Friday, April 18, 2014

One More Time


"I must admit that I have been a little down lately. My body is overly fatigued as I begin to taper for my marathon, emotionally I am drained, and with that combo, my stroke residual is more prominent: my face a little droopier, my left arm a little weaker . Today I had the honor of meeting Joshua Sundquist, a 29 year old ParaOlympic Skier that lost his left leg to cancer at the age of 9. His words touched my heart. He always puts 1MT1MT on his ski. One More Thing, One More Time. On April 27, when I run the Oklahoma Memorial Marathon. I will run for Izzie, Sam, Amy, Denise, Rodney, Trent, Zach, Tori, Chance, Killen, Jodi, Jaclyn, Liz, Keri, Velma, Angela, Julie, Stefani, Shelly, Michelle, and all my heart sisters. Rather it be one more breathing treatment, one more rep, one more step, one more blood draw, one more surgery, one more therapy treatment. We are here, we are alive, and we are loved. We have purpose, we have a story to tell, and we are blessed. "One person can make a difference and everyone should try"JFK. I wrote 1MT on the bottom of my shoes. It is an honor."


My friend Teri posted this on Facebook yesterday.  I glanced at my phone while I was at work and read those words.  Before I knew it, I had tears and mascara streaming down my face while I was sitting at my desk.  When will I learn not to read my heart sisters words when I am at work?  They get me most every time. If you have followed along, you should remember Teri's story as she was gracious enough to share her story with my readers during American Heart Month.  If you missed her story, you can find it here.  Teri ran her first marathon just 26 days after her stroke!  I wish her love and luck on April 27 as she continues her post stroke journey in the Oklahoma Memorial Marathon.  I will write 1MT on the bottom of my shoes that day in her honor before I go run my 60 second spurts during my walk!

1MT, 1MT.  One More Thing, One More time.  This is very poignant from the young man that writes this on his ski. I know that Liz (her story here), Keri (her story here), Shelly (her story here), Monica (her story here) and I all join Teri in understanding this.  When you have a chronic illness, at some point in your life, the rest of it is spent with the "one more".  One more time I take this medicine, one more time I check my blood pressure.  One more time I stress because it is on the higher side of normal instead of the lower side.  One more time to the cardiologist. One more time getting shot up with radioactive dye to have a thallium stress test.  One more time hoping to not have to go to the OR.  Those are the one more times that we dread.

There are also one more times that we don't dread.  One more time I get to share my story.  One more time I get to see the look of shock on someone's face when they look at me like they can't absorb the story I am telling.  One more time I get to educate others about heart disease -- that heart disease is the number one killer of American's and stroke the number four killer.  One more time I get to share what I did that made me able to have these one more times.  One more time next Friday I get to hang with my heart sisters as The American Heart Association Kansas City hosts the Go Red for Women Luncheon.  What a privilege it is!

Monday, April 14, 2014

Endless Reading and Running a 5K

I endlessly read about heart disease.  The newest studies, the newest techniques and the advances that will hopefully give me a better quality of life down the line. 

Several times in my endless reading I have read that if you have 100% occlusion, there is no way to stent.  This would require them to crack your chest open and perform a coronary artery bypass graft.  I clearly remember my doc telling me that my LAD was completely blocked yet they stented the artery. The cardiac cath and the stents took a long time and I ended up with three of them. I remember him telling me that a lesser cardiac surgeon would not have been able to place the stents and would have done the CABG. At the time I was grateful to be alive and grateful not to have my chest cracked open.  They failed eight months after being placed and I had to have two more stents put inside the original three so they could reopen them--they were 70-80% blocked with scar tissue.

Sometimes when I read things as this I really question the judgement of this first doctor.  Not that I really want to have them crack my chest open, but perhaps it would have been better than continually wondering if and when my stents will fail again. Did his ego of not being a "lesser" surgeon cause him to try something that I now get to pay for?  I won't ever know.  I was in an emergency and I came out alive.  In the end, that is what matters.

