Aug 20, 2021 Latest post:
Jul 13, 2022
Hello to all. I’ve decided to write about my journey through this surreal experience I am about to enter….heart transplant. I’ve yet to truly come to terms with this reality, but it is coming whether I’m ready or not. I consider myself a quiet person, so sharing this journey with what I expect to be lots of ups and downs may not be the easiest for me, but I am hoping that by sharing this particular struggle (and eventual triumph!) will encourage my friends, family, and strangers to really think about organ donation and what it can do for someone.
I know this is going to be a rocky road. Getting sick enough to be put on a transplant list, even when I feel fairly normal, is scary. Coming to terms with the fact that I need a transplant and if I don’t, my heart will not likely continue to sustain life….it is a very hard pill to swallow. I also want to dispel that all will be sunshine and roses after a transplant. You are actually trading in one set of problems and getting a whole basket of new ones. Post-transplant life is not easy in the beginning, but something you can manage. I do look forward to the day I can walk or bike and not feel like an elephant was sitting on my chest. I wonder what “normal” feels like? I know what my heart normal feels like, but I’m hoping that my new heart normal will be awesome! I’m guessing most of you reading this have heard snippets of the backstory to how I got to this point. In case you haven’t, here’s my story.
I was diagnosed with non-obstructive hypertrophic cardiomyopathy (HCM) when I was 14 years old (9th grade)….which just dawned on me is the same age as my kids now. Wow. My mom passed away from a cardiac arrest related to HCM when I was 3 years old and my maternal grandfather died from heart failure in his 30’s. HCM is a genetic condition that causes thickening of the heart muscle, which makes it harder for the heart to pump blood. A majority of those with HCM are obstructed, where the muscular wall between the two bottom chambers becomes thicker and can block blood flow out of the heart. This form is treated with medications and in moderate/severe cases, an open heart surgery called a myectomy. I have the non-obstructive form, which is less common, and can cause the left ventricle (your main pumping chamber) to become stiff. This makes it hard for the heart to relax and reduces the amount of blood the ventricle can hold and send to the body with each heartbeat. In addition, as I’ve experienced over the past 5 years, all of this can also wreak havoc with the heart’s electrical system, hence the need for my ablations. If you are interested in reading more, the Hypertrophic Cardiomyopathy Association has a lot of great info (4hcm.org) and their founder has been of great help in helping to prepare me for what is ahead (thanks, Lisa 😊).
At 14, I was given a defibrillator as a safety net in case I experienced a cardiac arrest, since I had risk factors for one. I dutifully took one medication, saw my cardiologist yearly, had my battery packs replaced on my defibrillator every 5-7 years and went on like this until 2011. That year I had the unfortunate experience of having my first bout of atrial fibrillation, my defibrillator not being able to recognize the difference between AF and bad ventricular rhythms and going off 9 times in a row in the Subway parking lot (in front of my terrified co-workers). It was a literal kick in the gut experience and one I hope to never repeat! In 2013, I had my first bout of an acute heart failure episode, which led me to take my care full-time to the Mayo Clinic, where they have cardiologists who see just HCM patients. That fall, while completing a VO2 Exercise Stress Test, I got about 4 minutes into the walking, started to feel very ill and suffered a cardiac arrest. You know where you want to be if you have a cardiac arrest? Hooked up to heart monitors and in the Mayo Clinic when it happens. My heart was fluttering just at the threshold of when my defibrillator needed to fire, so they had to perform CPR while they put on the external defibrillator to shock me back into rhythm and finally my device fired and brought me back to sinus rhythm (and consciousness). While I didn’t experience the “come to the light” aura, I definitely remember the “dream” I was having when all of this happened. And this is where I first heard them talk about the possibility of a transplant. It was explained that this was likely far down the road if ever needed and definitely on the last list of options. Boy, does time move fast.
