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Transesophageal echocardiogram

Cleared to Workout Again

“. . .and there was much rejoicing.”

For those of you who haven’t been following the drama related to my heart, I started having chest pain after long runs in November. After seeing to cardiologist’s and having two ultrasound, a stress test, wearing a heart monitor for 24 hours, and getting a transesophageal echocardiogram (TEE), they diagnosed me as having a congenital heart defect called patent foramen ovale (PFO). However, my heart defect apparently is not the cause of my pain or the dizziness, fatigue, or night sweats I’ve been having.

My doctors aren’t sure what’s causing my symptoms but they’re pretty sure it’s not a cardiovascular problem so my first cardiologist said I was allowed to work out again and took me off the beta blockers. (Did you know that beta blockers are the only banned substance in archery?) I made an appointment to see my primary care doctor to run blood work to see what else is going on in my body. In the meantime, I’m working out!

Still Smiling after Running 3 Miles - Feb. 14, 2015

Still Smiling after Running 3 Miles – Feb. 14, 2015

And it feels so good to exercise again!

On Saturday morning, I took myself for a 3-mile run, probably at a 10-minute/mile pace. My body could definitely tell that it hadn’t worked out in a while. My chest hurt for most of it but not enough to get me to stop. My legs held up great. (I would be surprised if it turns out I have a bad case of costochondritis – which I’ve had off and on since I was 11 – plus another medical condition that’s causing the other symptoms. Costochondritis is an inflammation of the chest wall that hurts like a bitch that there’s not much they can do about it.)

I took myself for a bike ride on Sunday. I meant to do 10 or 12 miles but I ended up doing 14.5. My quads and butt muscles got a work out. I didn’t realize how steep Galvin Parkway is through Papago Park – thankfully I rode up the hill at the beginning of my ride so I can coast down it on the way home.

One of the best parts of working out again is it giving up my mind a chance to rest and let ideas flow through it. There is no way I can act on an idea while I’m running or riding – not even a chance to send myself an email – so my thoughts have an opportunity to tumble around in my brain and develop in a non-directed organic way. It’s the closest thing I have to being creative. It was very nice to have that mental respite again.

My return to running couldn’t have come at a better time. I’m going to the Dad 2.0 Summit this weekend in San Francisco (blogging conference for dads). I’ll be speaking with them about the legal dos and don’ts of having a blog. It looks like there’s going to be a group of us going for a run together one of the mornings. I hope our route includes at least one hill.

I Still have a Defective Heart – But That’s Not the Problem

So here is the update about my heart.

My doctor called me late on Tuesday afternoon to let me know that the transesophageal echocardiogram (TEE) showed that I have a hole in my heart (PFO) but there is no blood flowing where it shouldn’t be. My doctor said unless I have a stroke, I don’t need to have the hole patched. I seem to be one of those people who have a heart defect, but it is not problematic.

GRRR by Meghan Dougherty from Flickr (Creative Common License)

GRRR by Meghan Dougherty from Flickr (Creative Common License)

The good news is my fatigue, dizziness, chest pain, and night sweats do not appear to be caused by a cardiovascular problem. The bad news is I’m still having the symptoms and we don’t know why.

So it’s back to the drawing board. I made an appointment with my primary care doctor and we can attack this problem from a new angle. I suspect he’ll order blood work to see if my numbers have changed from my last full physical. I may ask him to throw in a hormone test to see if it might be early menopause. I called my other cardiologist to ask if I needed to keep taking the beta blocker. (Remember: I’ve never had high blood pressure.) His office called me to say that he wants to see me for a follow-up. Perhaps he’ll have some suggestions about what else could be causing the problem.

Since my heart defect isn’t causing my symptoms and my symptoms didn’t show up until I was running 15 miles at a time or more, I hope I can start working out again soon. Before I started training for the marathon, I was running 22 miles and biking 19 miles a week. I was doing two 4-mile runs and two 6.5-mile runs each week. I’d like to get back to that.

