Want to know how you can help? Here’s my tips below:

1. Listen and follow their lead. Its really quite easy but so many people misstep  here. Listen to their words when they answer they are just okay (because usually they are feeling worse than they are letting on). Listen when they say they want to go do something and act on it. It usually means they are feeling good that day and they often know the next day could be quite different.
2. Don’t tell them they are “fixed now”. I have been told this multiple times by well meaning people. I am not some toy that you put a little glue on the wheel and its good to go. I had major heart surgery people, they cracked my chest open, attached vessels from my leg to my heart to restore blood flow and closed my chest with seven sternal wires. It didn’t fix me and it didn’t even heal me, all it did was manage a problem, I still have heart disease. Telling someone they are fixed, doesn’t take into account the physical, emotional or spiritual suffering the person is going through. Just don’t say it, we don’t like it. We will never be fixed, just healing.
3. Be Patient: Remember you are not going on this journey FOR us, but WITH us. You can witness an ounce of our suffering and help us with the simple tasks, but we are carrying the weight of the burden of our disease. Those first few months after any procedure are scary and emotional. We are trying to navigate what our life will look like now,  so be patient. Listen for the 19th time about whatever is going through our head. Don’t be frustrated when we cancel on you at the last minute, any good heart patient learns to listen to their body.
4. Give them a break, but also give them a push when needed. When they are cranky or tired, give them a break. Even just getting up to shower, get dressed and make breakfast, often tires us out, especially at the beginning. Not to mention once we take our 15 morning pills, we are prone to any less than stellar side effects. Often times, we usually don’t intend to be mean, we are simply just tired, in pain or both. But also don’t be afraid to encourage us. We like encouragement. Invite us out to dinner, or even bring dinner in. Come in your PJs and watch a movie with us. There can be a lot of social isolation with heart disease, especially post surgery and sometimes we need a little encouragement.
5. Have a heart of compassion, not pity. Please respect our privacy. When you ask us how we are feeling, please respect our answer and not press for more answers. We learn early on after our diagnosis to build a support system. Those are often our closest friends. They know everything, our medicine side effects, our fatigue, our concerning symptoms, our emotional battles with ourself. And our support system listens with compassion and helps us along the way. If you are more of just an acquittance, still let them know you care, and ask how they are doing, to show compassion, but also respect the person if they aren’t willing to share more info. Trust me, showing compassion and placing the heart patient first before your ‘need’ for more information, means a lot to us. We love being cared for!
6. Be a supporter of your “Heart Patient” friend, cousin, niece, nephew, aunt uncle. All Open Heart Patients wear a ‘badge’ of honor on our chests, it goes about 8 inches down the middle of our chest. You can usually catch a glance if you look about an inch under the collar bone. Sometimes we wear it proudly and other days its a unfortunate reminder of a very serious illness we fight. It gives us great encouragement when our friends, family members and support system proudly “rock the red” in honor of heart disease, donate to heart research or even participate in heart walks. Its a reminder we aren’t in this alone. It doesn’t take much to rock red for a day, we are rocking it everyday.

“You know this is a privileged time, don’t you?”, he said. I looked him straight in the eye, trying to wrap my head around what he said.He continued on…”this is a privileged time to seek God”.

…I smiled and agreed.…If he wasn’t a priest, I would have probably thrown the heart shaped pillow I was hugging, trying to keep my sternum safe, right at him.

…It didn’t feel privileged as I sat there in pain, hugging a pillow and praying for relief.

….it didn’t feel privileged when I couldn’t even put up my hair, get dressed or even get out of a chair, without help.

…It didn’t feel privileged to have a Heart Attack or triple bypass at 27.

…It didn’t feel privileged as I dealt with lingering emotional and physical pain as the reality of what the new normal in my life would look like.

It didn’t feel privileged at all. But in reality, it is one of the most privileged times of my life. I have learned a lot..

I have learned that life is precious and each day is a gift. 

I have learned that being strong doesn’t mean not asking for help, it means being courageous enough to ask for help when you need it. 

I have learned that its okay to be scared, sad, fearful, ashamed, because that is what your heart is feeling. No one is walking this journey FOR you, they are walking it WITH you. You have to allow yourself to feel, so that you can allow the Divine Physician to heal you. Oh…and to keep stress off your heart. 

I have learned that some days are better than others. Sometimes the emotional wounds are bigger and other days the physical ones. Thats with anyone in life, sometimes our wounds just hurt a little deeper…no like really, they physically hurt, its called angina.

