Sorry, hit enter before I was ready!

I gave the caution because in some cases you may find "troubling" entries that could do you more harm than good. For example, I knew that my embolisms and infarctions were bad but the file called them "massive"; after discharge there was hemorraging in one of my lungs; and there was a growth in a lung that the doctors were watching before they ruled out a tumor. I am pretty strong but got a little shaky reading through it all. Bottom line is that I now have more and better questions for my next appointment and don't feel in the dark about where things are headed.

Yeah, I do like having information as well. I don't need all the detail and I know that often how things are framed in a medical record doesn't always equal severity. Sometimes things sound a lot worse than they really are, so reading records without the assistance of interpretation can create misinformation and that's where I think some people get freaked out a bit.

I do think when you are initially in the process of being diagnosed and then treated, especially if your life is in immediate danger, the doctors are not going to go through all the the finer details with you. When I was in the ER, I was given heparin right away because they suspected PEs. Once I had the heparin, I had a CT scan to confirm clots. The ER doc did tell me they were massive, in both lungs, and likely causing heart damage, but they had to disclose that to me then and there because I needed to give my consent to have tPA administered (clot busting drugs). But the word massive really didn't mean much to me because I didn't know what massive meant in the context of a PE. I didn't have the capacity at that point to really get that.

Otherwise, I think the focus of doctors in the hospital is really just to get you out of a critical phase and make sure you're no longer at risk. Of course, some of it comes down to asking doctors questions. I was in the hospital for 7 days and everyday, especially as I started to understand how critical my situation had been, I asked questions. So I think too a good take away is to be proactive in understanding your situation.

By the way, anyone can order their medical records even if they're not on line, and you don't need to switch doctors to do that, just so people know that.

But yeah, it's good to have some information so you know what kinds of questions to ask. Plus it's kind of interesting.

I was happy to have my medical records to read as well, and yes I think it made me better educated as to what had happened and helped me be better prepared for following up with my doctor.

Actually, the doctor I had recommended to me at the time to keep a copy of all of my medical records together, in my own personal file, because he said it would make things easier for doctors down the road to know exactly what had happened and know what courses of treatment and investigation were made following the PE. I think that's very good advice actually. Unfortunately, although I did keep a file all together, I've moved since my PE's so the file is somewhere, but I don't know where. I sincerely wish I had all of the records, because I have continued experiencing health problems since the PE, and I think not only would having those records have made it easier for my doctors to understand the gravity of what had happened, it may have affected how they treated me in other situations. While it's just conjecture on my part, possibly I could have avoided some other unfortunate health complications had they had the whole picture in the beginning from written medical records as opposed to just what I explained (and FYI I always offer to sign a release of records and have the information for the hospital where I was initially treated, but most dr's haven't wanted to bother getting them).

Anyway, my point is that even aside from being able to see for ourselves what happened and the specific treatment so that we understand it better, I think especially for people who had more severe cases of PE, especially those termed "massive" it's probably a good suggestion to hold onto them, and you've got the information readily available should you need them for reference.

Because I got a copy of my medical records from a hospital visit (2 for PE's) I was able to track down just why I was being billed for something that I knew I shouldn't have personally been billed for.

On one of the many pages, tiny little print, a nurse had checked the box that said it was for Workman's Comp!!!!
Hadn't worked for a couple of decades. (grin)

So not only does having your own records help with some questions it might also save you false billing charges.
You can ask for an itemized billing record of all your charges.

Here's something interesting---- probably doesn't apply to everyone...
http://www.forbes.com/sites/nextavenue/2013/09/17/you-got-a-10000-hospital-bill-now-what/

Thats the truth on the billing part. My hospital stay was overbilled to the tune of $30,000.00. They had charged me 8 days icu and 3 in standard room which is the reverse of the actual, amongst other erroneous charges. I can say getting the detailed bill did let me see some of the diag tsets that had been done and be able to get more detailed answers from my docs regarding what was done and what these tests showed.

My two day hospital stay rang up a $25k bill. We got it in the mail about 2 weeks ago, and we got to see exactly what they billed us for. They said that we could get a record of my stay, but they didn't recommend it at the time just for the sake of anxiety. My dad had a pacemaker put in less than two weeks before my PE, so we were already on edge with him (although he is doing perfect right now!), we didn't need to read anything that could cause more anxiety for both of us. All I can say is, after looking at everything, thank goodness for health insurance...

Steph said:
"They said that we could get a record of my stay, but they didn't recommend it at the time just for the sake of anxiety. "

I understand that you have to do what you have to do to allay any anxiety you might get----- but I wonder if that was the ONLY reason you were told to not get the billing records. Color me suspicious.

Cave, I actually find that quite odd as well. Since when dies the hospital care how high anyone's anxiety level is?

They told us everything they were doing and why the tests needed to be done. They were very informative about everything, and there was nothing suspicious on the bill and it all made sense. But reading all of the information now, as compared to when I was admitted, it was definitely the best thing they could have done since now we all understand what was going on.

Billing records or medical records? The itemized charges or bill usually just describes services, not actual medical evaluations. So maybe they were suggesting you not get a copy of your medical records. The only anxiety that the bills would cause would be anxiety over the dollar amount.

My hospital bill included charges for stool softeners which I declined during my stay. It seems small but the fact that I declined them and they still billed me for them just made me mad so I fought that charge... $20 out of the $60,000 charges sent to my insurance. Hahaha, fight the power!

Maybe it was the medical records. I dunno, it's all a blur that I've pushed to the back of my mind, all I know is that the bill came, I'm feeling a lot better, and I'm half-way done with my treatment and happy. ^_^

rmb said, re: billing----"My hospital bill included charges for stool softeners which I declined during my stay. It seems small but the fact that I declined them and they still billed me for them just made me mad so I fought that charge..."

Good for you! I was billed also for stool softeners when I didn't need them. When I declined the stool softener each day I offered to save my BMs to show them that I didn't need a stool softener! They declined. But they still offered me one the next day.

I actually did have to save my BMs to be sure I wasn't passing blood so there was this plastic stool catcher on the seat that sat over the bowl. Fortunately I was too unwell at the time to care about what that was doing to my dignity, ha!

I am agree with the doctor opinion because doctor's are not tell every thing. Sometime patients are under depression so i am agree with the doctors.