In the past few months, it has been revealed that fluoroquinolones increase a person’s risk of having an aortic aneurysm. I have had several questions about this pertaining to getting screened for it. Do we get screened or not?
My answer is by all means, if you are already having other debilitating adverse effects from fluoroquinolones, it makes sense to practice due diligence and get the screenings done. I, myself, decided I should get screened. It is far better to know if you have one than to not know. If you have one, you can be monitored for it. And if at some point it dissects, you know what you are dealing with ahead of time, which gives emergency room doctors a better chance at saving your life.
My intent here is not to scare. It is to reaffirm that knowledge is power. So if you can, get screened for your own peace of mind.
It sounds easy enough…get screened. Get the information, monitor, or know that you don’t have anything to be concerned about. Right?
Wrong. And I am writing this having firsthand experience trying to get the screenings completed. This sounds like a rant because it is.
My doctor, bless his heart, has researched the risk of aortic aneurysms and has written the orders for a screening. He warned me ahead of time that insurance companies are not on top of the newly released information, so there was a chance it would not be covered. He asked me how I wanted to proceed if it wasn’t covered.
I told him I wanted the screening even if insurance didn’t cover it, because again…knowledge is power. And in this case, knowledge could save my life.
And so it began…a month ago. The doctor’s office reached out for a prior authorization from my insurance company. It was denied. No worries, I thought. I will self-pay. I set out to get pricing on what it would cost me to pay out of pocket. Even this has been an arduous task.
I called the main hospital system in my area, and spoke with someone who gives out price quotes. She quoted that normal self-pay was around $4400, but with discount for my insurance, it might cost me around $440. No problem. It is well worth it. And not really that much as far as I am concerned.
I called central scheduling. It took me 7 phone calls and an hour straight on the phone to finally get it scheduled. At the time, I thought THAT was the most frustrating part. It seems that the diagnosis of adverse drug effect isn’t sufficient. But since I was not having chest pain, my doctor’s office wouldn’t change the diagnosis.
I explained to several different people, the risk of aneurysm from the fluoroquinolones. The final woman I spoke with, thank goodness, understood, and scheduled me. I told her I understood that my insurance denied it, that I had gotten pricing from the billing department, and was fully prepared to pay for the testing.
Doesn’t that seem like it should suffice?
No. About 20 minutes later I received a phone call from a supervisor indicating that I had to go see a financial counselor in person or they would cancel my echo appointment. Okay, fine. I will do that. I scheduled it, knowing full well I would be wasting two hours out of my day. But I was willing. Because I just want the dang test.
About three hours later, the same supervisor called me back. It seemed her supervisor decided they would cancel the test as well as the financial counseling, because it is an expensive test that they didn’t think they would get paid for. First of all, the supervisor told me it would be $7000. That in itself is preposterous for a basic echocardiogram looking at the aorta. Second, they would not take a credit card from me and said there was nothing they could do for me.
She said they called my doctor’s office and since they wouldn’t change the diagnosis to chest pain, they were cancelling my appointments. THIS was the frustrating part. I meditate. But even I was fired up!
I cannot believe we live in a place where first of all….there are antibiotics that do such significant and debilitating damage to a person. Second, that the medical community and insurance companies, after all these years of people becoming debilitated from these drugs, are unaware. Third, that it took me 7 phone calls and one hour to schedule a test. Fourth, that hours later, they would cancel my test because of how much it costs, even though I was prepared with a credit card. I cannot believe how difficult it is for those of us who have been impacted by fluoroquinolones to get the care we need.
So here is the scenario. Again, not to scare you. I am just fired up. Let’s say I have an aneurysm and I am unaware. Let’s further say that I have it rupture and I am rushed to the ER. The ER will treat me for a heart attack to no avail, before maybe, perhaps figuring out it could be an aneurysm. By the time they figure it out, it is already too late.
All I want to do is take every precaution and arm myself with knowledge. And my goodness, I am willing to pay for it!
While I have been far removed from the frustrations of dealing with the system regarding this adverse side effect, this brings me right back to it. And it is so very consistent with the stories I hear from clients who have been met with this type of ignorance/lack of education. I suppose I seem like the woman who doesn’t really know what she is talking about….as was evident by one young man I spoke with. He tried to tell me that I would have to put to sleep and a probe would be sent down my esophagus to look at the aorta. I did tell him that sounded like a transesophageal echo, not a transthoracic echo. But he insisted, and the conversation went south from there.
Well, I do know what I am talking about. Unfortunately, I am in still in the same boat as my clients. At the mercy of a system that does not recognize the severity of the symptoms, complications, and long term effects of a very dangerous drug. And sadly, at the end of this day, I am still in the boat of not having the testing scheduled. I will begin at square one again tomorrow….
What does this mean to us? Well we have to keep raising awareness. We have to bring it to the attention of as many people as we can. And somewhere along the road, maybe….just maybe….someone will get it and things will change.
Walk on…..
The above blog post was written in February, 2019.
Update: I was finally able to get screened, through very diligent and creative channels and I do not have an aortic aneurysm.