Heart Walk Day

Tomorrow is the Kansas City Heart and Stroke Walk and 5K Run.  This year, the American Heart Association asks you what is your why?  Why do you care about your heart health?

I started to type out why I walk tomorrow but it is a long list and I thought  this better:

I could think of no more fitting song than “Fight Song” by Rachel Platten.  It seems fitting for all of the survivors that are my whys.

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You May Not Need to See Me, But I Need to See You.

I read a blog article tweeted by Carolyn Thomas at Heart Sisters the other day.  It hit very close to home and close to some recent conversation with another heart sister Teri. (See Teri’s story).  It was written by Brian Loew, the CEO of Inspire and is titled What Do You Wish Your Doctor Knew?. It is no so much the article itself, but the comments that are so valuable.  One in particular said, “I wish my doctor knew this is not routine for me.”

That statement resonates to my core.  This is exactly how I felt as I was being discharged from the hospital after what according to all of the hospital staff was a massive heart attack.  I had my heart attack late on a Thursday and was discharged on Saturday morning; literally spending less than 48 hours in the hospital after almost dying.  If it were not for my decision to call an ambulance I would have died.  My doctor told me that most women that are having “the widow-maker” die because they decide to lay down to see if they feel better.  Once they do this, they just never wake up.  In fact he told me that less than 20% of women survive this kind of heart attack and that I had done everything right to give them the best chance to save my life.

Armed with all of this new information on the seriousness of what had happened (and really not absorbing much of it–see Post Heart Attack Stun), I was shocked to be going home so quickly.  I was also shocked and put off by the callousness of the staff as I was being discharged.  I was terrified.  I had never been sick like this and to me, it was not routine.  How could this be taken so lightly?  In reality, I am sure they do not take it lightly, but that was the impression that was given to me at the time.  The staff of the CCU is well trained and took great medical care of me (you know, that saving my life thing that I am grateful for!).

As the nurse was discharging me, he handed me an appointment card for my follow-up with the cardiac surgeon and it was 3 1/2 weeks away.  Really? I said, “He isn’t going to see me until then?”  The nurse said, “He doesn’t need to.”  Here is the thing doctors–you may not need to see me, but I need to see you.

I was fortunate in my circumstance in that I am stubborn.  Being stubborn led to me refusing all anti anxiety and pain medicines at the hospital.  That following week, I had so much bleed back and it was so painful that I went to see my family doctor.  Shocked at the turn of events, he spent his entire lunch hour with me because they had worked me in.  He checked the groin incision to make sure it was ok as I was sure the massive bruising down the inside of my leg and across my entire abdomen meant I was going to bleed to death.  I was sure I was going to die in my sleep; I was sure every single thing I ate was going to clog an artery and I was sure that I was never going to get well.  I just needed a doctor to tell me I was really ok.  He went over things like what I should eat and avoid now as my only instruction from the hospital was to limit salt. At the end of my appointment he gave me the pain medicine and told me not to be so stubborn next time.

I felt so much better after he took that time with me.  I know he did not have that kind of time in his schedule that day and I will always be grateful to him.  I was so scared and I really needed his time.  I  needed to hear that I wasn’t going to die.  It was all so new to me to now have this chronic illness and to not be sure what it meant for me or what to expect.

For me, this is what I wish my doctor and all cardiologists knew.  You may not need to see me, but I need to see you.

The Results

After an excruciating weekend waiting for test results and envisioning a multitude of really bad outcomes, I received my test results on Monday.  They were fine–no further damage and no open heart surgery.  What a relief!  Of course, when they called with good results, it did not mean that I could reverse my decision to leave my corporate job. (See My Decision to Leave).

