Heart History

1-3 months.

/ Kristin G / 1 Comment

Please note: this begins a series of posts that I will be writing to keep a history of my transplant “journey” (if you know, you know 😉). These posts will be raw, they will be real and at times, it may be hard to read.

The Physical Therapist walked out of the room and Dr. S, my cardiomypathy/transplant doctor, slid the heavy ICU door and said, “good, now I can speak freely”. I knew this conversation was going to be different. I could tell by the tone in her voice. My eyes welled up with tears.

She continued on..she was pissed. She had gotten word from the ICU doc that I had spent the weekend and the morning arguing with her colleague that my symptoms were in fact cardiac. I was nauseous and having chest pain even on the balloon pump. Her new to being an attending colleague had never seen a case like mine. Dr. S on the other hand had seen it before. She had anticipated me continuing to have symptoms even on the balloon pump and expected her colleagues to treat those symptoms over the weekend, which they hadn’t done. She assured me she had already spoken to the ICU doctor about addressing my pain and nausea and would be dealing with her colleagues. And then she said the words that I won’t ever get out of my head.

…”Kristin, I can not send you home. If I remove that balloon pump and send you home, something catastrophic will happen and it probably wont just be another heart attack. You would likely go into cardiac arrest and probably not survive. Your heart is very sick. You know that these are your cardiac symptoms. Stop letting them doubt you. Transplant is the only option”. She answered my questions and after quite some time and a lot of tears on my part, we officially decided to list.

She saved my life.

Due to covid, the pathology/research they would normally do on my explanted heart was cut back. But I begged them (& consented) to please study it, garner as much information as they could from it and respectfully dispose of it. And they did…and it was bad…

We knew there was disease in the heart. We didnt know there was severe disease throughout the whole entire heart. It was so severe, even into the microvascular or smaller vessels.

We knew there was issues with the grafts. We didnt know the bypass grafts were damaged and they were severely narrowed where they had been connected to the vessel to create the ‘bypass’.

We knew I had a lot of caths and that they had likely affected the vessels. We didn’t know there was polymer (particles) from the catheters throughout my vessels.

We knew there was mild muscular damage from the MIs. We didn’t know was that there was multiple areas of damage due to ischemia (lack of blood flow) throughout all of my vasculature. My cardiologist explained that damage was from all the times I was symptomatic at home and likely had MIs that weren’t treated.

We could have adjusted risk factors until the cows came home. The damage was done. My heart was failing and I was very sick. I got so used to feeling bad, it became my normal. Even I didn’t know how bad it was.

Two weeks after my transplant, they put it all into words again: “it was the worst heart we have ever seen. It was actually impressive how bad it was. You had at max 1-3 months to live before that heart gave out.”

Had we done either of the other procedures (CTO Cath/Re-do Bypass), we would have likely had the same outcome. A very sick heart or a catastrophic ending. All those roadblocks we kept encountering? Those procedures wouldn’t have saved or even likely pro-longed my life.

Had I not been admitted that Friday in early September, I wouldn’t have been quickly worked up for a heart. It would have taken 2-3 months doing a bunch of outpatient testing. The same time frame they estimated I had left on my old heart.

Had I not had such fluid issues, my general cardiologist would have never pushed to bring in the cardiomypathy team to manage my case. And transplant wouldn’t have even been on the table as an option yet.

I’ve looked death in eye multiple times and by Gods grace and smart doctors, my life has been saved over the last 5 years. But to be that close and to hear how sick I really was, that was like a punch to the gut that took the wind out of you.

What does that do to you? In one breath, you question God and why it had to play out this way and in the next breath see the providence in His timing. I spent a lot of 2020 begging God to show up and being really angry about the constant suffering.

While I rejoice and am grateful for this transplant, it does not wash away all the pain and trauma of the last 5 years. I still picture myself sitting with Jesus on a bench with a cup of coffee asking him “what the hell?”. And I’ll wrestle with that for the time to come.

Transplant tests your will, endurance, strength and stamina. While we have been blessed during this recovery so far (and hopefully in the months to come!) it is hard work. I literally spend 90% of my day, either dealing with 4x/day meds, calling about appts, reporting in to the transplant team, fighting with insurance companies, getting my steps in, etc. It’s a gift, but transplant comes with its own set of challenges. Fellow recipients will warn you of that, but until you live it, you don’t fully get it. Transplant is not a cure, it’s a treatment option.

