SCAD Cafe #5: It's February! (Heart) your Heart!

Happy Heart Month everyone! Hope you are rockin’ the red to show support for women with heart disease. Even my boys wore their red shirts today. Just as a quick reminder for us all about the importance of this day and the weeks ahead:

• Heart disease is the leading cause of death of American women and men, killing more than one in three each year.

• Nearly 43 million women are currently living with or at risk for some form of cardiovascular disease.

• Women are four times more likely to die from heart disease than all cancers combined.

• Women are less likely to receive treatment according to cardiovascular disease prevention guidelines.

• Women are underrepresented in clinical trials.

In honor of the cardiologists who keep us healthy, let’s raise a mug to them today! For our topic, let's discuss how many of us have cardiologists with experience treating SCAD? (Mine told me after the fact that he had one SCAD patient who was awaiting heart transplant.) Are you the first SCAD case your doctor has seen? Or one of many?

Katherine

By ahsnjnr9
Reply 3762358
February 1, 2013 at 8:01 am
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I am my Dr's 2nd patient with SCAD. He's cared for me the best way he know how, but is at a loss regarding my daily residual angina pain. After struggling with noncompliant my referral coordinator and resistant insurance company, I am thrilled to be headed to Mayo clinic to see Dr Sharonne Hayes in 2 days!!! Very excited to say the least! Many thanks KAKleon for all your hard work in getting SCAD research going and all the supportive avenues we have to communicate with each other. You are truly awesome! Thank You!

By neverstopexploring
Reply 3762417
February 1, 2013 at 8:21 am
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First heart attack (one cardiologist). Second angiogram (2 other cardiologists) and stenting. Third angiogram (2 other cardiologists). None of them took the time to look for dissections as they were saving my life.

None of them took the time to say "this makes no sense" and re-review the angiograms to look for dissections. That says a lot. Its pervasive. These professionals don't seem to know that they don't know.

Mayo Clinic made the diagnosis.

Upon return, the first cardiologist explained that they are trained to look for horses in med school and I am a zebra. Then went on to justify his misdiagnosis explaining that even the Mayo clinic did not discuss SCAD during his recent board recertification training.

So, here is a goal for 2013: How about we push to have SCAD information added to the Cardiology Board exam training seminars? How do we do about doing that?

By Caroline-1
Reply 3762519
February 1, 2013 at 8:49 am
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Hi All,
My cardiologist is curently treating myself and two other ladies who had their SCADS over 12 months ago. At the time I thought he may not have enough experience but reading your answers sound like he has lots. This was one of my many questions I had for him and he was happy to answer. He also asked to be kept in the loop with any feedback I got from the Mayo Clinick research. Was glad to hear this as a person who is willing to learn is good to have on your side. The cardiologist who will carry out my angiogram on Tuesday has also treated a number of men and wemen who had a SCAD. In fact the day I had mine another man was diagnosed with it a few hours earlier by him.

I also think all doctors and nurses should be made aware of SCAD as when I was having mine, pain in left arm, jaw and accross my back, I asked could I be having a hearth attack and was told not to be so silly.

caroline

By betsbee
Reply 3762524
February 1, 2013 at 8:50 am
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I was sent to the Ottawa Heart Institute for my angiogram, where I know they see SCAD, but don't know how often. I am seeing my GP for follow up, and he has not seen this before.

I too would like to extend my thanks to Kathleen for kickstarting this platform and the FB group for SCAD. I would have been lost, dazed and confused (and probably depressed) without the advice and support of everyone. Sending you a really big hug!

By Chee
Reply 3762535
February 1, 2013 at 8:53 am
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Go Red!!! My boys are wearing red today too, and we have 2 red painted thumb nails for two Thumbs Up! My cardiologist in Maine has only seen one other SCAD years ago and she was 15 years older than I am. I am awaiting a response from Mayo Clinic for a second opinion (mailed back release forms after Christmas). My cardiologist is looking for professional guidance around treating me etc. so far it sounds like I am "prescribed" similar treatment to others on this site, in terms of meds and cardiac rehab. I did not have to have surgery.

By KAKLeon
Reply 3762975 · In reply to 3762535 by Chee
February 1, 2013 at 10:59 am
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It's amazing how it ranges from none or 1, to several. My gut still says once SCAD is properly diagnosed immediately by cardios and ERs, then we'll meet even more and more of our fellow patients.

Those whose doctors are partnering with you -- that is so great! And I agree, neverstop, about getting to the cardiologists, professional orgs, and med students. Nursing schools, EMTs, etc. There is much to be done! I don't know the answer yet, but will keep asking. Anyone have connections in those fields?

I appreciate your kind thoughts! I'm just so grateful that WomenHeart was here for me when I needed support. And being obsessive compulsive about SCAD turned out to be a good thing too -- ha!

Hope you're all staying warm this blustery day. I'm trying a peppermint cocoa mix at this very minute. It's delish!
K

By kcscadx2
Reply 3763514
February 1, 2013 at 1:27 pm
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My doctor has seen one years and years previous to me. The first time he saw me he thought my first SCAD HA was a fluke, caused by a small blockage in the distal artery, because he just couldn't get a good view of it because of the location. With no history of heart disease etc., he thought I would be just fine. When I arrived in the ER two years later with another SCAD in a different artery of the heart, he thought I was having a SCAD, his partners thought it was a spasm. I recommended that I visit the Mayo Clinic to possibly confirm what was happening. The day we arrived at the Mayo, we met with Dr. Gulati and Dr. Hayes who had that day published an article SCAD, I was sooooo excited. They confirmed the two HA were SCAD, my cardiologist at home was correct, it's good to know!

