That Time Again

[Protimenow]

Stevebav - I hope that when you wrote this, you had a good employer and good insurance, so that you and your doctors can decide when it's the right time for surgery (and, if it's time, that you don't have to put it off until you can afford it).

 

[Ladybug]

I live in Georgia, in the metro-Atlanta area. I haven't yet had to undergo surgery (knock on wood). Since I was diagnosed as having a leaky valve about 6 or 7 years ago, my cardiologists (plural) have all told me that my condition has remained unchanged. I say "cardiologists" because I stopped going to my first one because I honestly felt like I was just being run through the cash register. In one year I had an echo-cardiogram, a CT scan, a TEE (trans esophogal echo-cardiogram). I was also being sent to see a surgeon, just so that they would be familiar with my file (I was told), even though the hospital has a team of surgeons who rotate and the likelihood of my seeing "that" surgeon if/when my time were to come was quite low. He kept seeing me.. every six months in the beginning, and eventually once per year. I had read that a condition such as mine, which is categorized as mild/moderate, should only require an echo-cardiogram every two years, not every year.

I lost confidence in my cardiologist and switched to another one who works in a completely different hospital system. I saw him once and he was also going to set me up for additional appointments, tests, etc., even though he had been provided with all of my previous test results, all of my records. I just never went back to him.

After a couple of years of seeing no cardiologist I went to a third cardiologist, and to be perfectly honest, I don't have full confidence in him, either. In the one year I have gone to him he ran an echo-cardiogram (which I fully expected and knew I needed), from which he told me that my condition was still unchanged. But six months later he ran a CT scan to look at the stub of my aorta, and from that he told me that my aorta measurement at the stub where it meets my heart had changed from previous measurements of 4.5 cm to 4.7 cm, and for that reason he wants to run an echo-cardiogram once per year. He only six months prior, when running the initial echo-cardiogram, had told me that my valve situation was unchanged. The "aneurysm" which they say I have at the base of my aorta, where it meets my heart, is caused by the exact same condition that has caused me to have a leaky valve. My valve is dilated, thus the "aneurysm", with the base of the aorta also being dilated with the valve dilation. My measurements have always been 4.5 cm since the day I had my first echo-cardiogram and my first CT scan. I became suspicious of this new cardiologist when he told me it is now 4.7 cm, especially him saying that the valve condition is unchanged. With that reading he says he wants to run an echo-cardiogram every year, which is what I think is unnecessary for my mild/moderate condition.

But, what do you say to these guys. You have to take their word for it... to some extent, at least. But, at the same time, the patient definitely has a say in the matter.

I have a fantastic PCP. I have 100% full trust and faith in him to be honest and not over-treat me for anything. Unfortunately, I cannot say that for either of the cardiologists that I have seen.

Let me know if you get this. I live in Suwanee. I’ve just become a patient of Dr. James Stewart at Emory St. Joseph. I’m having TAVR on 9-5-19. He’s done 700 of them. He never flinched when I asked him some hard pressing questions. I basically was rude. He was unphased. In his 40’s, Harvard background. He was not going to use s Sentinel filter but I brought up research that supports it, plus I said...the Cleveland Clinic uses it and US News and World Report gives them 100% and a mark of excellence on all aspects of card. I told him I’m not having TAVR without a stroke prevention device in place.....”No tickey, no laundry.”
So his office called and offered me a 9-5-19 date and said he’ll use the Sentinel device.
I’ve been getting echo grams for years. One a year, then two years ago upped to twice a year. I am symptomatic with severe Aortic Stenosis. In mid May, I put on 12 pounds in two days. Took fluid pills to try to pull that back down. I have a cardiac cough and breathing crackle sounds when sleeping on my left side. Im in bed all day with exhaustion.
I’m not a big fan of doctors. I had a terrible botched up health mess in SC in the 1990’s and had to fly to Cleveland to have them bail me out. One of those SC doctors was trained at Emory. I shake like a dog going to the vet when I walk thru the doors st Emory. But at some point, you need to trust somebody, or it could cost you your life. I think you should be glad they are upping your echocardiograms. I research stuff to death. If you get into increasing issues, which you may only recognize as feeling older....you could die in your sleep. I’m not giving medical advice, as I’m not medical personnel. I’m giving life advice. Common sense advice. You’ll like Dr. James Stewart, and Dr. Greg Robertson at John’s Creek Emory is my regular cardiologist,..try him. I can tell you that you’d be smart to get those echo grams in the same place every year (or always get the disc and reports on your echo. The changes that happen over time is what they’re following. I snowballed down hill between two six mo exams, and had I not had a June 2019 echo gram, I would have been like the walking dead when they caught it. An aneurysm is nothing to fool around with. Good luck.

