Thursday, September 12, 2019

What My First Crush and My First True Love Have in Common Pt. 2

If you haven't read the first part of the story, go here and come on back.  Oh, and there will be saucy language because frustration with the healthcare system is strong in this one.

It was three excruciating months of waiting just to get into a cardiologist.  We had been restricting the Mr lifting, and I wouldn't even let him carry heavier grocery bags.  Since we didn't have answers specific to his case, I wasn't taking any chances, and thankfully, he didn't give me any problem with that.  When we finally got in to see the cardiologist, I knew immediately this man would not be part of our team for long term care. He was very matter of fact, spoke so quickly that he was three sentences ahead before you could process what he'd just said but more alarming was he lied.  I asked if I could record our conversation for note-taking purposes and he said no, that he didn't mind, but HIPAA laws do not allow it.  That is a lie, and I confirmed as much when we left the office.  We are also in a non-disclosure state in which I did not need his permission to record the conversation which my friend who works closely with HIPAA informed me of after the fact.  He also spread gross, and frankly, libelous information about John Ritter.  He said that most people know about this condition because of John and that he (John) knew he had the condition and chose not to treat it, so it was his fault he died.  It is a well-documented fact that John did NOT know he had this condition, and the attending doctor even said it was not in his records.  His wife has confirmed in numerous interviews that he was undiagnosed and that when you are having heart attack symptoms, you must specifically ask them to check for an aortic aneurysm because normal tests for heart attack will not catch this!  The Mr thought I was going to explode, but I didn't.  But in my mind, I was already moving on to the next doctor because I know enough of the story from advocacy posts to know he was grossly misinformed and spreading that information to other patients.  At this point, we just wanted the MRI we'd asked for done, but we weren't getting that either, he wanted to do a cardiac CT scan at the local hospital.  Whatever, just get it done please, it's been three months!

They called in the pre-authorization to our insurance company, and the Mr got a notice it would cost us $650 out of pocket.  Ouch.  A few days later, our insurance company called us and said we could certainly go to the hospital to have it done, but they wanted us aware of our option to drive two hours away and get the exact same test for $77 out of pocket.  Well, what would you choose?!  He called the doctors office, and the nurse spoke with him, and they gave the okay to have it done there, and they'd worked with that company before, but there would be no doctor on staff to go over the results.  Um, that's YOUR job, dude.  We don't necessarily need same day results if it means we save almost $600.  We've waited this long!  The Mr takes off work, I drive us down since he has to be on heavy duty heart meds to dilate the vessels, we get the scan done and get a copy of the disc.  We stop at home to make a copy of said disc with the entire radiated scan for our records and then dropped it with the docs office.  A few days later, they call us back and tell us that the disc is not compatible with their software, and it needs to be sent to their IT people to convert it.  Whatever just get it done.  A few more days and he has to follow up and "oh, we can't read it, and the doctor has no way to get the measurement we needed.  You really should've gone to the hospital."  Oh, you mean the hospital that you get a kickback from for referring patients and making them pay obscene amounts of money for the exact same test?!  We were LIVID.  He'd been radiated unnecessarily, and his father passed from a cancer that is susceptible to radiation so needless to say, we don't want to be taking that risk.  We felt like we were being punished for not bending to their will, and we could even see right on the images that there was, in fact, a measurement tool right on the screen.  Maybe it's not the one they're used to, but you charge $330 for 15 minutes of your time, do your GD job!!!

The next step still was not the MRI we originally asked for but a TEE which is basically an ECG down the throat and under sedation.  REALLY!?!?!  You're subjecting him to more crap that he doesn't need to be subjected to just so you can get him into the friggin' hospital!?  We were glad another cardiologist was going to be doing the procedure, but once I heard the date they scheduled it, I knew it was the same date she said his doc was at the hospital and somehow I knew we'd get stuck with that asshat.  We did.  Not like he actually wanted to do it though.  The Mr could hear him getting pissy with the nurse that he wasn't on his schedule and she said the other doc could do it and he reluctantly agreed to just take him.  Seriously!?!?  This is your patient!!  Why would you not want to do this yourself?  Oh, that's right, because you want someone else to do your job, so you just have to check a box saying you read the results.  Jag off.  He went into the room and began ranting at the Mr about how his insurance company was running his health, and he'd never seen anything like this...blah, blah, blah.  Shove it down his throat and be done.  After he did, when I could hear him coming, you can bet your sweet ass, I recorded that conversation, especially after extensively reading that I had every right to according to law.   He again began ranting about insurance to me as I looked through him and did not utter a word.  When he saw he was getting nowhere, he basically confirmed that everything the stress test told us back in March was accurate.  We asked questions and felt we got zero answers.  Actually, he was literally checking his cell phone and inching out of the room and audibly sighed when we asked questions.

