Typically a Lookbook is where you find my outfit inspirations, current trends, and must-haves. But this Lookbook in particular is special – it’s different. It’s a gallery of never seen before photos and videos that walk you through my life. I didn’t create this in hopes of receiving pity. I’m not looking for acceptance or approval. I have no intensions in offending you or opening doors that you’ve worked so hard to close. I would have never imagined myself living the life I live today.
But I think it’s important to acknowledge both the triumphs and tribulations we encounter because they’re all learning experiences and make us who we are. Just a little under a year after living my dreams in Manhattan I’m back in the mid-west. For the first time, I’m opening up to the world with my story. I’m going to show you the good, the bad, and the ugly. The truth. The things that people don’t talk about in public. My reality.
My life slowed down in January of 2017 as I had just moved back to Iowa to finish up my last year at Iowa State University. I was sad that I had to leave bottle service, celebrity exposure, and Bergdorf Goodman lunches but little did I know that would soon become the least of my concerns. Still double major in Public Relations and Marketing with a minor in Fashion Design, I had all intensions in focusing on school so I could finish and move back to the big apple and pursue my (many) dreams. I worked part-time as a Content Specialist for a student housing property, did the class thing Monday through Thursday (I didn’t have class on Friday’s), and went out of the weekends to see the same crowd. I lived the ultimate college life with little responsibility or worry – until it all changed.
Cys Roost – Ames, IA
Cowboy Slim’s – Minneapolis, MN
Tuesday, February 7th I woke up for class really winded. I went about my morning routine and headed to class. Come 11am I couldn’t walk without feeling out of breath so I went to urgent care under the impression that I had caught pneumonia. On my way to urgent care I kept feeling flutters in my chest every couple minutes, which I would soon find out were heart palpitations. After a short 10 minutes of waiting in the waiting room I was called back to see the doctor. I explained to him all my symptoms – dehydration, loss of appetite, fast heart rate, and shortness of breath. After an examination, he proceeds to tell me that I have fluid in my lungs and prescribed me a 5-day antibiotic called Trimethoprim (also known as Bactrim or Septra). I felt relieved! It wasn’t anything serious and this antibiotic was the “magic pill”.
AJ’s Ultra Lounge – Ames, IA
Five days later, I was finally done with the antibiotics! On February 11th, after a day of dartying (day partying) at the bars and house parties – I felt uneasy. Around 11pm I headed back to my 4-bedroom apartment with two girlfriends to unwind and what some would say; sober up. As the night went on and the parties ended, they headed back to their place and we said our goodbyes. I had some chest pain and was short of breath but I assumed it was because I had been running around all day and that the antibiotic took awhile to really get into your system. Now 2:30am and still unable to fall asleep, my shortness of breath had progressed. I couldn’t lie down, could feel even more fluid in my lungs as I inhaled, and it took all the energy in me to breath. Being the only one in my apartment, I drove myself to the emergency room. What should have been a 7-minute drive took 45 minutes because getting to my parking garage was a challenge. Unaware of the situation I was in, I should have called the ambulance.
The District – Ames, IA
After getting labs drawn, an EKG (electrocardiogram), and repeating the same story about three times to the doctor and nurse practitioner – I was admitted. Now I was always a healthy person, even growing up as a kid I was rarely in the hospital. If I was in the hospital it was because I was visiting a patient. Little did I know I would soon become the patient. With that being said, my parents had all the reason in the world to panic. My dad did the 3 and a half hour drive the next day just before my life encountered it’s first 180. Over the next 3 days I saw three cardiologists and a neurologist in hopes to find an answer to my heart palpitations.
Mary Greeley Medical Center – Ames, IA
On February 14th, at the age of 22, I was diagnosed with Congestive Heart Failure. I had an ejection fraction (how much your heart pumps blood throughout the body) of 30%, which was just half of the amount it’s supposed to be. What does that mean and how is that even possible? I thought the same thing. How can someone so young and so healthy have heart failure? Is it genetic? What was the severity of it? These are all questions I will soon answer but before we get there, understand that this is not something I ever saw coming. I had a lot of questions and concerns that would all be solved as the months went on. I was completely distraught and thought to myself “You can’t live with heart failure.” I remember sitting in the hospital bed crying because I thought my life was over. I lost my older sister a year a half ago to a 12-year battle with Limb-Girdle Muscular Dystrophy. Her cause of death? Cardiac arrest. Was I going down the same path? I could feel my body go numb and no amount of tears would suffice for the feeling I suffered as my diagnosis rolled off the cardiologists’ tongue. She went on to talk about treatment and medications but I could only see her lips move, as I was in disbelief that I had this life-threatening condition.