 

[ValveAdmin]

Stop being politically fussing. This forum is about healthcare. I will continue to delete posts where necessary. In the morning I may have to come back and read posts again to see if I missed anything.

 

[Agian]

Angie, posts on the forum serve as an historical record. The numerous comments are an encyclopaedia of opinions and human suffering. I appreciate you have standards to maintain. I only ask that you don't delete, unless it is really necessary.

 

[Protimenow]

Angie - since when is it wrong to correct a person when he claims that the PSA test is preventive, and tests for STDs are diagnostic?

Others read these things here, and may be interested in WHAT truly makes a test preventive, and what tests are diagnostic. The person with the incorrect post may have also believed that an echocardiogram was 'preventive.' Others may be interested in the reasoning, and difference, between the reason for tests (and the reasons that some are paid for, and others aren't).

Also - I invited the person with the 'beliefs' to move this to private mail. It may be useful to show some opinions - especially when they relate to medical issues.

Plus - if you're going to delete my response to ddwheeler's INCORRECT assertions and insults, why don't you delete HIS post, too? There's no reason why his (or her) insulting and incorrect post SHOULD remain on this thread. if my corrections were deleted. Remove them BOTH or restore them. Please.

In fact, why not edit out the 'political' stuff, and the assertions about what test is diagnostic and what tests are preventive?

And since when was a discussion about medical tests NOT about healthcare?

 

[user 16827]

I was enjoying the debate

 

[Protimenow]

The 'diagnostic' versus 'preventive' issue shouldn't have been considered a debate AT ALL. The differences were between 'interpretations' of what a test for 'diagnosis' and one that could be considered a part of a 'preventive' process are clear and well documented. And, of course, they ARE HEALTH RELATED.

For those not involved in the issues, it may have been enjoyable to witness the blatant ignorance and stubbornness of one party pitted against a voice of reason. It was clear, from the insistence of each, that each believed their positions to be correct (one relied on who knows what?, while the other relied on valid epidemiologic principals), it was clear that this probably wouldn't end, if one didn't stop posting.

I won't address this issue, or that person, again (if I can resist doing so).

I agree with Agian and leadville that these things should not have been deleted. (And I don't understand why MINE was deleted, but the insulting, inaccurate one before it, was allowed to stay). (Of course, the comment about people who 'live a lifestyle like a wild animal' may say more about this person than deleting the entire post would have).

 

[Ladybug]

I new, but I thought this was supposed to be a valve site, not a PSA site. And with all this fussing, no wonder we all have heart trouble.

 

[Protimenow]

This is primarily for heart and valve issues, but other health issues sometimes work their way into these threads.

I wrote about poor coverage for heart patients, and a person on this site complained that Medicare doesn't cover a particular test because they claim that it's diagnostic, not preventive (and Medicare is RIGHT about this.) I tried to clear up his confusion.

It IS health related.

And - to extend it, if he said echocardiogram instead of PSA, we may have had the same discussion.

 

[ddwheeler]

Let me know if you get this. I live in Suwanee. I’ve just become a patient of Dr. James Stewart at Emory St. Joseph. I’m having TAVR on 9-5-19. He’s done 700 of them. He never flinched when I asked him some hard pressing questions. I basically was rude. He was unphased. In his 40’s, Harvard background. He was not going to use s Sentinel filter but I brought up research that supports it, plus I said...the Cleveland Clinic uses it and US News and World Report gives them 100% and a mark of excellence on all aspects of card. I told him I’m not having TAVR without a stroke prevention device in place.....”No tickey, no laundry.”
So his office called and offered me a 9-5-19 date and said he’ll use the Sentinel device.
I’ve been getting echo grams for years. One a year, then two years ago upped to twice a year. I am symptomatic with severe Aortic Stenosis. In mid May, I put on 12 pounds in two days. Took fluid pills to try to pull that back down. I have a cardiac cough and breathing crackle sounds when sleeping on my left side. Im in bed all day with exhaustion.
I’m not a big fan of doctors. I had a terrible botched up health mess in SC in the 1990’s and had to fly to Cleveland to have them bail me out. One of those SC doctors was trained at Emory. I shake like a dog going to the vet when I walk thru the doors st Emory. But at some point, you need to trust somebody, or it could cost you your life. I think you should be glad they are upping your echocardiograms. I research stuff to death. If you get into increasing issues, which you may only recognize as feeling older....you could die in your sleep. I’m not giving medical advice, as I’m not medical personnel. I’m giving life advice. Common sense advice. You’ll like Dr. James Stewart, and Dr. Greg Robertson at John’s Creek Emory is my regular cardiologist,..try him. I can tell you that you’d be smart to get those echo grams in the same place every year (or always get the disc and reports on your echo. The changes that happen over time is what they’re following. I snowballed down hill between two six mo exams, and had I not had a June 2019 echo gram, I would have been like the walking dead when they caught it. An aneurysm is nothing to fool around with. Good luck.

