Thursday, October 27, 2011

1st Round of Pre-Op Appointments Complete!

As you know, I've already received a second opinion and have an appointment for a third opinion scheduled in early November. So I now have pieces of my medical records disbursed at multiple hospitals across the city. However, for the sake of ease and consistency (as well as my high level of satisfaction with my experiences there), I've decided to keep Northwestern as my "home base" and to have all of the procedures and tests done there. This also makes sense since this is where the surgery will be taking place. At this point, I'm about 90% sure that I will be going through with the surgery; but I will make my final decision after receiving the third opinion. In the meantime, I've decided to keep all of my pre-op appointments. On the very off chance that I decide to postpone the surgery, then at least I've added a lot of important information to my cardiac medical records over the past few weeks.

This week consisted of two pretty significant pre-op appointments. On Monday (October 24, 2011), I had a chest x-ray and a pulmonary ventilation/perfusion scan. This scan is actually two separate tests. As described by the National Institutes of Health, "the ventilation scan is used to see how well air and blood flow moves through the lungs. The perfusion scan measures the blood supply through the lungs." I still need to follow up with the cardiologist to get the results.

Today was the appointment for my cardiac catheterization (angiogram). While it wasn't the most pleasant experience (But what hospital procedure is?), I do think that the anticipation was worse than the reality. The procedure itself lasted a little over an hour, but it was pretty-much an all-day hospital visit. I arrived at Northwestern at 6:30 this morning (thanks to the very generous door-to-door service from my parents). After all of the prepping was done, the procedure started a little after 8:30am and was followed by four hours of bed rest (required while the puncture site was healing). My dad graciously kept me company throughout the entire day, and my mom came back to the hospital after her own doctor's appointment. I think I watched more television today that I have in the past month!

All in all, it was a good day. Aside from the pulmonary aneurysm (which we already knew about), the angiogram showed nothing abnormal; and it confirmed that all of my heart's arteries are open and functioning well! The puncture site appears to be healing as it should, and both the nurse and doctor were pleased with what they saw before I was released, which happened just after 4:00pm.

Monday, October 24, 2011

A Celebration of Gratitude

This weekend, I had the honor of singing in the first concert of the Sing to Live Community Chorus's 7th season! I've been singing with this choir since it first started in 2005, and I have made some wonderful friends through the group. Sing to Live was founded by Melinda Pollack-Harris to bring the joy of singing and the gift of music to those whose lives have been touched by breast cancer. Music has been an important part of my own life since I had my very first piano lesson at the age of seven. I've sung in a few different choirs since college, and I have always believed in the healing power of music.

Now that I am in the midst of my own big journey, I had the opportunity to rediscover the real importance of music in my life. The theme of this concert -- A Celebration of Gratitude -- focused on being thankful for the gifts we have in our lives. The timing for me personally could not have been more appropriate. Since I started sharing the latest news about my heart issues with my family and friends, I have been receiving an incredible amount of support through one-on-one conversations, phone calls, emails, texts, and Facebook messages. Being able to share this concert with my choir friends (as well as a number of my family members who were in the audience) made for my own personal celebration of gratitude.

As I've said before, I believe that things happen for a reason. During this concert, I had the privilege of singing the solo in Greg Gilpin's song, The Gifts You've Given to My Life:
Sometimes "yes," more times "no," you showed me wrong from right.
Always patient with a tender smile every time that I asked "why?".
You showed me there is beauty if I only choose to see.
And life is full of choices, and the choice is up to me.

I wonder if you realize what all you've given me.
You've made such a difference in who I've come to be.
To all of my family members and friends who have been there -- and continue to be there -- for me every step of the way, I do hope you realize what you have given to me. I am able to maintain the positive attitude I have about this journey in large part because of your presence in my life. From the bottom of my heart (no pun intended), thank you. I love you all dearly!

Sunday, October 23, 2011

Second Opinion = Confusion!

