Meet Angie - CHD Survivor and Heart Transplant Recipient

Angie has an amazing story and I am honored to share it with you! She is a great inspiration and provides hope to families affected by CHD.

1. What type of CHDs were you born with?

I was born in 1975 with Tricuspid Atresia, Pulmonary Stenosis and d-Transposition of the Great Arteries.

2. When were they diagnosed?

Mine were diagnosed at my 6 week baby check. They realized then that I had a heart murmur and my mom had told the doctor that I was turning blue. I was to be sent to a Pediatric Cardiologist, but before my first appointment I ended up in the local hospital.

3. Were you ever on a feeding tube?

As far a I know I have never had to have a feeding tube

4. How did your family handle the shocking news that you were born with a CHD?

My family is so great! My mom is an amazing person for everything she has done and been through with me! When we were kids, I don't think my brothers and sister got the entire idea of what was going on except that I was going to the hospital and was sick. When we got older and there was more understanding, things got easier.

5. Does CHD run in your family?

No one in my family had a CHD. As my grandparents on my mom's side got older they suffered strokes and my father had a heart attack about 10+years ago.

6. Tell me about growing up and living with a CHD.

I tried to keep up with the kids when I was younger, but I couldn't. I wasn't allowed to play sports and do regular things that my brothers and sister were doing. I was a cheerleader in grade school but in high school I got cut because I couldn't do all the running and physical activity that the other girls were doing.

I was never self conscious about my scars until 1998 (23 yrs old) when they re-cut my scar. For some reason that bothered me.

I had to go to the doctor every 3-6 months depending on my condition at the time. I would have to remember to sit down and take a breather every now and then while the others continued to play. I had to watch my lips and fingers to make sure I wasn't blue, because that meant I was lacking oxygen and needed to rest. When I was having problems, I would come home from school and sleep away the rest of the day while the others where out playing. I couldn't be out in really hot or cold weather. I had to follow the TV advisories when it said people with heart conditions should be out. I couldn't go and ride the rides at the amusement parks.

7. How many procedures/surgeries have you had?

I have had numerous cardiac catheterizations! I could never list them all.

• In 1979, I had my first open heart surgery, Blalock-Hannon surgery
• In 1981, I had my Fontan Procedure, another open heart surgery. This was done at Yale by Hillel Laks
• In 1982, clogged Aorta. Surgery was done at UCLA Medical Center

8. What happened after 1982 that led you to needing a heart transplant?

After 1982, I continued going for check ups every 3-6 months with little problems.

In 1992, I became ill with Atrial Fib which caused me to be hospitalized and have yet another catheterization to get me out of flutter.

In 1998, I became so ill that I would wake up at night with flutter. They did a holter monitor that determined my heart was beating too slow at night and was causing my heart to get an adrenaline rush and shot my heart into abnormal rhythm. This caused me to get my first Pacemaker.

Within months after my pacemaker, I became ill with Atrial Fib often. I was going to the ER almost 2-3 times a week to be cardio-verted. This caused me to have a cardiac ablation. I had to have another one a few months later because of another scar that was acting up!

In 2000, I was having problems with my pacemaker and it had to be replaced.

In 2006, I began with an episode of Atrial Fib again. With this episode, I had a minor stroke. This caused my vision to be all out of whack and I could no longer work. None of the doctors could figure out exactly what was wrong with all of the different symptoms I was having. It was visual problems, balance problems, shakes, etc.

Finally, in Feb 2007, my Pediatric Cardiologist had compared enough of my echos over those few months and realized my heart was failing. I was told then that I needed a heart transplant.

In May 2007, I started to see a Transplant Cardiologist for work up, echos, ultrasounds, X-rays, etc. My ultrasound showed a nodule in my thyroid, so I had to go to ENT. There they decided I needed a biopsy of my para-thyroid. Biopsy was 09/04/07 and it came back clear on 09/12/07 and I was finally placed on the transplant list!

On August 12, 2009, I was admitted to Johns Hopkins where I would stay until I received my heart on September 28, 2009.

9. Why did you need a heart transplant?

I needed my transplant because I went into Congestive Heart Failure (CHF). My heart was so weak that no medications could be added to help it work any more. This was actually a great step because when I was young, with my anatomy, they didn't think I would be able to have a transplant. And when they took my heart out and saw it they said I shouldn't have lived past 19!

10. How long was recovery after the heart transplant?

I was up and walking the next day and out of the hospital within 8 days after surgery. I'm almost 4 months out, but they say it will take 6-12 months for me to be what is considered "normal". It all depends on the strength and will of the person that had the surgery. I'm just starting my cardiac rehab and on their scale I'm not far from where I need to be... I'm a 2.6 and they like you to be between a 3-6.

11. How has heart transplant changed your life?

I could tell right away the difference in my energy level. Before I was so tired & worn out. All I did was sleep. I didn't want to eat or see anyone! The last 8 weeks before my heart transplant I spent in the hospital growing weak and tired. After my surgery, I was ready to go! I was up walking the day after surgery and out of ICU within 2 days, doing 2-3 laps up the halls. I was out in 8 days. I was home for a month and felt great...until I got H1N1 & pneumonia and spent 9 days back in the hospital. I'm now back to where I was before I got sick and am feeling so much better. I have energy! I rarely nap during the day. My friends say I'm back to my "normal self", personality wise! I had not been me for about a year and a half.

12. Tell me more about your efforts in raising money and awareness for CHD.

My mom and I want to raise awareness for both CHD and Organ Donation. The Angie Neiderer-Staub Heart and Transplant Fund is going to be used to raise awareness for CHD. We want to raise money to help families that can't afford all the expenses and help them out with either hospital bills or meds or things that are urgent for their care. We also want them to know that there is hope out there with all the technology today. But, to do this, we need to promote Organ Donation because there are so many people that need organs and there are hardly any donors.

I consider myself a "double ribbon" - I'm a CHD & Transplant survivor (there is a ribbon that signifies each: Green for Transplant & Donor and Red & Blue for CHD). That's why our fund is the Heart & Transplant Fund. We want to try to make sure that heart patients can get the care they need to survive.

When I was young, I was one of the few with my specific condition, so I sometimes was a guinea pig with what they would try and hope worked. I'm currently writing a book to help promote CHD and Transplant. It's easy for people to hear the doctor and do what he says, but what is your life going to be like... that's what the book is about. Part of the book proceeds will go to the fund to help others with their bills!

13. Any advice for those affected by CHD?

If you don't have people behind you, it's going to be hard. It helped knowing that family was there everyday and that people back home were sending cards and e-mails and stopping at the Caringbridge site and leaving messages. If I didn't have all of that support and people "counting on me", I don't know if I could have done what I did for so long. It helps to know people are counting on you to FIGHT!!