One thing my cardiologist of the past 3 years always instilled was Hope even in the hardest moments. I didn’t always trust God or the doctors, but I had hope that in the end, God would work healing in my life. He just did it a little differently than I expected…

#hopewins

#becauseofjesusandadonor

My Heart Story

/ Kristin G / Leave a comment

My name is Kristin and I started this blog in 2015, at the age of 27 to document my journey with Heart Disease as a young adult. While there are many great resources out there for heart disease, many focus on my fellow heart patients who are 40+ years of age.  My hope is that this blog will help other young adults dealing with chronic illness and trying to fight their own battles, whether they be emotional, spiritual and/pr physical.

The highlights version of my story:

In 2015, at the age of 27, I suffered a NSTEMI (heart attack), with a 99% blockage of the LAD that was treated with a stent. Just two months later it was deemed necessary that I undergo a CABG (Coronary Artery Bypass Graft) a.k.a. open heart surgery.

In the fall of 2017, I was diagnosed with Renal Cell Carcinoma, which was treated with a cryo-ablation in the Spring of 2018.

In early 2018, by bypass grafts failed/went down for the first time and Multiple stents had to be placed at the time. 2018 was plagued with multiple occasions of restenosis of my bypass grafts and recently placed stents. I experienced my second NSTEMI and underwent multiple caths with PCI (intervention) in 2018, with the hopes 2019 would see better luck.

Unfortunately, just 6 months after the last intervention in 2018, I went back to the Cath Lab in February 2019 and had 4 more stents placed. Just 4 months later, I had my first STEMI in July 2019. I went back to the Cath Lab in October and December 2019 due to additional blockages. Yet again, we hoped 2020 would bring better luck…

In February 2020, I had NSTEMI #3 and received two additional stents in my RCA graft. Sadly, just 10 days later, I experienced NSTEMI #4 and went back to the Cath Lab.

With a beautiful lipid panel, doctors believe that my issues are two genetic conditions, elevated LP(a) and Familial Hypercholesterolemia as well as an unidentified condition. My case is extremely rare and very complicated which currently has us researching possible next steps and pursuing additional opinions at the top cardiac institutions in the US.

This blog will chronicle my battle with heart disease and my journey to find the best treatment we can. It will also feature my trusty sidekick, Sherry, my mom, advocate and unending source of support. It will also feature our pups, Gracie and Finley.

Why Victory of the Heart?

I am a young christian trying my best (although failing at times) to bear witness to Christ.

Even amongst the physical, emotional and spiritual suffering. Each day is a victory of the heart, choosing to courageously live and finding victory in the small and big moments.

 

 

About my First Heart Attack

/ Kristin G / Leave a comment

“You are so young!” If I had a dollar for every time I heard that phrase I would be a rich woman, sitting on a beach somewhere.

…”Yes, I have really crappy family genes”, I say with a smile. But the reality is that underneath that smile, is a little tiny stent in my artery, that saved my life….

In 2015, two weeks before my 27th birthday, I started experiencing really bad indigestion every time I climbed the stairs or exerted myself. I would have to sit down and “burp like a man” as my roommate called it. I went through Tums like they were candy. One morning I arrived at work and the pain was unbearable. I spoke to a coworker who used to be a nurse who called her husband who was a retired doctor. He suggested that I go to the ER to get checked out as the burps could be me trying to get air. I jokingly said to my fellow coworkers, I’m going to make sure I am not having a heart attack.

Off to the ER, we went. They told me it was probably GI related, but they called for a cardiologist, because while I didn’t know it at the time, my EKG showed abnormalities and my BP was out of control.  Once we knew that it wasn’t going to be a quick visit, my coworker called our parish priest and my mom..My mom and parish priest arrived within minutes of each other. I knew it was serious when their ‘less than stellar poker faces’ looked at the heart monitor and they both tried to smile, looking at each other with “oh, crap” faces.  The cardiologist explained a few things, had me take some more doses of meds to try to get my BP down and said he wanted to see me in 3 days in the office.