After this incident, I was put on more medications and then the atrial rhythm problems started and with a vengeance. We tried all the medications, but when those stopped working and my being tired of having to be cardioverted (probably 6-7 times in that year), it was time to try an ablation, knowing that with HCM patients, it just doesn’t work as well as it does on normal hearts. I stopped taking some medications in preparation for the procedure, which ended up putting me into afib with high ventricular rates. My rhythms were so unstable that I was medically airlifted to Mayo from Sioux Falls and put in the cardiac ICU. We were told the ablation could take hours, but once she got to hour 9 and I was so incredibly bloated from all the water, she had to stop without being able to fully get all of the problem spots. This led to 4 more days in ICU and finally home on day 7. The ablation did some good for approximately a year, but the atrial irregularities came back. My heart function continued to decline from disease progression and these atrial flutter/fibrillation episodes. I was referred to the heart failure/transplant team in 2017. I underwent 6 days of testing at Mayo for transplant listing. In all honesty, I was very leery of it all because I truly didn’t feel like I was at that point, but my testing all showed there was decline happening. However, after preparing myself and getting into a good mindset, they presented my case to the transplant committee and I was declared too healthy. Another bizarre experience to add to my list. That same year, I was given a new type of device (Cardiac Re-synchronization Therapy device with defibrillator), which helps the heart to beat in sync and hopefully helps to gain some lost function of the heart. It actually worked and my numbers were slowly climbing. I knew this was not a permanent solution, but any way to keep pushing that transplant further and further down the road was the plan.
In 2019, I started to experience more atrial flutter/fibrillation episodes and again, changing medications did not work (hence an 8 day hospital stay), I went home for 2 weeks to prepare for my Christmas Eve ablation. Thankfully this one was so much smoother (I didn’t feel like death when I woke up) and she was able to get to the problem spots. However, in the nearly 4 weeks I was in atrial flutter, my heart function decreased significantly and I could feel this. My shortness of breath was more pronounced. After 30 days of either being housebound or hospital bound, I was free….only to go back into quarantine 2 months later in March 2020 with the rest of you. I thought those 30 days were torture…little did I know what was to come. I did have one bout of afib that required a cardioversion in April 2020 (my first time wearing a mask in public and an eerily quiet outpatient visit for this). I’ve been afib free since then and I am so thankful for this. 2020 was hard enough and I happily went through most of it with no problems except for horrid insomnia caused by a side effect of the anti-arrythmic medication I was on and couldn’t get off because it required another 3 days in the hospital and I was trying to be safe.
Well, eventually I was able to get to Mayo for the hospital stay in mid-October and start on a new medication and then, bam…my experience with Covid hit 2 weeks later. I was really, really, really lucky that I had a fairly mild/moderate case. I did end up with a slight pneumonia, but after 30 days, I was finally feeling back to normal, minus my smell and still with some shortness of breath. I continued to be short of breath, but honestly I think I blamed it on being homebound for so long (I was still working from home and really not going anywhere) and just not walking as much as I did previously. After Christmas, I went back to work. I noticed that I couldn’t walk without stopping to get a breath. My next Mayo appointments were in February 2021 and I dreaded going. The look of concern on the echo techs face when I was having my echo didn’t help my anxiety. When I met with the doctor, I was told my heart function was still low (we hoped that it would come back up again as it had done after the device was inserted) and I now had a pretty concerning result relating to pulmonary hypertension (this measured the blood flow from the heart to the lungs). I was to come back in several weeks to have a right heart catherization so they could measure the pressures in my heart. Matt and I went back to Mayo in March and had that done, which revealed poor numbers. They wanted me to come back and go through the transplant testing again and present my case to the transplant board.
Jayne and I returned to Mayo in May for several days of testing. This time it sounded like a done deal and I'd be listed. The following Monday I received the news that the committee agreed I needed to be listed and would be a status 4. Statuses are 1 (very, very bad shape) through a status 7, which means you are on the list, but placed on a hold because of an extenuating circumstance. At status 4, you are normally home and waiting for a call, as I am. I was then officially listed in the UNOS database on May 27, 2021.