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.

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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."

Caregivers.. the unspoken heroes

November is National Caregivers month and I don't think I could ever say THANK YOU enough to the people who have supported me along this crazy journey post heart attack! Hero's come in many shapes and sizes..  from the cardiac rehab nurses who gave me the confidence to push my heart on the treadmill post stent to the overwhelming hugs, smiles and hand holding from my family members and friends.

It's funny, how one moment you're going to bed and just a few short hours later your husband unknowingly steps into the role of primary caregiver the moment he dials 911. He was not only there to help me but he had to get the kids ready for school, help with homework, take them to their medical appointments and  continue going to work. The hardest thing to convey to our caregivers is how much we appreciate all they do for us. How do you ever express your gratitude to someone who steps up and unconditionally says its gonna be ok, don't worry we got this?

Joe, my husband was not only there for me physically to help with daily activities but also emotionally. I don't know how many times I cried on his shoulder and told him I was scared about my mortality. We had to have discussions that I never imagined at the age of 40 we would be talking about. The "what ifs" never seemed to stop circulating in my head.

People stepped up to help in so many different ways from my mother-n-law walking with me around the block to make sure I was ok.. to friends and family calling to talk and ask what they could help with. Care giving doesn't have just a physical aspect but also an emotional component. I remember laughing on the phone with my sister while sitting on the couch and ordering groceries.   I remember saying this is actually saving me money because I'm not throwing things in my cart that I don't need. My sister has no idea how just a silly phone call about groceries was such a blessing during a time where I needed to laugh.

When I really look back at all the people who have helped me over these last 8 months there are no words that could express my gratitude.
The quote above says " caring is doing what has to be done
and not expecting anything in return." Caregivers never ask for anything in return and are always there in your darkest time. You find out in times of difficulty how wonderful and caring your friends and family are.

In the end, the best way to thank your caregivers is to lead by their example and  to step up and be a caregiver when they need your help!

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.. nowthe 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 havemore 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.

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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!!

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.

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

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.