Julie’s Battle With Saying Heart Attack

I want to write tonight and tell you the story of my friendship with my heart sister Julie.

In the spring of 2013, I attended the Go Red For Women luncheon put on by the American Heart Association in Kansas City.  I was sitting at a table with new volunteers and I met Julie and her sister Jamie.  After the luncheon, Julie wanted to know more about my story so we talked for sometime and I told her to read my blog.  I asked her about her story and all she could say is she had an event.  Of course, I am thinking to myself what the hell is an event? Being me, I asked outright if she had a heart attack.  She hummed an hoed and said she had a stent.  Still not having an answer to the heart attack question I said heart attack or no?  She responded with a little heart attack.  She also went on to explain that her heart attack was in 2010 and she had never told anyone outside of her immediate family.  What?  This was so foreign to me.  We were so opposite.  Me? I was posting to Facebook from the CCU the day after my STEMI.  I couldn’t believe it and I guess I needed to know that other people couldn’t believe it either.

An odd pairing, Julie and I became fast friends.  We did the Color Run that year:

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We started being concert buddies and our first together was Styx and Foreigner at my favorite venue, Starlight:

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We have done heart walks:

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After this heart walk in 2014, I put together a video and I had to tag her as Heart Disease Survivor instead of Heart Attack Survivor.  She still hadn’t told anyone!  I didn’t say anything though, it wasn’t my place.  I felt like she could do so much education if she would say heart attack in public.  It wasn’t my decision though.

Then, all of a sudden the next fall, she was ready and in American Heart month 2015 she did live local TV!  I cried when I watched her.  The only other person that truly understood how far she had come was probably her sister.  I went to Heart and Stroke Ball with the new-found heart attack survivor and then the 2015 Go Red For Women Luncheon:

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Then, this last fall, she was named a National Spokeswoman for the American Heart Association!  I was so proud of my friend!  I knew if she would just say the words she would have so much to offer and could change the face of heart disease education.  I was right!

AHA-458-Julie Her AHA story here.

Tonight, another moment that made me so proud of my friend.  She sent me a text this afternoon to tell me she would be on the NBC Nightly News (click for video.).
Oh my gosh!  My friend that couldn’t say heart attack in April of 2013 was telling her story to the whole nation tonight!  My heart bursts with happiness for her!

Julie and I were an unlikely pair in the beginning but we were more alike than we knew.  I am forever thankful for my heart attack because it has brought me to women like Julie!  Our friendship continues and we bond over other things like our love of 80’s music–in just a few short weeks we kick off the summer concert season at Starlight with Boston and Paul Simon in the same week!  I know we will have a lifetime friendship and I look forward to it!

As stated on the NBC Nightly News story tonight, silent heart attacks are becoming not so out of the norm and they are deadly!  Heart attack and stroke do not discriminate– please learn the symptoms and never, ever ignore them!

May is American Stroke month.

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In an it’s a really small world news story this week, a post from Strike Out Stroke popped up in my Facebook news feed that proves that heart attacks and stroke do not discriminate.  One of the doctors that worked with a practice I billed for in my former corporate life (My Decision to Leave) had a stroke.  I tell you this because I preach it.  Heart disease and stroke DO NOT discriminate.  It affects nurses who are primary stroke coordinators (See Teri’s Story-Stroke in Her 40’s) and it happens to doctors who are usually the caregivers and not the sick ones in our minds. (See Survivor to throw out first pitch for Strike Out Stroke night at Reds game.) If it can happen to nurses and doctors in their 40’s, it can happen to any of you! As American Stroke Month winds down, know the signs and symptoms and know how to act F.A.S.T.

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Melancholy Reflections on Heart Disease

April 9 marked the one year anniversary of giving my notice to my corporate job and April 23 was the one year anniversary of my last day.  (My Decision to Leave) I have done some melancholy reflection over the last week.  I still feel somewhat sad to have left a job that I worked hard at and was proud of.  On the other hand, my health was suffering with that job.  I’m quite sure that no job is worth that.

There are things I miss about that job. I miss some of the best staff and coworkers  that anyone could have wished for.  I miss the people and the relationships I built with the software clients. There are other things I don’t miss.  I don’t miss the stress of the actual job of managing medical billing and I don’t miss the effects that stress was having on my health.