Last Wednesday (October 19, 2011), I met with Dr. Hijazi at Rush University Medical Center to get a second opinion. What I expected to be a fairly straightforward visit and confirmation of the recommendation for surgery that I received from Northwestern ended up leaving me more confused than anything. In short, Dr. Hijazi told me that he wanted to see more data before he would make any recommendations going forward, specifically the results of a cardiac catheterization and a lung perfusion scan. (Both of these tests are already scheduled at Northwestern as part of my pre-op appointments.) While Dr. Hijazi did say that some intervention would be necessary, he believed that surgery would not be among his recommendations. Because of the low blood pressure through the pulmonary artery, he is not worried about it rupturing due to the aneurysm. Further, he said that a stent could be inserted (via a heart cath, as opposed to open heart surgery) to open up the stenosis of the pulmonary artery's left branch.

The next 24 hours were filled with confusion, uncertainty, and -- quite honestly -- a bit of fear. After having been mentally preparing myself for a major surgery since I was first given that recommendation in mid-September, I was now told that it may not even be necessary. After talking about it with my family, I decided to do two things: (1) schedule an appointment for a third opinion (this time at the Center for Adults with Congenital Heart Disease at the University of Chicago Medical Center) and (2) follow up with the cardiologist at Northwestern who gave me the initial recommendation for surgery. I now have an appointment in early November to meet with Dr. Eric C. Svensson, the medical co-director of the Center, to get a third opinion.

The next day, Dr. de Freitas (the cardiologist at Northwestern) returned my phone call. I told him that after meeting with him and the surgeon there, I decided to get a second opinion for my own piece of mine. I explained Dr. Hijazi's conflicting recommendation and asked for some more insight to help make some more sense out of everything. I was, once again, very pleased and impressed with my interaction with Dr. de Freitas.

He explained that he agreed with about 95% of the other doctor's recommendation. He said that, in most cases, he wouldn't be as concerned about the aneurysm (again because of the low blood pressure in that area of the heart) and would choose just to monitor it, as opposed to recommending surgery. The difference with me is that I've already had heart surgery and there is a patch on that pulmonary artery. What he doesn't know (due to the lack of similar medical case studies) is the strength of that patch in the midst of the aneurysm and the likelihood of possible rupturing of the artery. He explained that his recommendation for surgery is based on his preference for taking a calculated risk now (having the surgery in a very controlled environment) in an attempt to prevent a possibly serious (and potentially an emergency) situation down the line.

Dr. de Freitas told me that he was pleased to hear that I sought out a second opinion and that I was taking the time to ask all the right questions. He patiently and thoroughly explained his point of view, but he made it clear that, as the patient, I am in the driver's seat. He said that -- technically -- this would be an elective surgery, and that the decision to go through with it (or not) is entirely up to me. While his recommendation was clear, he told me that I wouldn't be "fired as a patient" if I chose to not have the surgery and that he would be happy to remain as my cardiologist if I wanted.

For those of you who know me personally, I often have trouble making decisions about where to go to dinner when I'm out with my friends. Now I have to make the decision to "voluntarily" have an elective open heart surgery?! On one hand, the idea of walking into a hospital for such a major surgery while feeling perfectly healthy and normal (and knowing there will be a significant period of recovery required) seems ridiculous. On the other hand, now knowing the facts, I'm not sure I'm comfortable going about my day to day activities longer term (and continuing to have an active lifestyle) while always being concerned about the situation and wondering "what if" or when.

I think I know what my decision is, but I'm still planning to go for that third opinion at the University of Chicago. The surgery and all of the required pre-op appointments are still on the schedule at Northwestern. If necessary, however, a single phone call can change that.

Tuesday, October 18, 2011

T Minus 50 Days

In 50 days, I will walk into Northwestern Memorial Hospital for my second open heart surgery. Given that my first surgery took place when I was only eight months old--on December 1, 1981: almost 30 years to the day before this upcoming surgery--this feels like brand new territory for me. (I wonder if anyone in my family is experiencing deja vu.) While I certainly wouldn't say that I'm looking forward to the upcoming procedure, it has been an enlightening and educational journey. I mentioned in an earlier posting that I knew I would not be going through this alone, and the overwhelming amount of positive feedback and support that I received in response to the email I sent out last week is very clear evidence of that fact.

