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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.

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.

Marathon Training Week 13 Recap: Walking Sucks

This was a challenging week of training. I saw my cardiologist on Monday and he said I could only walk, not run until we got the results of the tests he ordered (ultrasound, stress test, and heart monitor). There are two main challenges with walking: (1) it takes a lot longer than running and (2) it’s boring!

Walking with Heather

Walking with Heather

I’m still sticking to Hal Higdon’s marathon training program for novices, but walking my miles. I hope I can still do Rock ‘n’ Roll Arizona in January.

Monday: Rest Day.

Tuesday: I had work commitments early in the morning so I opted to do my 4 miles in evening – on the treadmill. That thing still feels like a human hamster wheel. Maintaining a 4 mph pace was pretty challenging.

Wednesday: I walked 9 miles today. It took 2.5 hours. It’s so frustrating that I can’t run. I think it’s starting to make me batty.

Walking with Lawton & Oscar

Walking with Lawton & Oscar

Thursday: I was scheduled to walk 5 miles today but I ended up walking 5.4. I did it first thing in the morning which made it less painful. I also had my stress test that morning, so I had to be caffeine-free for 24 hours and not eat for 4 hours before the test, so taking a walk kept me occupied.

Friday:  Rest Day.

Counting Loops

Counting Loops

Saturday:  I walked 19 miles today, and it took over 5.5 hours to finish it. I walked from my place to ASU Tempe campus, walked 4 loops around campus, and then home again. My friends Heather and Lawton (with her adorable dog Oscar) joined me for part of the walk which made it much more bearable – Thanks so much! Every time I finished a looped, I marked it on my wrist with a Sharpie pen so I wouldn’t lose track of myself. I kept myself energized with water, GU Chomps, and an energy bar.

Here’s another reason why walking sucks – when you’re walking long distance, you feel the pain of your first miles before you’re done with your last mile. When I run, I’m done after a few hours and I’m home before the pain sets in. My hamstrings were killing me by the time I got home.

Sunday:  Yesterday’s walk gave me heat rash on both my feet and ankles – sexy I know. The last thing I want to do is put on socks or shoes. I’m technically supposed to do cross training on Sundays, but I walked 19 miles yesterday. I’m not doing anything today. (I think the heat rash is nature’s way to saying I’m not meant to be a long distance walker.)

I’ll see my cardiologist this Thursday. So far he’s said I have a hole in my heart and that my heart skips beats. I hope he’ll know what’s wrong with me and that he says I can run short distances so I can alternate running and walking for the rest of my training and through the race.

Weekly Totals:
Running:  0 miles
Walking:  37.4 miles
Push-ups:  0 push-ups

I Have a Defective Heart

Who has two thumbs and a heart defect?
This guy!

Ventricular Septal Defect (VSD) - Creative Commons Image from Wikipedia

Ventricular Septal Defect (VSD) – Creative Commons Image from Wikipedia

I feel like I’ve been living at my cardiologist’s office this week. I was in this morning for my stress test when my doctor pulled me aside to share some news about my ultrasound. (That raised a big red flag since I wasn’t expecting any results until next week when all my tests were done.) He told me that I have ventricular septal defect (VSD), better known as a hole in my heart. It’s a genetic defect where there’s a hole between the ventricals of your heart. My doctor said ~10% of the population has it, and not everyone has health problems as a result, so we don’t know if mine is causing or contributing to my chest pain at this point.

(Of course you know the moment I got out of my doctor’s office, the first thing I did was call my parents and say, “It’s all your fault.”)

Then he reminded me not to run this weekend – I can walk instead.

Once I was done talking with my doctor, I got to have my stress test – that’s the one where you run on the treadmill with electrodes attached to your chest. They gave me a half gown thing to wear over my electrodes, but I was in a sports bra and I have no modesty issues so I opted to run without it. I had 8 electrodes on my chest and a blood pressure cuff on my arm where my tech periodically took my blood pressure. We had to go up four levels to get my heart rate up high enough – the speed and incline increased with each level. At each level, the machine produced an EKG printout. When it got challenging, the real issue wasn’t the speed, it was the incline. My calves and hamstrings were burning. I’m glad it only took 14 minutes to get through this.

The worst part about doing a stress test is you can’t have caffeine for 24 hours before the test. I popped a caffeine pill the moment my test was over.

My Holter ECG

My Holter ECG

After my stress test, they stuck a Holter ECG on me for 24 hours. It’s a heart monitor with 5 electrodes that connect to a recorder box that clips to my hip. When I saw the box, my first thought was “1990 called. They want their pager back.” With all these cords hanging off me, I feel like I’m wearing 5 iPods. For the duration of this test I’m not allowed to shower or sweat and they gave me a log to record any pain, dizziness, or other symptoms. I ‘m afraid one of the electrodes will come loose so I keep pushing on them. I probably look like I’m molesting myself. We’ll see how easy it is to sleep with this on my body.

I’ll see my doctor next Thursday to get the results of all my tests and hopefully he’ll have a proposed plan of action to deal with my pain. Until then, I’ll still train for the Rock ‘n’ Roll Marathon, but I’ll be walking my miles.

New Mystery: Why Does My Chest Hurt?

