We came to New Orleans as 11 strangers and left as life long friends

My Research Legacy Inaugural Patients

They call it the Big Easy, but it was far from easy when I met the other participants of "My Research Legacy" in New Orleans this week.

My emotions were all over the place. My heart was racing, palms sweating and all week I kept quietly thinking to myself please don't  let me get a big zit on my forehead. You are probably laughing at me, but stress can do crazy things to your complexion!

As soon as I walked into the room, I could feel the amazing connection that I had with complete strangers. We all had one thing in common a life changing event. In this case, it was a heart attack or stroke. It's a club I never thought I would be apart of, but now I know that everything happens for a reason and this is my REASON!



The room was filled with survivors who covered every corner of the U.S. As we went around the room and introduced ourselves and discussed our stories you started to see all the connections we shared.

The emotional questions of Why me, Why did this happen, What can I do to prevent this in the future, Were questions that we all had asked ourselves at one point or another post heart attack/stroke. To say an instant bond occurred is an understatement. This relationship was cemented the minute each of us shared our stories and is one that I feel can never be broken. It was amazing to feel like I was surrounded by people who had walked the same crazy path as me and now we're trying to better others.

The similarities we share made the hair on the back of my neck stand up. Many of us had been long distance runners in the past, and some are currently training to run marathons this year. I have to say I'm a little jealous since my cardiologist told me no running until my one year anniversary on Feb 10th, 2017 after he conducts a stress test. Ugh, frustrating but I'll wait. Don't want to stress the old ticker out too early. Three of us were nurses who had worked with heart attack and stroke patients., but when we had our event none of us wanted to believe it was happening.

As I sit in the airport in New Orleans waiting for my flight, it's hard to express in words what the last few days have meant to me as a heart attack survivor. I was asked to be part of a new research group for the American Heart Association called "My research legacy." This group is comprised of 11 inaugural patients, who like me, have been diagnosed with a heart attack, stroke, atrial fibrillation, aortic dissection or systolic heart failure/cardiomyopathy between the ages of 21and before 50. The hope for this research is to get 1,000's of patients involved to share their personal data to drive next generation heart/stroke research. "Leave your Legacy" is our theme and defines why we have chosen to be members. I want to have my data used for good to prevent others from having to go through a life-altering event.

If you are a heart attack/stroke survivor between the ages of 21 to 50 when you had your event, I encourage you to sign up for #MYRESEARCHLEGACY 

The American Heart Association's motto is "LIFE IS WHY"  but for me my motto is "MY FAMILY IS WHY."

https://youtu.be/W17r49dyHwc

Cocktails... a fun drink to now a life saving medicine

Cocktails, they were fun drinks now they are a delicate balance of medications to treat my pain while keeping me healthy. Last year at this time, I would have enjoyed a glass of wine on date night.. now  the thought doesn't even enter my mind.  They say a glass of red wine is good for the heart but to me all I can think about is the effects it can have on my blood thinners. Will the alcohol cause my blood to get too thin or too thick? It's truly amazing how those tiny little pills can have such a life saving effect on keeping my two stents open.

 Its hard to believe its been almost 8 months since my heart attack. I have struggled with chest pain off and on since that crazy night. As many of  you know, those painful events have caused 4 additional nights in two different hospitals. And the crazy, frustrating thing is when we get discharged we have  more questions than answers.

Today as I write my blog I look at my pill box that has now been turned upside down and inside out. What you ask is she talking about? My doctors have decided to go back to the night I had my heart attack and start from the beginning. It began with a call to my doctor 2 weeks ago saying I needed to be seen for chest pain. They were able to get me in right away and as I sat in the office waiting for the doctor I could see the nurses had a funny look on their faces. Hmmmm. I wondered what do they know?  They began to ask me questions about why brought me in. I stated I was having chest pressure and pain. Right away they did an EKG which was normal.. Of course it is silly.. this is just me! Chest pain, pressure and no EKG changes Thank God!!

