Compiling the Data...

[Dexter Bob]

I have noticed that a number of forum members keep track of a lot of data on their respective conditions. Being new to the game here I was wondering what I should track and how I should obtain it? So far I have had an echo, an angiogram, and a heart CT and all the attendent blood work. The only thing I walked away with was a receipt for my $10 co-pay

Having never had any prior medical conditions I am a "babe in the woods" when it comes to the whole medical-pharmicuitcal world. I don't want to try to catch the train after it leaves the station!!

Bob

 

[Lynlw]

I would start by asking your doctor/cardiologist for copies of all your test reports ect. usually they are helpfull and will make you copies, sometimes especially if you have a few doctors or hospitals, you have to request them from medical records. They USUALLY will charge a fee, sometimes per page, if it is for your own personal copies, but send will send them to other doctors for free, so depending how many pages you need or if they fee is high, sometimes you can ask a doctor if you can have them sent to them and they give them to you.
The easiest way is just to ask your doc, especially for current records, if you are looking for things from years ago or different hospitals/doc you may need to go the medical record route.

 

[DavesMom]

Hi Bob,

I am a firm believer in getting copies of any tests and luckily it costs me nothing. This point was driven home to me when I had my first CT scan a couple of years ago. My cardio's nurse called a couple of days later to say that everything looked fine but that I'd start having CT's on a yearly basis. However, when I got my own copy of the report it reported that I had a aneurysm measuring 4.5 cm as well as aneurysms in a couple of the great vessels. I would never have known this important bit of information had I not gotten the report.

So yes - get and keep all records. As I said in another thread, I tend to fret over yearly changes that are basically meaningless, so avoid doing that. : )

Take care and good luck.

Cheers,
Michelle

 

[Marguerite53]

Hi Bob.

Part of the reason so many of us are here on this forum is because we like information!! Somebody professional told us something was way wrong with our hearts and we decided that there must be MORE information than they were giving us so here we all are trading stories and.....yep.... information!

Your echo will be interesting for you to figure out. We have links and resources and members who will help you decipher everything. The echo helps measure the valve in question. Is it closing up or leaking (can't remember which yours is) and by what measure. That measure is what generally determines when to have surgery. The truest measure of things (without actually being in there surgically) is the heart cath/angiogram. They do those so that they know what size valve to have off the shelf for you, and to really determine that it is indeed time. Also, of course, to check the nature of your arteries since if you should need bypass surgery it's best to do it while they are in there already. I did not have a heart CT. I was not interested in blood work.

I had to wait 3 years until my valve got bad enough to warrant surgery. So for me, the yearly echos held great interest for me -- watching the thing deteriorate (as if I couldn't tell by my symptoms ). Everyone is different. Like anything, it is good to have your own copies of things because they are resources telling you about you.

The only other thing I requested was my complete file from my time in the hospital. That had all the costs listed, all the meds, etc. etc. THAT was very interesting. The saw blade they used to slice my sternum was $143!! I wish I'd asked to keep that saw!! I like knowing what drugs they used on me. But I certainly really haven't had any need to know. It's just personal, and they're mine for the asking. Haven't looked at them in 3 years, though.

So call the cardio and have the nurse forward you the results and reports of your tests. DON'T STRESS over what you don't know about what the reports say. If you have a question, bring it here. Let us help you decipher it. Then if it is something that is really bothersome to you, call the nurse back and have her send a question to the doctor for you. That Michelle found an aneurysm on her report that hadn't been mentioned to her is not good doctoring in my opinion. We need to know all that we can going into this situation. So this will give you the opportunity to try to be on the same page with the professionals and allow you to learn more.

Good question!!

Take care.

Marguerite

 

[dick0236]

Bob, I would also suggest that you get and keep copies of all meaningful records. I do not understand much of the "nitty gritty" language but I have been able to pick up on a few points that needed clarification. Having a complete set of records may also come in handy if you move, or change cardios.

 

[Superbob]

Bob,

I just want to underscore the importance of getting copies of all your reports -- results of all the tests and the like. You are entitled to those records -- they are yours. Sometimes, the medical world falls short in keeping old records, so if you have them in your archive, you are ahead of the game.

As the years go by, it is very helpful to have the numbers for doctors to compare in detecting and tracking trends. In fact, I recently requested and got my echo and c-scan results of recent weeks on disks so I could send them to my surgeon of '05. No one quibbled with me or imposed a fee, so I assume you could keep the actual scans on disk, not just the paper reports of the numbers the scans generated.