I had a full day of cardiac tests on Monday. I started with 12 vials of blood for labs — kidneys and liver look stable. Then I had an echocardiogram — ejection fraction of 25% but stable. Then a 12 lead ECG — very low voltage but stable. My last test of the day was … Continue reading 9.5 →

May has been very busy! Mark and I traveled to St. Louis to visit his daughter, Elyse. Above is Elyse and I at a Cardinals game. Below that is Mark and Elyse at her place of employment - The Federal Reserve Bank. We really enjoyed seeing the life Elyse has built for herself in St. … Continue reading May 2024 Update →

Next Monday I will have been listed for heart transplant for 500 days. I am listed as a status 4 patient with little hope of being matched because I have so many antibodies. Status 4-6 wait at home for hearts while 1-3 wait in the hospital. The lower the status number, the higher you are … Continue reading 500 Days →

I can’t believe it’s 2024 and I still have this crazy ARVC heart. I was very hopeful 2023 would be my year for transplant but I am grateful to have my original heart and not be dealing with anti-rejection treatments yet. The adjustment to Ava’s high school schedule has made my days look a little … Continue reading January 2024 Update →

I was at the hospital most of the day last Wednesday. Tests results were mixed again but overall stable from six months ago - which were stable from a year ago. So my doctor and I decided to wait another six months to test again instead of hospitalization. It’s been two and a half years … Continue reading November Testing →

“You love me too much, Mom,” Ava once said to me in a critical tone. She was annoyed that I was “fussing” over her. I replied, “That is one criticism I will proudly own, Ava.” While this wasn’t the response she was hoping for, I admit that I know what she is talking about. There … Continue reading Three Clocks →

I saw my transplant doctor this morning. We had a good conversation about the road to transplant. There were two big topics of conversation. First, he has been thinking about dual listing me at Mayo in Rochester in addition to my University of Minnesota listing. Mayo does a lot of transplants and I *might* have … Continue reading Go Time? Not Yet. →

I am so happy to have my ICD surgery in the rear view mirror. Everything went well and I haven't had any complications. I'm home and my chest is sore but it's very manageable. I took this picture to send to Mark just moments before they took me to the operating room. I am sharing … Continue reading Eye Twinkle →

This will be a busy week for me. Tomorrow I am participating in the presentation to the FDA about ARVC. (I previously mentioned the work I am doing with SADS in the ARVC Advocacy post.) The goal is to educate the FDA about ARVC so they can make informed decisions while approving drugs and treatments. … Continue reading ICD Surgery This Week →

I had another round of tests on May 10th. Results came back stable again. My disease progression was declining at a very steady pace for a few years. And now it’s decided to take a break. My cardiac index has held steady at 2.1 for about a year now. I need to be 1.8 to … Continue reading Test Results & ICD Surgery →

I know it's been a while since my last post. The last month has been up and down. Our trip to Texas to visit Mark's daughter, Elyse, was definitely a highlight. After we returned home, I got pneumonia which had me in bed for almost two weeks. While I was sick, Mark's dad also came … Continue reading April Check In →

Arrhythmogenic right ventricular cardiomyopathy (ARVC) is considered a rare disease. Typically cardiac treatments are developed for the masses and not rare genetic conditions. So building awareness about ARVC is important to me. Right now I am not working which is great for my body and heart. But not for my mind. I have been lucky … Continue reading ARVC Advocacy →

I had a few appointments in the last month including a fancy EKG, lung function test, device check, and an appointment with my transplant doctor. I also had 16 vials of blood drawn for labs. The fancy EKG showed my heart is more electrically unstable than two years ago. My EKG measurements show I am … Continue reading March 2023 Update →

It’s been about a month since I have posted so I am checking in. I am currently listed as a level 4 heart transplant patient. This means technically I could get a call any day that a heart is available but statistically, given my blood type and antibodies, it should take about 10 years before … Continue reading February 1st Check In →