The doctor came in put her papers on the desk and said Melissa, Melissa, Melissa what are we going to do with you? I said I know right? I was a normal, healthy lady until I went and had a heart attack and now I can't stop getting chest pain. She said that they went back to the cath lab that morning before I came in and reviewed my films of the actual heart attack on 2-11-16 and the films from my cath procedure in Iowa City in July.. and all LOOKED GOOD!! She said we are starting from the beginning with you. We think you are having continued vasospasms in your artery from where the stents are. She stated there can be many reasons, first I'm young and my arteries aren't rigid which normally is the case in older people. Also, some of the medicine can be causing this. So... leading to the pill box discussion, throw this away, start taking this and you no longer need this.

 After two weeks of medicine changes I am feeling great! The chest pain is minimal and I feel like a whole new women.. I know the song " I feel like a women" just popped up in my head too. Hind sight is 20/20 and I wish we would have figured this out say.. 7 months ago but at least we have it figured out now. One of the side effects of my new meds is a slow heart rate and low blood pressure.. But as I tell Brenna as long as I'm talking I'm okay.

I am going to post a link to the American Heart Associations support network for you out there that might need a little support along this crazy journey we call recovery supportnetwork.heart.org
I find it an amazing resource to reach out to people who have either been in my shoes or are trying to prevent a heart attack or stroke.

 In the end:

FRUSTRATION.. what came first the chicken or the egg?

Frustration has become an all too normal part of dealing with the medical specialties for me lately. Ever since my heart attack was linked to a dissection of my right coronary artery due to the use of birth control I have been battling between Cardiology and Gynecology. Never did I think,  2016 would be the year of my heart and uterus..(say that five times fast)  two organs that I've never given a good deal of thought to until now.

 Many women these days take birth control to not just prevent babies but to help with cramps, bleeding and for many other reasons.  I myself had to be on birth control due to bleeding issues. Was it my first choice... no! But what else do you do when you're using feminine pads as big as the Titanic, and it's still not enough?? (Too much information I know.. but we've all been there)

In nursing school, I was taught about the effects and adverse events of birth control and personally made the decision to become a long time birth control user. Looking back would I have done things differently?  I'm not sure. Hindsight is 20/20 and at the time that's what worked for me. Remember, what is right for one person may not be right for others. Thank God we live in a country where you have personal freedom over your health care decisions. This blog is my personal view and may not be right for everyone.. Have this discussion with your doctor and decide what's right for you.

That brings me to today and the reason I'm writing my blog.
On 2-11-16 the day of my heart attack my Cardiologist told me in a very stern voice to never take any hormones again. I listened and then again had to deal with the bleeding issues. Leading now to a heated debate between me, and my gynecologist. Gynecologists don't want to believe that birth control caused my dissection. They chalk it up to something else. Although I have told them time and again that I have NO CARDIOVASCULAR RISK FACTORS. Here is where the FRUSTRATION comes in. Yesterday, I had to have an outpatient surgery and as I'm telling the Anesthesiologist my history my Gynecologist is looking at me like I have three eyeballs. Ugh!! I again tell my gynecologist after the procedure I don't want to use any hormones to control the bleeding even if it's just progesterone or an IUD. I can see by the look on his face he is like " would this chick stop already."  Nope!! Buddy, I am a nurse, women and I've done my research, and I won't take any more chances with my life. I only get one, and I will be the strongest patient advocate... so watch out!

In the end, there will always be two sides to every issue... What came first the chicken or the egg? What caused my heart attack? It depends on who you ask. For me, my faith lies in the hands of my
Cardiologist. He was able to see my heart in the Cath lab while doing my angiogram and placing my two stents. At this point, it doesn't matter.. I just want to make sure that it NEVER HAPPENS AGAIN.

If you take one thing away from my blog today, is to be an ADVOCATE! Don't let frustration make you silent. Ask questions, do your research and if you feel uncomfortable with what you hear .. Don't give up. Stand up!
Get a second opinion if necessary. You are in charge! Just like people, doctors can also have high variability in how they treat you not just medically but also compassionately.. Although I've only mentioned Cardiology and Gynecology today remember this can happen in any medical area. I continue to ask you to be an advocate no matter what type of doctor or health concern you are dealing with.