Although I find things that make me question my care, I can tell you in the endless reading that I do I also find some pretty cool things.  Things like a tiny wireless pacemaker.  Things like stem cells showing promise in stroke recovery.  The research is awesome and I can't wait to read the next cool thing!  In the end even if I question my own care there are more cool things that outweigh this and keep me reading.

I have reached a huge milestone in my recovery since I wrote last.  I have actually started running.  Granted my running currently exists of 60 second time frames woven into my walk, but it counts!  I have to start somewhere:)  I was so psyched to have done this.  I have been terrified of running.  Mostly, I have been terrified my heart could not handle it.  Well, it can and that feels awesome!  I have been attending a women's training group at a local hospital leading up to the Mother's Day 5K.  My girls are walk/running it with me on Mother's Day morning. Yay for small steps!


Sunday, March 30, 2014

A Letter To My First Doc

It is National Doctors Day!  Thank you to all the doctors I have seen over the last two and a half years.  Whether I have liked you or not, you have played a large part in the fact that I am here to write this today. Thank you if you are on call today.  Those folks whose lives you save will surely always be grateful!  I generally like docs--in fact, I collect their money for a living.  I have found a great medical team that I love.  That was not the case post heart attack though. Sometimes I think that seeing sick people becomes so commonplace for some doctors that they forget it is not commonplace for their patients.  This is what I would tell my first doc now that I have had time to digest my heart attack experience:

Dear Doc--

I couldn't comprehend anything you said to me in the hospital.  I had just suffered a heart attack and that in and of itself was all I could tolerate.  You acted like this was routine. This was not routine to me. I had a lot of questions, but you didn't give me the time.  You know what I wanted to know most?  How much work was I going to miss?  Was I going to be able to go back to work?  What did this even mean to me? These are but a few of the things that went through my mind as you talked to me with a tone of condescension that indicated you thought I couldn't possibly understand medical terms.

I had a heart attack on a Thursday and then on  Saturday you sent me home.  You seemed to be treating this like it was no big deal! I was thinking that I couldn't believe I could go home two days after a massive heart attack and not die once I left.  How was it possible that you didn't understand that you just told me I was lucky to be alive, my heart attack was massive and then you didn't seem to understand or care that I was so scared of dying the second I went home?  I didn't know what to do when I got home.  You told me I should pick up my medicine, watch my salt and be careful not to tear open the incision site in my femoral artery.  You were pretty sure that if I tore it, I would bleed to death before I could even call an ambulance.  Oh yes, you told me to make sure to call your office to make a follow up appointment in a month.  A month??? Are you f***ing kidding me?  What was I supposed to do for a month?  You may not have needed to see me for a month, but I am sure I needed to see you.

I can tell you that outside of some reassurance from my family doc, for the next month I worried everyday that something I was doing was going to kill me.  You never answered my questions so I didn't know when to go back to work.  I am 42 not 72 and these were things I needed to know from you.  Because I got no useful information from you, I started finding my own information on the net.  This generally left me more questions than answers.

When the month was finally over, I wrote down all my questions and I brought them with me.  You gave me about the same amount of time you gave me when you discharged me from the hospital.  I still didn't understand any better than I did when I walked in your office and then you told me you would see me in six months?

You see, I am sure the thing you simply didn't understand is that even though you see this everyday, I don't.  Treating me like this is something normal that happens was not the right thing to do.  This is not normal!  I needed you to sit down and explain why this happened and what I should expect in the future.  Tell me what I need to do to make sure I don't die. When I tell you what I have found online, don't be so dismissive.  The reason I am asking is because I don't know, you didn't tell me and I had to do my own research. 

