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Welcome! Introduce yourself!

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Arlene Britt02-23-2017 11:20

  • 1.  Welcome! Introduce yourself!

    Posted 02-23-2017 11:14
    Hi everyone!

    We are just now starting to build our amazing online community. Welcome aboard this exciting new project. Please take the time to introduce yourself. I'll start!

    I am Andrea Baer, Director of Patient Advocacy here at Mended Hearts and Mended Little Hearts. I also have a son who was born with a congenital heart defect and have been a part of this organization since 2009. I'm also your community manager here at Connections in a Heartbeat! You can reach out to me anytime with questions or help. 

    Looking forward to connecting and sparking some great conversations. 

    Andrea

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 2.  RE: Welcome! Introduce yourself!

    Posted 02-23-2017 11:20





  • 3.  RE: Welcome! Introduce yourself!

    Posted 02-23-2017 12:00
    Hi Arlene!

    Glad you could join us. What a great way to give back with your degree and using it to fulfill your passions.

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 4.  RE: Welcome! Introduce yourself!

    Posted 06-26-2018 10:21
    Hello everyone, I'm new to Mended Hearts. Last year in March of 2017, I had unexpected open heart bypass surgery. It's been a long struggle for me, not only am I facing  new life changes, I'm also learning how to control my blood sugar being a type 2 Diabetic. It all started having surgery on my left shoulder on Friday March 24 2017, I was recovering over the weekend, things seem to go well until March 27th on my youngest daughter's birthday I wasn't feeling quiet well. We celebrated her birthday with dinner, which I had no appetite to eat and everyone was asking if I was feeling ok. After dinner, we went home, and I fell asleep on the couch, waking up around 1:00 a.m. to a strange pain in my chest like I couldn't breathe, my youngest daughter was scared and called the ambulance.  I was admitted to St Anthony's hospital emergency. It wasn't until 7:00 a.m they took me into another room and I was met by a cardiologist. Did some testing and he didn't like the way it looked, so we did a catheral scan  which they put some type of dye in my system to see how my heart was functioning. When I was starting to wake up from the procedure there I found my daughters and best friend walking in crying with the doctor behind them. He said I had a big blood clot sitting at the bottom of my heart and 5 arteries were blocked. I was in shocked, pretty much numb. Later that night they transfer me over to Baycare hospital because St Anthony's didn't have a operation room for cardiac patients. I must say the nurses and doctor were very wonderful. The doctor came in the next day and explained my surgery. To be honest I didn't think I was going to make it, and in seconds I found myself writing letters to my children. It was hard for my mom, knowing she couldn't be here with me, but I had one uncle and aunt who flew to Florida from Palm Springs to be by my side. While I was waiting for surgery, I texted my close cousin from back home and told her only because she been through heart surgery not once but twice. She told me what to expect. At that time, she also was in the hospital too.  She had a bad kidney infection. After surgery, I was released from the hospital within a week and by the time I got home and settled in, I got a call from my cousins back home to tell me my cousin was not going to make it, kidney infection went to sepsis and  her organs were failing. Two days after that news, my family called to tell me she passed away, she was only 36 years old and fighting Lupus. I was devastated, and my aunt had to try to calm me down because I wasn't suppose to be upset in any way recovering from surgery. It was so hard. I wasn't able to travel either for the funeral. My recovery has been long and depressing. And here I'am today hoping to move forward in a positive way, and most of all to be strong for my children and grandchildren. Thank you all for listening.

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    Maria Elliott
    License Ins Rep
    Allstate
    St. Petersburg FL
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  • 5.  RE: Welcome! Introduce yourself!

    Posted 06-27-2018 15:06
    I read your story with interest and know your story will be valuable to other survivors.  As a survivor, I am a Mended Hearts Visitor and would recommend it to  you as a  way to  give back to those who are experiencing what you have experienced.

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    Wm George Hess
    Woodstock GA
    (404) 452-8464
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  • 6.  RE: Welcome! Introduce yourself!

    Posted yesterday
    You are a real trooper!

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    KAT
    Columbus, Ohio
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  • 7.  RE: Welcome! Introduce yourself!

    Posted 02-28-2017 08:15
    Good morning, all! 

    My name is Nicole, and I'm in Arlington, VA. I'm a medical writer/editor (trained as a pharmacist). I hit my 6-month post-op recovery date on 2/26, just a couple of days ago, after OHS to replace a congenital bicuspid aortic valve (I opted for a St Jude tissue valve) and to assess a growing aneurysm in the ascending aorta. Surgery at Inova Heart and Vascular went well, and recovery isn't going too badly either, but I'm looking at (perhaps) another surgery for the aneurysm in the future. I'm excited to be part of this new community! 

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    Nicole Van Hoey
    Arlington VA
    nicolemarie188@gmail.com
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  • 8.  RE: Welcome! Introduce yourself!