Enjoying every second of my life.. while preventing a second heart attack!!



Not letting my heart attack slow me down... Enjoying every day!

Just one second. I feel like I've been told a hundred times had I waited another second, a minute or for sure 30 minutes I wouldn't be here today! I read recently that the American Heart Association has a new campaign "Don't wait for a second." When reading through this, I started thinking what am I doing to prevent a second heart attack? I graduated cardiac rehab with a few hiccups along the way.. not many people can say they that cardiac rehab sent them home and said come back next week. ( Yep, acute pericarditis got the best of me) My chest pain would come and go that my speed on the treadmill would make a turtle laugh! I quit caffeine cold turkey; boy was that painful. I remember asking for Diet Pepsi in the hospital due to a major headache not realizing it was caffeine free on the cardiac units. (UGH!!) Detoxing off caffeine was similar to childbirth, ouch!! I no longer drink alcohol. My glass of white wine when on date night with my hubby is a thing of the past.
You are probably wondering why in the world would I give all this up? Simple, I will do everything possible on God's green earth to never have to experience the sights and sounds of a cath lab!!

Below are the five steps that American Heart Association Recommends for preventing a second heart attack:

1. Take your medicines
2. Manage your risk factors
3. Get Support
4. Connect with your doctor
5. Participate in cardiac rehab

Here is how I manage to incorporate the five steps into my life on a daily basis. Keep in mind I am by no means perfect. I sneak in a burger and fries every once and awhile.. ok, maybe a little more frequent than that! But, remember we are all human, and we have been given a second chance at life so give yourself credit when you do the best you can at prevention.

1. Take your medicine: I am a fanatic about making sure I take my meds every day. This is the nurse in me. I have a pill box and fill it every Sunday night. Crazy, aren't medicine boxes for nursing homes? Nope, its the new cool thing to display on your countertop!  If you don't have one, be sure to run out and get one. Medicine is only one piece of the puzzle to prevention.... So always keep it as your #1 priority.

Bruises.. Bruises everywhere. The day folding laundry became dangerous!!
The side effects of blood thinners.. they keep the stents open but makes you look like a pin cushion

2. Manage your Risk Factors: This can be tough because some risk factors are modifiable, and some are non-modifiable. I maintain my modifiable risk factors by taking a statin to keep my cholesterol low, and I follow the cardiac diet( I know this can be very trying at times.. but it does the body good.) I try to make simple changes everyday like eating white meat, vegetables and fruit, and little to no salt. I walk every day and don't smoke. The non-modifiables are a little harder to control... I can't change my family history or age.. which sadly just keeps going up every year!! Always keep in mind that stress can contribute to heart disease. As Mark Twain says " I've had a lot of worries in my life.. Most of which never happened."

3. Get Support: I have relied on my family and friends to get me through this crazy experience! We have talked about my heart attack five ways to Sunday. It seems like every once and awhile the thought of "WHAT IF?" sneaks into my thoughts. TALK, TALK, TALK.. don't let your wandering mind get the best of you. You're alive.. make it worth it!!

4/5. Connect with your doctor and Participate in Cardiac Rehab: I lump these two in the same category because they go hand in hand. My Cardiologists and the nurses in Cardiac Rehab helped me so much! I had faith that they knew what would be best for me and let them guide me through the process of recovery. I went from running half marathons to barely being able to walk from the couch to the bathroom without being short of breath. My heart attack was truly a life altering the experience. Cardiac rehab not only got my endurance back but my confidence and security that my heart could handle a little kick in the butt and be ok!

As I finish writing my blog tonight, I celebrate six months post heart attack. I describe my heart attack to my friends as a crazy journey. I've shed many tears along the way, had hiccups in my recovery and experienced four additional nights in the hospital. But I won't let this get the best of me. I have a second chance at life, and I won't take it for granted!! SO... PREVENTION IS THE KEY TO NOT EXPERIENCING A SECOND HEART ATTACK!! Control what you can control, smile and just breathe.

