I’m not entirely sure which is worse:
Having every test comes back normal and
you have no idea why you feel so horrible everyday
-or-
The sudden onset of one abnormal test after another,
slowly taking away any hope of you ever feeling better.
I’ve dreaded writing this post, mainly because I still have so many more questions than I do actual answers at this point, but the final test results should be revealed at my follow-up on Wednesday and I figured that there is no time like the present. Well, there’s that, and also the fact that I want to share these findings in their entirety and explain exactly why I’ve been so quiet lately.
So much to say and not enough time or energy to do it all at once.
So this post will be broken down between a few different parts.
So much has gone on in the last couple months. These days, I don’t know what is connected to what anymore, particularly when it comes to my symptoms. I always knew that my diagnosis wouldn’t be a simple one, but it seems like every week now the doctors add one more new problem to the list. It’s been a lot to take in, especially because life keeps throwing in additional added stress that I honestly could do without currently. I haven’t had much time to think about anything, let alone process what this all means. I honestly haven’t even been able to research these results like I normally would, thus being left with so many unanswered questions. The doctors may lose it when I walk into my follow-up appointments with the two-page list of questions that I’ve already put together without even really trying.
If you remember from my earlier posts “Welcome to the new age” and “Oh doctor, doctor…”, tests had just come back, confirming I had three vascular compression syndromes (Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, and May-Thurner Syndrome) as well as POTS (Orthostatic Tachycardia Syndrome), and I had just started care with a new cardiologist, who just so happened to notice some irregularities in my earlier cardiac tests from back in 2005, and again in February 2014 (but the results were dismissed by two different doctors for being “insignificant”). Anyways, he decided to order some follow-up testing before referring me over to the dysautonomia research clinic at the university’s medical school for treatment, hoping they’d also be able to refer me to one of the very few doctors in the country that treat the vascular compression disorders. I had honestly believed going into this round of medical testing that these tests would be (again) a waste of time, as they have been “insignificant” for 10 years now. I knew, though, that once these tests were finally completed that I’d be able to begin treatment for [at the very least – one part of] my illness. Obviously I obliged. I also had one more test that my GI doctor had also ordered, but figured that the non-stop medically testing was almost truly over. Finally!
But I was wrong… so very wrong.
Initially, the cardiologist ordered two tests:
1. Echocardiogram with contrast.
An echocardiogram is a test that uses sound waves to create pictures of the heart. This test is done to evaluate the valves and chambers of the heart from the outside of your body.
An echocardiogram can help detect:
Abnormal heart valves
Abnormal heart rhythms
Congenital heart disease
Damage to the heart muscle from a heart attack
Heart murmurs
Inflammation (pericarditis) or fluid in the sac around the heart (pericardial effusion)
Infection on or around the heart valves (infectious endocarditis)
Pulmonary hypertension
Ability of the heart to pump (for people with heart failure)
Source of a blood clot after a stroke or TIA
Contrast Used: Agitated Saline Injection
Agitated saline solution administered via intravenous injection provides air microbubble contrast in the right heart. The air microbubbles are short-lived and diffuse into the lungs when traversing the pulmonary circulation. Therefore, the microbubbles enter the left heart only in the presence of a right to left intracardiac or extracardiac (pulmonary arteriovenous) shunt. Saline microbubbles are therefore helpful in examining the right heart and identifying shunts or holes in the heart.
A Holter monitor is a machine that continuously records the heart’s rhythms. The monitor is worn for 24 – 48 hours during normal activity. Electrodes (small conducting patches) are stuck onto your chest. These are attached by wires to a small recording monitor. You carry the Holter monitor in a pocket or pouch worn around your neck or waist. The monitor runs on batteries. While you wear the monitor, it records your heart’s electrical activity.
Holter monitoring is used to determine how the heart responds to normal activity. The monitor may also be used:
After a heart attack
To diagnose heart rhythm problems
When starting a new heart medicine
It may be used to diagnose:
Atrial fibrillation or flutter
Multifocal atrial tachycardia
Palpitations
Paroxysmal supraventricular tachycardia
Reasons for fainting
Slow heart rate (bradycardia)
Ventricular tachycardia
Like I said , I’ve had these tests before and I really wasn’t too worried about them.
