Recent Entries
Be Your Own Patient Advocate
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
The Long and Lonely Miles
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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

By ACHA on 2/21/2014 9:12 AM

By Christy Sillman

I thought pregnancy/labor was going to be the hardest part of being a mother with congenital heart disease, and let me tell you, it wasn’t exactly a walk in the park—but what I’ve found most surprising is how challenging motherhood itself would be in the face of my CHD.

Regardless of how you become a parent – old fashioned baby-making vs. surrogacy vs. adoption – you never really know what you’re getting into until you’re there. It’s a club only parents understand. I thought working 12-hour night shifts in a busy pediatric ICU was motherhood “training,” but little did I know that I’d later view those 12-hour shifts as my mommy breaks!

By ACHA on 12/16/2013 9:33 AM

By Christy Sillman

My January heart checkups are historically the worst. At first I thought it was just a strange coincidence, but now I’m starting realize how the fall/holiday season really takes a toll on me. This year I’m trying something new – I’m trying to be more heart healthy and conscious of my usual pitfalls.

It’s a lot easier to convince yourself not to work out when it’s freezing cold outside or your to-do list seems impossibly long.

Here is my December “game plan” for keeping my heart healthy:

By ACHA on 10/10/2013 11:33 AM

By Christy Sillman

Dear Young Christy,

It’s 2013, and guess what? You’re alive! Not only are you alive but you’re living a life you never could have imagined was possible. Spoiler alert – you have a loving husband, a gorgeous child, and a fantastic career. I know you’re really confused right now after open heart surgery, but I wanted to give you some tips to help you through the next few years.

By ACHA on 8/26/2013 11:50 AM

By Christy Sillman

I recently realized that home feels different. Not my actual house, but the people who make up my emotional home. I’ve always felt safest with my parents. I felt nervous traveling without them, and always wanted to live close to them. It’s taken 12 years but the “CHD torch” has been passed—my husband and son are truly home to me now.

I know that this emotional transition is part of what “growing up” is all about, but when you have CHD it’s different. My parents have been through a lot with me. They’ve been by my side every step of the heart journey. Navigating and learning through the journey together has developed a stronger than average bond and a sense of security I never really had with anyone else—I guess that’s what unconditional love is all about.

By ACHA on 7/11/2013 10:40 AM

By Christy Sillman

I know I’m not the only one who experiences some pre-appointment anxiety. Living with CHD involves periods of normalcy followed by extreme upheaval, and we never know when that upheaval will come. We’re constantly waiting for the “other shoe to drop” and regular cardiology appointments are often where those shoes fall off. So, it’s no wonder that the days leading up to our appointments can be a little stressful.

By ACHA on 5/6/2013 12:40 PM

By Christy Sillman

As I reflect back on Sacramento’s inaugural Congenital Heart Walk in late April, there are a lot of things I feel like celebrating. We tripled our first year goal. My team came in second for fundraising. I felt so much support from the people in my life who walked with me as part of my team. But there’s one aspect of the walk’s raving success that I’m overwhelmed by – the local CHD community finding each other.

I spent two years as a pediatric ICU nurse in our local hub for cardiothoracic surgery, UC Davis Medical Center, and I was blessed to care for many local heart families during that time. So I knew there had to be a large CHD community in California’s capital city of Sacramento.

By ACHA on 3/29/2013 11:47 AM

By Christy Sillman

I had the great honor of traveling to Washington, D.C. to be part of Congenital Heart Advocacy Day last week. Besides being a wildly exciting adventure that I’m sure to never forget, it was also an experience that brought about great personal growth for me.

I had no idea what to expect. I’m not particularly politically minded, but knew that having a voice in D.C. was important towards our CHD advocacy.

By ACHA on 3/4/2013 11:07 AM

By Christy Sillman

I’ve decided to leave my local cardiologist, and it really feels like a messy breakup. I’ve given this cardiologist several chances to regain my trust and rekindle the working relationship we started off with, but there comes a point where enough is enough and you just need to walk away.

Advocating for yourself is hard. You sometimes have to be the “bad guy” and can often feel like you’re doing it all wrong. I think we’ve all been there—whether it’s calling for test results, asking for second opinions, or putting in special requests. We put ourselves out there hoping they’ll understand our needs.

By ACHA on 1/23/2013 12:59 PM

By Christy Sillman

I love this time of the year. New beginnings, making yearly plans, annual vacation requests, and best of all, heart week.

I’m new to celebrating CHD awareness week; in fact, I’m new to the CHD community in general. Just three years ago I discovered ACHA. Prior to this discovery I had one friend with CHD – one!

By ACHA on 12/17/2012 1:49 PM

By Christy Sillman

You know that list they’re required to read to you before surgery? The one that states all the possible complications—I mostly remember death or dismemberment. I closed my ears, swallowed hard, and signed the paper with a silent prayer. I don’t, however, remember them saying “you could lose the ability to speak.”