Oooops.. it happened again! Another hospital stay and still no answers

Just when I thought things were back to normal.. my heart decided it was time for another 2 night stay at the Holiday Inn.. I mean University of Iowa Hospital. It was a beautiful Sunday and we were driving back after having an amazing time with my sister and her family in Florida. I started having chest pain on Saturday but thought it would go away. And.. nope the next day it got worse. I finally told Joe and we ended up going to a rural hospital in Mt. Pleasant, Ia. The ER was small and really made me concerned that what if something happens to me? Do these people know what to do? My worries were cast aside after the amazing care I received. At first, they thought I had a blood clot from traveling but due to my history they decided to transport me to U of I for further follow up. One ambulance ride later, many hours in the ER and at 3AM finally a room!

Nitro drip, heparin drip and many pain meds and I still was continuing to have the worst chest pain I've ever experienced. All the tests were done, EKG, Echo and blood draws and still no answers. Frustration is an understatement! All I could think about is I do not want to go through this again only 5 months later.

They decided to do another angiogram in the cath lab to rule out another dissection. Since my heart attack I have done extensive research on this topic SCAD- Sudden coronary artery dissection. The Cardiologists in Iowa City tell me it’s rare and has a high percentage of reoccurrence. Thank GOD the angiogram was negative.. My stents are working like a charm. All they could conclude is that the Heparin did its job and busted any clot that was causing my chest pain.

Fast forward to today.. I take my son for his high school athletic physical and it hits me smackdab
in the face.. THE QUESTION !! HAS ANY FAMILY MEMBER HAD A HEART ATTACK AT LESS THAN 55 YEARS OF AGE? For years, I have been filling out his form and like a robot mark NO across the board for his health history. And then the question I've never noticed or maybe never read until today.

The infamous question!

 



This leads to a million questions (well maybe I'm exaggerating a bit) from the nurse practitioner and I again have to tell my story. I so wish I could go back to the day where I was boring and continued to mark NO on health history sheets. But, it goes back again to this now being apart of whom I am and what my kids now have to answer on health forms.

When looking at my heart attack I continue to look at it as a hidden blessing. I live each day to the fullest and no longer take life for granted. I use to continually get stressed about the little things.. but it’s funny once you think you may not get a chance to fret about the little things in life you begin to laugh it off and LIVE!!

 

 

 



3-31-16/ The day that almost....

Before today, all birthdays were a day of celebration, gifts, and cake!! Today takes on a whole new meaning. Last night before bed I said my prayers and thanked GOD for giving me tomorrow. Tomorrow, why would I have to be thankful for tomorrow you ask? Well, until this year I had always taken for granted that March 31st would come. In the past, it symbolized the day I got to drive, my first beer and then last year turning the big 40!! Joe had always told me that when you turn 40, you start to fall apart. I laughed at him and thought he was nuts! Well, Joe you were right beyond your words. I had my first set of stitches from a pizza cutter incident, diverticulitis, and the big Heart Attack! Yikes, let's hope 41 is a better year.

Not only did I fall apart I almost lost it all. I sit here and write this blog post today with tears filling my eyes. Crazy right!! I should be over the moon excited that I get to go out to eat and have Birthday Cake ( Heart Healthy of course... maybe not), but all I can think about is that this day almost didn't happen.

There is no playbook that the nurses give you when you leave the hospital.( How I wish there was!) It would have chapters such as 1. Happy Days that now take on a new meaning. 2. Emotions beyond emotions. 3. Sam's Club memberships for Kleenex. 3. Grieving the old you. 4. Family, strengthening the ties that bind. 5. Never taking anything for granted. 6. Exercise.. The turtle vs. the rabbit. 7. Cardiac Rehab, bonding with strangers over your common bond.

It's been fun getting all the birthday wishes on Facebook and texts from friends and families. Although I will have to admit I have had many tears, they are happy tears. Tears, that I have so many loved ones in my life. Friends that I haven't talked to for years are reaching out. As I sit here and write I listen to the 10,000 Maniacs and their song These are the Days.  A song that holds a deep meaning. Joe and I call it our song, I listened to it over and over when my dad passed to remind me that life must go on.  And today LIFE DOES GO ON!!  In the song, it says " These are days that  you'll remember, never before and never since I promise."  Although these last seven weeks have been hard as crazy as it is to say, I wouldn't change the experiences I've had. It has made my family slow down and begin to enjoy every moment of every day. We find ourselves laughing more. Parker's favorite quote is "Mom, did I just give you another heart attack?"  Humor makes us who we are.. and everyone needs more of that in their lives!!

