bjc healthcare

Cardiology Update!!!!

/ Cassidy S. Cooley / Leave a comment

So, for any of y’all that don’t know, back in 2006, I delivered my daughter Hannah via emergency C-section due to severe preeclampsia.

Long story short, my physician was a third-generation OB/GYN who had basically written off my complaints of being short of breath during my second and third trimester. My daughter was delivered at 34 weeks, and the preeclampsia was “supposed” to resolve…except it got worse. I wound up in full congestive heart failure due to peripartum cardiomyopathy and pulmonary hypertension. My left ventricle blew up like a balloon–it was 3x the size of the rest of my heart, and my lungs were full of fluid. In the first night after my diagnosis, if I remember correctly, they removed 30 pounds of fluid from my body that I had retained. Dealing with that, post C-section? Not cool.

As most of you know, my daughter passed away at 29 days of age, due to Late-Onset Group B Strep and bacterial meningitis. Her cause of death was not due to my heart failure-it was a completely unrelated issue. We were told for years that due to the extent of the damage my heart had gone through, that we should never have another child….but we did not believe them. Cardiologist after cardiologist refused to see me as a patient, until Dr. Michael Paul, perinatologist at Mo-Bap, referred me to Dr. Robert Kopitsky, who did the right tests and discovered that miraculously, my heart had recovered to running at 50-55%, which was completely normal! I had no scarring, no permanent damage, and I was cleared to get pregnant with my son. It was the best news I’d ever heard!

Through my pregnancy with Jericho, my heart was closely monitored, and I was admitted to Mo-Bap at 32 weeks along. At that point, my cardiac function was already less than 30%. It continued to decline, and the decision was made to deliver early once again. I had excellent care, and my miracle baby was born! My heart was still an issue, and remained closely monitored & medicated for the next few years.

In 2016, I had an echocardiogram performed, and my cardiologist (I’d had to find a new doctor due to insurance changes) put my estimated cardiac function at 40-45%. That’s not bad, but it’s not normal; however, my cardiologist said it was acceptable and to be happy with it, “because you’re stuck there. I don’t think you’ll see those numbers improve.'”

And you know what? I was happy with that. I mean, c’mon, I almost died–twice! I’m happy with what I can get!!!! I took my regular meds and considered myself blessed!

Last month, my new PCP said it was time to check on my heart again. I’ve had some issues with stress, headaches, and back pain, so she wanted to rule anything out. My cardiologist agreed, so last week, I went in for a new echo. I got the phone call from his nurse today, as I was getting ready to leave my office.

MY HEART FUNCTION IS AT 60%!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m completely floored–the nurse said, “We just don’t see that. We don’t see those numbers with people with your history. Someone is looking out for you, for sure.” HA!!!!! Ya’ THINK?!?!?!?

My mind is blown. Like, I wasn’t even praying about it–I just accepted 40-45% and went on my way. Subconsciously, I think I was writing off even trying to exercise or anything, because why bother if I’m “stuck?” I come from a long family history of crappy hearts, so I just took it for granted that this is my life.

BUT IT’S NOT.

God takes over and answers prayers when we don’t even ask. He works miracles that we don’t expect or anticipate. David & I are in this season of struggle, where things have been extremely stressful. Yet in this, over and over again, I keep seeing little things, and big things, and random things, that remind me that God is watching. He is PRESENT. He meets needs we didn’t even know that we had. He loves us, He works in our lives unexpectedly, AND HE STILL WORKS MIRACLES!!!

Spiritually, mentally, and now physically (multiple times!), my heart has been broken and repaired in miraculous ways. I know it may sound dramatic to say, but I will shout this testimony from the ROOFTOPS, y’all, because I know my God is in the business of healing hearts.