It’s frustrating to feel like part of my life is on hold. Part of me wants to say “fuck it” and do whatever I want whether that’s running the hills when I’m in San Francisco for the Dad 2.0 Summit, taking a high intensity step aerobics class, or treating myself to a few hours of trampoline tumbling. I don’t like being told that there’s something I can’t do. I definitely plan to have a candid conversation with my doctors about being more active while we figure out what’s wrong with me.

In case you are wondering, no, I haven’t become completely reckless. And yes, I make sure I’m wearing my Road ID before I leave the house, just in case.

I’m an Impatient Patient

I will be the first to admit that I can be pretty impatient, especially in situations where somebody has committed to having something done or the being somewhere at a specific time. In my defense, I’m also one of the most understanding people if you come to me with a valid excuse why you’re late or why you couldn’t deliver on your promise. Life happens and sometimes there are things that are outside of our control that we have to deal with. I get that.

Domo Attacks Florida by Richard Elzey from Flickr (Creative Commons License)

Domo Attacks Florida by Richard Elzey from Flickr (Creative Commons License)

Having said that, I’m freakishly annoyed with my cardiologist. I had a transesophageal echocardiogram (TEE) on Thursday, January 29th. I called my doctor’s office the following Monday to get my results and find out what the next plan of action is. My doctor’s assistant reminded me that he’s not in the office on Mondays and that he would call me on Tuesday with my results. Tuesday came and went without a phone call from my doctor. On Wednesday morning, I called my cardiologist’s office again to explain that I hadn’t gotten a call to make sure that following up with me was on my doctor’s to-do list for the day. I didn’t get a call that day either.

I know my cardiologist isn’t in the office on Thursday – he’s usually at the hospital doing procedures – but I called any way. My doctor’s assistant said I was on his list of patients to call the previous day. The office staff was understanding of my frustration and anxiety. I was elated when my phone rang from my doctor’s office that afternoon, until my doctor’s assistant explained that the earliest my cardiologist would call me is Tuesday of next week.

What the fuck?! I understand I’m not his only patient, and probably not his most critical patient by far, but he’s making me wait an extra week to get my test results? That also means if he is recommending any type of procedure related to my heart (like sealing the hole) he is delaying my treatment. It’s annoying to live with intermittent chest pain, fatigue, dizziness, and daily night sweats. I just want this fixed.

I have amazing loving friends who reminded me that if there was anything severely wrong, my doctor would have called me immediately. So no news is probably relatively good news in this situation. They validate my frustration and remind me to stay calm because getting anxious isn’t going to help anything. There is nothing I can do at this point in regards to my doctor except wait ‘til Tuesday.

So what did I do to deal with my frustration? I called the hospital and requested a copy of my medical record from my TEE. I may have to wait to get my doctor’s interpretation of the results but he can’t stop me from getting my hands on the raw data itself.

I told you I was impatient.

Heart Defect Update – Transesophageal Echo

Disclaimer: This post includes an account of events that I experienced while medically stoned, so take it with a grain of salt.

Transesophageal Echocardiogram from Wikipedia (Creative Commons License)

Transesophageal Echocardiogram from Wikipedia (Creative Commons License)

In my last update about my heart defect, I shared that my new cardiologist confirmed that I have at least one hole in my heart but he wasn’t sure if I have an atrial septal defect (ASD) or a patent foramen ovale (PFO). So he ordered a transesophageal echocardiogram (TEE) to get a closer look which would get help determine my diagnosis and a plan of action.

A few days ago I went to the Scottsdale Healthcare Shea Medical Center for my procedure. The staff at this hospital is outstanding. A kind volunteer walked me from the information desk to the admitting area, and another volunteer escorted me from admitting to the department where I would actually have the procedure done. My nurse, Alison, was awesome. I traded my T-shirt for a gown and she covered me with a warm blanket that felt like it was fresh from the dryer, put the IV in my arm, and stuck 4 very sticky electrodes to my chest. We think we know each other from somewhere but we couldn’t figure it out.