I have learned that I am not what happened to me, but that it did happen to me. I am a beloved child of God. Will I always be a heart patient the rest of my life? Yes. But it doesn’t make me who I am today.

So, I guess I will give Father credit that this is indeed a privileged time. A privileged time to seek the Lord. To rest in his presence. It is so easy to settle into frustration, despair and anger as life throws you a curve ball, but the victory of the heart comes when you choose HOPE. That little part within us that says, I can do this another day.

Did you know that CABG is not the shorthand version of cabbage?

The nurses threw the word around like it was no big deal. What were they talking about? They kept telling each other that I was having CABG in the morning….Uh, excuse me..but I don’t like cabbage, I kept thinking. Come to think of it, I don’t like cabbage or CABG.

Part II of the Story…

…A few weeks after my first Cardiac Cath and Stent, I started having tightness and pain in my chest again. Just a few weeks prior, I had completed a Stress test to be cleared for and had begun Cardiac Rehab. I called the cardiologists office, to see my doctor, who told me to come in that afternoon. I sat in his office, in pain and he asked me, do you feel pain right now? I verbally answered, yes…but what was going through my head was a little less charitable. He told me it was probably just anxiety, but to be on the safe side, he wanted to keep me for observation and run a few more tests.

The next afternoon, I was taken down to the first floor (I am pretty sure, they do all Cardiology tests on that floor, because I’ve spent a lot of time there). I was greeted by another physician from the practice who I did not know, and we began the test. I mentioned again that I had chest pain and they stopped the stress test and quickly sent me over for cardiac imaging. Everything looked good on the tests. But after the test, the pain was worse. Nothing indicated it was heart related from the test. The hospitalist thought it was maybe GI related and added another antacid to my mix of medications. I was discharged the next day, but mom and I were both unsettled, something was not right.

I returned to the cardiologists office a few days later and we tried different medications for a few weeks. Because I wasn’t the most obedient Cardiac Patient and I hated the nitro headaches from the nitroglycerin tablets, I was to call and go to the ER for chest pain longer than 10 minutes and was instructed to, “take your nitro!”. Over the next few weeks, I continued to experience random fits of chest pain, at rest, walking, climbing the stairs. He also had me meet with GI and schedule a Endoscopy.

That Sunday, I was at the chapel at church when I saw the cardiologists name come up on my phone. Its never good when your doctors office calls you on the weekend, so I left the chapel to pick up.  My doc was in the office and calling to check in. I told him that I didn’t think the medicines were working right. He told me again that, based upon the tests results and the fact that the medications should be working at that point, that  then it probably wasn’t cardiac.. But he suggested doubling a dose and calling back if it got worse.

That Monday, I was sitting in a meeting at work, when the pain got really bad. I thought maybe I was hungry (don’t ask me when the pain in my chest was because I was hungry, to this day I have know clue, so I ate lunch (also knowing if I was headed to the ER soon, it would be hours before I would be able to eat again). My 5 tips for surviving ER/Hospital stays, coming soon. After that I went back to the office and grabbed the Nitro and God bless him, headed to one of the priests office and told him I needed him to time 5 minutes and distract me. He prayed daytime prayer and at 5 minutes I took another dose of nitro, and again at 10. I don’t remember much of those 5-10 minutes, except that I was in pain and that at one point I closed my eyes while Father prayed daytime prayer, only to have him exclaim, “do not fall asleep or pass out!”. After no relief, I told him it was time to go to the ER.

God Bless Father, who accompanied me to the ER and we waited for the Cardiologist. He also had the fun job of calling my mother to let her know where we are. The cardiologist arrived and said he didn’t think it was cardiac and that he would send me home. I stood up for myself and kept pushing and asking then why does it keep happening. He left the room, only to return less than 5 minutes later. I talked to Dr. Yale*, the cardiologist who did my Cath and Stent. (not his real name, but what we will call him on this blog) and he would like to repeat  your Cath, tomorrow, to make sure the stent is open.

Soon after, mom arrived and we prepared again for another stay in the hospital and another Cath. The next morning, I was taken down to the Cath Lab again. Being me, I greeted Dr. Yale*. with a smile and “have you done this before?”. He answered jokingly, “yeah, once on this one girl, six weeks ago. I am going to talk to your mom and then we will get started”. They prepped me while he spoke to Mom. He came in and we were ready to go, the medicines were started, so I was gladly in la-la land. I knew something was wrong, when I heard him ask for another doctor to be paged for a consult. My BP and HR started increasing so he asked me if I wanted more meds, to which I quickly responded yes.