“My heart overflows with a good theme; I address my verses to the King! My tongue is the pen of a ready writer. You are fairer than the sons of men; Grace is poured upon Your lips; Therefore, God has blessed You forever.”–Ps. 45:1-2, NASB

The Inconvenience of Healthcare AKA, Making a Big Deal out of Nothing At All

/ Cassidy S. Cooley / Leave a comment
*Never doubt my love of Air Supply.
**Back Story: If you’re new to the blog, I was diagnosed with metastatic thyroid cancer in 2015. I had a tumor that wrapped around my throat and went into my mediastinum; the cancer broke through the capsule of the tumor and went into my lymph nodes. I had a total thyroidectomy (TT) in 2015, and have been on thyroid replacement hormones (TRH) since then (Armour Thyroid). After firing my first set of doctors (oncology, ENT, and endocrinologist–the oncologist didn’t want to see me back for any follow-up care for a year, which my PCP didn’t appreciate; the surgeon became out of my insurance network; the endocrinologist miscommunicated a medication dosage to her staff, and almost killed me), I wound up switching all of my cancer-related care to Barnes Jewish Hospital’s Siteman Cancer Center, where I’ve remained since 2016.
Surgeon: “You need to visit the oncologist for updated testing; it’s been 2 years, so you’re due.”
Oncology Nurse: “Please come in for a consultation!”
Me: Has a day off, arranges schedule accordingly (I work 40 hours a week, and have a 45-minute commute each way. I stay busy. For this appointment, I was going to have my son with me, but whatever–we’d make it work).
Oncology Nurse (2 days before the scheduled consultation): “Oh, no, we don’t want to see you for a consultation until you get all of these tests, which will take an entire week to accomplish. Let’s get this scheduled.” This testing involves 2 days of injections, plus one day of radiation (tracer dose), plus 1 day off (because I can’t be around pregnant people), and then a day of labs and a full-body scan….which didn’t work on me, the last time I did it, and I wound up having to have a very expensive PET scan….so I was trepidatious, to say the least.
Me: Arranges appropriate time off of work; arranges childcare. Gets everything scheduled and gets everything approved through office (which couldn’t come at a worse time, given my current workload). Gets emotionally prepared to be a pincushion for a week. Informs family of process to come, and struggles with ensuing anxiety.
Oncology Nurse: “Oh, no, wait, we don’t want to do any of this testing until we have a consultation scheduled.”
Me: “ARE YOU KIDDING ME?!?!?!?!?!?!?” LOSES MY TEMPER on highly-degreed individuals who have obviously forgotten that I AM A HUMAN, and I am more than the stupid disease that has been hanging over my head for 3 years!!!!! “Could you NOT have decided to do the consultation first, like we ORIGINALLY SCHEDULED, before putting me through all of the hassle to put a very busy life on hold for a week? Could you maybe have REVIEWED A CHART and a medical history, and REMEMBERED a few key details?!?!?! Who decided this?!?  Who decided to do one thing, then another, and then the first thing, after I already rearranged my life?!?!?! The Nurse Practitioner? Can I speak to her?!?!?!” She takes a message, and says the NP will call me back.
Me (super-mad): Calls surgeon who sent me back to oncology in the first place; gets favorite nurse on the phone. “Lisa? Can you help me? Can you talk to them and figure out the why in what the heck they’re doing, since your MD sent me back to that office in the first place?!?!?” She agrees to call them; she was out of the office when I was told to make the oncology appointment, and she’s aggravated that the MD forgot to explain everything to her. She’s been amazing. She can’t help what happens next.
Oncology Nurse Practitioner (now I’ve moved up the chain of command; my phone was IN MY HAND and went to voicemail, and this is what I got): “Mrs. Cooley, the insurance company won’t cover any of the testing until you’ve had a consultation.”
THEN WHY DID THEY CANCEL THE ONE I HAD SCHEDULED IN THE FIRST PLACE!!!!!!!!!!!
I am so sick and tired of the medical BS that doctors put people through, because somehow, in all of this, they forget that we are individuals who put our actual lives on hold to deal with these things that come from out of nowhere to sideline us and our families!!!!! It’s been 12 hours since my conversation with oncology, and I’m STILL mad. It’s an endless cycle of bad communication, and it’s a small wonder that insurance companies are now basically practicing medicine without licenses in order to dictate the course of care/medical authorizations. IF THE DOCTORS THAT ARE RESPONSIBLE FOR THE CARE THAT AFFECTS THE QUALITY OF OUR LIFE CANNOT EFFECTIVELY COMMUNICATE WITH EITHER THEMSELVES OR WITH THEIR PATIENTS, what hope do we have for our medical well-being?!?!