    Posted 03-03-2017 12:16
      |   view attached
    Hello! My name is Geri. I am a mom of an 8 month old named Ryner,  with hypoplastic left heart syndrome. He has had two open heart surgeries, the norwood procedure and a bidirectional bilateral Glenn procedure. We found out about his condition when I was 20 weeks. After he was born, he was sent to children's hospital. At two days old he had his first OHS. On December 22nd, he had his second OHS. He was not eating well by mouth after his Glenn so they sent him to the children's institute for a feeding program. He was there a few weeks but was not making any progress. They made the decision to send him home until his g tube surgery. He has been home with us about a month now. He has no ng tube, (he pulled it out) and it eating above his goal intake! His cardiologists gave us the ok to cancel the g tube surgery! Now he is learning, grow, and thriving everyday! My goal as a heart mom is to spread awareness about CHD and to provide support for others who are going through the obstacles and struggles that we went through! 

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    Geri Hayes
    Monongahela PA
    (412) 339-9177
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  • 9.  RE: Welcome! Introduce yourself!

    Posted 03-03-2017 16:18
      |   view attached
    Hello. I'm Elaine. My son Zack has LQTS2 and will be 20 this May. He also has Pierre Robin Sequence which means he had a (repaired) cleft palate,etc. He's had many surgeries at Strong Hosp in Rochester and several at Boston Children's Hosp. I also have a nearly 18 year old daughter. Zack has struggled to cope with his diagnosis. It's really hard on him sometimes. He's a tough guy and really does well though given all he's been through. 

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    Elaine Stickles
    Rochester NY
    (585) 723-9603
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  • 10.  RE: Welcome! Introduce yourself!

    Posted 03-07-2017 13:48
    Your son and my daughter would get a long GREAT! She was stubborn with her bottle feedings and just wanted food! She's now our snacker, all day long and full meals, since her pacemaker surgery in July she's been an eating machine. Shocking with only 4 teeth, she's 8 months post op and has been consistently putting weight on. Hallelujah! She and my 4 year old son, Cooper have Congenital Complete Atrioventricular Block. Cooper is unpaced and tolerating the lower heart rate well. Paisley did not and she was having some premature beats coming through, along with declining heart rate, failure to thrive since she was not gaining weight, she had her pacemaker put in July 29, 2016. 2 weeks post op she was full blown crawling all over the place! It was wonderful! So happy to see another CHD kiddo loving to eat now they feel so much better! He's adorable! 

    -Lydia 

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    Lydia Howard
    Clovis CA
    (559) 917-2843
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  • 11.  RE: Welcome! Introduce yourself!

    Posted 01-31-2020 19:49
    Hey Geri, my name is Zach, I'm 28 years old and I also had OHS at 2 days old, your story moved me and I wanted to thank you for sharing it. I joined this group as part of a therapy exercise to address some of the lingering effects of the surgery that I wasn't aware of until I went to therapy, there might be ways in the future that the trauma from surgery at such a young age could effect Ryner and I only feel the need to mention it because I wish I had worked through it when I was younger and it hadn't been such a mystery to me when I was a teenager and young adult, I suffered with depression, anxiety, and abandonment issues for so many years before I got into therapy and was able to connect the dots back to my surgery and I thought I would just share that with you incase you see any of that in the future. I'm so happy that Ryner is still here with us and I wish you and your family all the best. Thank you again for sharing this!

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    Zach Bryson
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  • 12.  RE: Welcome! Introduce yourself!

    Posted 03-09-2017 09:47
    I became a heart mom at 16 weeks (November 11, 2103) with my son.  I never realized how prevelant CHD was until my son was 4 months old.  I live north of Baltimore, Maryland.  I currently belong to the Baltimore Group of Mended Little Hearts.  
    My son was born with multiple CHDs.  Due to the complexity of his CHDs, we needed to deliver at a "big" name hospital.  My husband and I did a lot of research and chose the hospital we did because we felt "comfortable" with many of the cardiologists, the surgeon, the facility itself, and the locality.  We have a "heart" healthy daughter who is 4 years older than our son so staying close to our family and friends was our main priority.  
    Our son was born at 40 weeks and 5 days.  I was able to hold him briefly after birth before the took him to the NICU and get him all "hooked up" and do an echo.  Based on the echo, our surgeon felt it was best to do his initial repairs in a 2 step surgery (dextrocardia, transposition of the great arteries, ASD, VSD, and coarctation of the aorta).  He had his first surgery to repair his coarctation of the aorta at 3 days old.  The surgeon did a thoracotomy to repair not only his actual aorta but widen his arch using a corematrix patch (name of the patch could be incorrect).  After his repair, they took him off the medicine which allows his PDA to stay open.  They hoped his PDA would not close during that time.  Unfortunately it did so they went in and did a "balloon" of his ASD.  He already had a hole but they made it bigger.  They believed his ASD would have closed on his own.  They also felt his VSD would close on its own.  At 10 days old he had his "big" OHS.  During the OHS, the completed the arterial switch and closed his VSD and ASD.  Since they were in there, they went ahead and closed them.  They also "patched" up a valve (I don't remember which one but I believe it was his bicuspid- I know I am bad :) ).  They did leave him open for 3 days.  My son was released from the PICU less than a week later and was discharged at 3 weeks old.  We could not believe it!  He had bumps in his recovery but managed to fight hard!  We were initially told to expect a 4-6 week hospital stay.
    Since being released he did have two heart catheterizations.  The first was to balloon his aorta where scar tissue was building up.  He was 4 months old.  After this procedure was when I really got involved with local heart moms and saw just how prevalent CHDs are!  I was already a member of MLH and MLH of Baltimore main page but not their chat page.  There I connected with more heart families.  At 14 months old, my son went in for another heart cath to balloon his aorta again.  This time they also placed a stent in his left pulmonary artery due to stenosis.  As they went to balloon the aorta, they noticed a bubble.  Needless to say the balloon did not take place and our next step was another surgery.  At 15 months, our son went in to repair his CoA repair.  This time the surgeon was able to do end-to-end repair.  He was able to do a thoracotomy entry through his first scar.  The surgery was a success.  My son will be 3 in May and at 2 we were told not to come back for a year.  He is huge!  No one believe he has heart disease until you look at his chest!  