I am incredibly fortunate to have such a strong support network, not only among my family members and friends, but also among my work colleagues and the medical professionals with whom I have been interacting. I can honestly describe my experience to date with the doctors, nurses, and other staff at Northwestern's Bluhm Cardiovascular Institute in two words: pure professionalism! Their direct, sincere, and patient-centered approach has allowed me to gain the confidence I need before undergoing such a major procedure. In addition, my genuinely inquisitive nature has caused me to do a fair amount of my own research along the way and has enabled me to have more intelligent conversations with the medical team. This has resulted in me having a better understanding of--and more control over--my own health!

I have no misconceptions that the upcoming journey will be easy, and I have already started taking some steps to help prepare myself for the physical, mental, and emotional challenges that lie ahead (both before and after the surgery). I have identified three (for now) primary methods of coping, processing, relaxing, and recovering: (1) reading: both for pure pleasure and for information; (2) playing music: primarily trying to get back some of my chops on the piano; and (3) exercising: with a focus on yoga and light cardio work.

Life is a journey, and in the words of Tony Horton: Bring it!

Wednesday, October 12, 2011

It's all about perspective. Attitude is everything!

Below is a copy of the email I sent out to family members and friends earlier tonight announcing the scheduled surgery date (December 7, 2011), as well as sharing my belief in the importance of keeping a positive attitude!
_________________________

Dear family and friends,

As most of you know, I got the news just about four weeks ago that I would probably need to have another open heart surgery in the coming months to address an aneurysm in my pulmonary artery. This was discovered by the cardiac MRI that I had done shortly after my bicycling accident in early August. (They say things happen for a reason. I guess I now know why that freak bicycling accident happened after all.) Since I got this surprising news, I’ve had some great conversations and have experienced a truly overwhelming amount of support and encouragement from family members, friends, colleagues (including my boss!), doctors, and staff and volunteers at the Adult Congenital Heart Association (ACHA): http://www.achaheart.org/.

ACHA is a great organization that I found online while doing some research on congenital heart defect surgeries and patient care. (I even borrowed their logo as my Facebook profile photo for right now.) ACHA is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart defects (CHD). I’ve already been paired up with a volunteer through the organization’s Heart to Heart Ambassador program; and Russell, my ambassador, has been a great peer and mentor resource for me. Not only do we share the same CHD (Tetralogy of Fallot), we are both avid bicyclists who were “reintroduced” to our condition after having another incident while bicycling as an adult.

All that said, I now have a date! I wish I could say that my date was tall, dark, and handsome and would be taking me out for dinner next week. But the date I’m referring to is for the surgery. Eight weeks from today (on December 7, 2011), I will be having the surgery at Northwestern Memorial Hospital. The team that I have been interacting with thus far has been nothing short of fantastic, from the nursing staff to the cardiologist and surgeon. I know that I’m in very good hands, and the doctors are fully expecting me to be back to bicycling and my other normal activities in no time after the recovery.

I will admit, however, that the phone call I received yesterday confirming the surgery date did catch me a little off guard. Even though I was expecting the call and knew it was coming, putting “Surgery” on my calendar -- and then blocking off the next six weeks as “Medical Leave” -- can definitely take its toll. As my boss said, I had been processing everything intellectually so far; but processing things emotionally is much different. I went ahead and took a few minutes to go for a walk, to call my family and share the update with them, and to start processing the reality that a date for surgery was now confirmed. Truth be told, it was all a bit overwhelming.

Even though I now have the surgery date scheduled, I still have an appointment at Rush University Medical Center next week for a second opinion. While I fully expect that the cardiologist there will agree with the recommendation for surgery, I still want to hear another medical professional say so before I go under the knife. On the off chance that he doesn’t agree, I think I will be more confused than anything (but I’ll address that if and when it happens).

As the subject of this email says, attitude is everything! I really believe that. Am I scared? Sure! I expect any sane person would be. But I am also extremely grateful for the opportunity to be able to process the news, get the advice and opinions I need, and proceed in an educated and logical manner. Not everyone has this opportunity, so I’m already ahead of the game. And as I told a friend of mine earlier today, I plan to continue laughing and joking all the way to the operating room!

