


That worked for a while. in the process of trying to diagnose the cough I had which lead to all of this crap I was switched off the lisinopril and onto another ACE inhibitor called Diovan (much more expensive, and with lesser cough side effect, sort of)

I know the experience of dealing with multiple doctors. My cardiologist was the "expert" and my primary physician was not, but most of the time they refered to eachother regarding my condition.

Seeing a "substitute" doctor because your regular cardiologist wasn't available worries me a LOT. If you had the appointment scheduled and your doctor couldn't make it, the appointment should have been rescheduled as quickly as possible. Only YOUR cardiologist knows why he set you on that medication.

I can tell a LOT of people that I'm on lisinopril and they'll all ask me why I have high blood pressure or if I'm hypertensive.

I'm not, never have been.


You need to be seeing YOUR cardiologist. If you have to change cards, that's Ok but make sure he/she is fully up to speed on your case. No subs.


On the echo. Unless there was an emergency, you should have gotten that echo when you had the appointment and the fact that you didn't is disheartening.

November isn't "YEARS" away, but it's enough that your condition could become markedly worse before the echo is performed. Of course it could also be that your condition remains stable or even improves. Personally, I wouldn't be comfortable with that kind of set back, a lot can happen in 6 months.


I saw a number of doctors in the process of trying to treat the cough that I had. I'm still not sure if the cough was a symptom of CHF/my failing valve or if there was something else going on as well. I had all kinds of different treatments investigated, nothing (besides the AVR) seemed to do anything for me... Each doctor I saw had a specialty and they really didn't know much about the other aspects of my condition beyond what other doctors might have told them. I saw a pulminologist who knew I had transposition and that it was corrected, knew there was a leak in that repair, but didn't know how the correction was made or where the baffle was that was leaking (or what that baffle was and did.) She was a pulminologist, not a cardiologist or heart surgeon.

The difficulty is that if you're being treated for two seperate conditions that have "intermingling symptoms" by two different doctors, a lot of the treatment may overlap on both conditions.

You're getting a drug used to treat high blood pressure ( http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/coz1104.shtml ) in a roundabout way that would help if you had a leak somewhere as well, it means less stress on your heart (about the same as why I was put on lisinopril, and still am.) A lot of times doctors will use drugs more for their "side benefits" than their intended use.


Oh, and as for the murmur. That's defined as any sound "abnormal" to heart function. While it may be true that you have a murmur, the leak itself is NOT the murmur, just the sound of it leaking. I've been told I have murmur by doctors who heard the a shunt that exsists in my heart to pass blood around to the right place. They don't know that there's a shunt there, just that they're hearing a sound that's not normal to THEM.

It's perfectly normal to me.

Same now is true for the clicking of my St. Jude's valve, though only a blatant idiot would call that a murmur and if he or she did, I'd smack them into the next room and demand to see someone else.



Get ahold of your cardiologist A.S.A.P. The suggestions made before me are good ones. Make a list of all of your questions. That sometimes may lead to more questions to ask that you might not have thought of on the fly during your visit.

I have a notebook for almost all of my heart related medical visits and such. I used it a lot when I was at Cleveland Clinic and I can go back now and read through all the crap I was dealing with. It serves as a good reference now. I also take notes in it at times, sometimes with questions to ask other doctors based on information I recieved from the doctor I was seeing when the questions came up.


Don't panic, just work on making sure the docs are treating YOU not a "standard issue case."

We are by no means "standard issue!"


Frankly, I'm kinda proud of that one.

 

[Raverlaw]

Oh, and as for the murmur. That's defined as any sound "abnormal" to heart function. ....
Same now is true for the clicking of my St. Jude's valve, though only a blatant idiot would call that a murmur and if he or she did, I'd smack them into the next room and demand to see someone else.

Harpoon,

Aside from the tell-tale clicking, which I have grown to love, my St. Judes also makes a "murmur" because its hemodynamics are different than a natural valve. I can hear it with a stethoscope, and although it is different and quieter than the murmur my old, stenotic, bi-cuspid valve used to make, it is a murmur. So don't smack anyone too hastily!

