Medical Testing Update Part 2.5: New Symptoms

Continuation from Medical Testing Updates Part 1 and Part .


The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday  symptoms, the real struggle happens when these symptoms either  intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.

too much

Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule.  Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.

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Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and  I climbed out bed to find  some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.

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I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell  slightly, but they instantly became very  stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.

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At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.

Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.

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Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned.  I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.

Sadly, this is what it has come to these days –

I’ve resorted to praying for illness and pain,

just so I can get some answers.

By the time I finish the MRI, symptoms are gone. Once we got home,  I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.

The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.

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I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body –  just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.

Maybe I didn't roll enough...

Perhaps I didn’t roll long enough. 

And not only is the burning constant and consistent throughout 75% of my body, it  continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.

As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it  is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.

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Oh my god- I’m having a heart attack.

At least that’s what I thought anyway.  In all reality, though, I really wasn’t.  

But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately.  I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
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I pretty much live with these symptoms every day.

How would I ever know if I was truly having a heart attack?

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Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood* 

Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.

new symptom


To be continued…

Medical Testing Update Part 2

Continued from Medical Testing Part 1


“The human heart is such a complex organ,

fragile and sturdy all at once”

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It took a few more days for my holter monitor results to come back, likely because they have to check hours of data and compare it to my symptom diary.

I should have taken a photo of mine, but I forgot. Here's a good example though.

I should have taken a photo of my diary, but I forgot. Here’s a good example of what it looks like.

I tried not to be ridiculous with it, as I am often very symptomatic throughout the day, even on the days I consider “good”. I probably could have recorded every time I stood up, or laid down, or walked to the bathroom, etc. etc. but I chose to limit it to a range of activities, including the ones above. I wanted a decent representation of what goes on throughout the day, without being insane about it either. The hardest part was determining if and when each moment was worth pressing record and logging how I felt.  Like I said in my previous post, it felt like a relatively uneventful day as far as severe or unusual symptoms go and I didn’t expect outstanding results.

I was standing in line at the pharmacy to pick up my monthly medications when the cardiologist himself called (again!). After the last bit of news, my heart immediately felt like it skipped a beat (and in all likelihood, it probably did). As he starts talking, I am rummaging  through my crowded purse for any piece of paper and a pen, which luckily I had (even though it was just an old receipt from the store). He said he reviewed my monitor results himself and that he found a few concerning things on it. Mainly, I had some really high readings, some over 200 beats per minute. However, he was more worried about the abnormal rhythms that showed up. Usually they worry about 3 of these abnormal heart beats in a row. I had 7  abnormal beats consecutively. Not only that, but they are coming from the bottom of my heart, which are considered to be the most dangerous.

Diagnosis: ventricular tachycardia.

VT

VT vt2


The following is from the NIH Website:

Causes

Ventricular tachycardia is a pulse rate of more than 100 beats per minute, with at least three irregular heartbeats in a row.

The condition can develop as an early or late complication of a heart attack. It may also occur in people with:

  • Cardiomyopathy
  • Heart failure
  • Heart surgery
  • Myocarditis
  • Valvular heart disease

Ventricular tachycardia can occur without heart disease.

Scar tissue may form in the muscle of the ventricles days, months, or years after a heart attack. This can lead to ventricular tachycardia.

Ventricular tachycardia can also be caused by:

  • Anti-arrhythmic drugs (used to treat an abnormal heart rhythm)
  • Changes in blood chemistry (such as a low potassium level)
  • Changes in pH (acid-base)
  • Lack of enough oxygen

“Torsade de pointes” is a form of ventricular tachycardia. It is often due to congenital heart disease or the use of certain medicines.

Symptoms

You may have symptoms if the heart rate during a ventricular tachycardia episode is very fast or lasts longer than a few seconds. Symptoms may include:

  • Chest discomfort (angina)
  • Fainting (syncope)
  • Light-headedness or dizziness
  • Sensation of feeling the heart beat (palpitations)
  • Shortness of breath

Symptoms may start and stop suddenly. In some cases, there are no symptoms.

