SCAD not SCAB

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Time to take a road trip to Kansas City to learn about SCAD!

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While most people head to Kansas City, MO for barbecue my trip took on a different mission. I loaded up the car with my daughter Brenna as my co-pilot and set the GPS for St. Luke's Hospital. Our mission: To learn as much about SCAD, Spontaneous Coronary Artery Dissection.

My daughter happened to be studying hearts in science and wanted to go along to see what caused my heart attack. I was a little hesitant at first because she's only 12. What if she hears words such as morbidity or mortality? Will it freak her out? Will she have more questions than when we set out? In the end, it ended up being a fantastic experience for both of us.  Not many 12-year-olds get to hear a public forum on SCAD conducted by two amazing Cardiologists.

The SCAD talk conducted by Dr. Jason Lindsey and Dr. Tracey Stevens at Muriel I. Kauffman Women's Heart Center in Kansas City, MO. The 90-minute discussion flew by! I ended up with pages and pages of notes and still wanted to hear more. At one point I looked over at Brenna, and she was taking notes. I was in shock. Here a 12 year old was taking notes on a subject where there's no test!   Although there are more questions than answers known about SCAD, it's so intriguing to see what might be the cause. 

 

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While I was at the talk, the American Heart Association put out a scientific statement on SCAD. This inspiring news and the massive step in the right direction. Many times when I tell people my story and tell them my heart attack cause was SCAD and not plaque they are confused. My goal is to educate everyone and let them know that it can happen to anyone.

Here are some of the key takeaways from the SCAD town hall: (These are from my notes taken from Dr. Lindsey and Dr. Stevens town hall

1. SCAD accounts for less than 0.5% of heart attacks, but it accounts for 25% of heart attacks for people under 50 years old.

2. 9:1 ratio women to men. Still not understood as to why

3. The person is healthy without risk factors

4. There can be a hormonal relationship, most common cause of pregnancy heart attacks.  Non-Pregnancy related SCAD is much more common. 

5. Genetic link??

5. Medical management, no approved drugs for SCAD. 

6. SCAD Symptoms: 45% Chest Pain, 24% Palpitations, 21% Shortness of Breath

7. Ask to have your doctor rule out Fibromuscular Dysplasia ( seen in around 60% of patients)

8. 57% postmenopausal,  rare in 65y/o and higher, 10% malignant arrhythmias, 5% Connective Tissue disorder, 12% Systemic Inflammatory disease

9. Exercise: STAY ACTIVE POST SCAD

10. Prognosis: Recurrent SCAD around 10%

11. 10-year mortality 1.1%

12.  Most dissections will heal in 1 month. Not placing a stent is a better treatment plan.  Avoid hormone replacement, Usual medicines Asprin and Beta Blockers. Cardiac rehab has been shown to decrease rates of recurrent SCAD.

Future Direction: Genetic Predisposition? Determine how to prevent the 1st event and recurrent events.  Ask for a CT coronary angiogram for follow up if needed and not a PCI.

THE NEED to have a prospective registry.

If you are a SCAD Survivor,  join the SCAD ALLIANCE at www.scadalliance.org #SCADheart

 

As Brenna and I drove home we discussed what we had learned. I was shocked at how she retained the information from the night before. We both agreed that more research needs to be done, still too many unanswered questions. 

In the end, it's up to us to get out there and not only educate ourselves but others! I'm just one SCAD survivor trying to make a difference!

 

 

 

 

 

 

Keeping my heart story going... CNN Health.com

My goal to help others continues this week with the sharing of my story on CNN health.com.  When I started my blog two years ago, never could I have imagined sharing my story at a national level! Blogging has helped me through my heart attack recovery. My hope in writing my blog is to help others who are going through the same thing. 

Attached you will find the article published on CNN Health.com.   This article discusses a new study published in the Journal of Circulation highlighting the difference between men and women's cardiac symptoms.

https://www.cnn.com/2018/02/19/health/heart-attack-symptoms-women-study/index.html

 

One of the first pictures taken post heart attack.

One of the first pictures taken post heart attack.

 

Together, we can all work to advocate and prevent others from having to experience this crazy journey of heart attack survivor.

 

 

When your week begins with an ambulance ride and a Nitro prescription...

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It began as a normal Monday and ended up with a call to 911, an ambulance ride to Mercy and hours in the ER to simply leave without answers. I started the week with the excitement of Go Red coming up on Friday and ended up truly understanding why February, Heart Month is so important.  As we sat and ate supper, I started to have severe pain in my left neck that radiated down my left arm. All I could think of is "not again!" I looked at Joe and told him what was going on, and we both decided to call 911. While we waited for the paramedics, I kept thinking about the odds that this could happen twice in two years? Is it stress? Heartburn? Gas? Ironically, almost two years since my last heart attack, Ryan the paramedic comes into my house and say "hey, we have to stop meeting like this." 

On a side note. You can take it from me. The fear of embarrassment subsides quickly when help arrives. Plus, it keeps the neighbors on their toes when the neighborhood is lit up like a 4th of July parade. What can I say, humor can be the best medicine.

They ran an EKG; Troponin levels were drawn, chest x-ray and a CT scan to rule out another dissection. All were normal thank GOD! But that's when it truly gets scary, what is it? Over and over I explained to the doctors and nurses that this is what happened the week before my last Dissection (S.C.A.D. Spontaneous Coronary Artery Dissection).  Two years ago, I went to the doctors, and they kept telling me I must have slept wrong on my neck and they tried to give me muscle relaxants. No cardiac workup was done. At that time I would have never dreamt that it was my heart. 

Monday night I was sent home from the ER and told that everything looks good and it must be a musculoskeletal pain. You have to be kidding me! Joe and I were beyond frustrated! We wanted answers and most of all a guarantee that it was going to be ok. I knew it was time to get ahold of my cardiologist.  

On the car ride home that night Joe and I kept saying over and over to each other that this is what  I had two years ago same exact pain.  Why won't the doctors listen? We were beyond frustrated and concerned. As I laid my head on my pillow that night all I kept praying  was "please God let me wake up tomorrow!" I called my cardiologist the next morning, and he had answers.

The problem, nobody knows what causes dissections and what you can do to prevent them.  So, Cardiologists are treating the symptoms with cardiac medicines indicated for other problems. Leading me to my new Nitro prescription. My doctor thinks that my neck pain on Monday night is due to a spasm in my coronary artery or a small dissection that is not large enough to cause EKG changes, cardiac enzyme changes or need cardiac interventions. With small dissections, your body has a natural way of healing them without the need for cardiac intervention. As my Cardiologist stated " we can go into the cath lab and look but you just end up chasing them." During this time,  your body sends out pain signals, i.e. my neck pain to let me know that something is going on.  Almost a week later and my neck still hurts, and I'm experiencing sporadic chest pain. With time, I hope this pain will go away.

So remember, February is HEART MONTH for this reason. Women's heart attack symptoms don't just slap you in the face and say "hey, she's having a heart attack!" Many times its very subtle changes in the way you feel that makes you question what's going on. Be your advocate. Question medical staff and ask for a second opinion. If you’re not comfortable with what you are  told... ASK more questions and demand more answers. No one knows you better than you!

Heart Attack Signs in Women

1.      Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.

2.      Pain or discomfort in one or both arms, the back, neck, jaw or stomach.

3.      Shortness of breath with or without chest discomfort.

4.      Other signs such as breaking out in a cold sweat, nausea or lightheadedness.

5.      As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particular shortness of breath, nausea/vomiting and back or jaw pain. 

(American Heart Association)

If you have any of these signs, call 9-1-1 and get to a hospital right away.