The Mr was told, "go live your life."

(If the Mr hadn't been laying between us, I would've gone here.)

Grandma must've been holding me back from the other side because all I could fantasize was myself lunging over a groggy Mr's body to strangle the arrogance out of him.  I got the Mr loaded into the car, and we both said: "we are so done with this asshole."  The Mr has had his father, and his grandmother both directly die from medical malpractice, and both were "too nice" to sue with legit cases.  That is skipping this generation.  I refuse to let anyone touch him that I don't trust.  This guy was a means to an end and with no more answers than we had four months earlier.

At that point, we began searching for a new cardiologist, and when we told some friends of ours about his situation, the guy said his dad had an amazing heart doc and gave us his number.  The Mr called the following Monday to make an appointment to establish a relationship and was told he couldn't see  Why you ask?  Because they were in the "same practice."  I'm not talking a small docs office of family doctors that all pass patients around if one is booked out, I mean, a network of 115 doctors that fall under the umbrella of the largest health care company in our system were now not options for him.  So basically, if you had to go to a specialist and picked a doctor based on his resume and then found he was an incompetent shit, you are stuck with him.  If that isn't proof the health care system is big business and utterly and completely corrupt and broken, I don't know what is.  We only had one other option, which was another university/teaching hospital.

It would be another friggin' month before we could get in there, so we printed out the questions we had originally...again and went in for the appointment.  We had a resident do the initial consult and asked and answered a lot of questions.  Again, we had to fill her in that he's lost 150 lbs, exercises and eats right 6 days a week and has perfect blood pressure, bloodwork and even this condition is often diagnosed with athletes due to exceptional heart performance.  The doctor came in, and he was nice, more willing to listen to our questions and when it became apparent that they do not like to give specific numbers when it comes to exercise limitations, I said "look, he's got 35 lb dumbells at home for strength training, can he lift those or not?"  "Yes.  Just don't become a meathead."  Seriously, this is the second doctor that equates strength training with training for Mr. Olympia.  WTF?!  I asked if this could be caused by trauma because the Mr took a hard blow to the chest 7 years ago and kept wondering if he did this to himself.  The doctor said no it's not which took some relief off of the Mr.  (To be clear though, I've done extensive research since that appointment and it can, in fact, be caused by trauma to the chest but we have no way of knowing if that is the case.)  The doctor actually said that given the "surface area" (aka his size), his reading is actually the high end of normal.  This is a question we specifically asked the other guy, and he scoffed at it and said no.

Our plan of attack is to do yearly checkups, alternating with an ultrasound next year to make sure the size is still the same and the following year an MRI like we asked for in the first place and alternate.  He said only if a CT scan is absolutely necessary will they do one.  There is obviously some of that God complex thrown in for good measure which I think is a prerequisite, but so far we absolutely trust that he's the right person to move forward with.

This is how we've spent March through August of this year.

We are lucky that the Mr is in a low-risk category for now and it may never turn into anything that needs to be addressed.  If it grows, heart surgery may be in his future especially if the small leak they found gets any worse.  At this point, we are considering this discovery for the blessing that it is because 90% of the people diagnosed with it are post mortem.  Aortic aneurysms and dilation can lead to dissection if a large amount of pressure is thrust upon the heart such as heavy lifting from bodybuilding to helping someone move furniture to car accidents.  Dissections are almost always fatal if the doctors don't know to look for aortic aneurysms which is why it is critical you tell them to check for it in a heart attack situation as it considered a life or death trauma.