Prior to my last surgery I was quite a chatty person. I used to talk all day and night to anyone who would listen. As a teenager my parents had to get me my own separate phone line and I practically had the phone glued to my ear. Then, at 17, the height of teenage talkativeness, I had my pulmonary valve replaced, and I woke up from open heart surgery without a voice.

By ACHA on 10/31/2012 2:37 PM

By Christy Sillman

I have a problem saying "no" to people. I don't know why, but I just feel horrible. You could ask me to drive you across the country and I will actually take a second to think about if I can make it work—there's no possible way I could actually do it, but I'd consider it for sure.

I just love helping people. I get a high from making other people's day better/easier/happier. That's why being a nurse is a calling more than a job for me.

By ACHA on 9/27/2012 8:53 AM

By Christy Sillman

I’ll admit it—I’m a control freak. I’m a type-A, people pleasing, perfectionist wacko. I don’t know if it’s from growing up around medical personnel (they’re generally all type-A people) or if it’s genetic, but it’s just who I am. I’m often up late at night reassessing my five-year plan and adjusting as needed. I like to plan—I don’t formulate only plan A and B, I’ve got at least through plan F prepared.

One of the most frustrating parts of living with CHD is not being able to truly plan. With the unpredictability in the nature of our disease—the periods of “normalcy” followed by huge life upheavals when there’s a new procedure or surgery we have to face—it’s sometimes easy to feel out of control or depressed. When I was diagnosed with cardiomyopathy after my pregnancy I was devastated and fell into an angry depression; I was focusing on what I couldn’t control and I felt helpless.

By ACHA on 8/10/2012 12:03 PM

By Christy Sillman

The weekend before I entered junior high school my parents took us to the Great America theme park here in Northern California. It was there that I experienced my first anxiety attack, and I quickly fell down a dark hole of anxiety and depression that kept me confined to my home for almost two months. I felt so alone, and so shameful of my mental health issues. No one, not even the psychologists they sent me to, mentioned that anxiety, depression and other mood disorders are common in people with CHD. It would have made all the difference in the world.

By ACHA on 7/9/2012 9:39 AM

By Sarah Vogt
Guest blogger for her best friend, Christy Sillman

“’Tis better to have loved and lost/Than never to have loved at all.” —Alfred, Lord Tennyson

Our friendship blossomed in autumn of 1997. My geometry teacher paired Christy and I up for an assignment. I noticed over time a large scar on the chest of my math partner that she masterfully tried to cover. She would wear high necked shirts or put makeup on her chest to conceal the long, thin, lumpy line.

Finding Christy’s scar made her that much more appealing to me. It meant she had been through some sort of pain. It meant she probably had a story of triumph. I saw strength in her pain.

By ACHA on 6/6/2012 10:21 AM

By Christy Sillman

Where is our Michael J. Fox? What he’s done for Parkinson’s is amazing and commendable. He’s personalized the disease for so many out there who aren’t familiar with it. He’s owned his disease with such honor and respect.

Congenital heart disease is the most common birth defect and there are over a million adults living with congenital heart disease—why don’t we have a celebrity leading the fight for better research and delivery of care for adults with CHD?

By ACHA on 5/7/2012 12:19 PM

By Christy Sillman

Sometimes I can’t believe I’m a mom. It’s not that I never thought I’d be a mother—it’s just that I never allowed myself to dream that far into the future. It’s a protective mechanism I’ve utilized since I was very young. I focused my energy on the present, and tried not to get too bogged down by the long-term future. It’s the result of growing up against all odds.

That’s all changed; now all I think about is the long-term future.

By ACHA on 4/18/2012 1:36 PM

By Christy Sillman

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

By ACHA on 3/14/2012 11:19 AM

By Christy Sillman

“I wish I never knew congenital heart disease,” posted one of my heart mom Facebook friends. I get what she is saying—that none of us chose to know CHD, but it is all we know so we’re forced to face it head on. I think about all my family members and how CHD has changed their lives and the guilt starts to sink in. It’s so silly because it’s not like we asked for CHD; it just hurts to feel like a burden.

There are heart moms, heart dads, heart grandparents, and even heart siblings who I know wish they were ignorant to a life with CHD.

But what about the heart spouses and the heart friends? These are the unsung heroes of the CHD support team. When you really think about it, they are willingly choosing to invite CHD into their life. That is something really astounding.

By ACHA on 2/2/2012 2:44 PM

By Christy Sillman

February is Congenital Heart Disease Awareness Month, and I’m feeling a little stuck on how to bring about more awareness. I mean, I’m aware of CHD because I have CHD. My close family and friends are aware because someone they love (me) has CHD. But how do I get the average acquaintance to become more aware of CHD without it coming across like I’m complaining or being annoying?

What do I even want them to be aware of?

