heart defect

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Community Voices

Scared of being in a relationship cause of a heart condition

First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
#aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure

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Community Voices


Hello, i'm still alive. I think I failed my oral English exam or something like that. I got too nervous and couldn't say anything right. I could feel a frantic heartbeat, cold in shaking hands and a lump in my throat. I almost died. D*** it! I don’t know whether I am glad that I am alive or sad because I have not died. 😫😫😫

- #idkwhattodo 😩
- #DontWorry, idn what to do too. ☺️
Thank you #HeartDefect . 🙃
#ifeellikemylifeisover every time I fail exam. 😅
#Headache, you are doing great 🤹‍♂️

For some reason my whole group felt that they were going to be executed...

I hope you are having a good time. That makes me happy for some reason. 🤔

Community Voices
Community Voices

Pace maker friends I have a question about tattoos

I’ve been wanting a tattoo for awhile now and ai just brought it up to my Mom, and she said I really shouldn’t because I have a implanted device and I can get a infection in my heart. After doing some research I found that it is recommended to take the antibiotics you take when you go too the dentist but she thinks it wont be good enough. Any thoughts? Or do you have tattoos and a pacemaker or implant? #Pacemaker #heart #HeartDefect #CongenitalHeartDefectDisease #Doctors

1 person is talking about this
Community Voices
Community Voices

Somewhere #CHD #HeartDefect

A family is waiting to hear
Is something wrong with their baby?
The answers aren't quite clear.
This family has entered an unwanted world
And they just don't know what to expect
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped it wasn't true
And thought this cannot be
I too know, just how this feels
For one day...this was me.

A man and a woman embrace
Their baby is in surgery
They long to see her face
They haven't got to hold her yet
Without a cord or line
They pace the room awaiting news
And hope she'll be just fine.
Prayers fill this busy waiting room
And mom and dad are scared
The tiniest hearts are repaired.

A child's growing fast
Smiling, laughing, thriving
His mom thinks...can this last?
It's almost easy to forget
That anything is wrong
Her child seems so strong.
Somewhere...someplace... today
A little boy fights...just to live
A father holds his tiny hand
His love...all he can give
The doctor's are all baffled
They fear that he might die
A family says goodbye.

Somewhere...someplace...each year
Numerous families will see...
What it means when something's wrong
They'll face a CHD.
Today...for just a moment
Make time to tell someone you know
"I've been changed by a heart defect".

~Stephanie Husted

2 people are talking about this
Community Voices

My outpatient program had a party today, there were a lot of people different part of NJ came together to celebrate mental health. The party was very loud with music, then my heart starts to beat faster than normal. I walked out of the room and a nurse helped by taking vital.