Thank you for saving my life when I didn't even know your name.  Thank you for being on call when I arrived at the ER and spending that evening away from your family. The best thing you did for me was teach me that I needed to take my healthcare into my own hands and not rely on vague information. You made me research my docs and pick one that was willing to be my partner in this journey.  I hope you read this and I hope that next time you don't treat someone like what they are experiencing is no big deal.  Trust me when I tell you, it is a huge deal to them.

Yours truly,

Jodi

Thursday, March 27, 2014

Reaction Differences

When I was in the hospital a nurse came in and handed me information on living with heart disease.  I remember thinking I had a heart attack, I don't have heart disease. The two were in no way mutually exclusive in my mind.  What a sheltered world I lived in, huh?  I had never been really sick with much more than strep throat or the occasional flu.  Carolyn over at Heart Sisters wrote about this phenomenon in her post ‘Healthy Privilege’ – when you just can’t imagine being sick. I could have never imagined this.  This was something that happened to other people, not me.

I am in the CCU which I can't believe in the first place, and I know I am looking stunned while this nurse is trying to go over this information with me.  As if I had not reached illness overload already I could hardly digest that she was telling me I now had a lifelong chronic illness. (See Post Heart Attack Stun). In my mind heart disease was for old people.  Let me tell you that 42 feels really young when you are talking about heart disease and heart attacks. A heart attack was a one time thing; it was over and now I am well and I go home. Wrong--now I go home and take a lifelong regimen of cardiac medications including an anticoagulant, a beta blocker, a statin drug and aspirin. Now I go home and decide how this defines my life.

I came home and decided this was indeed going to define my life and that it would play a large part in defining my life.  I was pissed as hell that this had happened to me.  I was pissed that it had ruined my 'healthy privilege' as Carolyn calls it.  So, never one to sit idle I posted it on Facebook a couple days after I returned home.  Even some of my closest friends did not know when I decided to put it out for the world.  After working through a whole lot of anger and an extreme fear of dying pretty publicly, I've never looked back.  I shout survivor to whoever will listen.  If you give me more than two minutes of your time you will know that heart disease can affect you and not just affect you but kill you.  Even if you don't give me a full two minutes I will still tell you I am a survivor.  I will tell you over and over and I don't care if you get sick of it. Why? Because it will stick with one person and they will call an ambulance when they need to--maybe it will be you.

I have a friend that had a heart attack two years before I did and still to this day her friends do not know.  She has a hard time with the word survivor.  Hers was not massive, but something she found out about after the fact.  She is ashamed she didn't know and ashamed that she let her health get bad enough that she had a heart attack. The funny thing, she can tell complete strangers but she is ashamed to tell those that she knows. I told her to hang on to her hat, I'll make sure she gets comfortable with the term survivor (I know you are reading this girl--you'll get there!) Not to say I haven't had my struggles with this journey but overall I think I've done pretty well.

I think what this shows is there is no right or wrong way to react to a heart attack.  Really there is no right or wrong way to react to any serious diagnosis.  Each person has to work through the journey their own way.  So, if you are new here and you have found me because you are searching the net to find information after your own heart attack, just know that you will settle in. I know the feeling of fear you are experiencing and I know you are pissed that you now have a lifelong chronic illness.  I have met enough people that have been through this and everyone handles it differently.  Every emotion is valid.

Sunday, March 16, 2014

How Do You Explain?

I have been pondering for the last few weeks how to explain the unfairness of very serious medical diagnosis to children.  There really is no easy way.  My children have been very fortunate in their lifetime not to feel the unfairness of life.  The worst unfairness they have had is the divorce of their father and I about 7 years ago and the first death of a grandparent this last fall.  There is so much tragedy and unfairness in the world that can't be imagined from our little town in Kansas. On one hand it is awesome that they don't know but on the other hand, life drips with unfairness and when it is never experienced, how can it be explained?