The Friday before I gave my notice I was sitting at my desk pressing my knuckles into my sternum wondering if I should call an ambulance or because I could see the hospital from my desk would it be quicker to drive myself. I took some deep breaths and the chest pain subsided and I rested until my cardiologist appointment the following Tuesday.  It only took the strong urging from my cardiologist combined with opening a crappy email from my new boss (from the company that bought us out) when I got home to make me type my resignation.  With no plan set in cement, I turned in my resignation sure that if I didn’t it would kill me. I have ended up opening a vintage furniture store part-time and working for a new software company part time.  I really like working for them.

When I walked out of my corporate job on that last day, I did not feel one pang of regret other than the people.  I knew right then and there that I would never go back to that world.  This last year has been an interesting one.  It has brought the end of the grief from losing my pre-heart attack life and an acceptance of my post heart attack life.  I think what has surprised me the most is there is actually a grief process to work through after a life changing medical diagnosis. Not only that, but how long the grief process has taken given my heart attack was 4 1/2 years ago.  Mostly what I think you grieve is the gift of denial.  You grieve the loss of what my heart sister Carolyn Thomas calls in her blog  healthy privilege. (Carolyn blogs at Heart Sisters) No longer is ______ disease (in my case heart disease) something that happens to other people.  I will be 48 this year and saying I have heart disease is still strange.

I had a cardiologist appointment last week and it was so much different from the absolute fear I felt when I saw her last year.  I got very good news this year.  My ejection fraction was 65 and my nuclear medicine stress test showed nothing new.  It only showed the original damage from my STEMI. That is the sweetest news I could hope for.  Last year I cried in her office because I was sure I was going to die and this year I cried in her office because apparently I get the privilege of sticking around a while!

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I No Longer Cry–American Heart Month

Another National Wear Red Day was a huge success.  My friends never disappoint! A record number turned out in red and boy did they look fabulous!  See for yourself!

I have not blogged this February.  I realized it is because I’m not sure I have anything to say about heart disease, heart attacks and heart failure.  I came across this yesterday and it was striking to me:

12744598_10154002478638707_8903841493589121522_nI can tell my story and I no longer cry.  Am I healed? I don’t really know.  What I do know is I no longer have time to let heart disease define me–to let being a heart attack survivor define me.

There is no arguing that experiencing a massive heart attack at 42 was life changing and has had a huge impact on the current incarnation of me. On doctors suggestion, I stepped out of Corporate America and opened my own business, The Vintage Sunflower.  As up-cycling furniture does not make a ton of money, I also work part time at a local software company in the mornings.  Not one thing I am currently doing causes the chest pain of my old job.  My heart attack brought me here and here is exactly where I should be.  Here still includes being a heart attack survivor, it just includes one that doesn’t cry when she tells her story anymore.

So while I will always educate others and tell my story to make sure women know that heart disease is their number one killer, it just won’t define me.

Happy American Heart Month to you–know your risk and know the signs and symptoms of heart attack, heart failure and stroke and call 911 if you have them!  It saved my life and can save yours too!

We Are Young

It has been four months since my last blog post.  I can hardly believe it.  Life has gotten in the way of blogging!    So many blog posts in my head and no time to write them down. Alas, I have been busy getting my shop The Vintage Sunflower up and running.  (See My Decision To Leave) This leaves no time to write any of those blog posts that reside in my head.

Today, I find myself with rare downtime.  It is hard to decide which post to pluck out of my head and write about, but February is coming up and it seems like a good time to write about the importance of Go Red For Women.  If you have followed me, you know I have been heavily involved in the American Heart Association here in Kansas City and February is National Heart Month.  I am no longer a Go Red Ambassador or the Chair of the ambassadors as my schedule no longer allows it.  I have switched to being a social media ambassador for AHA Midwest.  This is only online and no meetings and that fits into my schedule much better!  Friday, February 5 is National Wear Red Day.  This continues to be a very important day to me.

Although I no longer live my life revolved around heart disease, it is still in the back of my mind.  My heart sisters are always on my mind. Over the summer, my heart sister Sadie got her new heart!

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Sadie with her transplant surgeon

My heart sister Caroline got two new hearts.  Her first one rejected, and most recently she was in the hospital on the verge of a second rejection.  What is in the back of the mind of every woman with heart disease is that even though you feel well, the fight is never over.

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Caroline during her most recent hospitalization to help save the second heart.

They were able to treat it, she was able to return to college and she now has only three rotations left before she is officially a veterinarian!