Jill Powell

Child Loss, Birthdays and Finding Healing

Thirteen years ago today, a beautiful baby girl named Lexi was born. Ten months later, she was gone. Lexi I doubt many folks sit around thinking about child loss while drinking their coffee. They may think about it if they know someone directly affected by such a tragedy. But unless you face it, you will never know. We found out Lexi was sick one week after her birth. It was a miracle that she had lived without support for that long. As a new mother I was concerned about a few things, but chalked it up to being an over-dramatic new mom. Lexi didn’t want to drink her milk, she slept excessively, seemed to lack energy, and when she was awake she cried, and cried, and cried. The night we took her back to the maternity ward of the hospital, we expected them to change her formula; perhaps she had some sort of formula allergy. When the nurse took her out of the car carrier, the first words out of her mouth were, “her lips are blue.” I was perplexed. Her lips are blue?  They were not blue at home. What does that even mean? I was young; this was my first child…I had never in my life thought about the things that can happen when a child is forming in the womb. I had a healthy, easy pregnancy. The nurse took us both down to the ER. Lexi was crying uncontrollably. Something was wrong. The nurse took her from me, and I remember believing her when she said, “she will be fine, we just need to get her checked out.” The next few hours are a blur. I remember having to leave the room because they were trying to get an IV and couldn’t. She was screaming. I’ve never heard a baby scream with that much intensity. To this day my husband and I still have panic attacks if we hear a baby screaming, seemingly in pain. A pediatrician came out to speak to us and told us that something was very wrong with our baby. “We think it is her heart. Her oxygen level is only 69.” I vaguely remember seeing that number while they were trying to get an IV, and realizing later why so many doctors and nurses were urgently working on her. They planned to do an echocardiogram on Lexi, but someone needed to be called in to read the results. There happened to be a pediatric cardiologist from Duke University Hospital on call that night. I will always see Dr. Kay as an angel. If not for him, we would have lost Lexi at 1 week old. He will always hold a special place in my heart. Once he read the test results, he came out to talk with us. “She is very sick. Heart defects. We could not get an IV, so we had to place it in her bone. She will need to be airlifted. The medication she needs to keep her alive is being brought here now. She will need emergency open heart surgery. She may not make it through the night.” I was standing against a wall, holding my husband’s hand while he spoke all these words and more. I specifically remember thinking, “Thank God for this wall.” The helicopter could not get to us because of extremely foggy conditions, so we waited on a transport team from Duke to get to us.  They were bringing the medication she needed and taking her to Duke Hospital.  Lexi was intubated and in critical condition. When the transport team arrived, there was an urgency. She needed the medication to keep her arteries open until she could have the very complex heart surgery she needed. Very little time was wasted and soon she was ready to be transported.  One of the amazing paramedics came to talk to us. He realized she may not make it to the hospital and assured us that he would fight to keep her alive. He meant it. I could see the intensity on his face and the tears in his eyes. There was just something about Lexi; she made everyone cry. Allen and I did not try to follow the ambulance. We went back to his parents’ house and tried to gather our thoughts before leaving. I remember pulling into their driveway near daybreak and hearing birds chirping and singing happily. For some reason this made me angry. Everything about life that had ever mattered seemed minuscule. I felt like I was in a bubble, and I would feel that way for the next 10 months. The months following that night are so intense and complex that I’m not sure words would do them justice. Lexi survived her first open heart surgery amazingly well. She went home on several medications that kept her alive and helped her heart function better. We spent more time in the hospital shortly after coming home because of issues with formula and feeding. Lexi had a NG tube in her nose for the first few months. It was eventually replaced with a G-tube, making life much easier for her and us. The child never slept. Thinking back, it’s almost as if she knew her life was short and wanted to soak up every minute she could. We could not have survived the months at home or in the hospital without the help of our parents and friends. They sacrificed right along with us to help as much as possible, so we could rest, eat, and just live. I am especially grateful to Ronald McDonald House.  What a blessing they were to us while Lexi was in the PICU. What sustained us the most was our faith and the prayers of many. I don’t know if I will ever feel as close to God as I did during those 10 months.  I felt that God never left my side, and sustained me after she was gone. Despite how hard we fought, Lexi could not fight any longer. She survived so many surgeries, procedures, and tests, but her body was tired. During her last open heart surgery in January 2004, she went into cardiac arrest. The doctors quickly brought her back and continued their repair on her heart, but it was too much for her little body. During the next couple of weeks, her body slowly began to fail. Her kidneys, liver, and lungs were not functioning properly. At first there was mention of a heart transplant, but her body could not sustain one. The morning of Feburary 4, 2004, my husband and I sat at a conference table with several doctors who we loved and respected. With sincere sadness they informed us that there was nothing more they could do to help Lexi. Her body was shutting down more every single day. The day before, a CAT scan was done to check for brain activity; her brain was very much active. I think that was the hardest part — having to make a decision about stopping life support on my child when she still had brain activity. However, I was resolute. They told us to take as much time as necessary to decide, but if she needed to go, I wanted her to go to heaven that day. I was completely broken, but I felt strong in my faith about what was waiting for her. No more suffering, no more pain, no more needle sticks, no more tubes, no more medicine. No more, Lexi. I held her in my arms until her heart stopped beating. I watched it on the monitor. I talked to her, sang to her and told her I would see her again one day. The moment she left this earth to go to another, I felt Jesus lift her out my arms. I have never felt such peace. Doctors, nurses, and therapists stood around the room with my husband and I, crying. There was something amazingly beautiful about this child’s life. This particular moment with Lexi is one that still strikes me like lightening out of nowhere. I can be having a conversation with someone and suddenly this moment will pop into my mind and I almost crumble.  It comes out of nowhere. This much time has passed and I still have powerful flashbacks that come on suddenly. Grief does change over time, but it is always there. At first it is totally life-altering. The grief is so heavy that you can barely lift your head. Over time it becomes like a burn. Always there, but with varying intensity. Eventually it scars. The scar is always present. You can see it, you can feel it with your hand, but it doesn’t hurt anymore unless you press really hard. Then it’s more like a numbness. I’m at the numb part now, 12 years after Lexi’s death.  I’m numb. Some may even say I’ve become a little callous in the years following her death. I think it is partly a defense mechanism. Losing a child affected me profoundly — physically, emotionally, and spiritually. Over the years it has made me seem almost hard, I believe. Please don’t think I mean to be so hard and callous. I am the same person I was before her, but I’m different too. I rarely cry. I have trouble remembering things from years prior to her birth. I think I isolate myself from people because I can’t relate to them, or I feel like they can’t relate to me. At first I surrounded myself with people to help me through. Now I choose to do things alone. I feel like people have forgotten, and that hurts. My husband and I truly became one during that time, and he is my safe place. Going to baby showers, passing by children’s clothes and toys, and birthday parties were heart wrenching for years. I view the world totally different than most because I take nothing for granted. I don’t worry about trivial things. More and more with each passing year without her, I know this world is not my home. Child loss is indescribable. It is painful. It is life-altering. I still keep a bottle of the lotion I used on her so I can smell her. We still have all of her clothes, toys, and belongings. I still cling to her memory. The loss never goes away, it only changes over time. Years later we finally decided to have another child, something we said we would never do. Drake has healed us. He is autistic, and I worry in ways I did not worry with Lexi. However, a part of her lives through him. I can see her in his smile. I can sometimes still smell her when I snuggle with him and get his sugar. Despite any worry or fears I have about the future, I believe without a doubt that God gave me Drake to help me heal, to help me move on and give me a new focus. For that, I am eternally thankful. Today, on Lexi’s 13th birthday, I wanted to share part of our journey — a journey that wasn’t public years ago. When we went through this trial, there was no social media to share our story. Many people whom I love dearly have no idea what went on those 10 months, and of course they wouldn’t dare ask. Just know this. If you know someone who has lost a child — even if it has been 12 years — they still want to talk about their baby. They still remember, and they want you to remember as well. Happy Birthday, Lexi Rae. Mama and Daddy love you, and we will see you soon. This post originally appeared on Walking With Drake.

