Which Approach Do You Prefer?

[Jkm7]

Very often I read of people asking for help in understanding their test results. I am in no waying saying anything negative about that.

My question is: Seeing as most of us cannot easily understand the complicated detailed sheets of tests results with language which we are not trained to read and numbers we don't understand, do you really want those sort of results?

Or, would you/do you prefer for your doctor to speak to you in English and tell you what you need to understand about your condition?

It is my doctor's style, after I have an echo or nuclear stress, to speak to me (or sometimes write a letter) and explain what the tests revealed. I have never been given the sheets of paper with all 'the language and numbers' and have never asked for it as I know I can't read it anyway.

In the event I need another opinion or need these test results for any reason, I can always request them from his files, can't I?

Anyone else here just want their doctors to speak with them and directly answer your questions during this conversation?

 

[Phyllis]

Dick and I prefer both- a hard copy of the results and a good explanation from the doctor. It's always good to have a hard copy in case of travel or an emergency where your doctor is not available.

 

[Ross]

I want both, but in all honesty, the Doctors sometimes don't tell you everything that the reports say. This is why I want the copies. Honestly, I don't think they read them completely sometimes.

 

[Marguerite53]

Different people need different kinds of information in order to process their situation. I'm not a particularly patient person. I think I'm educated enough to absorb new terminology and concepts. I need to "know where the ship is sailing" at all times. SO. For me, I wanted the reports in my hands. My cardio was not very forthcoming, yet highly respected in her field. I felt I had to arm myself with specifics in order to get the kind of information I wanted from her.

It helped me feel more in control by having those statistics in front of me. It allowed me to think that I could go elsewhere, could compare notes, could gather more info. I had a lot of time to kill! My wait was 3 years. It became useful for me as an exploratory tool to have those test results.

Even now, I've decided to request the report from my TEE the day of surgery. The surgeon told me that they use the TEE then to get an accurate measure on the valve so they know what size to have handy. Then they measure once they're in there with a fancy caliper. I'm curious to know just exactly how stenotic my valve was. It will help me focus my progress (which will eventually, maybe, be downhill again since I chose a bovine tissue valve).

I need these things. Perhaps you do not. If you are comfortable (and it is FINE to be comfortable!! ) with your quality of information and your relationship don't give it another thought.

Yes, the reports are always available to you. In my case, I started trying to dig back 10-15 years, and of course, the various cardios over the years had purged their files....so, no..... my way back reports were unavailable. There was no need for those... just curiosity.

Marguerite

 

[catwoman]

As a pro-active patient, I do want copies of all test results. I can compare them to see changes in my condition.

It's great if your doctor explains your echo results. Not all doctors do. Some are too busy; some think their patients are incapable of understanding anything medical. And perhaps an occasional patient is unwilling or incapable.

That's why many of us educate ourselves; if you're intelligent enough, it's not rocket science. There is a learning curve, of course; thus, the frequent request from a newbie for help in interpreting test results.
There are also places on the internet with normal values for echoes that you can refer to.

(I also take a pro-active approach with my cats. I have bought many veterinary books, some of the same as my vet. I check lab results against the range norms, read about common & unusual symptoms/diseases. Twice, I have led my vet to a diagnosis: (1) exocrine pancreatic insufficiency and (2) keratoconjunctivitis sicca. I suggested (1) she start the kitten on Viokase V & then run diagnostics (positive); (2) she refer me to a DVM/ophthalmologist. My vet appreciated my taking the time to save her time & help the patient.)

My previous cardio scheduled the echo first, then the echo results were interpreted, a report written & finally my cardio examined me and gave me the results -- all on the same day.
I had to beg the new cardio's staff to send me a copy of the most recent echo, which was not scheduled the same day as my exam. Groan -- 2 co-pays for what I was getting previously with 1 co-pay! I am scheduled for a recheck in November. I will ask to schedule future annual echos the same day as my regular annual checkup -- or I will find another cardio. I have a lead on one here in Fort Worth whose specialty is valve disease -- just in case.

But doctors are not God. At one time, they too were at ground zero, learning.

 

[Jkm7]

Thanks for all your viewpoints. I'm glad I asked.

 

[ALCapshaw2]

I definitely want BOTH.

My experience is that Cardiologists seem to think they get everything they need to know from you latest test(s). That's NOT always the case.

After a not too distant echo, my cardio was downplaying the small mitral valve opening and explaining that the number was the result of a calculation and the numbers have some 'variability' yada yada yada.

Then I told him I had charted my echo numbers on a spread sheet and this latest number confirmed a Negative Linear Progression over the last 2 years. "That's disconcerting" was his comment, and he agreed to refer me to a surgeon who impressed me while making rounds during my last surgery.

Bottom Line: It's not that hard to read most test results, especially if they include the list of "normals" beside your results. There is an explanation in the REFERENCE FORUM of what all the acronyms mean for various test results such as Echo, Catheterization, etc. After a while, you develop a reasonable 'feeling' for how to interpret your results. It is in YOUR Best Interest to have copies of ALL of your tests.

