Fuming...

[tobagotwo]

I took this from another post I did an hour ago. I'm so mad, I wanted to restart it as a thread on its own.

I finally had my first cardiologist visit (4 weeks out). He says it looks good.

Then he points out I have a more pronounced inverted T-wave than before the new valve. Of course, since I couldn't get a copy of that report, I had no clue that I had an inverted T-wave before the surgery. He says it's probably all right, but I'll get to wear a halter monitor for a day.

Then he says I had some retrograde flow in the common carotid during the carotid scan before surgery. Again, I had been unable to intercept that report, so I had no idea. He's going to look for an MRI eventually on that one, but thinks it may just be from the AI before the valve was replaced.

What right do they have to Bogart my info?! How do you not tell someone these things when you get the test results? They actually told me the carotid echo came out fine, and showed no problems.

I walked in with expectations that if my rhythm was good, I'd have an echo in a few weeks and be done for a year. Now I'm looking at least at a Holter monitor, an ambulatory BP machine, and an MRI - if everything is OK, that is.

Of course, this is chicken feed compared to what most folks on VR.com go through. These aren't nasty tests. It's just the idea.

This is one of the reasons I don't like or trust doctors. If they know what they're doing, why don't they trust us to have the information as well?

Good thing I'm not wearing that Holter monitor or ambulatory BP monitor now!

Fuming,

 

[Glenda]

Bob I so agree. I answered you on the other post. We have to hang in there, it's got to get better.

 

[ar bee]

i always get a copy of ALL reports, echos, stress tests, etc without even asking!!

Keep your eyes and mind open - MDs are not perfect (neither are we)!!

well2u
ar bee

 

[Karlynn]

You are learning the VR mantra the way I did - the hard way.

Repeat after me "I'll need a copy of that report for my files."

 

[tobagotwo]

Unfortunately, the law in NJ is that all tests are the property of the physician. They are not required to give you a copy of anything. I had gotten the other echocardiograms because they had been misdirected to my PCP's (regular doctor's) old office address. I suspect he was never sent the carotid or EKG reports.

The real problem was my original cardiologist. My wife was in the room when he told me that the carotid echo came back "normal." He also said my EKG was "all right." I knew that guy was a creep. Even my wife felt it, and supported me dumping him after the surgery. It's a shame, because he's a heck of a diagnostician.

I was foolish, and took his word for it. However, we suspect he would not have released the reports to us anyway. And - after all - why would he lie?

I was shocked last night when my new cardiologist (the fellow who did the cath) read these things out of my file. I was mad, but I didn't want to start ranting about his associate, as it might make it even harder for me to get copies of my tests later (yes, I will surely go after them). At least this guy read the data off to me without hesitation.

The cheap tour on T Waves, as I understand them:

T waves are basically the ventricles degaussing themselves after the electric signal that causes a heartbeat. They sort of refresh the ability of the heart to accept the next electrical signal that tells it to beat. An inverted T wave usually means that the T Wave is going in the opposite direction across the heart from most people.

The inverted T waves from the EKG can mean a number of things.

- I had them before the surgery. But if I had not, they could have been indicative of a cardiac ischemic condition (blockage), caused by thrombosis. It is not unusual for people having this surgery to throw a clot afterwards, even if they are on Coumadin. (I am on Plavix.)

- If I had had a previous heart attack, they could be an indicator of a higher risk of recurrence.

- If they are associated with unstable heart rhythms, inverted T waves can be harbingers of dangerous episodes of atrial fibrillation or other serious misbeats. In short, that means that your heart can go electrically askew, and have a sort of siezure. This is bad, because it may not resume beating on its own afterwards. This would be why they would want someone to wear a Holter monitor, to check for abnormal rhythms duing the day.

- They can also mean many harmless things, and can even be a carryover from childhood, referred to as a juvenile wave. They can be caused in adult life by a variety of stressors, AI and AS included.

 

[Ross]

Under the HIPAA requirements, if you ask and sign for your records, they have to turn them over to you. I'm trying to find the exact reference, but haven't as of yet. I know since the laws passage, it has opened the door for me bigtime. I no longer get a bunch of bs when I ask for copies.