Thanks, Ladybug. I appreciate the references for those cardiologists. Unfortunately, I'm over on the west side of the metro area, just past Marietta. I appreciate the straightforward advice. I do try to not take my situation lightly, although I've been in a mild/moderate status from the very beginning. As my initial cardiologist said, I could have even been born with the condition. I just got really run through the wringer with what I truly believe were some unnecessary tests.. expensive tests.. and appointments, all which added up to a tremendous amount of money. In that one year I met my annual out-of-pocket maximum with my health insurance, and that is $6,000! I paid that out of pocket in one year, and it was all due to a multitude of tests and appointments (not just cardio-related, but mostly). Because of that I am wary of doctors' over-testing, shall we say, especially in the current climate within the overall healthcare system.

Because I have already changed cardiologists twice, I am going to remain in a wait-see mode with this current cardiologist. I will say that he already, just after my first echo-cardiogram, said that he wanted to give me a T.E.E... transesophageal echo-cardiogram... yet I had one only a couple of years prior, and I've had multiple regular echo's since that time, one immediately prior to him saying that. That, to me, is totally unnecessary and is just him testing on someone and generating money. He didn't even know that the records I had provided for him showed that I already had a T.E.E. The really negative thing about a T.E.E. is that they have to put you under for that. He backed off when I told him I had one, previously. But, we'll see where things go.

I agree concerning not messing around with an aneurysm. A lady who I've know for 10-12 years died just in the past few months, exactly from that. Whether she had been previously diagnosed... that, I do not know. I just heard, after her death, that it was determined that her cause of death was an aneurysm.

Thanks, again. I hope everything works out well for you and your situation.

 

[Protimenow]

I new, but I thought this was supposed to be a valve site, not a PSA site. And with all this fussing, no wonder we all have heart trouble.

Yeah. But discussion about a sick dog is certainly more relevant than discussions about whether medical tests are diagnostic or preventive.

I have no problem discussing sick dogs, but blocking stuff about legitimate medical tests seems a bit strange in comparison.

 

[Agian]

Protime, getting a post removed is not the end of the world. No need to sulk.

 

[Protimenow]

I'm not sulking - just a bit disappointed that they left a post with incorrect information on the site, and removed mine.

 

[Agian]

Incorrect, according to you.

 

[Protimenow]

Agian - incorrect according to Epidemiological principles.

The statement that a PSA is preventive is absolutely incorrect. It's diagnostic.

The statement that a test for STDs is not preventive is also incorrect. For the person tested, it's certainly diagnostic - but the actions taken after the diagnosis - locating people with whom this person had contact in order to test and, if necessary, treat them- and to track down THEIR contacts - in order to prevent the STDs from spreading - is ABSOLUTELY preventive.

Knowledge about Public Health principles would clearly confirm that it's not just 'according to' me.

Check these out.

(Plus, FWIW, Urologic researchers have modified their guidelines on how to deal with high PSA results, and they found that the outcome from aggressive surgical treatment is not significantly better than watching for changes and treating when necessary)

 

[Agian]

You're missing the point. No one cares.

 

[Protimenow]

ddwheeler did - he or she complained that Medicare decided that the PSA was diagnostic (and he or she claimed that it's preventive) and complained that tests for STDs were diagnostic, rather than preventive.

I'm sorry to everyone here because this thread went so far off the rails, when I tried to explain to ddwheeler WHY the PSA is diagnostic and STD testing was preventive. Medicare decided this, I tried to explain the difference between diagnostic and preventive.

This turned into something of a debate, with two immovable objects -- one stating that people who get STDs act 'like wild animals' and the other trying to explain Public Health and Epidemiologic principles.

I'll try not to fall into this trap again, and will hold back on trying to explain things to a person or persons who won't accept explanations.

Again - I'm sorry for taking this thread into a different direction than it started into. I'll try to resist in the future.

 

[ValveAdmin]

I'm not sulking - just a bit disappointed that they left a post with incorrect information on the site, and removed mine.

Then post without the political comments. I'm not taking the time to edit out political references. Not government in general, but political as in a particular party or candidate.

 

[ValveAdmin]

I've closed this thread, so the topic can start over for what it was and the insults and fussing about PSA's can be done without insults on it;s own thread. And PSA's should be done later in a man's life too. Dad had Stage 4 when he died. Found a year earlier after it had attacked his t-8,9 and 10. When found PSA 300, but before he died we got it down to 1. But damage was already done. VA does not test after a certain age.