'AL Capshaw'

 

[Lynlw]

As a pro-active patient, I do want copies of all test results. I can compare them to see changes in my condition.

It's great if your doctor explains your echo results. Not all doctors do. Some are too busy; some think their patients are incapable of understanding anything medical. And perhaps an occasional patient is unwilling or incapable.

That's why many of us educate ourselves; if you're intelligent enough, it's not rocket science. There is a learning curve, of course; thus, the frequent request from a newbie for help in interpreting test results.
There are also places on the internet with normal values for echoes that you can refer to.

(I also take a pro-active approach with my cats. I have bought many veterinary books, some of the same as my vet. I check lab results against the range norms, read about common & unusual symptoms/diseases. Twice, I have led my vet to a diagnosis: (1) exocrine pancreatic insufficiency and (2) keratoconjunctivitis sicca. I suggested (1) she start the kitten on Viokase V & then run diagnostics (positive); (2) she refer me to a DVM/ophthalmologist. My vet appreciated my taking the time to save her time & help the patient.)

My previous cardio scheduled the echo first, then the echo results were interpreted, a report written & finally my cardio examined me and gave me the results -- all on the same day.
I had to beg the new cardio's staff to send me a copy of the most recent echo, which was not scheduled the same day as my exam. Groan -- 2 co-pays for what I was getting previously with 1 co-pay! I am scheduled for a recheck in November. I will ask to schedule future annual echos the same day as my regular annual checkup -- or I will find another cardio. I have a lead on one here in Fort Worth whose specialty is valve disease -- just in case.

But doctors are not God. At one time, they too were at ground zero, learning.

This reminds me of a conversation i had w/ one of the cardiologist after justin's broken pacer removal. I had been going over all his reports and had a question, I got the report out and started to ask and the doc (NOT justin usually card) a question and he told me that HE went to school for years blah blah to understand complex hearts and bascally hinted it would be over my head. I said yes you did go to school for years and i didn't BUT you had to learn about every heart and every thing involved, BUt I only had to learn about one heart , Justin's and after 16 years I'm sure i understand it enough to ask specific questions and understand what you are telling me if you are good enough to explain things clearly. he never tried that again,

 

[Nancy]

I want it both ways, for my husband and also for myself. It is greatly to your advantage to learn how to read medical reports and to understand medical jargon and phrases.

This is a case where ignorance is not bliss. The more educated you become about your medical problems and care, the better it is for you by FAR!!!

You may not become as educated as your doc. but trust me when I say that you can learn things in depth. Knowledge comes layer upon layer and by reading until your eyes fall out.

You have to know enough to know when the care you are getting is OK or is not OK.

I think a paraphrase from one of the Godfather movies applies here.

Robert Duvall who was the mob attorney and took care of their business exclusively was questioned about what his role was, and sort of questioning whether he was a real attorney. He said something to the effect, "you may never have heard of me. I have a special practice, I only have one client."

This is your special practice. You or your loved one has to learn as much about YOU as possible.

Remember, your doctor sees you maybe a couple of times per year, you and your loved one have to take care of you every single day 24/7. So you HAVE to know what is going on.

 

[pipersmith]

Both Please ;0)

Both Please ;0)

I would hope (and I am an idealist) that a doctor could cater to the individual wants/ needs of the patient on this one.

We are sort of trained as we grow up - to just trust whatever the doc says, let them do as they will, and just take a passive role in our own health care. As (hopefully) health care transforms, many providers shift toward patient centered care. As such, doctors should share results and decision making with the patient/ family, giving the patient a more assertive role in his/her own care. I think that the points that you bring up center around the most effective way to do this.

For some patients, the discussion is needed. They haven't the desire or understanding needed to decipher test results. I personally, thanks in great part to the Internet, strongly desire to have exact tests and results in front of me. Medicine is not always black and white, and we would hope that the gray area is evaluated by our doctor as we would evaluate it. Forums like this offer the opportunity to "bounce" the results off of others to see if they read them the same way.

Years ago I was hospitalized with pancreatitis. People would come and go, do things, take blood - and I never knew what they were looking for or why. I find that terribly unsettling. Just now - with new health questions - have I requested my records. How can you make informed decisions without information?

Just my take - and I think you have a very important question - that no one really considers until they are here. Just another great result of sites like this one!!!!
Piper

 

[catwoman]

I think a paraphrase from one of the Godfather movies applies here.

Robert Duvall who was the mob attorney and took care of their business exclusively was questioned about what his role was, and sort of questioning whether he was a real attorney. He said something to the effect, "you may never have heard of me. I have a special practice, I only have one client."

This is your special practice. You or your loved one has to learn as much about YOU as possible.

Remember, your doctor sees you maybe a couple of times per year, you and your loved one have to take care of you every single day 24/7. So you HAVE to know what is going on.

Right on, Nancy!!!!!!!!

Doctors will have many patients during their careers, but I will have this patient (me) only once.

 

[susieq14]

Definitely get copies of your test results!

Definitely get copies of your test results!

Wow this is a subject I'm becoming very passionate about. I do agree with you that it is quite confusing at times and also could cause you more concern to read some of these medical test results but you have to be your own advocate like many others have said before me. Who better to watch out for yourself? You can't always trust the doctors! Let me share a story with you that just happened to me. It is a little off the subject but I think important.