To those of you who have offered support and words of encouragement (and you know who you are), please know that I am immensely grateful! Even though I know that I am the one going under the knife, I am well aware of the fact that I am NOT going through this alone; and that fact, in and of itself, is SO important to me. To those of you who I haven’t had the chance to talk with about this yet, please know that it’s not personal. You’re receiving this email now because I consider you an important part of my life, and I wanted to share this news with you. In today’s technological world, sometimes email can be the easiest and most convenient way to “go public” about something.

Speaking of going public, if you’re interested in reading more about my journey and you haven’t had a chance to check out the blog I created, I encourage you to do so: Ken of Hearts (http://kenofhearts.blogspot.com/). I also invite you to stay tuned to it as I fully intend to keep posting for the foreseeable future (well, aside from the days immediately following the surgery). But, as always, I’m happy to hear from you by phone or email, too.

Thank you for being you and helping me to be me!

Warmly and with gratitude,
Ken

Monday, October 10, 2011

Seeking a Second Opinion

As pleased as I have been with the doctors and nurses at Northwestern, I knew that it was still important to get a second opinion on the recommended surgery before going under the knife. When I mentioned this plan to Dr. Russell during my appointment last week, he was very supportive of it and said that he encourages his patients to seek second opinions before making a final decision.

At the strong recommendation of folks from the Adult Congenital Heart Association, I used the ACHD Clinic Directory to find another cardiologist and clinic specializing in adult congenital heart disease/defects. Because adults with CHDs have such unique circumstances, it's important to find cardiologists who specialize in this area. I now have an appointment next week to meet with Dr. Ziyad M. Hijazi, the medical director of the Center for Congenital and Structural Heart Disease at Rush University Medical Center. I fully expect that he will agree with the recommendation for surgery, but I do want to hear it from one more medical expert before I go through with it.

The Surgeon's Report

Last Thursday (October 6, 2011), my parents and I went to meet with Dr. Hyde Russell, the surgical director for the Program for Adult Congenital Heart Disease at Northwestern. Assuming I go forward with the procedure at Northwestern (which I fully expect I will be doing), he is the person who will be performing the surgery. I was very pleased with the meeting, and I feel that he answered all my questions candidly and completely. He also allowed me to audio record the whole conversation, so I'll be able to retain that for future reference.

In brief summary, the six to seven hour surgery will consist of two major components:
  1. Removing the aneurysmal tissue in my pulmonary artery and re-patching the artery. A Gore-Tex patch will be used, and he expects it will safely last for the rest of my natural life. (That said, he was very impressed with the durability and longevity of the original pericardium patch that was put on during my first surgery 30 years ago.) This procedure will fix the aneurysm, as well as the narrowing of the one branch of the pulmonary artery. Currently, the aneurysm is pushing up against this branch, causing it to be narrowed.
  2. Replacing the pulmonary valve with a cow (pericardium) valve. Even though this valve may have to be replaced in 15 to 20 years, that procedure can be done through a heart cath, as opposed to another surgery. (He doesn't want to replace the valve with a mechanical one, which would require me to be on Coumadin. So I'm a fan of that decision!)
Although Northwestern only does about 40 to 50 heart surgeries annually on adults with congenial heart defects (After all, the pool isn't all that big to begin with.), they do a total of about 1,000 open heart surgeries each year. Dr. Russell personally does over 200 open heart surgeries per year (between Northwestern and Children's Memorial), and the procedure that I need to have done is -- in his world, at least -- very common and straightforward. He has a 0% mortality rate post-surgery (which I truly appreciated hearing). Post-op infection rates over the life of the patient range between 2% and 5%.

He fully expects that my surgery and recovery will go smoothly and that I will be back to cycling and my regular activities in no time. Prior to this appointment, my cardiologist -- Dr. de Freitas -- told him that I was a pretty avid cyclist. When Dr. Russell asked what was the greatest distance I had ridden, I smiled when I told him about the 7-day, 565-mile ride last year in California (with the longest single day of riding being 107 miles). His jaw nearly dropped when he heard this, so he was quite impressed with that fact.

Next steps: I have a dentist appointment later this week to get the dental clearance I need before having the surgery. This is done to ensure that no oral infections are present, which could potentially spread to the new valve. Once I have that done, I plan to schedule the surgery at Northwestern later this fall. I already have a call in to the surgeon's nurse, who is checking calendars for available dates during the first full week of December.