Fast-forward a week later, I was back in the ER due to the same symptoms. I was admitted for 4 days in hopes to get rid of all the excess fluid my body was holding on to. These were all signs of progressing heart failure. Over the next 6 months, I was hospitalized 9 times, advised to wear a Life Vest twice, put on 8 different medications, missed class more than often, called in sick to work at least once a week – and that’s when my depression worsened. Why couldn’t I be a “normal” 22 year old? Why did I have to be sick all the time? I was in denial. “It’s really not that bad” is something I told myself all too often. I neglected the fact that this was my heart that I was overlooking – the source to life.
Come the end of August, my disease progressed. I made an appointment to see my cardiologist after class on the 30th and told myself that I wouldn’t leave her office until she prescribed me the right medication and dosage. I was confident on my 40-minute drive to her office as I thought this was it, I was finally going to get the right medication since all the other ones had failed. I walked into the hospital not knowing that God had something much different planned for me. After getting labs drawn, blood pressure, and weight, I saw Dr. Campbell. Calm, cool, and collected, Dr. Campbell was honest and gave me heart-breaking news. She said, “Bianca I’m going to be very transparent. The medications aren’t working and there’s not much else we can do. You need a heart transplant. And it’s exactly what it sounds like.” I failed. I couldn’t keep myself alive anymore. I lost and the disease won. I remember trying to hold back tears as I kept my composure. What I thought would only be a 20-minute visit turned into over an hour of discussing what exactly a heart transplant entailed. As she went over the process and what life would look like pre and post transplant, I thought to myself another route was inevitable. Will I ever have kids? What’s the life expectancy? All things I would later research. Leaving her office I told myself to hold in the tears until I got to my car. I didn’t want anyone to see me in pain. As soon as I got to my car I cried a silent cry. I was so emotionally disappointed that no sound could come out. I felt embarrassed, frustrated, and ashamed. I sent a text to my parents about what had happened and drove home.
Just three days later, my parents drove down to move me out of my apartment. They made (what I now realize) the best decision as parents. Upset that I would have to put all plans on hold including my education, I said goodbye to Iowa. I only told a couple close friends as this had happened so fast and I wanted to get a better grasp on the situation before advertising it to the public.
Dr. Campbell had referred me to the cardiology team at Abbott Northwestern Hospital as she had a close relationship with one of the doctors. I went to my 10am appointment on September 4th and met not only my new primary cardiologist but I also met the heart transplant coordinator along with one of the nurse practitioners. I was under the impression that this would be a minor visit as I had already went over majority of the heart transplant information prior to me moving back home. I was wrong. Before I met with the new team that would follow my case, I had blood drawn and an EKG. When I met with my cardiologist, he was very thorough and kept things blatant. He told me the process of a heart transplant and the route he thought was best for me after looking at my situation. After going over all that I needed to know as far as his involvement with my case, he opened the floor for questions. Of course, overwhelmed I said I didn’t have any questions. What he told me next would be another dissatisfaction. He explained to me that my heart function had gone down from 30% to about 15-20% and that if I didn’t start the heart transplant process now, he didn’t see me living past 6 months.
Again, I found myself holding back tears as I nodded my head agreeing with his findings. I could feel the tears building up on my lower lashes and told myself “he’s kidding, just relax.” I didn’t want him or my dad to see me distressed. This was his job. He gets paid to tell people about their hearts – whether good or bad. And I thank him for being completely honest. After meeting with the cardiologist, I met with the pre-transplant coordinator. She introduced herself and gave me a folder that would be my guide to the heart transplant process. Across the top read “Heart Transplant Pre-Evaluation” in big black bold letters. How did my life get here? Inside was a long list of shots I needed and procedures to get done before I could actually get a new heart.
Intensive Care Unit
I had all intensions to be outpatient while I checked things off my “to-do list” for a heart transplant, but God again had another plan for me. On September 10th I went back to the ER due to heart failure symptoms and was admitted. What I thought would only be a 3-day stay in the hospital turned into something much more. The following morning I was told that my heart function had dropped down to 10% and was moved to the intensive care unit.
September 11, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
I had to now live in the ICU and finished my heart transplant checklist inpatient. There are a lot of things that go into getting a heart transplant and I won’t go into much detail in regards to the medical side, but I will tell you what I experienced mentally and emotionally because that’s something that isn’t talked about. While the medical side is extremely important and vital, there are a lot of changes you experience that can (and in my case were) very overwhelming.
