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I Am the Only Person I Know with CHD

Aug 15

Posted by: ACHA
8/15/2014 12:52 PM  RssIcon

By Jorie Malone

I am the only person I know with Ebstein’s anomaly. In fact, I am the only person I know with congenital heart disease. For the longest time, this didn’t bother me. Growing up, I was fortunate to run around like any other kid. Having CHD was something I seldom thought about, and the reminder usually came every couple years when I had a cardiologist appointment.

Today, my circumstances have changed and I am very interested in making connections with people who have CHD. For that reason, I am excited to attend ACHA’s National Conference in Chicago for the first time, and it couldn’t have come to a better place at a more perfect time!

Seven months ago, I had my second open heart surgery (my first surgery was at five months). For five years, I knew that surgery was inevitable. However, when the time came, I was still surprised. As a 24-year-old living a fast-paced life as an inner city high school teacher in Chicago, the timing for heart surgery was not ideal and somewhat difficult to accept.

On December 30, 2013, my amazing surgeon and his skilled team performed a successful tricuspid valve re-repair. For the next five days, I was under the supervision of the outstanding surgical team, my brilliant ACHD cardiologist, and the incredibly caring and competent nurses.

Immediate post-op life was a bit more intense than I expected. When I first woke up after surgery, imagining a full recovery was almost impossible. However, I took each day as it came and tried to stay positive at all times. The issues of pain, insomnia, terrible hair days, and being overfed laxatives made for a unique start to 2014. On a positive note, the buzz I had on this New Year’s Eve was much more powerful than champagne has brought me the past few years. Despite it all, I could not have asked for a better experience with heart surgery at my ACHD clinic.

Upon returning home to Chicago, recovery continued to be a roller coaster. I developed atrial flutter, which sent me back to the hospital for a couple days and left me a tad discouraged. After that, there were minor issues, but it was mainly smooth sailing. I was able to go back to full-time teaching responsibilities after eight weeks. Now, I feel better than ever and I am taking baby steps to becoming a runner by training for my first 5k this fall.

Throughout it all, my family and friends were absolutely amazing. They showed their support and love through funny cards, visits, meals, gifts, and calls. My medical teams were also helpful in making me feel comfortable and informed throughout recovery. I think the only possible thing that could have made my experience better would be to have been part of a community of people who have had similar experiences.

I have chosen to become more involved with ACHA through following the website, attending the conference, and writing for the blog because I am missing a connection with people who understand. After heart surgery, I have a new perspective on life. Getting a parking ticket or being stuck in traffic is no big deal any longer. Climbing multiple flights of stairs without stopping or running for almost 40 minutes feels as triumphant as finishing an Ironman to me! While my family and friends love celebrating these victories with me, there will always be a disconnect.

At the conference, I hope to meet people who actually know what Ebstein’s anomaly means when I mention it for the first time. I am interested in speaking to young professionals who have also had to put parts of their twenties on hold to have open heart surgery. I would love to get to know women who have been able to have normal pregnancies and start beautiful families. For the reasons mentioned and many more, I am excited to attend the conference and become more informed, get inspired by stories, and for the first time, meet people who I can relate to in this special way.

Jorie Malone is a 25-year-old Chicagoan, who is a dedicated and energetic teacher, family member, friend, traveler, and CHD thriver. She was born with Ebstein’s anomaly and has had two open heart surgeries, at ages 5 months and 24. When she is not busy grading papers or visiting Chicago’s foodie spots, she is enjoying life with balance and positivity, and sometimes blogging about it here.

Copyright ©2014

Tags: Jorie Malone
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Location: Blogs Parent Separator ACHA Blog

15 comment(s) so far...


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Re: I Am the Only Person I Know with CHD

Hi my name is Amber. I have CHD and I also don't anyone that has CHD. I am 31 and have two beautiful boys. My pregnancies were normal. I am facing having my third open heart surgery in the near future. I have had pulmonary valve replaced in 2001. It would be nice to talk to someone that has CHD and have someone to talk to that understands what it's like to go thru that.

By Amber Oder on   8/15/2014 3:45 PM
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Re: I Am the Only Person I Know with CHD

I also have Ebstein's Anomaly. I only know one other person who also has Ebstein's and we met for the first time last year at the HeartBeat 5000 in Minneapolis. I also had problems with atrial flutter before my second heart surgery. Enjoy the conference and I am sure you will meet many people who understand what it is like to have a CHD.

By Sarah Duzynski on   8/15/2014 5:05 PM
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Re: I Am the Only Person I Know with CHD

Amber . Feel free to Contact me on fb if you feel like talking. Im 44.. have chd ....3 open heart surgeries . Including pulmonary and aortic replacement and a pacemaker. I also had a normal pregnancy.

By Katherine Ferris Nicholson on   8/15/2014 5:28 PM
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Re: I Am the Only Person I Know with CHD

Hi Jorie!! You are not alone!! There are a lot out there that have CHD. Not as many that have EA. However, there are some amazing support groups out there. Many of us connect through Facebook, of all things. My son is 14 months and has EA. He has had 5 OHS. Do a search on Ebstein's Anomaly on Facebook and you will find the community. We are here to let you know that you are not alone!

By Jessica on   8/15/2014 9:03 PM
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Re: I Am the Only Person I Know with CHD

Hi my name is Brian, I am like you where I only knew myself as someone with CHD. I mean I know other people have it but I never met anyone personally with it like me. I did stuff like everyone else but having CHD made me feel like I was the odd man out. It's always nice to meet others with CHD.

