“Taboo” ACHD Activities

Today’s post is on a subject that people with CHD don’t always discuss, but it is a very important topic nonetheless: sex. Below is one woman’s account of what it’s like to be with her husband, with CHD. Due to the sensitive nature of this topic our blogger has asked to remain anonymous.  

Shedding a light into a CHD patients sex life is something people just don’t talk about. And I get it. Sex is the most personal and intimate form of physical connection someone can have with another human being. The topic also gets the back seat because as a CHD patient, we deal with life and death situations. Sex becomes an afterthought.

When it comes to sex, there are two questions I always ponder with: one, am I beautiful enough to have sex and two, will I be able to physically endure sex.

As a woman, we are constantly told by the media of what a perfect body looks like. You will be hard pressed to find anyone representing scars in a Victoria Secret advertisement, new bathing suit line or in a movie. With these constant images of what a perfect body should be, it makes it that much harder to be physically vulnerable with someone. It took me a long time to feel comfortable with my body and that only truly happened when I married my husband. My husband validates that my body is beautiful. I have never felt insecure in our sex life because of him. He makes me feel confident in every aspect.

My CHD health has been changing and with that, my sex life has changed as well…not drastically but it has changed. I am not always able to physically endure sex. There will be times I have to pause or stop to catch my breath. It is frustrating to say the least, especially when you are finding your groove. I am so thankful that my husband never pressures me to keep going. He listens and trusts me when I need a break. Once a skipped beat has passed or I am no longer short of breath, we pick up where we left off.  

I truly believe that my husband and I have a beautiful sex life because he allows me to be vulnerable without judgement. He validates my beauty and trusts me when I need a break. Sex doesn’t have to be a scary thing or off the table for patients with CHD. It is all about finding the right person to share that life with. Someone who understands, embraces your scars and follows your lead.

Action Alert: Tell your Representative to Sign-On

In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million.

Therefore we need to strongly advocate for full funding of the $10 Million in the budget for Fiscal Year 2020, or FY2020.

One way to do that is to encourage your Representative to sign their name to the Dear Colleague Letter that is being circulated in the House.  The Senate is also working on one for the Senators, and we will share it as soon as it is available.

 


Email your Representative, today!  (Remember, you can email their staff, too)

Here’s how:

1. Find their contact information

You may have it on a business card

You can visit House.gov to get the phone number. You can call and ask for the email address of the Health Legislative Aide

2. Send a brief email – edit the final paragraph to represent your relationship to CHD

Dear xxx,

I’m writing to ask you to support our congenital heart disease appropriations request for the CDC. We urge Congress to provide, as authorized by the Congenital Heart Futures Reauthorization Act, full funding of $10 million in FY2020 to the Congenital Heart Failure program at the Center for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities to support surveillance and awareness activities to address the public health impact of congenital heart disease across the lifespan.

You can show your support, today by adding your name to the Dear Colleague Letter being circulated by Representatives Bilirakis and Schiff.  You may do so by contacting Shayne Woods (Shayne.Woods@mail.house.gov) in Bilirkais’ office.

Here is a link to the sample letter: http://conqueringchd.org/wp-content/uploads/2019/03/LHHS_CHD-Approps-Letter-FY2020.pdf

As a constituent and patient with congenital heart disease (parent of a child with CHD / sibling / friend) thank you, again, for your support!

Sincerely,

(your name)

 

CHD and the Taboo Q&A: Your Questions Answered

 

Today we revisit a couple of Q&A videos that were originally posted in October of 2017. The first video is an interview with Dr. Madsen, on alcohol and drugs. And the second video is an interview with Dr. Gurvitz on college, tattoos, and contraception. 

Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions, Staying in Care

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He is the Vice Chair of PCHA’s Medical Advisory Board.

 

 

 

 

Dr. Michelle Gurvitz –  College, Tattoos, Contraception, and Transition.

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital.

 

 

 

 

 

Thank you, Dr. Madsen, and Dr. Gurvitz, for your willingness to share your knowledge and experience!