I saw this on Twitter the other day. I read it over and over again. I saved it to my phone so I could reread it. While this passage is not about illness, I imagine it resonates with people who live with chronic illness. When diagnosed with a chronic illness, you have to come to … Continue reading 2023: Before and After →

The heart transplant committee discussed my case this morning. They will list me as a status 4 which means that I need a new heart but I can wait at home. Four is the last status before hospital admission. They want me to get sicker before listing me as a status 2 and admitting me … Continue reading Status 4 →

The roller coaster continues in my transplant journey. Results from testing last week were mixed. The echo showed reduced function - from 35% to 25% and very little movement in the left ventricle. The cardiopulmonary stress test was just slightly decreased from six months ago. The right heart cath had stable results. So when I … Continue reading Transplant Committee, Again →

I have a day of tests next Wednesday (11/9) including labs, echo cardiogram, cardiopulmonary stress test, and a right heart cath (RHC). I meet with my doctor the following Monday (11/14) to talk about the results so I will post an update sometime after that appointment. Speaking of results... My last blog post mentioned that … Continue reading November 1st Update →

This post may not interest everyone. But before you click away, here is a quick update. I met with my electrophysiologist last week. The ICD nurses told me last May that I had 7 months left on my ICD battery. This is why they scheduled me to meet with the doctor five months later. Apparently … Continue reading Cardiology 101 →

I really appreciate everyone following my story. You will notice I have some pretty important characters in this story. My daughter, Ava, is one of them. While her journey through my transplant is hers to share, I did want to introduce you all to her. This morning I got a notification that an assignment had … Continue reading Introducing Ava →

Six years ago I got a tattoo near the top of my back. It’s the first and only ink I have considered. The tattoo is an EKG line of one sinus (normal) beat, one PVC (premature ventricular contraction) and then the script “just live”. I created the line art using a similar idea that used … Continue reading Tattoo →

Mark and I got home from Palm Springs last night. It was a great trip. We relaxed, ate some excellent food, and enjoyed pool time. Here are a couple pictures from our trip. We ate twice at this restaurant right across the street from our hotel. It was called Farm and had the best brunch … Continue reading Palm Springs →

I wish people knew that sick people often don’t look sick. I wish people knew that my biggest fear is not finding a heart match. While I am not afraid of dying, I am afraid of leaving my daughter without a mother. I wish people knew my biggest fear about the transplant surgery is waking … Continue reading What I Wish People Knew →

First here is a quick summary of what I have shared on Facebook. In March 2021, my doctor told me my cardiac test results indicated it was time for transplant evaluation. I spent the next six weeks going to 25 appointments to determine if I would be a successful transplant patient. In May 2021, my … Continue reading September Update →

The transplant journey is like a rollercoaster. There are highs and lows. High: It’s time to list for transplant. I can’t wait to get back to life. Low: It’s time to list for transplant. Everything will change. I will have a whole new set of medical issues. High: Your transplant evaluation was good! There are … Continue reading Rollercoaster →

I am 16 years old and standing in my family's kitchen filling up a glass of water at the fridge. I am watching and listening to the small television on in the opposite corner. I notice that all of a sudden I don't feel well. I am dizzy and my stomach feels a little upset. … Continue reading The First Sign of ARVC →

I had my heart transplant “work up” in the spring of 2021. You have many, many tests and labs to make sure you are a viable candidate for transplant. Here is a stream of consciousness I wrote down while I was waiting to start my very first appointment. ************ I’m sitting here holding a pager … Continue reading Transplant Work Up →

This is a post originally published in July 2014 on a family blog I used to write. It details the moment I first learned my heart was failing and what my life was like living with a sick heart for the next ten years. This post was titled “10 Years” but now it’s been 17 … Continue reading A Bit Of Background →

Thanks for stopping by my heart transplant blog. A genetic disease called ARVC made my heart sick and I now need a new one. I have a hard time pushing my story on social media. I have been in a slow decline for 30 years with very few dramatic events. 30 years! Pushing it to … Continue reading Introducing Heart Sick →