They told me to be at the hospital by 1pm even though my procedure wasn’t scheduled until 3pm. Alison texted my doctor, ordered the machine to be brought in, and moved things along. When the Tech brought the machine in, I saw the scope they would be using – holy crap that thing is long! I knew they only had to slide it down my throat until it was parallel with my heart but geeze! I didn’t need to see that.

My doctor who did the procedure – Dr. Robert Burke – was awesome. He was very reassuring and put me at ease from the start. He made sure I understood the procedure before shifting me onto my side and he asked Alison, whom he referred to as “my bartender” to inject my IV with versed and fentanyl. I was a little nervous as I waited for the drugs to take effect but I was unconscious in less than a minute.

During the procedure they injected my IV with saline and watch to travel through my heart. All saline has bubbles in it, so they could watch to see how many bubbles went through the defect. According to Alison, when Dr. Burke first tried to slide the scope down my throat, I started hitting my thigh with my hand. (I have no memory of this.) He ordered a dose of propofol to further put me out.

I regained consciousness about 2 hours later. My aunt was there to pick me up and she said I looked very peaceful while I slept. By then, the IV was out of my arm and Alison came into remove the electrodes from my chest. Those things were super sticky. I feel sorry for anybody with a hairy chest who gets those.

I was very medically stoned. If memory serves, Alison said the doctor saw a PFO and that bubbles were going across the defect during the test. She offered me a wheelchair but I opted to walk – though I definitely couldn’t walk in a straight line, which I found pretty amusing. I slept very soundly that night.

So that’s what I know for now. I need to follow up with my other cardiologist who specializes in repairing heart defects to determine what the next step will be, but I suspect he will recommend sealing the hole.

Typical Night with Night Sweats

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

This is my night shirt after a night of night sweats. I took this photo 6 hours after I took this shirt off and it was still drenched!

Unless you’ve experienced it yourself, you can’t understand what it’s like to have night sweats. I’ve had them almost every night at least since early December. We don’t know what’s causing them or how to stop them. I started seeing another cardiologist last week; I hope he’ll know what to do.

Here’s what a typical night is like for me:

Getting ready for bed: Put on t-shirt and shorts. Lay out two more t-shirts at the foot of my bed along with my sleep sack for the morning.

Sometime between 11:30pm and 1:30am: Wake up cold, clammy, and drenched in sweat – I mean drenched: my shirt, shorts, skin, sheets, and pillow. Take off shirt #1. Put on shirt #2. Flip over pillow. Go back to sleep.

Alarm goes off at 5:15am: Wake up cold and wet again. Turn off alarm. Exchange shirt #2 for shirt #3. Pull on sleep sack and step into slippers. Pad to kitchen to make coffee. (By the way – shirt #1 is still drenched despite air drying for the last four hours.)

And that’s just about what happens every night for me. It’s so gross to have my skin and sheets covered in human salt. I don’t know how people who have medical conditions that cause this every night deal with it. I’m pretty sure there isn’t a way to sweat through the night gracefully.

I saw my new cardiologist last week who did a second ultrasound. He’s not convinced that I has atrial septal defect (ASD). He said it might be a patent foramen ovale (PFO). Either way, I have at least one hole in my heart that I’ve had since birth.

This week we’re going to do a transesophageal echocardiogram to get a clearer picture of what’s going on and then we’ll formulate an action plan from there. The heart is right next to the esophagus so they’re going to knock me out and slide a camera down my throat and look at my heart. They’ll have a lot less to go through compared to an ultrasound that has to decipher what’s going on through muscles, bones, and my lungs. Hopefully this means I’ll have answers soon.

Of course, being a recovering addict, the first thing I asked when my doctor said I needed this procedure was, “Do I get propofol with that?”