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I don’t think it’s too much to ask, for a doctor to review at the very least, a list of the patient’s diagnoses before they walk into a room for a consultation or order a test…but guess what? They’re so over-scheduled that they don’t have time. BUT, they’re so over-scheduled, because the insurance contracts reduce their allowed amounts to the point that in spite of popular opinion, doctors and hospitals generally make just enough money to make a profit, or even to barely meet costs. My orthopedic surgeon–you know, the woman who was responsible for cutting my feet open and rearranging the tendons so that I could relearn how to walk properly–was allowed maybe 10 minutes for each visit (actually, I think it was 4 minutes) by her overseeing medical group. 4-10 minutes, to make sure that surgery is necessary, that 4″ of incisions are healing properly (mine didn’t), to decide what steps need to be taken–she has 4-10 minutes to make decisions that will affect me for the rest of my life. Me, and the 50-90 other patients that she’ll see in a day.  Fortunately for me, my ortho was AMAZING, and her staff was phenomenal….not every MD is as dedicated, and not every MD can handle the workload they’re assigned (patients, documentation, insurance reviews–it’s more than the average patient understands).
ARE THEY KIDDING US?!?!?!? Are they kidding the doctors? They didn’t sign up for this; they signed up to help people, not to treat them like a cattle call.
But there they are, making decisions, saving lives, and leaving a trail of confusion and frustration in their wake…
At this point, I’m not sure what’s more frustrating—the doctors, the insurance companies, or the diseases that exist in the first place.
I was whining on the phone to my mother last night (God love her, for listening to me), and she pointed out (very gently) that since my thyroid was ripped out, my ability to process my emotions has been greatly affected. I detest admitting that she is correct, but it’s true. I struggle with being angrier when I’m mad, with being deeply depressed when I’m sad. There’s no happy medium with my emotions, and it makes things much more difficult. There are times when I’ve wondered if I’m straight-up bipolar, or on the spectrum, or if I’m just permanently screwed up from all of this. Maybe it’s PTSD on steroids, or maybe I’m just a terrible person. I don’t think it’s normal for people to stew on things like I do, or to have the internal (and sometimes external) monologues that I have to sort things out. I don’t want to admit that I’ve changed, but it’s true: I’m different.
I don’t know if I’m more honest, or if I’m just, frankly, more of a bitch. I don’t know if I’m more unfiltered (because I don’t have the patience to wrap things in snowflakes for the general public), or if the more choleric side to my personality has somehow mutated, but what I do know is that I am sick and tired of the hamster-wheel that a chronic illness put me on.
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I like people less. I have less patience for people. I like the fact that I sit in an office by myself, because I don’t think I can deal with the anxiety and stress that dealing with the public puts me through. I don’t like getting out of my familiar, and I don’t want to do it. When doctors lay out a course of treatment or protocol, I will latch onto that, and Type-A get it scheduled, and God-help-you if you get in the way of MY PLAN.
On the plus side, since my whole cancer debacle, at least you know when you ask me a question, you will get the whole truth, and nothing but the truth, once I’ve warmed up to you and feel like I can trust you with the unfiltered version of me. That takes a while–I’m not as easy of a person to get to know as one would think at first.
I think the thing I’m the angriest about is that I have an incredible amount of anxiety any time I have to deal with the oncology department. I can’t explain it or make it go away; just knowing I have to go back there seems to undo me, and I had just gotten it into my brain that this was actually happening again. Surely I am not the only person in the world who deals with this?!?!?  I had just made peace with it all, and had made my plans accordingly; as aforementioned, I do NOT like it when my PLAN gets messed up or taken out of order, LOL. That’s not doing me any favors in motherhood, let me tell ya’. Am I crazy for being this aggravated about this one instance of medical miscommunication?!? Or should we all get this mad, and maybe make something happen from it?
I know the “right” things to say, here: “God has a plan.” “This will all get worked out.” “Trust Him with your anger.” “Be angry, but don’t sin (stop swearing!).” “Stop ranting (that’s part of my monologue-ing)”. “It’s still the good kind of cancer, right? Be grateful!” Blahbaty-blah-blah. And yes, I’m praying about it..sort of. It’s one of those throw-up-your-hands-and-yell/pray kind of prayers. 🙂 I do that a lot lately.
Healthcare in this country has got to get figured out. I consider myself to be a pretty informed patient after almost 20 years of working in this industry, and if this kind of confusion in healthcare is “normal,” WHAT IN THE WORLD is going on? What have we come to?!? And what are we paying for?!?!?!?!?