This past winter I was seeing both an ENT (for my endless sinus and ear infections) and a Gastroenterologist (for my erosive esophgitis). The ENT scheuled me for a sinus CT and the GI doc ordered a chest CT. I arranged to have them both done at the hospital the same day. Well the hospital made a mistake and sent both reports to the ENT only. When I went to the ENT a week later he was ranting and raving and wanted to know why they did a chest CT when he only ordered a sinus CT. I told him my GI sent me for that. Then as he started to read the report he got very silent and said you have a problem - the scan showed an indeterminate nodule on my lung. Since lungs are not the forte of GI docs I followed up with my primary care physician who sent me to a pulmonologist. She said it was only a pinhead and told me not to worry about it since I didn't smoke - well I insisted that we do a follow-up scan because I said Dana Reeves who never smoked died of lung cancer just two days before my appointment so she agreed to do another in a year.

Anyway the moral of the story is that even after I complained to the hospital that they did not send the report to the right doctor, I never heard from my GI Doc until last week!!!! Honest to God he called me at 4:55 pm last Friday and apologized for calling me out of the blue but wanted to know if anyone had ever followed up with me about the results of my chest CT. He was quite relieved when I told him yes.

What I don't understand is why don't doctors have a "tickler" file to remind their staff to retrieve test results done on their patients? If you don't call to ask for the results, it is possible that you are not hearing from the doctor because he hasn't even read your test results and you're thinking he is not calling because all is well. Not so. You have to be proactive

 

[Jkm7]

Thanks, folks. I feel like I've been steamrolled!!!


I asked. Thank you for your answers.

And, yes.....I always allow a reasonable amount of time to pass after a test to hear from my doctor. If he/she hasn' t contacted me, of course, I follow through and contact their office.

 

[Dave_40]

I find that doc are busy and dont rememebr the details of the last time you visited. 100s of patients does that. I am often annoyed by the curt phrasing. I am in camp that you need to manage your destiny and if it's in bad state only you are motivated enough to manage it. If your not in a bad way it may not be as important and mass market care works.

Echo for example. I find it doubtfull that card has a clear vision of trending of enlargement even if it's one simple variable in the sheet. I make it a point to walk in with my own copy results from records and make him point to lines he thinks are important and tell me about them in detail he thinks is appropriate.

They take calculated or not risks with our lifes using few minutes max rule of thumb expert judgement and dont want to be held responcible for bad choice.
It's not like were getting the care the president would.

An analogy:
You go to vegas with lifes savings in pocket.
They are the backjack dealer and have to hit on 16 or less, you get to think and live with loss. They are playing with other people's money and simply go home at night win or loose.

 

[marky]

Both.
However I noticed when they gave me the (dumbed down) version for my records it did not include many of the actual facts of my condition.
When my cardio readme her version it included the fact that I was in Tamponade 2x and the seriousness of my condition.
So I prefer both!

 

[Lynlw]

I find that doc are busy and dont rememebr the details of the last time you visited. 100s of patients does that. I am often annoyed by the curt phrasing. I am in camp that you need to manage your destiny and if it's in bad state only you are motivated enough to manage it. If your not in a bad way it may not be as important and mass market care works.

Echo for example. I find it doubtfull that card has a clear vision of trending of enlargement even if it's one simple variable in the sheet. I make it a point to walk in with my own copy results from records and make him point to lines he thinks are important and tell me about them in detail he thinks is appropriate.

They take calculated or not risks with our lifes using few minutes max rule of thumb expert judgement and dont want to be held responcible for bad choice.
It's not like were getting the care the president would.

An analogy:
You go to vegas with lifes savings in pocket.
They are the backjack dealer and have to hit on 16 or less, you get to think and live with loss. They are playing with other people's money and simply go home at night win or loose.

I think if your doc can't remeber your issues or doesn't have the big picture/trends of your heart, you need a new doctor.

Justin's heart is very complex and cardiologist I've even paged his card at home and with out Justin's records he can remember everything he had done w/ his heart and what his pressure gradient has been doing.and he has thousands of patients, actually we had a fellow that followed Justin when he was a toddler and sent about 6 months in the hospital, then we lost track of her, when justin was about 15 we found her and have kept intouch, I asked her a genral question about justin's heart defect and she drew me a diagram of Justin's heart from memory after not seeing him for 13 years.
I'm not saying all docts are as good , but i certainly wouldn't put up w/ a doc that is like you are descibing, there are alot of good docs out there,IMO get a new one, Lyn

 

[francie12]

Here is a useful tip for cardio visits, but you need to have access to your own records to do it. Track your measurements (in our case, LV and AO dimensions) by writing them in order of date on a sheet of paper, and show it, updated with the day's new test results, to your cardio at each visit. This gives a clear picture of how your condition is progressing. And you are sure your cardio is not just looking at the isolated number from that day's test! These numbers are not hard to pull out from the technical report. Doctors do not mind this, and you walk out of the appointment feeling in possession of the facts!