 

Taking Back Some Control

For the month of March we will be discussing the various “taboo” subjects that come up in thinking about life with CHD. This week we will hear from Jennifer, a CHD warrior, who talks about how she took back some control by choosing some of her scars.

I was trying on dresses for my best friends rehearsal dinner. My mom, sister, and I had gone shopping together. I had come out of the fitting room to get my zipper zipped, without realizing my new tattoo was visible – the dress gaping open in back. My mom hadn’t seen it yet.

When my mom noticed the tattoo she wasn’t mad per se, but her disapproval was apparent. I was, however, 30 years old and had the right to make decisions about my own body.  And of course, this wasn’t the first time we found ourselves in this situation.

Growing up my parents were not big fans of body piercings or tattoos. While my best friend, and pretty much every girl in my class, had her ears pierced basically since birth, my mom made me wait. In fairness, I only had to wait to get mine done until after my 1st communion in second grade, but at the time it seemed like FOREVER, since all my friends had it done already.

When I got to high school, I wanted a second hole in my lobes. I knew my mom would never let me, so I convinced my aunt to take me instead.

Senior year, like many teenagers, I decided I wanted to get something – ANYTHING – else pierced the day I turned 18. It was a rite of passage, after all. But I would be having surgery number 2 just a few months prior, and my mom didn’t think it would be a good idea. To be honest, this was the first time it even crossed my mind that there could be link between piercings and heart health. I thought my mom was just being over protective.

So being a stubborn teenager, I wasn’t going to take no for an answer. Days after surgery, on rounds, I asked the surgeon if I could get my cartilage pierced. I felt vindicated when he gave me a very cautious green-light. So the day I turned 18, I walked myself to the Claire’s near school and put another stud in my ear!  And my mom took it like many parents do, looking on a little unhappy, a little disappointed, but accepting that as I grow up, somethings are out of her hands.

Over the years, I got a second cartilage piercing and pierced my nose. Twice. No, I didn’t have two nose piercings at once, but I was so afraid of my parents seeing it the first time around, I took it out, only to do it all over again a few months later!

Once I’d had enough piercings, I moved onto tattoos.

A couple years after graduating college, my friends and I decided to get tattoos together.  I got a tiny heart on my left foot, with a tiny crooked halo and a three-feathered wing off one side. I got it to remind me of my grandfather, to remind myself he was always with me.

At the end of 2011, I set out to do 30 before 30 –  a list of 30 things to do before I turned 30. The list included tasks like “do an anonymous good deed” or “go for a hike at sunrise”. I also included “get tattoo #2” (I did at least think ahead to pre-medicate). I wanted something that symbolized my hope for my life.  And since I love words, I went with a quote. It reads, “Go confidently in the direction of your dreams. Live the life you’ve imagined.” 

I had spent a good portion of my life being afraid to live it, so while reaching that milestone, 30 years old, I wanted to celebrate, to push myself out of my comfort zone, with a reminder that I had the strength to make my life what I wanted it to be.  That’s what the whole list was about anyway, and the tattoo would be permanent  proof of the accomplishment.

So as my mom zipped my dress and I assessed myself in the mirror, she asked me, “Why do you want to do that to your body anyway?”

I said, “I have so many scars already, might as well have a few I choose.”  And I gave her reflection in the mirror a goofy grin.

My tattoos and piercings have meant different things to me as I’ve aged. First, it was the rush of excitement in the rebellion, in the wildness of it.  It felt like self expression, like coming of age, and, most importantly, it feels like taking control of my body.  And I can’t wait to add more!

*NOTE – Be sure to check in with your cardiac care team prior to piercings or tattoos. While you may or may not have restrictions regarding these, your team may recommend certain precautions like pre-medication. 

 

  Jennifer Weiner was diagnosed with Truncus Arteriosus after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA, received an ICD, and will be having her 3rd open heart surgery later this month. Now 37, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, as the ACHD Lead and on the Illinois Chapter Board. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.