Abbott Northwestern Hospital – Minneapolis, MN
In order for you to get a heart transplant, they need to know everything about you – and I mean everything. A pathologist saw me the day I got to the ICU and took blood samples that had been ordered. Now this wasn’t any ordinary blood work, she took 19 vials of blood. This would be one of many future blood draws I would get. My first week in the ICU I had two heart catheters put in, met the Chaplin, 5 cardiologists, 3 nurse practioners, a dietitian, a psychologist, and of course many nurses as they switched from the morning and night shifts. A misconception is that your initial arrival to the ICU is the hardest – wrong! My first 8 days were so packed between visitors, reading information that was given to me, trips to the cath lab, and meeting the team that I was very busy to say the least. It’s when you get settled in. That’s when it gets difficult.
September 11, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
Lets jump to week 3 of being in the ICU. Now there’s a lot that happened from the first day to week 3, but for the purpose of time I’ll tell you the things that really matter. At this point the amount of visitors dissipated but I’m blessed to have parents that are so supportive. My dad came in the mornings and my mom came in the afternoons. While I was never really alone physically, I was isolated mentally and emotionally. My parents weren’t physically sick and the doctors only knew my situation from a medical standpoint. They didn’t feel my physical pain. They didn’t know what it was like to look at the same 4 walls day in and day out. They were unaware of the feeling from being underweight. The lack of ability to shower due to an IV and heart catheter. The every day battle with your mind – mental illness.
October 3, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
With the good days came the bad too. When it was good, it was so sweet. And when it was bad, it was ruthless. Despite having supportive friends and family… none of them had heart failure. Heart transplant is something you see on T.V. and on the news but you don’t really know what those words mean until it hits home, or in my case you need one. I was depressed and there were days I wish God would just end all my misery. I wanted to die. This was too much and my family had had enough heartache over the past 2 years. When is enough enough? The night of Tuesday, October 26th I felt defeated and in that moment I declared it. I declared life. I surrendered to God and told him that I’ve accepted everything I’ve become and I choose life. Whatever path He has planned for me, I accept it. I accepted that I might die in the ICU. I accepted that I never had control but He did. I cried myself to sleep that night.
September 15, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
Just 8 days later, I received the news. After binge watching Shameless, I decided to end the night by falling asleep to a movie (that I can’t remember the name of). At 11:40pm I got not 1 but 3 visitors. The on-call cardiologist came in my room along with my nurse and another nurse I knew. My heart felt heavy. Why were they in my room? The cardiologist came in with a grin and asked how I felt. Flustered, I paused my movie and told him “Good… why?” He told me that he had good news, that I received an offer for a heart, and the team accepted it. I didn’t believe him! I said, “You’re kidding right?” What had seemed like a dream finally came actuality.
October 4, 2017 just hours before hearing that I had received a donor offer and the cardiology team accepted it at Abbott Northwestern Hospital – Minneapolis, MN
The next phone call was what I consider the best phone call any parent could receive. I woke my mom up and told her the good news. After, I called my dad and some close friends. This would be an all nighter. How do you sleep after receiving news like that? Two hours later I was sitting in my room with my parents counting down the hours. 8am on October 5th finally rolled around and my anxiety increased. I had never had surgery and my first surgery was going to be heart surgery (casual). I met the surgeon, anesthesiologist, nurse anesthetist, and a handful of other people that would also be in the room during my surgery. Surgery was scheduled for 11am and anxiety was an all time high. Luckily they gave me medication through my IV to calm me down. 10:45am I was escorted down to the OR (operating room) and anticipated coming back a new person – literally.
Now heart surgery is a very invasive and critical surgery because the donor heart can only live outside of the body for 4-6 hours (not to mention the risk of infection and complication). Thankfully surgery went as planned with no complications and 4-hours later I was in the recovery room.
This is when things get interesting. Just because I got a new heart doesn’t mean life picks back up from where it left off. This is actually when things got the hardest – physically, mentally, and emotionally. From a medical standpoint, it was a smooth process. Thanks to pain medication and such an amazing team, my pain management was kept under control. I was up and sitting in a chair a day after surgery and ate all meals out of bed from this point on. I got my chest tubes (tubes that drain excess fluid) out 2 days post surgery and things were looking great!
On day 3 I moved from the ICU to the “regular” side of the hospital. I was expected to leave by the end of the week! Day 4 is when things really settled. I started to feel my first attack of transplant remorse. Here I was, celebrating my new life and accepting gifts while a family was crying for their loved one. Someone had lost their life and got a second chance.
