Wednesday, November 30, 2011

And the FINAL verdict is...

Tomorrow is a brand new month and a very significant milestone for me. It's the 30th anniversary of my one and only open heart surgery! Below is a copy of the email I sent out to family members and friends this evening. Now that a final decision has been made, it's time to shift the focus of this blog from documenting the play-by-play of this recent journey to a broader focus of generally living a healthy and active life with tetralogy of Fallot.
_________________________
 
I'm not going to have the surgery!

As you know, the last two and a half months have been like a roller coaster ride I've never experienced before. Tomorrow (December 1, 2011) marks the 30th anniversary of my first (and, so far, only) open heart surgery; and I recently set that date as my own deadline to make a final, final, final decision ... and then to go confidently in that direction, to stop questioning, and to cease the second guessing of everything. I'm tired of being tired, exhausted, scared, and unsure.

This morning, I emailed the ACHD cardiologist at the University of Chicago, from where I got the third opinion (and the second opinion that advised against the surgery) to ask if I could change my mind again and to keep him as my regular cardiologist going forward, as well as to proceed with his recommended less-invasive approach. He replied this evening and said that he would be happy to do so.

After I thought I had made a "final" decision multiple times in each direction over the past few weeks, the truly final verdict came down to (at least) a couple key points:
  • The majority of the doctors I met with and/or who reviewed my case actually advised against the surgery. While I didn't meet with him directly, this group of individuals included Dr. Michel Ilbawi, who was the first assistant during my surgery 30 years ago. Dr. Ilbawi is now the director of pediatric cardiac surgery in the Department of Cardiovascular-Thoracic Surgery at Rush University Medical Center; and he was part of Rush's comprehensive medical/surgical conference that reviewed my case (for the second opinion) and collectively advised against the surgery.
  • The ACHD cardiologist at the U of C, who will be my primary cardiologist going forward, had (in my opinion) the best patient-centered approach of all the doctors I met. While I wasn't at all unhappy with any of the care or evaluations I received from Northwestern or Rush, the U of C cardiologist's direct and compassionate approach was unmatched. In addition, he has been very accessible to me and has thoroughly answered and responded in a timely manner to every question and concern that I've raised with him.
Life is uncertain. While there is a very real possibility that I will need another open heart surgery at some point in the future, now is not the time for it. Is it possible that a serious cardiac event could happen to me? Sure! But it's also possible that I'll get hit by a car while walking to the train on my way to work tomorrow morning. While that would certainly be a crappy way to start my 30th anniversary, I won't be losing sleep over it tonight!

Earlier this evening, I sent an email to the doctors at Northwestern informing them that I had changed my mind (again) and that I decided to cancel the second surgery appointment (which I actually just called to schedule earlier this week) and that I would be working with another ACHD cardiologist going forward. Ironically, as I was writing this message, I received a phone call from the cardiologist at Northwestern, who was working late into the evening and just wanted to follow up on my email. We actually had a very pleasant conversation, as I talked briefly about the crazy journey I've been on since mid-September and how I ultimately came to my final decision. He was very cordial and understanding, and he even told me that it sounded to him like I had made the best decision for myself. He admitted that this comment sounded ironic coming from the person who initially recommended the surgery; but he explained again that in unusual cases like this, it's not uncommon for different doctors to have different opinions. He said that he was confident that I would be getting excellent care and wished me well. Truth be told, I'm actually really glad he called; and I feel like there is now positive closure to our doctor/patient relationship.
Next steps: I will be working with the doctors at the U of C to do the following:
  1. Schedule an appointment to have a stent placed in my narrowed left pulmonary artery, which will be done in a cath lab;
  2. Meet with the electrophysiologist, who will assess for cardiac arrhythmias that might have led to my biking accident this past summer; and
  3. Start preparing for my next distance bicycling event in the summer of 2012!
I cannot thank each and every one of you enough for your love and support during this crazy time. Your prayers, good wishes, kind words, and supportive messages—whether in person, on the phone, or online—have meant more to me than you can possibly imagine. I don't think I have been more confident in my recent decision making than I feel right now. Earlier today, when I told myself that this really is my decision, I truly felt like the weight of the world was instantly lifted off of my shoulders. And I took that as a good sign!

From the very bottom of my heart (even though it's still got a leak and an aneurysm in it), thank you!!

-Ken

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