If ventricular tachycardia becomes an emergency situation, it may require:

  • CPR
  • Electrical defibrillation or cardioversion (electric shock)
  • Anti-arrhythmic medications (such as lidocaine, procainamide, sotalol, or amiodarone) given through a vein

Ventricular tachycardia may not cause symptoms in some people. However, it can be deadly. It is a major cause of sudden cardiac death.


The cardiologist goes on to say, given that my “heart squeeze” was much lower than expected, he really wants to rule out a blockage in my arteries (although he thinks it’s unlikely because of my age). Plus the echocardiogram also showed I still had some pericardial effusion that he’d like to investigate further.

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He asks if I have set up the MRI appointment… I sure did. Insurance approved it immediately.

What about the stress test? Yes, sir. Both are scheduled for next week.

“Remind me”, he says, “have you done an exercise stress test before?”

Stress cat

I ask him if the ventricular tachycardia is related to the P.O.T.S. symptoms? Unfortunately, he’s never seen VT and P.O.T.S. co-exist. Typically, any tachycardia with P.O.T.S. is associated to atrial tachycardia (from the top of the heart). Interesting… I want to ask so many more questions, but I’m still in line at the pharmacy and it’s my turn at the counter.

He finished by saying he already called in a prescription for a beta blocker called Metoprolol and I am to start it immediately. Good thing I’m standing at the counter I guess. I pick up my shopping bag of medications, including the new one.

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Of course, as soon as I’m home, the computer comes on and I begin my studies using the University of Google’s medical degree I’ve been working on for the past 5 1/2 years in my search for a diagnosis. Luckily, the medication information says I can take it day or night, as long as it’s around the same time every day. Biggest side effect: lethargy. So nighttime it is then. It says to take with food. Great, this should make for a good time. I eat a few bites of chicken my husband got himself for dinner and down the hatch it went. So far so good… or so I think.

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The food makes me uncomfortable immediately. No surprise there. But 30 minutes later or so, as I’m getting ready for bed, the palpitations start and I’m having horrible chest pain. Wait, isn’t this medication supposed to STOP chest pain and palpitations. I’m so dizzy, I can barely walk up the stairs to get my blood pressure monitor.

First reading – BP: 118/82 HR: 153.  I immediately lay down. Wait five minutes. Second Reading – BP: 138/87 HR: 185. I’m getting worried. I don’t feel well AT ALL. This is definitely NOT a normal reaction. I think I am actually sweating. Am I dying? I can barely sleep that night, my body is running a marathon. I’m petrified. I take readings throughout the night, but only on my heart rate since the oximeter is quieter and won’t wake up my husband, unlike the BP machine. My heart rate never drops below 150, even at resting. At some point in the night, I finally pass out and when I awake the next morning, my vitals are back to normal. I make a note to call the doctor when they open.

Luckily, I didn’t have to wait that long. A nurse from the hospital calls to go over prep for my upcoming cardiac testing. First thing she says, stop the beta blocker until AFTER all cardiac tests are done next week. *Thank God*. I write a note in my “undiagnosed warrior journal” to discuss with doctor at the follow-up appointment or if it happens again when I re-start the medication again.

I just had the weekend before the second round of cardiac testing began once again. This time, I was a little more focused and anxious than the first tests I expected to be “normal as usual”. Luckily, I had a lot of distractions.

The foster dog got really sick so I spent my days cleaning up vomit and diarrhea off my carpet. Our old roommate and one of my husband’s best friends who moved to Florida a few years ago came in for a quick visit and we hadn’t seen him since our wedding last June. Plus, the usual nonstop medical paperwork and records, filing disability papers, emails back and forth to my STD lawyer on my appeal, communications with work about perhaps starting “work from home” (despite still being out on medical leave), and a surprise, short-notice visit from my out-of-state landlord.

Although I did not have a lot of time to worry over the weekend, that quickly changed the following Monday morning, as it was time to head up to the hospital for the MRI of my heart. As if that isn’t nerve-wracking enough, the universe evidently thought it was also the perfect time for the onset of yet another new symptom. A symptom that was not only painful, but frightening all the same….

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To Be Continued….

Medical Testing Update: Part 1

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:

Echo1. 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.

2. Holter Monitor (24hr)

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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.

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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”…

Ejection-Fraction

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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.


To Be Continued…