We finished and he came to my side, to let me know that he found something, but had not treated it with another stent, and that we needed to talk about options. He would let me get settled back upstairs and would see me shortly. All I kept telling him that if it was possible to switch cardiologists, that I wanted him to be my doctor now. He kept assuring me, “I will be your doctor and we will fix this”. What was “this” he was referring to? (Up to this point, I had been under another cardiologists care, except for my stent placement by Dr. Yale who is an interventional Cardiologist)

Mom and our dear friends, met me outside the Cath Lab and all I kept saying was, “we aren’t going anywhere” as tears streamed down my face.

We got upstairs and waited for Dr. Yale*. He arrived at my bedside, sat down and said that we had a problem, three of my arteries had serious blockages. The main artery feeding the blood supply to the heart was only providing 40% of the blood supply to my heart.

I had passed all previous tests, because of what they rarely see in someone my age or at all and what they call and  “balanced ischemia”, or that my whole heart was getting the same (lack there of) blood supply. It would have shown on tests if one artery had a lack of supply, but the whole heart had decreased supply. It was of no fault of any cardiologists reading of the tests, my heart had ‘tricked them’. Looking back we have learned multiple times how my body has tricked them throughout this process. Come to think of it, I think they should call my case ‘tricky’ not complex.

There were multiple options to treat it, we could stent them (less risky, but also less chance at quantity of life/need for future procedures) or do open heart surgery and do a bypass on all 3 arteries, or do a bypass on the main one and stent the others. Because of my age and never seeing disease that had progressed so much in someone my age, Dr. Yale asked for 24 hours to consult a number of colleagues, former classmates, etc. He would return the next morning with what he thought was the best idea.

One of his colleagues, arrived that night, while Mom had gone to grab dinner or something in the cafeteria. He came with a picture of a heart and explained where my disease was. He also explained that there was no data for them to go off (let me tell you this is not reassuring). Come to find out, the team of cardiologists were all leaning towards a Bypass or Open Heart Surgery, and that he was only simply to talk to me about the various options and not indicate that. He explained that they would not know how this was going to go or how long the grafts would last, but at best 10 to 15 years. I would grow as cardiology evolves. He also told me I was lucky they found this, or someone would have found me in 2-3 weeks. I had also been told weeks prior, had I not been in the cardiologists the day after my heart attack, I would also not have been found alive. The doctor told me, “someone is looking out for you”. I said, I know. (God!)

The next morning, Dr. Yale arrived along with the other cardiologist, that I had ever so kindly kicked to the curb. He let me know that he still believed surgery was best. I politely asked his colleague if he agreed and he sheepishly said yes.

He left the room and Dr. Yale sat in the chair next to my bed. He answered all my questions until they were all answered and assured me that the Surgery team would take great care of me from here on out and that he would see me after surgery. He stood at the foot of the bed before he left and told me, “Kristin, I am going to be honest, this is going to suck, you are not going to like me or life for about 2 months, but by month 3 you will be on the road to loving life again.” I smiled and knew I was going to like this Doc.

They prepped me for surgery over the next few days, running various tests, bringing in the surgical care team and meeting with the surgeon. He told me with his southern draw, “you are my youngest patient ever and I’ve been doing this for 30 years, but I will take good care of you, young lady”. 

Surgery day began early with a trip down to Pre-Op, meeting with the anesthesiologist. I told him, as long as he kept me out, we would be friends forever. He told me he was going to administer the medication and to count backwards. The next thing I knew, I was in the CVICU and on a ventilator. I wanted the tube out of my throat. They told me to calm down, and pushed some medications, as it was too soon to take it out.

Later that evening, the vent was removed and I finally saw mom, who quietly prayed the rosary in my room. Her telling me that she was going to sit in the corner and quietly pray is one of my first memories. I don’t think she knows how much comfort it brought and still brings. She and my aunt slept out in the waiting room that evening on chairs. God bless them both. That first night was trying to figure out what pain meds my body would respond to. It was miserable.

The next morning, they had me up and wanted to move me to a chair. I really hated life at that point and even more so when some sunny physical therapists arrived to get me to walk across the room. God bless them, because I am pretty sure I was not my pleasant self that day. Later that day, they had me walk to the step down room, down the hallway. If I said every word running through my mouth, I would have needed a priest in there STAT for Confession. Forget the fact that I told them I was glad I was on a heart floor because I was pretty sure they were trying to kill me getting me walking that soon.