By ACHA on 1/3/2012 8:24 AM

By Christy Sillman

It’s 2012! That is wild! Shouldn’t we have flying cars or be hanging out with neighboring aliens by now? That’s what I thought when I was a little girl. Sometimes I think we haven’t advanced much as a society. But when my best friend was anxiously grilling me on what the future of my cardiology needs might be, I realized that a lot has changed, especially in the field of CHD care.

By ACHA on 12/9/2011 9:34 AM

By Christy Sillman

The moment I awoke from anesthesia with my very healthy son on my chest is something I will never forget—the gratitude I felt was overwhelming. I just felt so thankful that my body made this beautiful, healthy human and that my life was now extended through him.

Throughout my pregnancy I had frequent ECHOs, all of which were read as “stable.” Two months postpartum, my OBGYN said to me “see you next time.”

By ACHA on 11/15/2011 11:39 AM

By Christy Sillman

I want to preface this blog by reinforcing that everyone’s journey is different, and just because I had a particular pregnancy experience does not mean everyone will have a similar one.

Although I was given the green light by a pediatric cardiologist to go ahead and try to get pregnant with my husband, I had to wonder how many pregnant patients a pediatric cardiologist follows. I went into my pregnancy saga full of fear, trepidation and excitement.

By ACHA on 10/21/2011 9:44 AM

By Christy Sillman

Ever since I was a little girl I have had this idea in my mind that I wouldn’t live past 30 years old. I’m not sure exactly why, but the catchphrase of “Doctors said she wouldn’t live past three days old and she ended up living 30 years” kept entering my mind. You see, I’ve been living my life on borrowed time. Every year feels like a gift or another year of defiance, and my pure focus has been on surviving.

By ACHA on 9/22/2011 11:14 AM

By Christy Sillman

I made a promise to myself when I was lying in the Pediatric ICU as a 17-year-old recovering from open heart surgery – I would never endure an optional surgery such as plastic surgery. I’d been through enough. It didn’t make any sense to ever put myself through surgery if I didn’t have to.

Now I’m contemplating relinquishing that promise.

By ACHA on 9/12/2011 11:56 AM

By Christy Sillman

I love how unsuspecting people are when they play a game of scar wars with me. You know—the game where someone shows off their gnarly bike accident scar and then the whole room starts comparing scars. I usually hold back, start off slow with my skin cancer scar, or my busted knee scar, and then—WHAM—I pull up my shirt a bit and the whole room goes silent. It’s awesome, and I’ve learned to use it to my advantage over the years.

By ACHA on 8/25/2011 10:43 AM

By Christy Sillman

One of the most vivid memories of my last open heart surgery in 1998 was driving through San Francisco on our way to UCSF with the music blaring. I felt a pit in my stomach as I contemplated whether that day would be the final day of my life. I felt an urge in my legs to tremble but instead I was forcing them to tap to the beat. The song was “Hit Me with Your Best Shot” by Pat Benatar.

“You’re a real tough cookie with a long history, of breaking little hearts like the one in me” — was I imagining God or my surgeon when I sang along to that lyric, or maybe just fate?

“That’s OK, let’s see how you do it. Put up your dukes, let’s get down to it. Hit me with your best shot. Fire away…”

By ACHA on 8/10/2011 8:38 AM

By Christy Sillman

I remember the first time I sat in an adult cardiology waiting room. It was refreshing to have adult-themed magazines to look at and I enjoyed the peace and quiet of the elevator music. I still stood out from the crowd, but this time instead of being the oldest patient in the room I was now the youngest. I wasn’t quite sure of what to expect when I transitioned into adult cardiology care, but I never anticipated how much I would ultimately need to advocate for myself in a world where the title “heart disease” is synonymous with coronary artery disease, or acquired heart disease.

By ACHA on 7/26/2011 1:41 PM

By Christy Sillman

“Why did you want to become a nurse?” is a question I get often, especially after people learn about my congenital heart disease. I’m not even sure how to answer that. Some days I hesitantly ask myself the same question.

It’s not like I entered nursing school with the final goal to be working in the pediatric ICU; in fact, I feared that unit the most out of all our rotations—well, that and the operating room. They both hit a little too close to home. My goal was to get my RN license and go work in a clinic or another non-hospital related nursing area. But something happened when I started working with patients in the hospital—I related to them in a special way because of my experiences, and they appreciated it.

By ACHA on 7/6/2011 9:07 AM

By Christy Sillman

“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?

I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.

By ACHA on 5/26/2011 10:04 AM

By Christy Sillman

Patient or nurse, nurse or patient — who am I? This was a question I faced often while I attended the Adult Congenital Heart Association's national conference in Los Angeles about a month ago.

I had intentions to stretch myself between both worlds — to attend both patient and health professional sessions. After all I am both a nurse and an adult with congenital heart disease.

My name badge didn’t specify “who” I was, but next to my name badge, my role was very clear. My “zipper” isn’t that red anymore, but it is visible to those who look for it. I caught myself staring at attendee’s chests, looking, wondering… professional or Zipper Club member?