Julia Fisher

Why I'm a Bandwagon Carolina Panthers Fan (for a Good Reason)

I’ll proudly admit, I’m a bandwagon Carolina Panthers fan. But I think we’d all agree I have good reason to be pulling for the Panthers and tight end Greg Olsen. He’s not just a Pro Bowl, Super Bowl-bound professional football player. He’s not just a nominee for the Walter Payton NFL Man of the Year Award. He’s not just a loving father. He’s not just the parent of a child born with a rare heart defect who has navigated the health care system treatment after treatment. He’s not just the founder of a nonprofit organization,  Receptions For Research (R4R): The Greg Olsen Foundation, that provides resources to enhance the lives of those affected by cancer and cardiovascular diseases or disorders. Greg Olsen is also someone who understands something as simple as holding up a scarf in support of another child and family facing medical crisis can make a world of a difference, if even for just a moment. That this show of support can bring a smile, warm the heart, and help make you feel like you are not alone, but on a team. That was us last October when we received this photograph of Greg Olsen holding up a #LukaTheLion scarf in support of our son who fought bravely his entire life. Born with a rare primary immunodeficiency disease thought to be unique to him, Luka endured 10 hospitalizations, a bone marrow transplant and several complications — one of which was life-ending. In October, we didn’t know where Luka’s story was taking us, as his medical condition continued to deteriorate despite a “full court press” of treatments, dedication and love from his doctors and nurses at UNC NC Children’s Hospital. It all feels like a lifetime ago. It was. I’ll admit, in October I didn’t know who Greg Olsen was. I didn’t know the Panthers were undefeated at that point in the season. All I knew is my son was — yet again — in the hospital. But this time Luka wasn’t able to be himself due to the HHV6 virus and significant auto-inflammatory complications including encephalitis (swelling of the brain). As a result, Luka’s condition had gotten so concerning that the bubbly, sweet, smart and smiling boy we knew his entire life despite constant medical needs — just wasn’t accessible. For two months, it made each second, minute, hour and day a challenge to say the least. As Luka’s primary caregiver and someone who was with him every single day and night, my goal was to give Luka all the love, support and encouragement he needed so much, and with a smile. I was his cheerleader, his coach, his teammate. I’ll be honest, it wasn’t easy. Both myself and my husband needed support from the sidelines, too. That’s why this photo of Greg Olsen, supporting our #LukaTheLion — sustained us. Taped up to our hospital room bathroom door, this photo reminded me someone else has been and is a parent, holding vigil at their child’s bedside in a hospital room, who has probably had those same thoughts of feeling lonely and isolated — not knowing where the story would go at any moment. And just by holding up a scarf and taking a photo of support — it can really make you not feel like you are not alone and that there’s a fan club cheering you on, too. You feel part of a team. That’s why I’m not ashamed to be the loudest cheerleader on the bandwagon of the Carolina Panthers and Greg Olsen this football season, during the Super Bowl 50, and always. Greg Olsen supported us when we needed to know that someone was in our corner, on our team cheering on our #LukaTheLion. Now, in Luka’s honor, we’re here to support Greg Olsen just the same for his foundation, Receptions For Research, and for his team in Sunday’s big game. Not just for my family, but for all of the patients and families he’s helped along the way — either through his foundation or just holding up a scarf — Greg Olsen is already a winner in our hearts. We’re proud to be on his team. In loving memory of our son, Luka Fisher, a brave and resilient little lion who in just 21 months taught us to always remember to roar. We’re proud to start a movement in his name, the #LukaTheLion Foundation, to honor Luka’s spirit by raising awareness of rare pediatric diseases and supporting patients and their families so they never feel alone. Follow us at  www.lukathelionfoundation.org , on Twitter, and Facebook.