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atrial septal defect

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?”

Rock ‘n’ Roll Arizona Marathon 2015 – DNF

I did the Rock ‘n’ Roll Arizona Marathon yesterday . . . well, more accurately speaking, I started the race. Unfortunately, I was unable to finish it. As many of my friends suggested, this was not my race.

AJ & Ruth at the Starting Line for the Rock 'n' Roll Arizona Marathon 2015 (Photo by AJ Grucky, used with permission)

AJ & Ruth at the Starting Line for the Rock ‘n’ Roll Arizona Marathon 2015 – Probably my Happiest Moment of the Day (Photo by AJ Grucky, used with permission)

I needed to have an awesome day on race day to complete 26.2 miles. That’s what I had a few weeks ago when I ran 20 miles and I felt like I could easily run 5 more. Yesterday was a good day, not a great day. I didn’t feel particularly bad when I started the day just after 4am. I got up, made coffee, got dressed for the race, walked the dog, had a banana and a bagel with peanut butter, packed my gear bag, and walked a mile to the light rail station. I had an enjoyable chat with a guy from Minnesota on the rail who was the 3:40 pacer for the race on the ride across town. He said he was going to run the race with a GoPro camera strapped to his chest.

The starting line is pretty uneventful. I met up with my cousin AJ and we lined up in our corral. Just before the race started, I had my usual pre-race 5 Hour Energy and 2 ibuprofens. As our group started the race I tried to be mindful of the advice I heard from so many people – Don’t start out too fast. I tried to tell myself, “We’re just going for a jog.”

I never felt like I found a groove in this race. My music kept me going and I occasionally found someone to pace with. My hands started tingling around Mile 2, and I knew that couldn’t be good, but thankfully a cleared up after a few more miles. My right arch hurt starting pretty early on in the race and I had intermittent hip pain on both sides, but I pushed on. By Mile 9, I was pretty certain I would be losing some toenails after the race.

In terms of time, I had a great first half of the race. My half marathon time was 1:58 (9:07/mile pace). Around Mile 12, I started questioning if I really wanted to finish the race. At Mile 14, I really started to hurt and started slowing down. The 4-hour pacers easily passed me. After the turnaround in Old Town Scottsdale, my chest and my liver hurt so I decided to walk. I was surprised by how much my whole body hurt once I stopped running and how slowly I was walking, even compared to how slowly I had been running. I was done.

Both of my Feet are Sore but this is the Worst of my Toes

Both of my Feet are Sore but this is the Worst of my Toes

I promised myself I could stop at the next medical tent, which turned out to be at Mile 19. A friendly nurse gave me a chair, verified my identity, and asked what was wrong. When she discerned that I wasn’t in imminent danger or in need of significant medical attention, she gave me a bottle of Gatorade and called for the shuttle. Another nurse put a towel that had been soaking in ice around my shoulders. I felt like crap.

Gene, my kind shuttle driver, zipped me to the finish line where I pick that my bag from gear check and met up with my family. I sent out a handful of text messages to the people who I suspected were tracking me via my RFID chip who might be wondering what had happened to me. I was bummed I couldn’t finish the race but it was the right decision. I felt so weak, so lightheaded, and my stomach hurt like a bitch that my aunt took me home instead of going out with everybody else. After a few hours of rest, I started to feel human again.

Thank you to everyone who supported me along this journey to do this race and a special thank you to the crew and volunteers who work the Rock ‘n’ Roll Arizona Marathon and my friends Karen, La Dessa, Valerie, Dannie, and Bill who cheered me on from the sidelines. You guys made my race a lot less painful.

Will I try another marathon? I’m not sure. The next thing on my to-do list is seeing my new cardiologist and getting my heart fixed. My new guy specializes in my type of heart defect so hopefully he can determine what’s causing my symptoms and how to fix it.

Marathon Training Week 16 Recap: Running Scared

16 by  Karen_O'D from Flickr (Creative Commons License)

16 by Karen_O’D from Flickr (Creative Commons License)

If you’ve been following my journey towards running my first marathon, you know that a few weeks ago my cardiologist diagnosed me as having 2 holes in my heart. He said I can keep training and do the race as long as I can manage the symptoms and I don’t have a stroke.

Knowing that I have a potentially serious cardiac condition makes me nervous about running, but not enough to make me stop. I am much more mindful about where I run because I don’t want to find myself getting into trouble and being more than a few miles from home or my car. I’m more likely to choose a route that involves running loops close to home or running on the treadmill or elliptical. I definitely never leave the house without my Road ID on my wrist.

My Medications - Dizziness WarningsOne of the challenges of having this condition and being on my medication is I never know how I’m going to feel day-to-day. Last week I ran over 20 miles, and I felt like I could have run another 5 miles if I needed to. A few days ago, I had to stop running after 1.5 miles on the treadmill and finish my workout on the stationary bike because I was too weak to run anymore. Some days I feel great and other days I’m weak and prone to dizzy spells. (I recently noticed that all 3 of my medications have dizziness as a side effect.) I really hope I don’t have a bad day on race day, because there’s a good chance I’ll be riding the golf cart to the finish line.