Hell, the last time I even had a holter monitor on (back in 2005), I had to wear that baby for an entire month… in the middle of summer… in Florida… and you can’t get it wet… at all… even with sweat… So, 24 hours in Colorado – no problem. I’d say my symptoms were low-average on the day that I had the monitor on. I kept thinking to myself, of course, you’ll have a semi-good day for the first time in a long time BECAUSE you’re being monitored. I did have my usual tachycardia and dizziness, plus one episode of syncope, but nothing I would call spectacular or extraordinary, though. I did, however, have one very loving foster dog concerned about why I had wires and a box attached to me, so he was by my side non-stop throughout the entire day.
Anyways, the next test was the echocardiogram. The saline contrast was definitively the most interesting part of the test- at least from a patient’s perspective. I was disappointed that they had me facing away from the screen when they actually injected it, but you can feel the bubbles as they move through the body and to your heart. Plus the second nurse was fun to watch, as she had no choice but to demonstrate good coordination skills when “swishing” the saline solution back and forth between the syringes, all while holding my IV catheter in at the same time since my veins refused to cooperate that day.
When the tests were done, I was told they’d be back in a few days and that the doctor would give me a call. Although, typically it’s the nurse who calls -not the doctor- but that’s beside the point. I went on my merry way and didn’t think twice about it again.
The next morning, as I’m still asleep from being up late due to sickness the night before, I see a missed call from the hospital and it shows that I have a voicemail. I press play and realize it was the cardiologist HIMSELF calling. Uh, oh… I immediately call back, but have to leave a message as he in currently in with patients. Well, crap!
Still, I didn’t expect the doctor to have found anything of significance anyways, so I let it go out of my mind and got started on the rest of my day. That afternoon, the nurse from the cardiologist’s office calls (I guess the doctor was still busy with patients) and says that the doctor wanted to make sure that someone called me with the echocardiogram results that had come in earlier that morning, although they were still waiting for the holter monitor results. She then tells me that the test showed that I didn’t have a hole in my heart, which is what was originally expected based on the previous cardiac results. Good, I think myself… another normal test.
For once, I don’t want abnormal tests – not when it comes to my heart, anyways.
Even more so because I watched my mother die from a heart attack at age 49.
But the nurse wasn’t done. Oh… She goes on to say that, unfortunately, it looks like there is still some pericardial effusion (which was also seen on the Feb 2014 test). More importantly, though, it looks like your heart is failing… *Excuse me, did you just say thatmy heart is failing?!?!* Well, your ejection fraction is less than 50% on the left side, which means your heart is pushing out less blood than it should be. The doctor wants to order a couple more tests if that’s okay.
*Of course it’s okay…
Am I really going to say no
directly after you just told me that
I’m going into heart failure.*
I’m connected over to the scheduling department at the main hospital to schedule an exercise stress test. They also have already started on the pre-authorization process for an MRI of my heart as well… with contrast. (Sadly, no bubbles this time around, just gadolinium). The hospital tells me that I’ll get a call soon, once my insurance approves the test, but the doctor wants this test done ASAP. I hang up the phone, in shock.
Did she really just say my heart is failing? I heard that correctly, right?
I walk out to the deck and sat down quietly. The first thing I do, of course, is start Googling everything I can: “heart failure”, “low ejection fraction”, “heart failure, left side”, “low ejection left side” “causes of low ejection”…
Just then, my husband walks out. He always has such good timing.
“What did the doctor have to say?“
I pause for a moment, not sure what to tell him
-or-
if I can tell him at all…
Can I even say it out loud? I’m not sure.
“They need to order more tests because my heart isn’t pumping correctly, something about the left side and the ejection fraction.”
I don’t want it to be a big deal, ya know.
At least not yet.
Not until I see the results and it’s all matter-of-fact.
“What did they order?”
“An exercise stress test and an MRI of my heart…”
My husband works in health insurance.
He knows how hard it is to get MRI’s approved because of the expense.
Typically, there has to be history and prior tests.
Unless there’s a legitimate reason the patients needs an MRI,
as opposed to other diagnostic tests.
“So what does this mean?”
“It means that my heart is failing…”
And with that, there’s nothing much more to say.
Of course, now I am worried. And starting to get scared. But what can I do but wait? Besides, maybe it’s not that bad and they are just being cautious. It is the heart, after all. I try not to work myself up over it.
A few friends stop by that night and we act like everything is normal, because -ultimately- it is relatively normal for me. I’ve lived with this condition for years, remember. Tests showed abnormalities 10 years ago.
10 YEARS!
Plus, we’re still waiting for the holter monitor results. There’s no way they’ll come back any worse, especially when I wasn’t even that sick during the recording time.
But I was wrong, so very wrong… again.
Undiagnosed Warrior 
That’s big news to swallow. Hugs…remember to breathe….
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