 

[Guest]

*sighs, a bit easier now*

tobagotwo, my bad...and apologies. I guess I skimmed through that and didn't notice proteinura mentioned. Aye. I feel a bit better now...thank you for noting that for me .

And, harpoon...holy cow! Thank you for your words/experience/advice/information. I definitely appreciate it...perhaps more than you know.

And, btw, if my earlier post seemed a bit panicky...I apologize. I'm just...well, frustrated at being so anxious, while feeling very lackadaisical about this whole situation. I mean...I've been in situations before where the doctors have painted a dire picture, only to have test results prove otherwise, so I guess I'm coming at this at that angle...rightly or wrongly, of course .

*sighs*

 

[Guest]

*takes deep breath*

I feel a bit better now....

The echocardiogram is scheduled for 7:30am, Tuesday, May 25 (a week from tomorrow).

I'm relieved...and ticked...all at the same time...lol. Guess we'll see what happens .

 

[KathyH]

It must be a relief to have the echo scheduled. Hope all goes well.
Kathy H

 

[Bryan B]

That 7:30AM time would have ticked me off.

I hope you get good news and let us know ASAP!

 

[epstns]

I don't know if the time would be that bad -- they won't be running behind that early in the morning. Also, you'll have the rest of the day to either get back to work or do something more pleasant. Go ahead, get it out of the way. . .

 

[Granbonny]

Harpoon

Harpoon

Last Oct. My Hubby's PCP sent him for a stress test..They went on the same day and did a cath..MY cardiologist saw him in the hall and asked why he was there. He said, I need a Cath. of heart..He said, I'll do it. He knew my hubby from me..He put him on lisinopril...My hubby coughed his head off..awful, when he was driving. He tried all kinds of things..Hard candy, ect. Then during my last Cardio visit March 22nd..while my hubby was in room with me..he told him about the cough. He gave him another script..but I was surprised it wasn't another ace in. I know now he takes..Hyzaar and coreg...cough is gone.. b/p is really good. His EF is 35..but he has always had a slow heart beat...Was a Delta Captain for 37 years and no medical problems. As we talk, he is outside weed-eating. Never slows down..No symptoms of sob, ect.. He will be age 74 in Nov..and looks age 65.. He did quit smoking his pipe but still has a cocktail or 2 before dinner. Does anyone know the difference between Hyzaar and cozaar? Bonnie

 

[Marge]

Bonnie, you asked about differences between hyzaar and cozaar.

Hyzaar is a combination of losartan and hydrochlorothiazide. Hyzaar is used to reduce blood pressure.

Cozaar is just losartan. Used to treat high blood pressure and reduce chances of stroke.

Losartan is an angiotensin II receptor blocker (ARB). Hydrochlorothiazide is a thiazide diuretic (water pill).

I know all about the horrible lisinopril cough. I was prescribed lisinopril some years ago for hypertension (high blood pressure). Not everybody develops that particular side effect, and not everybody who does gets a really bad cough, but I did. I developed a horrible cough and after a few months of that I was taken off lisinopril and placed on cozaar.

Lisinopril is an ACE blocker. ARBs like cozaar and hyzaar do approximately the same thing as ACE blockers -- maybe not quite as effectively, but for people who develop the extreme cough they are the best alternative.

When I was at the hospital, after my valve surgery, they started giving me captopril (another ACE blocker). I started coughing immediately & recognized the symptom & found out I was on an ACE blocker & demanded to be taken off. It took a while to get anybody there to listen. When my discharge medication list came through, there was captopril again! I had to go to my PCP to get back on cozaar. He knows I cannot take ACE blockers.

Now I am on a combination of 25 mg a day of cozaar and 37.5 mg of coreg (a beta blocker). No coughing. BP is fine. Heart rate is still somewhat elevated since valve surgery but is coming down.