By jenafish616
Reply 3764183
February 1, 2013 at 5:06 pm
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I am the 2nd patient with SCAD.. the other young lady before me was 15 years before and she was 35 years old (I was 38) and she was a marathon runner (I was a runner as well).. mine has only been a year, but he informed me that she is now 50 and has gone on to continue run marathons and have 2 children.

I have gone back to working out, but no running (or children) for myself. I was just glad he had seen it before and knew what to do with it.

By DownUnderMom
Reply 3764574
February 1, 2013 at 7:30 pm
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My cardiologist in Australia - said he had seen a "few cases". He told me at my first follow-up appt that he had another "young" woman have a SCAD about a week after me. (She was on vacation) He told me during my angiogram that he actually had believed that it was a SCAD with me - based on my medical history and such. He also told me that he thought it would better to leave me alone to heal on my own rather than try to place a stent. I am thankful for the good care I received.

My current Cardio in Virgina has also seen a few cases. He mentioned a young woman who was teacher who had her SCAD as she was just walking in the parking lot at the school - returning home for the day.

By SojournHR
Reply 3764902
February 1, 2013 at 9:33 pm
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My cardiologist at the hospital (major hospital in Atlanta) had treated SCAD patients but I'm not sure how many. He seemed knowledgeable about the internal aspects of it. However, I question the doctors' theory that "stress didn't cause this." He and the others in his group that I saw were honest that they don't have a standard drug protocol. The cardiologist that was assigned to me at the local hospital (also in the same group) said that he has seen a few SCAD patients, but most were post-partum, which I was not. When I saw him for a follow-up visit and told him about some of the info I had gotten from Inspire, he asked if I had come across any info in my research that showed a link between vitamins and SCAD. I had not, but I was amused that HE was asking me questions.

While we're getting SCAD info as part of the medical profession's training, it also needs to be a part of training for EMTs and Paramedics. I went to the Fire Station when my pain first occurred and was sent home because they knew me since I work for the municipal government, I looked healthy, and they attributed it to something that I had eaten. Just another example of women's heart issues not being taken seriously!!!! Oftentimes, these people are the first to encounter someone with chest pain so they need to be "taught" to take it seriously, treat the person (even if it's a healthy looking female), and get them to the ER.

By ITSABOUTTIME
Reply 3764982
February 1, 2013 at 10:02 pm
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Hmm, I was his first, but I'm not sure if he has any new SCAD patients after me. I'm going to ask him next time I see him. I don't want to bad mouth him, he treated me in the ER, I believe he saved my life, and he has been my cardiologist ever since, but he did give me false information about it only happens during postpartum. The last time I went for my appointment, I gave him all the new information I found on SCAD. I think I have him very interested now. He even wrote me a nice letter afterward saying that he is interested in learning more about SCAD, if there is anything he can do to let him know and looking forward to seeing me at my next appointment. Guilty? I don't know, but glad he is taken an interest, hopefully it will help others, not just us lucky rare ones.

The one thing that I don't understand, is why the doctors who diagnosed me, weren't interested in learning more about it at the time. They all seemed baffled and admitted that they really couldn't explain because it is rare and stressed how important it was for me not to get pregnant again. I did try to get information, I did as much searching as I could at the time, I found a small article from NORD via mail (I think I still have it). I didn't have a computer like everyone has today. Stopped looking for answers, assuming I wouldn't find any. The only bad part about finding this new information, is that I believe them. I thought I could finally stop worrying about ever having another one. I found this information during menopause. Ahhhh! So a little fear returned, the same time I thought it was finally over. Knowledge is the key, at least I am aware now. Happy Heart Month! Cheers to all our cardiologist and to all of us survivors!

By Mcmcmc
Reply 3765306
February 2, 2013 at 1:11 am
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My cardiologist has seen a few over the years and more recently. He saw 2 in one month last year. Once you know what to look for you see it more often.

By Skippy1960
Reply 3766197
February 2, 2013 at 10:51 am
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My cardiologist in Vancouver BC has approximately 70 cases in the greater Vancouver area. She is currently doing research on SCAD and I believe she has gone back and reviewed many MI cases in women. Upon review of their angiograms she found dissections that were missed by other cardiologists at the time of the incident. I guess she had a clearer idea of what she was looking for.
She believes there is a strong Connection between SCAD and FMD (Fibromuscular Dysplacia).
I am hoping that all this research will eventually lead to some answers further down the road.
I feel fortunate to have her for a cardiologist and my family doctor is wonderful doctor too!

By KAKLeon
Reply 3766957 · In reply to 3766197 by Skippy1960
February 2, 2013 at 2:35 pm
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Happy weekend everyone! Here's the article on Dr. Saw's findings that Skippy mentioned:

http://www.theheart.org/article/1494189.do?54ba329c7cf69f8cc79445f2cacd2dff

When her clinical trial opens for recruitment that will be exciting as well. She and Dr. Hayes know each other, of course, so over time I'm guessing we'll get even MORE good news. NIH has something in the works too, and researchers all over the world are publishing case studies. So -- there is a lot of hope for us!

ITSABOUTTIME, i totally agree! That's what really burned me up 10 years ago, was the doctors having no curiosity at all about SCAD. One said, "oh there was one line about it in a medical text book, I remember that" but no interest in finding out why or whether it would happen again.

K

By blessed12
Reply 3767154
February 2, 2013 at 3:53 pm
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Im in Greensboro, NC and when I went to the ER, my cardio had never seen it before. Upon the advice of another cardio in town, he did all the right things. The advising cardio retired but I joined his partner 5 months after my SCAD. He says he has a few SCAD patients. He is very interested and supportive and I sent him the Mayo study. He has given me some misinformation about SCAD but I think he knows more than any other cardio in town. My original doc said 5 heart attacks a day come into our main hospital and only 5 SCADs come in a year.

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