My heart attack was very scary for them.  Because I have been so open with the world about my experiences, they have been immersed in education about women and heart disease.  They volunteer with me at AHA--Kansas City events.  I am going to take them out of school this spring to volunteer with me at a Friday event.  It is of huge importance for them to see me take something really bad in my life and turn it into something really good.  The lesson is that life is what you make it.  I could have never not shared this and not spoken of it to them because for me that would have been be an impossible journey.  Perhaps this is not what someone else would choose and I would never fault someone for choosing not to share.  I took this chance to help and educate others and grabbed that bull by the horns.  Our lives are richer for it--richer for the people we have met on this journey that is strange, scary and beautiful all at the same time.

 I can set an example for them of how to handle the bad things, but what I can't explain is why the bad things happen. My middle school child has experienced a classmate and friend that has been diagnosed with leukemia.  She is very ill and currently cannot attend class.  The town we live in held a benefit last night in her honor if which she was able to attend.  My daughter and one of her friends went up to the rec center and were able to see her.  I think it frightened them because she is swollen and wearing a wig and from the description has some tubes attached (I didn't go because I have been very ill with strep and you certainly don't want to spread that to a child having chemo). I didn't see her appearance but I am not unfamiliar with how this treatment can change the appearance.

When my daughter got home last night I know she was looking for me to explain leukemia and then for me to tell her that her friend was going to be ok.  I want to tell her that but I also don't want to tell her that and then have her friend not be ok.  How much do you say to someone who is 12?  I found it incredibly difficult to educate and comfort because when you start explaining leukemia, there is nothing comforting about it.

So I turned the conversation to what we could do to help because I genuinely don't know how to explain the unfairness of cancer in a twelve year old (or in anyone for that matter). If I can't explain the unfairness to my daughter, imagine her parents explaining to her how sick she is.  My heart breaks for them and even though I don't know them, they are often in my thoughts.   This little girl loves Taylor Swift and wants to meet her--not that Taylor Swift will answer and I told my daughter this but I also told my daughter to get in and send and email and give it a try.  I am going to help her with that today. The worst that can happen is that you get an answer of no or that you don't get any answer.  You don't know if you don't try.  I had given her money for the things at the benefit--turned out everything was free so she donated the money.  I told her that although this does not seem like much, it is amazing what the little things can add up to.  It is a whole lot easier to explain that all of the little things that everyone in our community does for them adds up to a great big hug from our community for this little girl and her family.  All of the prayers that our community says for them, hopefully they can feel.  This is the lesson I teach because to teach the unfairness lesson is really tough to do and I don't know how to do it. 

I don't know how to do this because I still don't know how to explain why I got to live and 80 percent of women who experience what I did have the unfairness of dying. Why of those who do live my outcome has been so much better than others.  I'm quite sure in the end there is no way to really ever explain it. There is no way to explain why people suffer a devastating medical diagnosis; why some people survive a diagnosis and others don't.  It is not specific to heart attacks or cancer but is far reaching across many medical diagnoses.  I think what I teach to my children in the end is there is no  rhyme or reason and that is unfair. There really is no explanation of the unfairness but what you do with the unfairness is what matters.


Saturday, March 8, 2014

I Love February!

Happy Saturday morning to you!



I know I have eluded to the fact that I was in no mood to celebrate American Heart Month in February of 2012. Survivor was too new to me and I was not ready to embrace it. When American Heart Month rolled around in 2013, I was a little more ready to embrace it. I went to the American Heart Association-- Kansas City Go Red Casting Call.  After having been a Go Red Ambassador for almost a year, I was ready to full on celebrate survivor this year! I had some of the most fabulous ladies by my side while we celebrated!

On February 6, I summoned the courage for live TV and appeared on KC Live.  I haven't watched it because it is weird to see myself on TV but my friends tell me I rocked it so I guess I will believe them:.

That evening we went red at Hamburger Mary's:








 
 
On February 7 we celebrated National Wear Red for Women Day and my family, friends and co-workers turned out in style! They turned my Facebook page RED! You can see for yourself here. We also went red at The Red Dress Dash:





 
Now, I am not sure anyone will believe this but I have been the dedicated social media queen for the AHA KC in February!
 