 

[tobagotwo]

I know why I'm up this late, but what's your excuse? I guess there are just some issues in life that don't make good sleeping companions.

I understood the HIPAA act to mean that they can't sell or give away your information without your permission (which they extort from you anyway in the hospital and elsewhere - just try to get a procedure done without signing away your HIPAA rights).

I've never looked into the other end of it - that they have to provide it to me. I'll have to follow up on that.

Thanks for the lead, Ross

 

[Ross]

I hardly sleep at all and it's taking it's toll. I sleep good for an hour or two, then I'm up for three or four. Drives me insane!

 

[Glenda]

Ross & Bob

Ross & Bob

I have been up for a couple of hours so thought I might as well check in and couldn't believe that some of you guys are on. I don't sleep well at all either, even with Ambein. It will knock me out for a couple of hours then once I wake up, I'm up. I cannot go back to sleep. I hope you all have a good day.

 

[Ross]

Here ya go Bob, it's rather open ended, but it's what I found:

Access To Medical Records. Patients generally should be able to see and obtain copies of their medical records and request corrections if they identify errors and mistakes. Health plans, doctors, hospitals, clinics, nursing homes and other covered entities generally should provide access these records within 30 days and may charge patients for the cost of copying and sending the records.
http://www.hhs.gov/news/facts/privacy.html

 

[tobagotwo]

I know how you feel. Before the surgery, I couldn't sleep, because of all the unresolved issues and the mariachi band (sp?) playing in my chest. After the procedure, I slept like a log - actually like a log floating down the river, because of the night sweats. Now I'm back in No Man's Land with my T waves and carotid questions. So I'm awake and cogitating at four ayem again, spinning my wheels with no traction.

It's supposed to be sunny today. Of course, last night's low was supposed to be 42, and my car has frost on it. Go figure.

Pat took the day off, and we're taking her parents to Rice's, a big flea market just outside of Lahaska, PA. They're open on Saturdays, too, but it's much bigger on Tuesdays. I get a lot of good deals on things I use for local charities there, especially for kids. Yu-Gi-Oh cards, markers, paint brushes, school supplies, all sorts of things they need.

We considered taking our dog, a three-year-old Boston Terrier named Abigail. She loves the car and going places. But she'd get worn out in a half hour or so - too much excitement, too many feet! So, I guess she'll stay home this time, as we won't leave her in the car while we shop.

This will be a good day. I like going places with my sweetie.

 

[Granbonny]

Ross..Bob and Glenda

Ross..Bob and Glenda

Maybe we need a new subject..Called For Night owls only Where you can only post between midnight and 6 a.m....Then members who are up late and cannot sleep..could chat with one another. I'm up early..but it's because I go to bed with the Roosters... Bob..when do you start wearing your Halter Moniter? Let us know the results...Bonnie

 

[Karlynn]

They may legally have the right to refuse giving you a copy, but I don't think I'd stick with a doctor that practiced that right. In my opinion that is taking your right to oversee your own medical care away. It's also a way of a doctor telling you they don't think you are wise enough to be allowed access to your medical information.

 

[Gemma]

Hmmm

Hmmm

There was I thinking it was only in the UK we had this kind of problem.
Jim had a Holter monitor 7 weeks ago. He took it back, went into the cubicle to take it off, came out to ask the nurse to send a copy of the report to him, and whoosh! she had vanished without a trace. Presumably after 7 weeks we can assume it didn't show anything weird?!! He did ask his GP, but of course because it was the cardio who ordered the Holter monitor it's the cardio who gets the results, and the GP doesn't get to hear anything. I should point out Jim has practically nothing in the way of info relating to tests before and after the operation, the closest we got to finding out any actual results was when a nurse told us his left ventricle had gone back to normal size. Uh-oh, a medical person actually sharing information with the patient whom it concerns?!! What is the world coming to? Next they'll be telling us his ejection fraction, valve serial number, and all sorts of complicated stuff like that!!
By the way, I'm not a night owl - it's 2pm over here in sunny (and yes, it really is sunny) England!
Gemma.
(Fuming too).

 

[Creed3]

Hi Bob!

Hi Bob!