My cardiologist arrived later that day, saying “I came for my medicine”, knowing I was not going to be happy, I quickly replied, “we are not friends!”.  He told me not to look in the mirror because I wouldn’t like what I saw, as I was all swollen from surgery and the bandages had been removed from my incision at that time for a little bit. Of course, I looked. It wasn’t pretty, but I was alive.

That day and the day that followed, were filled with getting me to try to eat, go to the bathroom, sit up in the chair, walk down the hallway, and climb a few stairs. Day 3 was supposed to be discharge day, but it was my worst day, and so my cardiologist had them hold me for another day. My sweet night nurse S, was with me day 2 and 3 and worked hard to keep me on pain meds and comfortable. She was the best! Day 4, Dr. Yale arrived and I greeted him with a smile and told him, I kind of liked him that day. He along with my surgeon gave the all clear for discharge. Little did I know what the future was going to hold once we got home…

My aunt drove us home, as I sat in the back seat, clutching my heart pillow (provided by the hospital) to protect my broken sternum as it healed. Every bump in the road was painful and every movement caused extreme pain. God bless my mother and aunt those first few days, and our support system in the weeks that followed. They were hard. They had to help me do things, I could once do myself…brush my teeth, put my hair up, take a shower, prepare something to eat, get up out of a chair. My aunt was the night shift and would help me in and out of the chair to go to the bathroom and we set our alarms for every 4 hours for pain meds. Mom (or Nurse Helga) got to sleep upstairs in her bed for that week, because the next 4 weeks were going to be downstairs with yours truly.

Sadly, my aunt had to return to her family and we missed her deeply after she left. But mom and I found our routine, we would get me ready in the mornings, have breakfast or lunch, I’d go walk laps up at the church (starting just one lap around without a break and slowly working up), and return for my afternoon nap and arise when our village of supporters brought us meals for dinner. Mom was there everystep of the way as the strong women I know her to be. There were some happy moments and some messy ones too.  She was there the morning, I dropped the breakfast she had just made and broke into tears, she was there when I had her re-do my hair, because it was the only thing that made me feel human and she was there as the big decision was what sweatpants and t-shirt I was going to wear that day. She watched whatever I wanted to watch and when I was able took me wherever I wanted to go, so I didn’t lose my mind with Cabin fever. She was my driver to all my followups. She did so many little and small things with such a comforting touch, that I forget she was suffering as she watched her child in pain. Thats heroic virtue.

The surgery isn’t just the patient. Its the whole army that helps them get through it. Its a victory of the heart to allow yourself to be helped, loved and served by others, its your job to heal and do the best at that. 

Whats in a name? A lot. I thought I would explain a little about the title of this blog, Victory of the Heart.

A little about me:

When I was first diagnosed with Coronary Artery Disease, also known as Heart Disease, the first thing I did was grab my phone and search “27 year old with heart disease”….and nothing came up. Everything was written for those who were 40+ years of age.

….The thought in my head…great, these doctors wont know what to do with me.

…then things went a little like this….

Multiple cardiologists told me as I laid in a hospital bed, “we don’t really have any data for someone your age whose disease has progressed so much”.

Uh..is this supposed to be reasurring? I thought to myself.

…And then it came….

Having a Complex Case:

“you are a complex case”, the first doctor said. I have heard that phrase multiple times in the past year from pretty much every physician I encounter. I even had one doctor say, “Good luck to your cardiologist”, uh thanks!? 

I hate that phrase and for the first six months of living with the disease, I saw myself as a complex case. Then one day after hearing it multiple times from a hospital bed, I took my identity back, I have a complex case, but I am not a complex case.

It was the first victory of the heart in a long time. I stopped labeling myself as a complex case and began to see myself as Kristin. I live with multiple incurable diseases, but I am not my diseases. Life with a serious condition is often times a battle, from the physical battles we face, when our bodies just don’t feel well that day, to the emotional battles of living with our diseases, to the spiritual battles we all face in life.

Thus the title Victory of the Heart. This blog is to capture the little moments that often end up being the big victories and to the big moments that often up being even greater victories. Its a victory of the heart, whether it be spiritual, emotional or physical….and, its a victory of the heart…to be courageous enough to share my story with others.

Why start the blog and share so much of your story?

This blog has been started to hopefully help others who suffer with these diseases and to keep distant family and friends up to date with whats going on. It will be a mix of my journey of my health and my walk with God.

I have decided to share a lot of details about my condition, because we often learn things from medical websites. Why not hear it from someone who lives with the symptoms listed? What’s it really like? I would have loved to read a blog that talks about what a sternum feels like 1 week , 1 month, 1 year post surgery.