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Sadie and Caroline when Caroline was in the hospital

My heart sister Jenna is currently in the hospital until she receives a heart.  She blogs at Grapefruit and Tattoos and you should read her most current blog, 1A.

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Jenna’s hospital selfie.

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Jenna and Sadie last spring in healthier days.

My heart sister Susan had heart surgeries two days in a row before Christmas and was hospitalized again with complications around the first of the year.

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My heart sisters Julie and Angie were both named to the 2016 Class of Real Women this year and, like me, are both heart attack survivors:

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Julie–Read her story here.

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Angie–Read her story here.

And last but not least, here is me:

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What do I want you to know by posting the pictures of these women and how does it relate to the importance of Go Red For Women?  These are the faces of women with heart disease and we are young.  We are not the image you have in your head of someone who has heart disease. In case the pictures of these young women did not convince you, you can also read the stories of other young women I have featured:  Liz, Keri, Teri and Shelly.  Before my heart attack at 42, I could have never imagined being sick or knowing so many young women who are also sick–especially not sick with heart disease.  It never dawned on me just like it does not dawn on you that this is possible.

However, it is possible.  National Heart Month is February and National Wear Red Day for Go Red for Women is Friday February 5, 2016.  Heart disease is the number one killer of women killing one in three. Eighty percent of heart disease is preventable with education and lifestyle changes:

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Education of women and the men that love them are key!  Women need to know that heart disease is their number one killer but that they can change that. Men need to know so that they can make sure the women they love know it.  Heart disease is also the number one killer of men but has killed more women than men every year since 1984.

Help me spread the word that heart disease and stroke kill one in three women–that is approximately one woman every 60 seconds. Seriously, 60 SECONDS!  Can you even wrap your head around that?  I need you to get in your red on Friday February 5, 2016 and post your selfie–both ladies and gentlemen! Tell everyone you know why you are wearing red! Just to get you in the mood, you can read last years National Wear Red Day post. Look for the local Go Red events in your community and take part and learn what it means to Go Red. Tag me in your Go Red Selfie!

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You can tag me at @skinnybitchchro on Twitter or you can post it to my National Wear Red Day event on Facebook.

Cheers and Go Red for Women!

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Boycotting Heart Disease

It has been almost two months since I have blogged.   This blog sits in the back of my mind as I keep thinking to myself that I really need to write.  Truth is, I have kind of been boycotting heart disease.  I have taken the summer off; not from having heart disease but from thinking about it defining me.

My move from the corporate world has been a whirlwind.  In a matter of five months, I have gone from being an expert in anesthesia billing to owning The Vintage Sunflower,  a vintage furniture and home decor store.  I haven’t had time to think about heart disease.  I’ve been busy following my passion.

IMG_20150805_212434I love making old worn out pieces of furniture pretty again.  I love getting up and putting on jeans, a t-shirt and a pair of Birkenstocks and making my way the mile to my store.  What a change from commuting an hour each way.  I love meeting my customers and getting to know my community better.

These days, I don’t think of heart disease as often as I did.  I really just don’t have time.  The great thing?  I don’t have any symptoms to constantly remind me.  My symptoms of chest pain were so bad before I quit my job that I was sure I was very quickly going to have a second heart attack before I turned 50.  Now, I don’t feel that way.  It is amazing what stress can do.  In fact, one study published in Behavioral Science and Policy states that stress at work is as bad for you as second hand smoke.

My summer off from heart disease defining me, my boycott,  is over and that is ok.  I was asked to be the chair of the Go Red Ambassadors for The American Heart and Stroke Association in Kansas City.  We are a volunteer group of survivors and advocates who educate women in our community that heart disease and stroke are the number one killer of women.  It is a great honor and I am proud to serve as the chair.  I can’t wait to work side by side with such amazing ladies!  Without heart disease defining me, I would never know them. That my friends is the beauty of ending the boycott!

No More Chest Pain

It has been almost three months since I stepped out of my corporate job.  I realized the other day that I am a different person now.  I’m me again. My cardiologist said after the testing that there was nothing physically wrong with my heart, only stress, and now I believe her.  It feels good to believe her.

My last day at work was really surreal–I still couldn’t believe I’d made the decision to leave.  The funny thing?  When I walked out the door, I knew I would never return to that world.  Just about as monumental as the decision to leave the corporate world was the decision to turn my hobby into my job.