Stress can be harmful to your heart health and I most certainly have to take care of mine.  An article in Time Magazine from June 22, 2014, explains “Stress causes an overproduction of white blood cells, which defend the body against diseases but can cause problems when produced in excess. These extra cells can stick to artery walls, causing restrictions in blood flow and aiding the formation of clots that can cause blood-vessel blockages throughout the body.” (New Study May Explain Why Stress Can Cause Heart Attacks)

Dr. Steven Nissen from the Cleveland Clinic explains how stress can trigger a heart attack:

I chose a pretty extreme way of limiting my stress.  Stepping out of the corporate world is the right decision for me and allows me to chase what I have always wanted to do.  When I look in the mirror, I can see that I made the right decision.  I look and feel younger (except for that decision to let my hair go grey!) and  the relief of knowing I don’t have to think about it any more is amazing.

I have come to terms with my departure from Corporate America and now look forward to the possibilities that await me.  I am in a rare position to be able to stop mid-life and totally recreate myself.  What a tremendous opportunity!

The Wait

I went to the hospital on Thursday to have my nuclear medicine stress test and echo.  It makes me feel like I will permanently glow in the dark when I see this on the door where I am having an IV placed:

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Seriously, not a warm and fuzzy feeling!

I was surprised with the ease I was able to hit the time, speed and target heart rate that they wanted me to hit.  This chest pain feels exactly like the chest pain I had the first time my stents failed so I half expected them to wheel me right to the OR, crack my chest open and bypass the five stents already in my LAD.  I was happy when they sent me home!

Once I left the hospital, the wait began.  I am waiting to hear the results.  The last time, they called me the next day and scheduled me to come back to the hospital to go back to the cath lab.  I have passed the next day mark, so I am hoping for something different.  Right now I have tried to convince myself that no news is good news but the truth is that the waiting is driving me crazy.

I did manage to take my mind off the wait yesterday when I attended the American Heart Association Kansas City Go Red For Women Luncheon.  Kansas City turned out and helped us raise $775,000 for education and research.  It was nice to be there because I was with my heart sisters who get what it is like to wait for results. We had a great day!

Pictures4 Pictures3 Pictures2 Pictures1Pictures  IMG_20150417_171408_rewindI was super excited to meet Nancy Brown who is the CEO of The American Heart and American Stroke Association.  It was such an honor to have her in Kansas City yesterday!

This weekend, the excruciating wait continues.  I try to keep myself busy and try to keep my mind off of the myriad of things that could be causing chest pain and the outcomes of those.  I know I shouldn’t do that but I simply can’t help myself.  I will drive myself crazy with it until I hear!

My Decision to Leave

I have been wrestling with a major life changing decision. I have known for many months that my occupation (running an anesthesia billing office) is more stress than I should put on my post heart attack heart.  The evidence has been building.  Increased chest pain, increased indigestion and crushing fatigue. Even as these symptoms were increasing, I tried to ignore them.  To acknowledge them seems like losing.  It means I should not do all the things I did pre-heart attack.

So, I’m leaving my corporate job. This week, I gave my notice to a company I have loved working for and have been with for a long time.  It was gut wrenching to tell my staff and I cried when I told them.  They cried too. They are indeed the hardest working and the most amazing staff that someone could ever hope to manage.  From the time I transferred from the medical billing software side of our company to the billing service, they have given me and our clients 110%.

My company has supported me 100% since my heart attack.  They have supported  my mission to spread the word that heart disease and stroke are the number one killer of women and in my work with the American Heart Association.  They got behind Go Red For Women and National Wear Red Day:

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We have had Heart Walk Teams:

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You can see why this was an excruciating decision. I will miss them.  So I enter the uncharted territory of no corporate paycheck or insurance coverage and enter college territory.  My cardiologist is happy with this.  She was decidedly unhappy with my choice to ignore my symptoms and let them continue for this long without telling her.  As a result,  I get  to go have a nuclear medicine stress test and echo next week to make sure none of this caused any damage and that my symptoms are only a product of the stress and not something more sinister!

Score–Heart disease – 1, Jodi – 0.  You may have won the battle, but I will win the war.

Gender Inequities In Cardiac Care

I posted this originally on 12/17/14 and this one always applies!

