Friday, September 30, 2011

It's Basically Official

I received a phone call last evening from my cardiologist informing me that he had met with the surgeon, who agreed with the recommendation that I proceed with the surgery to address the pulmonary artery aneurysm. In all honesty, the call was no surprise, and I had been mentally preparing myself since the initial visit to the cardiologist two weeks ago. I was on the phone with him for over 40 minutes, as he patiently and calmly talked me through the next steps, some of the details about what he and the surgeon discussed, and answered every last question I had (including many that I know I asked him when we met the first time). While I'm not necessarily looking forward to the surgery, I am grateful that this issue was discovered now before it turned into an emergency situation at a future date. Because I hadn't continued with regular cardiology visits since approximately 2001, there's a lapse in my medical records; and as a result, it's difficult to determine whether the enlarged artery is something I've had for an extended period of time or if it developed in recent history.

Just this morning, I was able to get my next two appointments scheduled: the pre-op consultation with the surgeron and a cardiac catheterization (or heart cath).

Pre-Op Consultation
Next week, I will be meeting with the surgeon who (assuming I decide to go forward with it at Northwestern) will actually be performing the surgery. He and the cardiologist regularly work closely together, both split their time between Northwestern and Children's Memorial Hospital, and both have extensive experience with both pediatric and adult congenital heart patients. If the surgeon is anything like the cardiologist has been in terms of his approach to working with patients, I will be very pleased and grateful!

At the appointment, the doctor will go into more detail about the proposed procedure, the overall process, and the recovery and rehab periods; and he will answer whatever questions I have. (Hopefully he's patient, as I already have a growing list of questions to bring with me.) I will also be bringing a family member or two with me just so that other people are hearing all the details, and I intend to request permission to audio record our discussion so that I can be sure I'm capturing all the details that are discussed.

Cardiac Catheterization
Near the end of  October, I will be returning to Northwestern for a cardiac catheterization. The heart cath is typically an all-day, outpatient appointment. The procedure can be done for a variety of reasons. Mine is being done specifically to get a better assessment of my heart's hemodynamics (or blood movement). While the MRI that I had done last month was able to provide excellent images of the heart, the catheterization is being done to get a better measure of the blood pressure within the heart and oxygen in the blood. The results will help to decide which additional procedures should be done during the surgery.

In addition to detecting the pulmonary artery aneurysm (the primary reason for the recommended surgery), the MRI and the other tests that I had done provided additional details about four other issues present in my heart:
  1. pulmonary valve insufficiency,
  2. pulmonary valve stenosis,
  3. pulmonary artery stenosis of central branch, and
  4. NVST (nonsustained ventricular tachycardia).
In my case, the cardiologist informed me that none of these additional diagnoses would warrant heart surgery in and of themselves. However, since the surgery is already being recommended for the pulmonary artery aneurysm, the doctors want to determine if it makes sense to correct any of these other problems during the same procedure since they would already be in there. The heart cath will help the doctors assess the situation and guide their recommendations in this area.

Saturday, September 24, 2011

Things Happen for a Reason

I was raised Catholic, but I have been nonreligious since college and consider myself agnostic today. That said, however, I've long believed that things happen for a reason. Even though we may not always understand those reasons (and the phrase itself may sound trite and cliched), I still think that it's true. I've had a few key examples from my own life (some in very recent history) that have supported this belief:
  • I quit my first "real" job after college because of incompetent and disrespectful management at the agency. I then took a long-term temp assignment that turned into a rewarding full-time job four months later with a salary significantly higher than I was making before.
  • I got laid off from my last job—in what was another less-than-ideal work environment—in May 2010 on the heels of completing my master's degree. I then had the most incredible summer that included a seven-day bike ride in California with my sister and that allowed time for me to relax and "detox" from the stress of grad school and an unhealthy job situation. Three and a half months later, I was hired by a world class organization. I now have a great boss and support system there.
  • I went for a bike ride one day after work in early August, which ended in an accident, concussion, a visit to the ER, and a two-night stay at Northwestern Memorial Hospital. Through the tests conducted while I was in the hospital and the follow up MRI, it was discovered that I will probably need another heart surgery in the coming months.
I considered naming this blog How Bicycling Saved My Life, but it sounded a bit too over the top and dramatic. However, it may not be that far from the truth. One of the main reasons for all of the extra testing that I had during and after my stay in the hospital was because of my tetralogy of Fallot. When the attending physician discovered the sudden arrhythmia while I was still in the hospital, it sparked the question of whether or not an arrhythmia was the cause of my bicycling accident. After reviewing all of the test results, both the cardiologist and the electrophysiologist were in agreement that the arrhythmia very likely did NOT cause the accident. Thus, it really seems that it was only a coincidence that my enlarged pulmonary artery (discovered during the cardiac MRI) was detected because my bicycling accent landed me in the hospital.