I have worked in the Medical Record field for 18 years. I worked at two hospitals in PA and am now working at a hospital in VA. You are entitled to your records. All you need to do is sign a release form and tell them what you want them for. If they are for your personal use they do have the right to charge you for them. If it is going to another doc or hospital, they usually don't and shouldn't charge you for the copies. Every state is a little different, but you are definately entitled to your records. I hope everything works out ok.

Take Care!
Gail

 

[Abbanabba]

I was certainly never aware I was able to access my records. Even when I moved overseas, my cardio at the time would only write me a letter outlining my history and current condition - he sure never included any actual reports.

The GP I have at the moment is great. When I went for my second opinion, she gave me everything she had from my previous cardio (..which wasn't much..) including the letter he wrote to her in which he basically called me an emotionally unstable, hyperchondriac. When I showed this to the second cardio, he said he'd take "..much more care.." in his assessment of me since I obviously made a point of getting copies of my medical info - hmmmmm!!

It seems like they figure if you don't ask, they don't have to tell you... and even if you do ask, they don't have to make it easy for you.

A : )

 

[Creed3]

One other thing!

One other thing!

Your doctor or hospital can only release to you their office or hospital records. Anything from another doctor or hospital can not be copied and given to you even if you pay for them. You have to get them from the original office you were seen in. I hope this makes some sense.

Take Care!
Gail

 

[tobagotwo]

Well, I understand it, but in an overall way, I'm not sure it makes sense. Files is files. You should have access to the exact information your health professionals are using. I guess requiring the source information is to avoid lawsuits for "contaminated" information, altered/interpreted after receipt.

I was able to talk a staff member into copying the tests I don't have, and I should be picking them up later this week, assuming she follows through.

The real kicker of this is that, had I known about the inverted T waves, because of their link to atrial fibrillation, I might have made a different valve choice. I certainly would have had different parameters for my consideration. Because of this, there is now a percentage chance that I may wind up on Coumadin AND having to have my tissue valve reoperated in xx years.

Paradoxically, when I asked the cardiologist about my Plavix prescription (blood thinner), which would run out next Sunday, he said I should contact the surgeon. The surgeon's staff said to just throw the rest out.

So, for now I am back on just one baby aspirin a day and Atenolol (beta blocker). I get the Holter monitor on the 10th, and I guess we'll get to see then if I ease by the shadow of Mr. Warfarin or not.

The flea market was fun, and had a lot of vendors, but the variety wasn't as great as it will be when things warm up. It was low 50s and windy. I guess I'm getting back to normal (for me). We were there for about five hours. Everyone else was freezing, and my wife even bought and wore a billious orange fleece vest. I was in short sleeves and totally comfortable. I also walked them all into the ground. Heh, heh...still an ornery old cuss, I guess.

About that: the cardiologist was visibly disturbed at my walking, and told me I should cut back, because five miles is for "three or four months out." My Pat - God bless her - my watchful, cautious, and healthwise conservative Pat looked at him like he had three heads. "We'll take that comment with a grain of salt," she told me later. "I know you, and I know that you're doing fine." And she's right. I do feel fine.

What a weird, mixed bag of semiresults.

 

[Leighanne]

getting records

getting records

Hey
If worse comes to worse, I was told by my lawyer he could subpoena them. I dont guess there has to be any suit filed first, although I have considered it given that despite my cardiac history (pulmonary atresia, repair at birth) I was diagnosed with panic attacks, anxiety, and depression and given Prozac. doctors, I dont often trust, well never, I, like you have to obtain ALL the info, learn about all of it, talk with others and then I can make informed choices. We have to be active and not passive about our own health, if I had not been my son would still be having seizures, never sleeping and screaming and hurting himself around the clock. All you guys have so much fight in ya, love it!!
Leighanne
PVR, TV ring, full MAZe scheduled one week from today in Boston

 

[Bill Hall]

Good idea to keep your own records. My cath was done in 1980 at Overlook Hospital in NJ, but they could not find a record. My cardio in VA retired and I could not find records several years later. When I saw a new cardiologist in 1996 at Rob't Wood Johnson in NJ, we had to start all over again. I still haven't learned, I still don't keep my own records.