On February 10, I had the great pleasure of speaking to staff at the American Academy of Family Physicians about women and heart disease.
 
On February 12 I spoke with the fabulous ladies at the National Association of Professional Women:

I did an hour-long radio program:
 
You can find the podcast here under February 23.
 
I  spoke to my women's group WOAMTEC.
 
I interviewed for a story in the Lawrence Journal World. Rock Chalk!
 
I shared the stories of Liz, Keri, Regan, Shelly, Monica and Teri. What fabulous stories! If you have not read them, please do--discover what makes these women so incredible!

We went red at RA Sushi:
 




Finally, we stepped out in style last Saturday at the Heart and Stroke Ball and Pulse After-party. What a great evening this was as Kansas City turned out in icy weather to raise $780,000!








What a great month!  Now we move forward and focus on the Half Day For Your Heart luncheon on April 25 and the Kansas City Heart Walk on May 31! The weather is starting to show a hint of spring after this brutal winter and I was able to get out at work yesterday at lunch and walk with my friend and co-worker Donita. The brutalness of winter leaves me feeling like this:
 
 
Ever the optimist I know that spring will come and the remaining cold days are just dancing the cha-cha with spring:
 

Even if it remains cold, this is still my favorite time of year! Selection Sunday is fast approaching and I have crimson and blue pulsing through my lucky to still be beating heart!
 
Rock Chalk and have a great day:)! I hope spring is fast upon you no matter where you live!



Tuesday, February 25, 2014

Teri's Story--Stroke in her 40's


I am so excited and proud to share Teri's story with you as American Heart month winds down. Teri is an amazing woman and a real testament to resilience. Teri is one of my Kansas City Go Red Ambassador heart sisters too. I cannot tell you how fortunate I am to be part of this group of such beautiful, amazing survivors!  I am also so honored they have allowed me to share their stories during this very important month for all of us! Enjoy and learn from Teri's story!


 


I have been a nurse for ten years and a primary stroke care program coordinator for five.  I have worked with the American Heart Association of Kansas City and the community that I grew up in for five years, educating about the signs and symptoms of heart disease and stroke, and working on data and quality improvement initiatives.  I am also a runner!  I have run for thirty years of my life.  I got more serious about two years ago.  I stepped up my game and in January of 2013 started training for my first full marathon.  Those are two roles in my life that people identify me with; but my most important role is being a Mom to an amazing seventeen year old son named Parker.





In a twist of fate Memorial Day 2013, I had a stroke, while driving home from Starbucks with my son.  Because of his knowledge and ability to keep calm, he got me to the nearest primary stroke care center ½ a mile away so I could get lifesaving treatment fast.  Why does a healthy 43 year old runner have a stroke?  I found out that I had a congenital heart defect that caused my stroke, as well as a heart arrhythmia called atrial fibrillation.   I had been without symptoms my whole life.  It can happen to anyone.

Twenty-six  days after my stroke, I ran that marathon I had scheduled, with the support and unconditional love of my husband and son, as well as my priceless friends and family.  I ran a second one before I had the heart defect corrected to prevent further complications.  I am on long term blood thinning medications as well as medications to control my heart rhythm and rate.  Even though everyone wanted to wrap me in bubble wrap and place me in a corner, they knew I would slowly wilt.  They watched as I took the leap of faith, they believed in me, as they watched me learn to fly.



I have four marathons scheduled for 2014, and each one of them will be run in honor of all the women and families that heart disease affects.  My stroke didn’t only change me physically, it changed my spirit, it changed my clinical practice, and it changed my resolve to educate and advocate for women’s heart health.
 
JFK stated “One person can make a difference, and everyone should try”.  Those are words I live by every day.  If I can help prevent another person from having heart disease or stroke, I am over the moon.



Watch Teri tell her story.