By Brian on   8/15/2014 10:37 PM
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Re: I Am the Only Person I Know with CHD

Hi, My name is Jenny. I live in Green Bay, WI and I also have ebsteins anomaly. I am 47 and had my first OHS 8 weeks ago. Before they discovered my CHD in my late 20's, I had already had 2 normal pregnancies and have 2 healthy daughters! After surgery I developed heart block and was given a pacemaker 8 days post-op. Four days after I was home from the hospital, the pacemaker service called to tell me I was in atrial flutter which put me back in the hospital for a couple of nights. At 6 weeks and 4 days after surgery I was back to work 1/2 days at my elementary school where I am the secretary. I also do not know anyone personally that has CHD. I would like to go to a conference at some point.

By Jenny on   8/16/2014 10:08 AM
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Re: I Am the Only Person I Know with CHD

Hi my name is Teresa and I have epsteins. I never met anyone else who as it epsteins or any type of CHD. I had two heart surgeries and a pacemaker. I always felt that I was the only one in the world dealing with my situation.

By Teresa Mogdics on   8/16/2014 10:29 AM
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Re: I Am the Only Person I Know with CHD

Hi my name is Kami I also have a chd. Iam 46. I was born with transposition of the great arteries. I would be so thrilled and greatful to be able to meet and share experiences with all of the chd family!

By Kami Strenge on   8/16/2014 1:07 PM
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Re: I Am the Only Person I Know with CHD

I am the only person I know as well with OHD!
It's a lonely club, of which I don't wish more members.

I'm 39, had my first surgery at 2 and my last one at 35!

Hope to run into you in Chicago sometime.

By Yvette on   8/19/2014 12:52 PM
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Re: I Am the Only Person I Know with CHD

Thank you so much for the wonderful comments and introductions! It's great to hear all your stories and how you've all been able to live such full lives. It will be fun for all of us to connect with fellow CHD-ers in the future!

By Jorie Malone on   8/22/2014 7:24 PM
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Re: I Am the Only Person I Know with CHD

Hello Jenny:

I have Ebsteins as well! I am the only one I know with Ebsteins, even the cardiologist either have never seen or rarely see anyone with Ebsteins. I was born severely cyanotic but no surgeries in 1964. I stayed in the hospital for quite a while and then sent home on Digoxin and my parent were told I probably would not make it.
Trying to find a surgeon to fix me was quite a challenge but I did find them. I am now 50, I have had four heart surgeries, one in 1993, two in 2000 and one in 2011. I have no children because my pediatric cardiologist said, "Don't, you probably will not live through it." I have a pacer because I am in third degree block and several arrhythmia problems where I was shocked to convert my heart back to sinus rhythm. I had a CVA when I was 23, and a brain abscess removed when I was 27. The CVA and the brain abscess were caused by a blood clot and bacteria going through my huge ASD and up to my brain. I am truly blessed to be alive and I am forever grateful to God and all of my cardiologist and surgeons.
I was chosen by ACHA as an Ambassador trainee so I will be in Chiicago next week for ambassador training and the conference. I very much hope to meet you there.

By Cynthia Lasseter on   8/25/2014 10:15 PM
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Re: I Am the Only Person I Know with CHD

Hi Jorie,

Those of us with Ebsteins are a special breed. You are fortunated to be living in these times. I was diagnosed at the age of 25 in 1987 and I was the 8th diaganosed patient with Ebsteins at the Mayo Clinic. Things have changed a lot since then! My first surgery was in 1987 and I did not have surgery again until 2008. I am 52 and I am thriving, with a pacemaker and lots of interventions. I would be happy to connect with you as I work in Milwaukee, Chicago and Rockford. I will not be at the conference however...which I'm very bummed about. because I've been to this conference before...and it is GREAT!

By Jill on   8/26/2014 10:35 AM
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Re: I Am the Only Person I Know with CHD

Hi my name is Josephine and I was born with CHD as well. I am 17yrs. I was born with Long qt syndrome but I recently found out when I was 15yrs, I haven't had any surgeries like most of you have had but it is coming up for decision because my medication (Nadolol) doesn't seem like it is keeping it under control, my Pediatric Cardiologist has set me up with a lqts expert and as of right now he want to place a loop recorder just beneath my skin and I will have it there for about 2yrs to try and catch these irregular heartbeats to see what my next step is.

By Josephine Perea on   9/8/2014 6:15 AM
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Re: I Am the Only Person I Know with CHD

Hi Jorie,
My name is Doug (27y/o), and I also live with Ebsteins. I have had 2 open heart operations which included a (1) valvuloplasty at 13 years of age, and (2) a valve replacement with a porcine valve at the age of 17. The second operation caused me to have complete (3rd degree) heart block, and now I am pacemaker dependent. I recently underwent a cardiac workup including an ablation for atrial flutter as well as diagnostics. I'm looking at another valve replacement in the near future. I work as a pediatric sonographer in Tampa FL, scanning children and adults with CHD. I see both sides of the CHD world! Unfortunately I did not make it to the conference this year. My point of writing a response is to reach out to you considering we have the same diagnosis. I have plenty of insight from a clinical perspective as well as a patient perspective. Even though the degree of Ebsteins can vary by how significant it is, we are still a rare find! Please feel free to get in touch with me. I always look forward to talking with those who have similar defects and learning from their experiences as well.

By DSexton1023 on   9/15/2014 3:02 PM
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Re: I Am the Only Person I Know with CHD

Hi, my name is Jennifer I'm 34, and I also have ebsteins. I had my 1st ohs when I was 15 to replace my valve and patch my ASD, I recently had my 2nd ohs 3 weeks ago, they replaced my old pig valve and did a maze procedure at the Cleveland Clinic, at this time I seem to be doing ok!! Glad to know some else that as my condition...would have loved to go to the conference but was having surgery instead!!

By Jennifer on   9/15/2014 3:37 PM

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