Heart-to-Heart – Living with Familial DCM: Meet Allison Trimble
Statistics tell us that heart disease is the number one killer of both men and women in the United States. We also know that heart disease is responsible for 1 in 3 deaths, and that over 375,000 people die from heart disease everyday. 1
While heart health statistics are crucial, we often forget the names and faces behind these numbers. That’s why we’re introducing our Heart-to-Heart series – a conversation that tells the stories of those living with heart disease.
To start, we’re excited to share with you the story of Allison Trimble, a strong and inspiring woman who has survived and endured both Mitochondrial Disease and Familial Dilated Cardiomyopathy (Familial DCM), a genetic condition where the heart begins to fail.
Hailing from Washington State, Allison “Allie” Trimble is a vibrant woman who lives with the love of her life, Dave, and their two “kids,” a dog named Max and a cat called Miss Kitty. In her free time, Allie loves to crochet, knit, and take photographs.
We recently caught up with Allie to understand how Familial DCM has impacted her life and how she has managed to thrive with a heart transplant.
MOCACARE: What led to your diagnosis of Familial DCM?
Allie: First, I should say that my older brother, Jake, was also diagnosed with the same heart condition as me. He also required a heart transplant and received his in 1994 when I was 10 years old. He was 12 at the time. Initially, his diagnosis was ruled as Viral Cardiomyopathy, however, after I became ill and presented with the same condition, they diagnosed me, then went back and changed his. Since my diagnosis, I have also learned that the initial cause of my heart failure was due to another condition I was diagnosed with, called Mitochondrial Myopathy typified by Cytochrome “C” Oxidase (COX), also known as Mitochondrial Disease.
MOCACARE: What symptoms did you experience prior to your diagnosis of Familial DCM?
Allie: It started with difficulty breathing when I lay down, which got a little easier when I turned on my side (by the time I was very ill, I was gasping for breath as I lay down). I also experienced terrible nausea/vomiting, especially and typically in the mornings. I occasionally experienced lightheadedness and was extremely fatigued to the point of falling asleep in some of my high school classes. The school nurse couldn’t help but wonder what was causing my sickness.
It has been proven time and time again that heart disease shows up differently in women than in men, and the symptoms I experienced are very common for women with heart disease. Typically, women do NOT get the “classic” heart disease symptoms, such as chest pain, jaw pain, back pain or arm tightening/pain, which made it more difficult for me to reach my official diagnosis.
MOCACARE: What was the heart transplant experience like for you?
Allie: When I was officially diagnosed with Familial DCM at age 16, I was far into heart failure. Doctors were shocked that I was able to walk, let alone stand and be coherent. When they took my heart out, it was about the size of a grapefruit (the normal size of a person’s heart should be about the size of your fist). I was stabilized and sent home to wait for my heart transplant, but became too sick to stay home. I was admitted to the hospital in February 2000 where they kept me feeling okay.
” I try to not let a day go by where I do not think of and thank my heart donor, Soji, who made the decision to become an organ donor ahead of time. “
About a month later on March 5, 2000 I received the gift of life. This year, March 5, 2016 will be my 16th year anniversary for my heart transplant. I try to not let a day go by where I do not think of and thank my heart donor, Soji, who made the decision to become an organ donor ahead of time. I’ve been extremely fortunate with my new heart. Since my transplant, I’ve felt healthy and never experienced rejection. But the same can’t be said for my brother. Unfortunately, just seven years after Jake received his heart, he passed away due to complications from his heart transplant. We were able to donate his corneas and give someone the gift of sight. I miss him every day.
MOCACARE: What are some of the challenges you’ve faced due to Familial DCM and Mitochondrial Disease?
Allie: The biggest challenge I face is that I am considered disabled. I cannot walk more than a block without needing to rest, I cannot stand very long before needing to sit and doing any of these can bring on an episode (as I call them) of pain and Creatine Kinase elevation. Even though I have a manual wheelchair and we use it to get me places I normally wouldn’t be able to go, I still find myself very limited by my disease. Dave and I so want to travel to Europe: Italy, France, Denmark and Iceland. We want to go and see and experience.
” I’m so sad that I’ll never get to share all the love I have in my heart for a little one that I dreamed up years ago. “
Ultimately, if I’m completely honest, the biggest challenge that this has caused for me is that I cannot have children. I want to be clear: I’m able to, but because this is a genetic disease passed on by the mother, we feel it’s our responsibility to stop this disease here and now. How can I explain how this decision has impacted me? Sometimes I’m proud that we’ve made this choice, but mostly I’m sad. I’m so sad that I’ll never get to share all the love I have in my heart for a little one that I dreamed up years ago. In a world where we make selfish decisions everyday not caring about the consequences, this decision has by far been the most difficult I’ll ever have to make.
MOCACARE: What advice would you share with others who have had a heart transplant?
“ … Give yourself space and time to consider the greatness of the gift that was given to you. ”
Allie: It gets better. When you have a heart transplant, there’s a lot going on all at once. Once you start to heal and they let you go home, you find yourself back there for doctor visits, biopsies, angiograms, x-rays, echocardiograms, nutritional consults, phycologist visits, and many more things. Listen to your doctors; they know what they’re talking about. Take your medications religiously. Slowly, your life before transplant will start to be integrated back in, and at the same time you will find that your stamina will slowly be built back up as well. Give yourself plenty of time to rest, heal, recuperate and most importantly, give yourself space and time to consider the greatness of the gift that was given to you. It’s a heavy thing, and not something to be taken lightly. It’s okay to be emotional about it. and it’s okay if you’re not quite sure how to feel about it.
MOCACARE: I understand that you’re a MOCAheart user. With that, how would you describe your experience using MOCAheart as it relates to your condition?
Allie: Once the Android app was available, I was able to use my MOCAheart right away. So far, it’s been very helpful and easy to work with. I love the size! It’s small and compact, just the right size to throw into my purse and take along wherever I go. I also really like that along with my pulse, I get a blood oxygen reading.
MOCACARE: When you say “helpful,” what do you mean exactly?
Allie: MOCAheart helps me the most by taking vitals and recording them immediately, so I don’t have to. I like that I can add notes to the reading, because there can be so many reasons why a reading is elevated and it should be noted because I’ll never remember when my doctor is looking at it in 6 month’s time. I also really like the graphs. My doctor is really thorough, and tends to ask really specific questions, so it helps a lot if I can look back and show him when a trend started and how long it continued. I don’t know how many times I’ve started a record of vitals somewhere, then promptly lost that record somewhere in my house. I see my cardiologist every 6 months (unless I become sick and end up in the hospital). I can’t tell you how many times I’ve gone to a clinic visit and remembered while I was at the doctor’s office that I had some vitals written down at home somewhere.
Thanks for sharing your story with us, Allie! All of us at MOCACARE are touched by your strength and we’re glad we can help.
Allie is passionate about educating others living with heart transplants and Familial DCM and does so through her blog. Visit her blog at knitted2gether.wordpress.com to learn more.
Curious to learn more about MOCAheart, the world’s smallest heart health tracker? Click here to learn more.