This decision is like the weight of the world off my shoulders and literally lifted the pain out of my chest and I feel as if I can breathe.  I have long salvaged furniture and turned it into something pretty.  I have signed a lease on a shop in the downtown of my little town and am opening an up-cycled vintage furniture shop.  As my girls and I were coming up with a name we knew we wanted to incorporate being from Kansas.  The result?

The Vintage Sunflower

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Perhaps not everyone can make this move but I was forced to in order not to kill myself.  I think you need to realize how detrimental stress is to your life.  When you are in the middle of it, you can’t see what it is doing to you.  Once you are out of it, hindsight is truly 20/20.  Please take steps to reduce the stress in your life before it harms your heart!

Are Patients Stupid?

Yesterday I read a USA Today article that was posted on Twitter by Carolyn Thomas at Heart Sisters.  The article is called called Don’t Yelp Your Doctor and it is written by Niam Yaraghi who hails from the Brookings Institution’s Center for Technology Innovation.  The Brookings Institution lists Mr. Yaraghi as “a fellow in the Brookings Institution’s Center for Technology Innovation. He is an expert on economics of healthcare information technology with a focus on Health Information Exchange (HIE) systems. Niam’s research examines the network externalities in the healthcare market and their effects on HIE adoption and usage. His research is currently focused on analyzing the outcomes of HIE use in reducing the costs and increasing the quality of healthcare services.”

I was completely enraged when I read his article in USA Today. The basis of his article is that patients should not rate physicians on Yelp or any other online customer review site. He states “Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”.  He continues with “Since patients do not have the medical expertise to judge the quality of physicians’ decisions in the short run and are neither capable of evaluating the outcomes of such decisions in the long run, their feedback would be limited to their immediate interaction with medical providers and their staff members.”

For the record I never give online reviews whether it is for medical care, electronics or strawberries. I only read the online reviews on electronics and usually CNET is my source.  I don’t really believe in online reviews and I certainly would not pick a doctor based on an online review. The proper place to check out a doctor is your state medical board.  There you can find negative information on doctors.  As an example for Kansas, you would go to http://www.ksbha.org/main.shtml to research complaints against a doctor.

My objection to his article has nothing to do with online reviews and has everything to do with the implication that all patients are ignorant when it comes to their own medical conditions and completely incompetent to make medical decisions. This is a ridiculous implication. This implication suggests that one should never question the care they receive or the decision of their doctor because they don’t have the appropriate education.  Bullshit.  I can give him excellent reasons you should absolutely question doctors and that you should not go back to a physician you don’t like and wouldn’t “rate” highly.

First and foremost is my visit with a new family physician after my long time doctor left his practice to take a research position.  This was my first time with the doctor that took his place.  He was prescribing me an antibiotic and I am allergic to penicillin so he told me he would prescribe Zithromax.  Good choice if every cardiac provider that I have seen had not warned me about taking this antibiotic.  When I brought this up to him he got very arrogant and seemed to chastise me for challenging him by saying that cardiologists overreact to this antibiotic and that not every person who has taken Zithromax has died.  When I asked him if he knew I was a heart attack survivor he treated that like it was no big deal and he had no interest in discussing that.  When I told him there was no way I was taking it, we settled on doxycyline.  Why on earth would I give him a good review after this encounter?  If there were an online medical review site that listed asshole, I would go fill it out. I absolutely will not see him again.

Perhaps we should take a look at an earlier blog post of mine, Gender Inequities In Cardiac Care – You Must Advocate For Yourself.  In this post, I discuss an email I received from a woman in Georgia who was not referred to cardiac rehab post cardiac event. How is it that this woman did not know about cardiac rehab?  When all of the studies show that it is of great benefit, some doctor made a decision not to tell his patient.  If I knew what doctor that was, I would tell everyone I know not to see him. In my opinion, this is inadequate care.  I challenge Mr. Yaraghi to argue with me on this when numerous studies support my stance.  How is that for not having the knowledge?  A patient who reads medical studies on her condition?  Apparently unheard of in Mr. Yaraghi’s world.

The fact is that there are a lot of very qualified and excellent doctors and I have the highest respect for them.  Just like any other profession such as financial advisors (the example Mr. Yaraghi uses), some are excellent and some suck at their jobs.  Patients should not be chastised into thinking that because they do not posses an MD, they do not have the common sense to be able to weed out the providers that are not providing good medical care. For a national news publication to allow an article that suggests this is irresponsible.