Like I said, I believe things happen for a reason! I don't pretend to know how or why they happen. But I believe that my bike accident happened so that this issue could be detected and addressed before it became an emergency situation. While I would have preferred a less dramatic way of getting the news, I am grateful nonetheless!

Monday, September 19, 2011

Impetus

This past Thursday (September 15, 2011), I walked into the cardiologist's office at the Bluhm Cardiovascular Institute of Northwestern Memorial Hospital, fully expecting this visit to be like so many I'd had before. But this one would be different and would be the impetus for the creation of this blog.

In early August, I went for a bike ride along Chicago's lakefront path after work (a common thing for me to do in the summer), and I later woke up in the ER at Northwestern, completely unaware of what had happened. The doctors and police officers who were there told me that I had been in a bicycling accident. According to reports from witnesses, it looked like I swerved to avoid hitting someone or something on the path and then just fell. (I have no reason whatsoever to think that I was attacked or that there was any foul play involved.) As it turns out, I had a concussion and (likely) a seizure just after falling; but I have no recollection of the accident. Aside from a small scratch on my left hand and one on my left elbow, I had no physical signs of any injury: no broken bones, no major cuts or gashes, and no major pain. I later discovered that my bike helmet was cracked in about four places, clearly explaining the concussion.

Because of my preexisting heart condition (which very well may have been conveyed to the emergency responders thanks to my Road ID), I was put on a heart monitor while I was in the hospital. Thankfully, all of my tests had come back normal, and the necessary period of observation had passed after I spent the night there. The attending physician was preparing to discharge me the next day; but in the final moments of printing out my release paperwork, she discovered an arrhythmia that hadn't shown up during the rest of my visit. Long story short: I wasn't getting released that day!

This past Thursday's appointment with the cardiologist was a follow up visit that was scheduled while I was still in the hospital in early August. The doctor would review not only the results of all the tests administered in the hospital, he would also review the information collected from the heart event monitor that I wore for a month following my release from Northwestern. What I expected would be a brief visit with the cardiologist mirroring those that I had growing up turned out to include a preliminary recommendation for another open heart surgery to address a pulmonary artery aneurysm!

During my visit, the cardiologist took a great deal of time and care to talk with me about my overall health and activity level, to interpret the results of my various tests in great detail, and to clearly explain why he believes a surgery is necessary in the coming months. At this point, however, nothing is definite. The doctor is meeting with the surgical team in the coming weeks; and they will schedule another follow up appointment with me in mid-October, at which time they will present to me their joint recommendation, presumably to proceed with the surgery in the near future.

I've created this blog for three distinct audiences and for three distinct purposes:
  1. For myself: to document this upcoming journey, both for the immediate therapeutic benefits and the longer term archival purposes;
  2. For my family and friends (I am very fortunate to have such an incredible support network!): to keep everyone as up-to-date as possible with all the details; and
  3. For the public (eventually): to provide others with a glimpse into the life of someone who is living a healthy adult life with a congenital heart defect.
Regardless of which category you fall into, I welcome you to this journey!

Introduction

Welcome! For those of you who haven't met me and don't know me personally, allow me to introduce myself. My name is Ken Woodhouse. I am 30 years old, and I was born with a congenital heart defect known as tetralogy of Fallot. In December 1981 (at the age of eight months), I had open heart surgery to repair this defect. While the surgery addressed the four problems associated with tetralogy of Fallot, a leaking heart valve was not replaced at that time. Had the doctors replaced that valve when I was an infant, they would have had to continually replace it every few years as I grew up. The decision was made to allow the small leak to remain (something I could live with) and to just monitor it closely through regular check ups.

I remember, as a kid, the annual visits to Children's Memorial Hospital, where my surgery was done when I was a baby. Every year, the feedback was generally the same: everything still looks good, but we suggest you lose some weight. I was a chubby kid, and the doctors were concerned that the extra weight could cause additional heart problems down the road. From the end of my freshman year in high school to the very beginning of my sophomore year, I had my adolescent growth spurt and lost about 40 pounds. (I guess I finally took care of that weight thing.) I have been slender ever since.

With no physical restrictions (aside from football) growing up, I often liked to be active. Although I never really gravitated toward organized sports, I always enjoyed being active, especially outdoors. I've loved bicycling for as long as I can remember; and over the past few years, I've done a number of distance rides, including the Ride for AIDS Chicago twice, AIDS/LifeCycle, and the Door County Century. Not bad for someone who -- had he been born just ten years earlier with the same heart defect -- may not have lived to adulthood!