Every time I suit up to workout, part of me is afraid of getting to weak or tired to finish my run or worse. I prefer not to collapse or have a stroke. I don’t need road rash or a treadmill burn on my face and I’m clumsy enough without adding in a semi-permanent weakness in half my body. I wonder how being on a beta blocker impacts my workouts, since I think it’s keeping my heart rate from rising like it would in a non-medicated person. My teammates warn me to “Listen to your body,” but they know I’m stubborn and it’s hard not to push through when I can. But I know the big goal is to run the Rock ‘n’ Roll Marathon, and that might mean I have to take it easy a bit in my training to make sure I make it to race day.

2013 Post RaceThis week I opted to ride the stationary bike at the gym for an hour while reading my book and checking social media for cross training. It was pretty boring but I cranked out 15 miles. (I can’t wait ‘til it’s warm enough to ride outside again.) It made me miss the aerobics classes I used to take when I belonged to a gym. I’d buy a day pass for an intense step class. (I’m sure my cardiologist wouldn’t support the idea of me taking an intense step class, but it’s fun.)

I have good news in regards to race prep – I ordered my base shirt so I can have Brand X make me another custom running shirt for the race. They did a great job with my Masochist/Run Bitch shirt the last time I ran a half marathon.

Weekly Totals:
Running:  5 miles
Elliptical:  20 miles
Biking:  22.5 miles

Marathon Training Week 14 Recap: Getting Back in the Saddle

14 by Steve Bowbrick from Flickr (Creative Commons License)

14 by Steve Bowbrick from Flickr (Creative Commons License)

For those of you who have been following along, my marathon training program for Rock ‘n’ Roll Arizona 2015 has not been going to plan. So far there has been chest pain and night sweats, medical testing, finding out I have 2 holes in my heart, 2 new medications, and walking my mile for the last 3 weeks. Many of my teammates have suggested that Rock ‘n’ Roll Arizona 2015 isn’t my race, but it looks like my race might be salvageable.

Last week had a disappointing start. I tried to walk 5 miles on Tuesday but I was so tired and weak that I could only manage 3. I didn’t even bother trying to walk the 9 miles on my marathon training program on Wednesday.

Thursday morning had me back in my cardiologist’s office for my test results. That’s when I found out that I have 2 holes between my atriums and he put me on a low-dose beta blocker and referred me to another cardiac specialist to determine if having atrial septal defect is causing my problems. He also said I could run again. I managed to run/walk 5 miles on the treadmill that evening in just under an hour.

I was scheduled to run 14 miles on Saturday and my plan was to run on the treadmill at my complex again so I wouldn’t be far from home if it got too hard to I started having chest pain. To my dismay, both treadmills were not working. (What are my HOA fees paying for again?) I opted to do my miles on the elliptical in 2 sets of 7 miles. My toes were numb and my legs were a little wobbly by the end but otherwise it was fine. I finished in just under 2 hours. My pulse never felt like it was getting excessively high.

I’ve become such a wimp about the cold. Earlier in my training I was off cross training on my bike at sunrise, but now it’s chilly in the morning. It was sunny and warm by the afternoon but unfortunately I had other obligations then. (I should probably adjust my schedule when I can if I want to work out outside.) Instead I hit the gym at my condo again and did 7 miles on the elliptical.

Next week, I’m scheduled to do 2 5-mile runs, a 10-mile run, and a 20-mile run. My plan is to run/walk all of them in the real world, but I’m considering finding some type of loop for the 20-mile run so I won’t risk getting into trouble and being 10 miles from home.

Totals for the week:
Running/Walking/Elliptical: 29 miles
Biking: 2 miles

I Still Have a Defective Heart

Atrial Septal Defect - Image from Wikipedia (Creative Commons Image)

Atrial Septal Defect – Image from Wikipedia (Creative Commons Image)

Let me start this post with a correction: I misheard my cardiologist last week. I thought he said I have a ventricular septal defect. He actually said I have an atrial septal defect. Today when we went over the results of my tests, he told me I have, not 1, but 2 holes between my atriums.

The human heart isn’t that big. How is it possible that I have 2 holes in one little area?

The rest of my tests were unremarkable. Nothing unusual showed up when I wore a heart monitor for 24 hours and my stress test looked good. Overall, my doctor is unsure what’s causing my symptoms – the chest pain, the fatigue, and the night sweats. He prescribed me a low-dose beta-blocker and said I can go back on ibuprofen for pain. (Yay!) My beta blocker dose is so low my pharmacy had to special order it. Since I’m so small, my doctor’s having me only take half a pill every other day for the first five days to see how I adjust to it. (He said it could make me tired.)

My cardiologist also referred me to another heart specialist to evaluate whether my heart defect is causing my problems and whether they should be surgically sealed. Apparently this guy specializes in these types of defects. I hope it doesn’t take weeks to get an appointment. If my defect should be patched, they go in through the groin, not open heart surgery. That was good to hear.

My doctor said I’m allowed to try running again. I was pretty nervous to see how my stamina is after not running for nearly 3 weeks. I was slated to do 5 miles today and I opted to do it on the treadmill where I could control my speed. I ended up doing a run/walk combo and finished in 53:58. I think that’s a good start. My chest hurt a little bit at first but settled down by mile 3.

I’m scheduled to do 14 miles on Saturday and I think I’ll do it on the treadmill again where it will be easier to manage speed, take breaks, and have snacks. For now, my plan is to keep following my marathon training program, but modify it by walking and running my miles as needed.