Wednesday, October 5, 2011

Meeting the Surgeon

Tomorrow afternoon, I'll be meeting with the cardiac surgeon at Northwestern for the first time. My parents will be going to the appointment with me, and I plan to ask the doctor for permission to audio record the conversation so that I can be sure to keep track of everything that we discuss. Since I first got the news almost three weeks ago about needing this surgery, I've started compiling a list of questions to ask the cardiologist and/or the surgeon before going through with the procedure.

Here is the list of questions that I've come up with so far. This is not meant to serve as a comprehensive list for others in a similar situation, nor will these necessarily be the only things that get discussed tomorrow:
  1. What are the details of the procedure that will be done?
  2. How long is the surgery itself expected to last? 
  3. What is the expected time line for everything (surgery, hospital stay, recovery, and rehab)? The cardiologist initially suggested the following time line. Would you concur?
    • Hospital stay: 4 to 8 days
    • Recovery: 6 weeks (including hospitalization)
    • Cardiac rehab: 6 to 10 weeks
  4. What types of anesthesia will I be given? What are the expected after-effects?
  5. How likely is the need for a future surgery (in 10, 15, 20, 25, or more years)?
  6. How many of these surgeries have you performed? What is your mortality rate? What is your post-surgery infection rate?
  7. What are the immediate and long-term risks if I don’t have the surgery?
  8. Will I need to be on any anti-rejection drugs (or immunosuppressants) after the surgery?
  9. Will I need to be on any other types of medication (long- or short-term) after the surgery?
  10. What are the dietary and physical restrictions during the recovery and rehab (short term)?
    • When can I consume wine or other alcohol again?
    • When can I resume bicycling or other similar physical activities?
  11. What are the dietary and physical restrictions after recovery and rehab (long term)?
    • Will any of my regular activities have to be reduced or eliminated?
  12. A friend of mine said she recently read that some heart surgery patients have found singing to be very therapeutic, whether in an organized setting or just on their own (and regardless of whether or not they've ever sung before). What are your thoughts on singing--or music in general--as a type of post-surgery therapy?

Saturday, October 1, 2011

I'm coming out. I want the world to know.

It has been just over two weeks since I met with my new cardiologist for the very first time and was told that I would probably need to have another open heart surgery in the coming months. While (fortunately) it's not an emergency, it is a serious matter that needs to be addressed. I spent most of that evening in shock while processing the news and telling my parents and sisters, all of whom remembered my first heart surgery nearly 30 years ago. (I was only eight months old at the time, so I clearly have no recollection of that surgery.)

In the days that followed, I took a lot of time to think about and process the news I had just received, did some of my own research and reading online, and selectively told some of my closest friends about the situation. I am incredibly lucky to have an amazing network of family and friends, who all provided words of support and encouragement  and offered to help in anyway they could. One of my friends told me about her cousin, who, when he was in his early 30s, had been diagnosed with a very rare type of cancer. He chose to start a blog about his own journey through the treatment and recovery process; and this story was also part of the impetus for the creation of this blog.

As I reflect on the past two weeks and the process of sharing this big news with family and friends, I can't help but comparing it to the process I went through over a decade ago when I came out of the closet as a gay man. While I think more people were surprised to hear this more recent news about the upcoming surgery, I found myself going through a similar set of steps:
  1. Come out to yourself. Deal with the anger, confusion, and questions along the way; but accept and embrace the reality for yourself first.
  2. Share the news with close family and friends. Tell the people closest to you. Get their acceptance, support, and feedback. Then determine how to move forward together.
  3. Live openly. While it's not necessary to plaster the news on a billboard or to work the news into every introduction you have with people, just go about living your life day to day. If the topic comes up, discuss it. If it doesn't, don't worry about.
While I completely understand why not everyone can (or maybe doesn't want to) "come out" in this manner (regardless of what type of news they have to share), this was simply the approach that I chose for myself. I decided to make this blog public as a way of sharing my personal story more widely. If people have the opportunity to read about and understand the personal stories of adults with congenital heart defects, perhaps that increased knowledge can help with the advocacy efforts of organizations like the Adult Congenital Heart Association.That is my hope.