 

 

Joe for my birthday this morning gave me the Pandora Heart charm for my bracelet! It sparkles, just like my true heart.. for the new lease on life GOD has given me!! Both Julie and Jennifer gave me the bracelets above it. The Circle represents the path of life and the sailboat the journey.

 

 

Tomorrow I graduate from Cardiac Rehab!! I will be holding my diploma high. As one chapter in my life ends another begins!!



Starting new.. time to put the blood pressure cuff away

Monday begins a new chapter in my life. I am going back to work after five weeks off and ready to get back into the swing of things.(well, maybe not that excited about it) Today I looked at Joe and said: "its time to put the blood pressure cuff away." That cuff that has sat beside me on the coffee table for many weeks for those times I felt light headed and dizzy. I don't feel the need for it anymore since they finally have my medication on the right track, and I'm able to walk more and not get so short of breath.

My new start on Monday will include both work and cardiac rehab. I won't lie to you I am nervous to begin work again. I feel like I am so far behind and have no idea where to start... I guess I'll just open up the emails and take them one at a time. I have made a promise to myself that I am going to try not to get stressed out! (ok.. manage my stress better). We all have experienced that feeling of doom and gloom after coming off vacation, opening up your computer and seeing the long list of emails and wondering what do I do??? These last five weeks have not been a vacation..I have struggled both mentally and physically to understand what happened to me and how to keep simply just putting one foot in front of the other.

At the beginning of this experience, I had dreaded going to cardiac rehab and getting asked " Why are you here? You are so young? What happened?

Now, that I've gotten to know my group members I look forward to seeing their smiling faces three times a week. Over the last two weeks, I have had members of my cardiac rehab group graduate from phase 2 and begin phase 3. (I'm currently in phase 2 until April). I hate to say it, but I find myself sad when they graduate and leave me behind. Don't get me wrong I'm excited that they are doing well enough to be able to move on, but I miss having conversations with them on the treadmills.  I look forward to the day that I graduate from cardiac rehab and yet put another stage of the healing process behind me.

The other day on the treadmills the conversation among the cardiac rehab group was longevity. They talked about many of their siblings and parents having had heart attacks as young as 45 years old. I almost fell off the treadmill.... wow, I have that beat!!!  Now, I can see Brenna and Parker at their doctors appointments checking the box for family history of heart attacks. Up until this point, I had looked at my longevity as how long my grandparents had lived. I never once thought about how my heart attack would now change the course of my kids longevity conversations. I had always thought of my longevity line as being amazing long. All my grandparents had lived well into their golden years. When I filled out my life insurance almost 15 years ago, I was considered high risk because my dad had passed away from lung cancer. Not heart disease, not a heart attack or stroke. It's truly amazing how one split second can alter not only your life but your kids. When I use to go to the doctor, and they would ask me what medications I was taking I would say one.. and joke with them about how boring I was. Now, I pull out my medication sheet and go from nuts to bolts about the medications I'm on. My family doctor said not many patients surprise me, but you make the top 5!

NCAA Tournament 2nd round!

This experience has forever altered not just my life but also my families. I appreciate all the kind words over these last few weeks. I don't know how I would have ever gotten through this without the love of my friends and family. Although Monday will bring a lot of emotions and a new definition of me.. I'm ready to get back into life. This weekend I began to increase my activity level and although at the end of the day I was extremely tired it was SO WORTH IT!!

Below are some pictures of me beginning to enjoy life again as the new me.. Sure I now pack two stents in my right coronary artery, but I also pack a new beginning.. This heart attack will not define who I am as a person or limit what I am capable of! It is just a blip on the radar of life... WATCH OUT WORLD BECAUSE HERE I COME!



St. Patrick's Parade 2016