I started this blog to work through the why of my heart attack at 42.  I started it just for me and in the beginning, I only shared it with a very small group of longtime dear friends because they wanted updates on how I was doing.   Surprisingly there is much emotion surrounding a cardiac event.  Blogging is a great way to work through this.  It also has a funny way of connecting you to others that are walking the same path as you. I found great relief when I found the blogs of Jen Thorson (My Life In Red) and Carolyn Thomas (Heart Sisters). Just knowing I wasn’t alone and other women had experienced this and lived was an amazing truth to find. Still, it is a great surprise to me that people actually find my blog and read it. That I have the same impact on women that Jen and Carolyn had on me makes me smile.  I know I do because I often receive emails from women reaching out to me in an attempt to find the why in their own cardiac events.  It makes being out on the web worth it.

Not long ago, I received a particularly striking email from a woman in Georgia who had a heart attack over the summer.  She is older than me by almost 20 years and her experience really infuriated me.  She found Jen’s blog and that was the first she knew of cardiac rehab.  She also said she feels  that her doctor dismisses her because she is older and therefore not that important.  She feels young and she was very put off by this treatment.  I have been sitting on this and stewing over it not sure what to write.  I find it unconscionable that in this day and age of modern medicine and technology that this kind of gender and age inequity exists.

I was referred to cardiac rehab however my insurance would not cover it so I only went a few times. I found this to be so odd because my bill from my STEMI was about $250,000.00  That they would cover this and not the recovery and prevention of the next one leaves me scratching my head.  I work managing medical billing so I am not sure why this was so surprising to me but it was.  With all of the studies surrounding the benefits of cardiac rehab it just seems so ridiculous.

According to The American College of Cardiology, “Women with coronary artery disease who completed a 12-week cardiac rehabilitation program were two-thirds less likely to die compared to those who were not referred to the program. In addition, the mortality benefit derived from this evidence-based program appears to be much more striking in women than men with the same condition, yet referrals and attendance among women fall short, according to research being presented at the American College of Cardiology’s 62nd Annual Scientific Session.”( Rehab Associated with Reduced Risk of Death in Women with CAD)

The World Heart Federation states, “Despite the fact that half of the 17.3 million deaths from cardiovascular disease (CVD) each year happen in females , women are still discriminated against when it comes to the management and treatment of this disease. Women are more likely than men to be under-diagnosed and under-treated, mostly because the presentation, progression and outcomes of the disease are different and less understood in women than in men.  Although there has been progress in raising awareness about CVD in women and studying the specifics of the disease, as well as in adapting CVD treatment and care for women, the gap is still too wide.” (HEART TO HEART: EXPERTS CALL FOR AN END TO GENDER BIAS IN CARDIOVASCULAR DISEASE)

A study published in The European Journal of Preventative Cardiology concludes, “CR referral remains low for all patients, but is significantly lower for women than men. Evidence-based interventions to increase referral for all patients, including women, need to be instituted. It is time to ensure broader implementation of these strategies.” (Sex bias in referral of women to outpatient cardiac rehabilitation? A meta-analysis.)

According to the American Heart Association, “There is ample evidence on the proven benefits of CR/SPPs on CHD risk factors and exercise capacity.3 Moreover, recent data demonstrate that participation in CR/SPP is associated with a reduction in mortality after percutaneous coronary interventions4 and with a dose-dependent reduction in both mortality and recurrent MI for those patients with stable angina or patients after MI or coronary artery bypass surgery.5 Given the significant benefits that CR/SPPs bring to CVD prevention, every recent major evidence-based guideline from the American Heart Association (AHA) and the American College of Cardiology Foundation (ACCF) about the management and prevention of CHD provides a Class I–level recommendation (ie, procedure/treatment should be performed/administered) for referral to a CR/SPP6 for those patients with recent MI or acute coronary syndrome, chronic stable angina, heart failure, or after coronary artery bypass surgery or percutaneous coronary intervention. CR/SPPs are also indicated for those patients after valve surgery or cardiac transplantation.6