This post was not only to bring awareness to the importance of asking yours (or a loved one's) doctor to check for an aortic aneurysm if heart attack symptoms arise but to again, stress the importance of being your own health advocate.  For all that is sacred, do NOT blindly put your trust in doctors.  Do not be afraid to ask questions or insist on what you have read is the right protocol because I've seen dear people I loved pay with their lives because they were too nice to say anything.  Never go to an appointment alone if you can help it and fill the other person in on your thoughts and how you want to proceed with your care.  The Mr has a habit of totally freezing and kind of zoning out in appointments.  I will give a pause and a look at him, and if it's something I know we have a question about, and he's not triggered by the topic, then I speak up.  That happened with three different things at the last appointment, and they were big ones.  Some people just don't process appointments the same.  Find the type A person in your life and ask them to come with you to something important.  My aunt had us there along with her husband for her cancer diagnosis 10 years ago to take notes, and he had zero problems with me recording the session, and I transcribed the notes.  Check your local laws regarding recording doctor conversations and HIPAA laws, so you go in informed.  It's always good to have a recording just so you can go back and really hear what was said.

The Mr is still restricted for some things, but he was a happy boy when we went to Trader Joe's after the doctor's appointment, and I said: "do you want to carry the heavy one?"

With a smile, he said, "yes, I do!"

To learn more about aortic aneurysm and dissection and what tests to ask doctors for in a perceived heart attack situation, please visit the John Ritter Foundation for Aortic Health.

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  1. I'm so glad you are there for each other! You are right on about medical advocate, it's so very important. Glad it's a wait and see, praying it stays as is. Have a great day!

  2. The fact that this was found via a fluke is a blessing to me. While I hate the idea of being restricted, I know it'd be so much worse to find out the hard way that I have this. I can still do just about everything I need to do and my goal is to make it so that I never actually need valve replacement surgery. I really think everyone should consider getting checked out though, it is not something you want to find out after the fact. Also I learned that Arnold Schwarzeneggar had a bicuspid aortic valve replacement. I couldn't find anything that specifically said he had an aortic aneurysm, but in a recent interview he said he now does lower weight, higher rep exercises per doctors' orders. I figure if the Terminator can maintain his body with lower weights, I can certainly find a way too.

  3. I'm glad you found a doctor you feel better about. I think it's crazy that you can't see another in network doctor if you choose to. Not every patient is a fit with every doctor - your original asshat might have been the perfect fit for another patient, you never know. And 115 doctors is a huge group to be locked out of especially if they are specialists which is a limited pool in the first place.

    I'll take competence over bedside manner, so I'm ok with a pretty high level of brusqueness, but I do want my questions taken seriously and I want the doc to remember that they may do this for a living, but it's my first time.

  4. It was months of angst and ridiculous phone calls hoop jumping that you never should have had to go through given the severity of the situation. I'm so glad you found a good doctor, who's not only competent, but also a straight-talker and actually answered questions that the other doof wouldn't. Now you can have some peace of mind and also know that you can reach out the doc in the future -- and get a straight answer -- should you have other questions. I, too, am a note-taker for appts when I've gone with loved ones, as well as for myself. I've had many (did I mention MANY) doctors' appts in the past 18 months (ARGH!) and this is the one area of my PTSD that has actually been a benefit to me, in that I am a whiz at separating feelings from facts and can take in all the doctor is telling me, write it down, ask follow up questions, etc. No matter what I'm being told, it just sticks and I can only assume that's partly because of what I went through with a loved one where I needed to be the voice of reason and emotion needed to take a back seat in those moments. Once I get home and process things, the emotions may hit me and I allow myself a little falling apart time. You made an excellent point about having someone with you if you need to so it's a second set of ears to take in information, as well as they may have questions you didn't think about. And a great point about not settling for crappy medical professionals who really don't have your best interests at heart. Insurance companies rule the roost now, but if you search for it, there are still doctors who really listen and want to partner with you. And it sounds like you guys found that cardiologist. So happy you have answers, hope, and a sense of normalcy again!

  5. I might have mentioned this before, I now video medical and dental explanations. I just tell them, I am not going to remember, and so far they do a good job of getting it all recorded for me (or family) to watch later. No one has said no.

  6. I also wanted to say that while I do not make a stink, I will no longer put up with poor service or attitude from anyone. Bank teller, store clerk, doctor, etc. I just ask for someone else. And I insist.


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