Upon arriving in the office, he repeated the EKG which still showed abnormalities and decided to run a stress test and heart ultrasound in the next week or so. Being me, I laughed off the stress test, thinking it wouldn’t show anything. It was scheduled for a week later on a Tuesday, my day off.

I met Mom at Panera for chicken soup to celebrate my birthday, that Monday before the stress test.. To this day, neither one of us can step foot in Panera. I was sitting there enjoying my soup, and started to experience really bad chest pain. I told her that I thought we needed to go to the ER. We went, they presumed indigestion again, gave me some heavy dose of something to help with indigestion and sent me on my way. I should have known and fought for myself that as I walked down the hallway, I continued to have chest pain…And it wasn’t indigestion. I knew something was wrong.

I arrived back at the cardiologists office the next afternoon, just days after my 27th Birthday for my stress test and heart ultrasound. I had told mom not to come, as I figured it would be no big deal.

In walked another cardiologist who I did not know. I asked him before we started how he knew if it was heart related or being out of shape. He said there were indicators and we started the test. We were casually talking, when I started to experience chest pain, 4 minutes into the test.

At the same that I started to experience chest pain, he noticed an abnormality on my EKG. At 5:01 into the test, and as he looked at the heart monitor, his face quickly shifted and he told me to “get off the treadmill now”. Along with the tech, they diligently tried to quickly get images of my heart, quite quickly, as he kept repeating “Kristin, how are you?”. I didn’t realize it was anything serious until he said, “I am admitting you and we will be doing a Heart Cath, tomorrow”. He explained the procedure and I just nodded. At some point, I got word to mom that I was being kept and she responded “on my way”. To state for the record, that woman is a saint and I have probably given her more grey hairs than she would like to know.

The doctor went into the hallway to call down to the ER to let them know I was coming. After hanging up, I ever so kindly asked, “who does the procedure?” He replied, “me”. So then I asked, and what are your credentials? Where did you go to school? He listed off a few starting with Yale. I told him, “okay, you can do it”. They arrived with a wheelchair to take me down to the ER and he said see you tomorrow. Now, looking back, he was trying to keep me calm, because he knew what he saw, but was waiting on blood work for confirmation.

When he arrived at my bedside about 2 hours later, I knew something was up. Upon arriving to the ER, they had hooked me up to every monitor in the room, took bloodwork and I waited for mom to arrive. Mom was sitting in a chair at the end of my bed, when the cardiologist arrived with some not so great news, “You suffered a heart attack in the last 24 hours”. My mother quipped, “she had a cardiac event?” To which the kind doctor, responded, yes, she had a heart attack. He explained the Cath to my mom and that it would probably take a few hours. My Troponin levels that are supposed to be at zero, were above 3.0 and climbing. They would eventually peak at 6.0+

I was admitted up to the room and continued to be very closely monitored. I was visited by great priests, received the Sacraments of Confession and anointing and was ready to go. Only I didn’t sleep a wink that night, the more I read about the procedure, the less thrilled I was. Tip to family members: take away the patient’s phone once the doctors start naming tests/procedures.  Mom stayed in the room with me and I think we saw every hour on the clock that night.The morning could not come soon enough.

The next morning, I was taken down to the Cath Lab and met by who we had dubbed, “Dr. Yale”, because we couldn’t remember his last name. They gave me medicine to help with pain and put me into moderation sedation. I remember coming in and out of it, but not too much. I only remember him telling me that he had finished and that the nurses would take care of me. Apparently, under the medication, I became quite polite, thanking everyone in the room, repeating, “thank you ladies and gentlemen”, as they prepared to move me back upstairs. After the procedure, I was taken up to the ICU for very close monitoring and had the best nurse ever. That girl will always have a special place in my heart. Nurses truly are the heroes of medicine.

“Dr. Yale” arrived at my bedside about an hour or two later with pictures from my Cath. We learned then that he liked to either show or draw pictures to explain things, which was great because other than knowing your heart is supposed to beat, I didn’t know anything about my arteries at that point. All I knew was that I had a 99% blockage in the LAD, the ‘widow maker’, that he was able to stent.

I saw him a week later in the office, quite upset with him for the bruise the procedure had caused, but other than that was feeling good. All my numbers looked better and all indications were that I was good to go…or so we thought.

Check out about my heart surgery for part II.