Despite the clear benefits of cardiac rehabilitation, the use of such programs remains dismally low. Of eligible patients, only 14% to 35% of heart attack survivors7,8 and ≈31% of patients after coronary bypass grafting surgery7 participate in a CR/SPP. Lack of accessibility to program sites and lack of insurance coverage contribute to the vast underuse of cardiac rehabilitation services.3 Another major factor is a low patient referral rate, particularly of women, older adults, and ethnic minorities, to CR/SPP services.3 Accordingly, patients in these latter groups are the least likely to participate in cardiac rehabilitation.7 This is especially noteworthy because women and minorities are significantly more likely to die within 5 years after a first MI compared with white male patients.1

The remarkably wide treatment gap between scientific evidence of the benefits of cardiac rehabilitation and clinical implementation of rehabilitation programs is unacceptable.” (http://circ.ahajournals.org/content/124/25/2951.full)

Women should find it outrageous that despite the research by major well respected outlets they still receive sub-par treatment when compared to men. In my estimation, the only way to change this is for women to take their healthcare seriously and advocate on behalf of themselves. I told the woman that emailed me from Georgia to go to a different cardiologist.  Keep going to a different doctor until you find the one that will take you seriously and will provide you the level of care that you deserve.  I am on my 4th cardiologist and have finally found the one.

I was fortunate that in my situation, I called 911, had a cardiac team waiting on me when I arrived at the hospital, received very quick treatment and was referred to cardiac rehab.  I had no idea that this was not the norm until I started meeting other women who were sent home from the hospital mid heart attack.  They were sent home because they had the flu, they had pulled a back muscle, were having an asthma attack or had indigestion–anything but a heart attack. Once they finally received proper cardiac care, they aren’t referred to cardiac rehab. Unimaginable!

As a woman, you must know that heart disease is your number one killer.  You must make yourself aware of the signs and symptoms of heart attack and stroke.  You must pay attention and you must advocate for yourself when you know something isn’t right. Your life may depend on it.

I AM Strong Enough to Live It

This was a popular one from 09/13/2013

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Someone posted this picture to Facebook last night and now I can’t even remember who.  I suppose that is the cholesterol drug side effect of not being able to remember.  At least I blame my forgetfulness on that because it is convenient to do so! Really, being 44, oh so close to 45 at this point and super busy could possibly be the other reason but I still blame it on the cholesterol medication!  I have thought about this statement all day.  Every time I have had a meeting to hammer out issues today, every time I wondered if I pulled a muscle in my back or if that is a sign of another heart attack I have thought about it.  Whatever my issue was today, I thought about this.  Time after time since my heart attack I wonder who in the hell handed me this life and why in the hell they thought I was strong enough to live it.

Perhaps I was given this life because I am strong enough to live it. Of course I suppose part of that is my fault as it is not a huge surprise that I grab the injustice of an early massive heart attack by the horns and wrestle with it publicly. Perhaps the one that hands out these lives knows this about me.  Perhaps they knew I would just be pissed enough that this happened to me that I would shout it from every corner of the internet and tell every person that asks so that no one else has to do this.

Perhaps the one that hands out these lives sends the precious ones of you that follow my journey and guides you to send me inspirational messages on my worst days.  The days that I am so tired of having heart disease and dealing with all the bullshit it entails.  On those days, a day much like today,  I usually come home to a message from someone I have known for thirty years telling me they got help and they are ok because of everything I write. On my days when I haven’t slept because I was afraid I might not wake up, one of you that reads this or follows me on Facebook reminds me why I was given this life.  On my worst days because of this life, I am also the most grateful for this life.  I am grateful for you that read this be you my closest friend or total stranger for letting me know that I have made a difference in the way you choose to live your life, or that I have made a difference in your decision to seek medical care.

I suppose in some weird demented way , I am actually grateful to the one that hands out these lives. So, thank you whoever you are that hands out these lives for this life (even though there are days I secretly hate you).  Thank you for giving me the chance to make the difference in someones decision to call an ambulance.  Thank you for allowing me to be in the back of the minds of those that are trying desperately to ignore medical symptoms that they really know they shouldn’t ignore.  Most of all, thank you for showing me that I am indeed strong enough to live the life you gave me.