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    Kimberly Bley
    Edgewood MD
    (301) 752-4241
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  • 13.  RE: Welcome! Introduce yourself!

    Posted 03-10-2017 08:29
    Hi Kim!

    Thanks for joining and sharing your story. You are pretty close to me. :) I'm a little East of Pittsburgh. So about 3 hours from Baltimore. I'm happy to hear your little guy is doing well. Let us know if you have any questions. 

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 14.  RE: Welcome! Introduce yourself!

    Posted 03-08-2018 10:25
    ​I joined Mended Hearts Chapter 18 in SW Louisiana about five years ago. After having two CABGs, an ablation and a stent was unfamiliar with MH. Saw a "Medical Moment" on local TV news. Called and the rest is history. Have really enjoyed being an Accredited Visitor. The real reason I Volunteer is our grandson. In 2012 he received a heart transplant after many months of medically induced coma/LVAD/transplant. He is now 21 years old and doing great.
    Thanks to all who do so much to keep hearts beating.
    Chip Burns

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    DeWitt Burns
    Lake Charles LA
    (337) 513-6926
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  • 15.  RE: Welcome! Introduce yourself!

    Posted 03-11-2017 07:48
    Hello everyone!

    I'm Renee from New Jersey.  My 14 year old daughter was born with Down Syndrome, she was diagnosed at birth.  The next day, a cardiologist was brought in because she was turning blue around her mouth and eyes when she would cry.  She was then diagnosed with Complete AtrialVentricular Septal Defect.  At 7 weeks old, she went into congestive heart failure, and underwent open heart surgery at 8 weeks old.  She had her surgery at NYU by Dr Stephen Colvin.  She suffered numerous complications after surgery, and spent 32 days in PICU. Some of her complications included a stroke, seizures, and an infection.  Drs thought her heart was infected, which she would have required a transplant, but she would not have been eligible because she had Down Syndrome.  Thankfully, it wasn't her heart that was infected, it was a UTI that was causing the infection.  She continues with annual cardiology visits, she continues with heart meds, but other than her scars, you wouldn't know this little warrior had such a rough beginning. She's stubborn, she's smart, she's sassy, she loves country music and singing, and she is all attitude! Looking forward to following along in everyone's journeys! 

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    Renee Napolitano
    New Jersey

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  • 16.  RE: Welcome! Introduce yourself!

    Posted 03-16-2017 02:17
    I AM A MAN 76 YEARS OLD WITH SEVERAL INTERESTING CONDITIONS.
    I HAVE 18 STENTS IN MY HEART REGION, A PACEMAKER. 3RD STAGE KIDNEY PROBLEMS, BLOCKAGE IN MY LEG, IT IS SLOWLY TURNING MY FOOT BLUE,, AN ANYURUSUM. EF OF 34, DIABETS.  SEVERAL TIAS, MANY HEART ATTACKS I IGNORE NOW AFTER SO MANY, AND ANGINA.
    I STILL FISH TRAVEL, EAT WHAT I WANT BUT IN MODERATION, NO ALCHOL OR CIGARITES ARE BOUGHT BY ME, BUT IF WE ARE TOGETHER,AND YOU HAVE THEM, I EXPECT YOU TO SHARE 1 OR 2.  THEY STILL TASTE GOOD.

    ATTITUDE IS EVERYTHING, WHEN DEALING WITH PROBLEMS.  A I FEEL SORRY FOR ME IS NO GOOD.  GO, DO, TRY, FEEL AND IF YOUR BODY SAYS NO, QUIT.  LIVE YOUR LIFE. YOU ONLY HAVE ONE.  BE REASONABLE THOUGH  NOTHING IN EXCESS.  NAP WHEN YOU FEEL LIKE IT AND TAKE YOUR MEDS AND NEVER LIE TO YOUR DOCTOR.

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    Buddy Isaacson
    Pasadena TX
    (713) 477-2796
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  • 17.  RE: Welcome! Introduce yourself!