September 7, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
Two days before being discharged from the hospital, I took my first shower after 5 weeks of only taking sponge baths. I got naked and looked at myself in the mirror. At only 104 pounds standing 5 feet and 8 inches, I gazed at my ribcage jabbing through my skin as tears filled my eyes. My thighs no longer touched and my collarbone was beyond evident. I stood there with the water running and cried until I could no longer see my reflection clearly through the mirror. This is what I had become. I wiped my eyes, took a shower, and went on about my day.
October 13, 2017 at Abbott Northwestern Hospital – Minneapolis, MN
October 14th, the day before my sisters’ 2-year anniversary, I was discharged from the hospital. I went home with a big Ziploc bag filled with medication. While I received a young, healthy heart it was my job to keep it that way. Being that my new heart isn’t something I was born with, my body will see it as foreign and reject it without anti-rejection medication. I take 24 pills in the morning and 14 at night. I take medication a totally of 4 times a day. I suffer from depression and anxiety. I have night sweats that wake me up because I’m dripping in sweat (prednisone side effect). I’ve lost all muscle mass. I have tremors and I’m irritable. I can no longer eat pomegranate or grapefruit because of the effect it has on one of my medications. I can’t eat sushi or anything that isn’t cooked well done. I have tape burn all over my neck and my arms look like I’ve suffered from drug addiction because of all the lab draws and IV’s. I get lightheaded when standing up too fast, can’t sleep at night without taking a prescribed sleeping pill, and I’m constantly paranoid of my body rejecting my heart. I find myself crying myself to sleep some nights and have anxiety when I have to go around a lot of people (germs). My immune system is extremely weak. I have to check my weight and blood pressure daily. I have biopsy’s every Thursday to see if my body is realizing that my heart is not it’s own. I will forever have a 4-inch scar down my chest, scaring along my neck, and scaring across my stomach to remind me of everything I’ve been through. But I wouldn’t trade any of this because God has given me a second chance at life.
October 15, 2017 10 days post transplant – Victoria, MN
October 18, 2017 13 days post transplant – Victoria, MN
October 19, 2017 weighing 105LBS at Abbott Northwestern Hospital – Minneapolis, MN
October 24, 2017 19 days post transplant – Victoria, Mn
November 2, 2017 30 days post transplant – Victoria, MN
Most people don’t do this or even fathom the idea of it, but I was able to see my old heart. This is something I had planned on doing ever since I was told I needed a heart transplant. Always having interest in medicine, I had so much curiosity in what my heart looked like and was anxious to hear what the pathologists’ findings were. On November 2nd, all my questions and inquisitiveness were answered.
After my 4th biopsy at Abbott Northwestern Hospital, my parents and I headed down to Jesse E. Edwards Registry of Cardiovascular Disease at United Hospital where my heart was examined and kept. This was a very special day that came with a lot of emotions. I was scared, thrilled, and speechless. Here I was, holding the organ that kept me alive for the past 22 years. I was sad and disappointed but also hopeful that I would be able to help those that have heart issues. The final diagnosis was Glycogen Storage Cardiomyopathy, which is something the Jesse E. Edwards Registry has never seen. Over 40,000 cases and I was the one they’ve been waiting for. I was able to give the most valuable thing I had back to research. My heart will be used in lab teachings for students, talked about in seminars, researched by pharmaceutical companies, and examined by cardiologist across the country. This was my purpose.
November 2, 2017 at Jesse E. Edwards Registry of Cardiovascular Disease (United Hospital) – St. Paul, MN
My heart was cut into sections in order for the pathologist to take cell samples and look at them under the microscope to get a better understanding of my heart condition(s). The discoloration is caused by the preservative (formaldehyde) used to keep my heart from deteriorating.
While this is something I never had planned, I’m beyond grateful that God has chosen me to give back in such an amazing way. I’m an active ambassador for The American Heart Association and an advocate for heart disease. Being a public speaker and telling people my story gives me so much life. I do anticipate finishing school in fall of 2018 and pursuing a career with my degree, but there’s so much more I want to do. I look at life with a new pair of eyes and want to inspire people to achieve anything they want in life. People always say “You only get one life” and it’s so true. You don’t realize what those words really mean until life hits you with a curve ball and your existence is threatened. Life is so precious and it can be taken from you at any time. Whether it be from a car accident or a sickness – don’t take it for granted. This is your life and I want you to live it for YOU. Get up every day with the mindset that you’ll have a good day because YOU said so. You may not be in control of what happens in your life but you are in control of how you react. I know there are going to be days that are harder than others and there are still moments I have yet to experience, but it’s all a part of my journey. This is my life story. So take it from me when I say you only get one chance at this life so make it count. Or if you’re like me… you get two. Until next time…