I'm curious: what do they ascribe your husband's low EF to? Mine was also in that range (30-35 %) before the valve surgery. Afterwards, once the leakage was stopped, it was 45 %. Still lower than the normal range (55-70 %) but not nearly as low and they think it may go up some more.

 

[Granbonny]

Thanks Marge

Thanks Marge

I'm looking at his meds..coreg..6.25 2x a day..Hyzaar..100/25..that is all he takes..2nd echo was the same..No lower..No higher..Still 35%They just said..hoping for a higher range in next visit..Oct. 21st.. I think that John is just a very, low keyed person. Never gets excited..Even, putting up with me for 38 years. Like I said..he is age 74....Said he was always told his pulse was that of a young athlete. I don't wory as long as he keeps doing what he is doing...Man wears me out. Cath showed all arteries clean, ect...Just happy he off the ace in..It was awfulland embarrasing to him when he would be engaged in conversation, ect. Bonnie

 

[sylviayasgur]

hi cort!
i haven't been on much lately and when i read your thread, i felt so badly for you. i'm sorry you have to go through this.
you did, however, get so much sound advice from others here. i'm also happy that you will be having your echo on tuesday. i agree with seeing how things look now vs. later (and even vs. past tests)_ in terms of change.
please be sure to let us know how things go and if/when you hear more.
in the meantime, you are in our thoughts and we're here for you.
stay well, sylvia

 

[Guest]

Yep, Kathy...it certainly is a relief to finally have it scheduled. But, I still have to actually do it...lol.

LOL, Bryan, yeah....actually, I'm not too concerned about the time.... It means that Dad and I will be leaving Elgin about 5:30 in the morning to attempt to avoid the bulk of the rush hour traffic . Besides, like Steve said...gets it out of the way early in the morning .

And Sylvia, good to see you posting again . And thank you...I appreciate the thoughts/prayers!

And, yes, I'll let ya'll know the results .

*eyes Bonnie and Marge*

Wow...interesting info, for sure....

 

[Bryan B]

Well I got my payback. My CAT scan is scheduled for 8AM on Friday and I have to be there at 7:30.

My favorite thing to do when I'm working is to make my appointments for mid morning or mid afternoon. Then I can either sleep in before the appointment (no need to come to work and then have to turn around and leave) or go home after the appointment (no need to drive all the way back to work and then turn around and leave).

 

[Guest]

LOL Bryan! neener neener neener .

Unfortunately, I'll need to get back to work ASAP after the echo next Tuesday.... I don't have much vacation, and most of mine is tied up in travels this year.....

 

[Guest]

*takes deep breath*

I'm not sure why I "neglected" to give ya'll an update on this....

But, it's sorta "non" news.

The Echo itself went well, albeit starting an hour late, as the technician had car trouble en route to work. Oh, well. After it was done, he (I've known him for years...he always does my echoes) turned to me and asked, "Why the hell are you here?"

He must have seen my blank look.

"Everything looks the same as it did last time."

Oh, really?

"Yep."

Hmmm...so, I tell him the story of what happened. He just looks at me and simply says, "Well, let's see what they say when they see this."

Alrighty then.

From Tuesday on, no word until I called Friday morning.

My cardiologist called back and left a message Friday afternoon indicating that "nothing has changed" since the last echo and to keep on with the meds I'm on.

Er, wait. (Here is where I'll have to call back next week.)

If nothing has changed, why do I have to stay on 150mg of Cozaar?

Or, do I go back to the 100mg of Cozaar prescribed by my PCP?

As I said, I'll be calling back later this week.

Aye.

I'm relieved...don't get me wrong.

But.

(And you knew there would be a but.)

I'm mildly ticked...no peeved...that I had to "waste" more time to come in to have the procedure done...that SHOULD have been done when I was there for my checkup...only to find out that it wasn't needed at all.

Yeah....better to know now than in November. I know. Please don't preach .

LOL.

So....more later this week, perhaps.