My new drug of "choice."

My new drug of “choice.”

As many of you know, I’m training for the Rock ‘n’ Roll Marathon Arizona in January. Unfortunately, I haven’t run a step since November 29th. I feel fine when I run but I started having chest pains after my long runs. After the second time it happened, I felt like a giant lumberjack stomped on my chest while wearing his work boots and then kicked me in the ribs. The night sweats are a bitch too. I woke up soaking wet halfway through the night last night.

I saw my general practitioner who referred me to a cardiologist. They couldn’t get me in for a week so I had to walk last week’s miles. Do you know how boring it is to walk 8 miles?

My friend Bill warned me that I would look very out of place at the cardiologist’s office – and he was right. The only person who looked close to my age was a woman who was there with her father. All of the patients were at least 25 years older than me.

My doctor seems like he knows what he’s doing. He asked a ton of questions, took lots of notes, and listened all over my torso. To my dismay and frustration, he didn’t have any answers for me yet, and if his has any hypotheses regarding what’s wrong with me, he didn’t share them. He created a solid-sounding plan of action to figure out what’s going on:

  • Ultrasound of my neck and heart
  • Stress test (that’s the one where you’re on the treadmill)
  • Heart monitor for 24 hours
  • Prescription for Prilosec in case there’s an acid reflux issue
  • He told me to switch from ibuprofen to acetaminophen (Tylenol)

I think taking me off ibuprofen is evil. Every woman I know (except those with stomach issues) swears by it. It’s the cure-all for everything – headaches, cramps, sore muscles, etc. I was not happy to hear that instruction. When I filled my prescription, I bought the biggest bottle of acetaminophen in the store. Between the headaches I’ve been having and the pain I get in my legs from working out, I’m going to need it.

My doctor echoed my general practitioner’s instructions that I can walk but I shouldn’t run until we figure this out. All of my testing is this week, but I won’t have my follow up appointment to get the results until next week. So I will be walking for the next 10 days – including the 18 miles I’m scheduled to do this weekend. 18 miles of walking?! This is going to suck.

Since I deal with the world and my life through blogging and social media, I’ll be documenting this whole process.

Marathon Training Week 12 Recap: WTF is Wrong with Me?

12 by Jalil Arfaoui from Flickr (Creative Commons License)

12 by Jalil Arfaoui from Flickr (Creative Commons License)

My training had a major setback this week. My chest has been killing me since last weekend. At first I thought it was just costochondritis, which I’ve dealt with off and on for years. The pain was bad on Sunday night and it extended into my neck, head, shoulders, ribs, and arms. I started having night sweats over the weekend too. And I mean sweating – I had to change my shirt two hours after I feel asleep because my shirt was soaked from the neck seam to the waist seam.

Monday: Holy shit my chest hurts. It hurts to take a deep breath, laugh, bend over, and sit up straight. I called my doctor as soon as the office opened and got a same-day appointment. They ran an EKG, which was normal (yay). My doctor listened to my chest and referred me to get a chest x-ray and to see a cardiologist. My doctor recommended that I walk instead of run my miles this week. (I suspect he’d prefer I not work out at all.)

Tuesday: My chest and head still hurt but it’s not as bad as yesterday. The idea of walking this week’s miles make me cringe. I run partially because I don’t have the patience to walk. I walked my 4.5 miles this afternoon. My foot hurt a bit and my chest and ribs hurt a bit. I kept myself entertained by listening to multiple episodes of The #AskGaryVee Show.

I got my chest x-ray results: normal. I’m glad the news was good but it’s annoying not knowing what’s wrong with me.

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!

Wednesday: My chest and head still hurt but the chest pain is continuing to improve. Walking is boring and I don’t like how much time it takes up. It took 2:10 to walk 8 miles today. I entertained myself by listening to the Dr. Drew Podcast and Evo at 11.

Thursday: I had to get my car serviced and pick up mail from my office. When I realized they were 2.7 miles apart, I opted to do 5.4 miles instead of the 5 miles I was assigned to do. Yay for killing 2 birds with one stone. Boo for the fact it was raining. I wore my raincoat from when I lived in Oregon but that didn’t prevent my jeans from being completely soaked by the end.

Here’s something that’s weird. When I run, my left leg and my right hip hurt. When I walk, my right leg and my left hip hurt.

Friday:  Rest Day.

Saturday:  My plan for the weekend was to skip cross training and walk the 12 miles I was scheduled to run on Sunday. That didn’t happen. I was pretty run down on Saturday and by Saturday afternoon, I was feeling weak and warm. It turned out I was running a fever. I slept from 5pm on Saturday evening until 6am on Sunday morning, waking up twice to change my sweat-soaked shirt.

Sunday:  I may be a masochist, but I’m not an idiot. My temperature was back down to normal by 7am, but I was still weak from the previous day. Plus something in my liver/lower lung area was hurting. I opted for a mellow day and did housework instead of walking for 3 hours.

I’ll see my cardiologist on Monday morning. Hopefully we’ll get some answers and I’ll be back pounding pavement soon. Being sick sucks.

Weekly Totals:
Running:  0 miles
Walking:  17.9 miles
Push-ups:  0 push-ups