There is a saying... "Life can change in the blink of an eye"
I walked into the ER; unable to breathe. I assumed I was not recovering from the bout of pneumonia I dealt with during the Christmas holidays and that I needed a stronger antibiotic or inhaler. I was no longer able to sleep elevated on 5 pillows. I had slept on a pillow face forward at the kitchen table the night before. I left my house planning to go to the ER; make a quick stop next door at Costco and then return home in 5-6 hours. Little did I know how sick I was; how my life was preparing to change and it would be 4 weeks before I would return home.
I was taken back to triage and had an EKG. Following the EKG, the nurse asked me if I had a drug or alcohol problem as she was walked me to my room. No... I have always been focused on a healthy and active lifestyle. Walking, pilates, yoga, water aerobics, etc. "Well, your EKG looks bad." She asked why I was in the ER. I explained to her I had been short-of-breath since dealing with pneumonia at Christmas. I suddenly began waking up during the night around 4 am; feeling as if I were drowning. I would google my symptoms. The first ailment that always appeared was heart failure. I would then read the symptoms for heart failure. Nope... not me. I did not have swollen ankles or feet. The next ailment was Hiatal Hernia. I treated myself for a Hiatal Hernia! I explained to her all I needed was a prescription for a stronger antibiotic or an inhaler.
The testing began... Questions... Blood tests... A CT of my heart and lungs... No blood clot! And then the echo... I knew there was a problem when the tech ran out of the room. The doctor came in and told me I was going upstairs. My EF (Ejection Fraction) was 10% and my BNP was over 9000. I was in heart failure. What? I am the one with the healthy lifestyle in my family. I carried (2) 50 lb totes into a building earlier that day. I don't have swelling of the feet and ankles. All I need is an inhaler. I need to go to Costco and then home. My pups are waiting for me. The doctor responded, "No inhaler. No Costco. No home. You are going upstairs".
Upstairs... I learned I was in ICU. I eventually learned I was given less than 24 hours to live. My family was out of state. I needed to let them know I was in heart failure and admitted to the hospital. I wanted everyone to know I loved them. What a night... the monitor kept beeping. Nurses were coming in and out of my room. When I did wake up the next morning, I was surrounded by doctors. I was diagnosed with CHF and Cardiomyopathy. I would need a LVAD and a heart transplant. A LVAD? What was that? Heart transplant? WOW! Not me. They must be looking at the wrong test results. I was then transferred to another hospital to see if I qualified for a heart transplant. The Heart MRI and Peak VO2 Study showed I needed a heart transplant. My weeks and months in the hospital and the journey to receiving a new heart began.
My hospital stays were numerous and lengthy. The LVAD and heart transplant were discussed with me. It would take approximately 2 years to receive a new heart. A LVAD could be implanted to act as a bridge to transplant. When the LVAD was brought out of the bag, I told the NP "that thing is not going inside of me!" Her response, "Then we need to talk about end-of-life care." What I thought were constant panic attacks were VTach episodes. I was gifted with a CRT. I suffered 2 TIAs during one hospitalization; leaving me temporarily blind both times. I fought to stay healthy. I thought if my body did not know it was sick - I was not going to tell it. I lived life as normally as I could. I planted 22 Cypress around my home! I fought to not have the LVAD; too many potential complications. I negotiated every month during my clinic visits to have surgery "next month". My body finally discovered it was sick. No more negotiating. One day, I felt like Ali McGraw in Love Story. I sat on my stairs and knew it was time to go to the hospital. I called to schedule surgery. I met with my surgeon the next day. He expected me to be in the hospital by the end of the day. He feared I had waited too long. His final words as I walked out of his office... "I am afraid your ship may have sailed".
My surgeon came into my room a week after being admitted. He told me I was going into organ failure. If I wanted to live, I had to have the LVAD implanted the next day. I wanted to live. I had an echo later in the day. As I looked up at the monitor, I asked the tech how her hands were being transferred onto the monitor. She said they weren't. I told her to look. A pair of hands were cupping my heart! We could vividly see everything just past the wrist bone. Nails, nail beds, veins, creases in the skin,... As she moved the Doppler wand, the hands moved with my heart. I carried that memory into surgery the next morning after I said my goodbyes to my family and friends; not knowing if I would wake up.
I woke up! I remember as I was waking up, I noticed my fingernails were painted with glitter nail polish. When?! I learned I had been "asleep" for 1 week. I was then introduced to my new buddy - "Charlie". Charlie (my LVAD) was going to be my best friend until I received my heart. Charlie was going to keep me alive. I spent a few more weeks in the hospital and then on to rehab to learn to walk again. Then... the wait for a new heart.
It was 3 months - not 2 years - when I received "the call". The call came just in time. I knew deep down my time was short. I was struggling to breathe. I had to stop every few feet to breathe. I reacted like a pregnant woman who's water broke after receiving the call! I rushed around the house packing my suitcase. I did a quick cleaning for family who would be arriving while I was in the hospital. I was excited - yet sad. My excitement was tempered by knowing there was a family somewhere grieving that night.
It was like a dance when I arrived at the hospital. I was whisked to CVICU to start the process. I had been there 3 months earlier. The nurses knew how lucky I was to still be alive. How lucky I was to have received the call. The preparation began. Blood draws, chest xrays and more blood draws. Then the first batch of anti-rejection meds. It was so surreal. We had confirmation my donor and I were a match around 1 am. I began the 10 hour process of receiving my gift at 7 am.
I never understood nor accepted how ill I was until I read the story of United's CEO while in rehab. He received his LVAD within days of my LVAD. His transplant was the day following my transplant. The story discussed who qualified for a transplant; individuals with End Stage Heart Failure. I FINALLY understood everyone's concern when I read the words "End Stage"
As I look back and understand the symptoms of heart failure, I realize I had been dealing with it since 2005. What had been diagnosed as adrenal failure was actually heart failure. The 2 years before my formal diagnosis were difficult. I had been walking 5 miles/day for years. When I started experiencing shortness of breath - I walked further! I assumed as I was getting older, I needed to push myself harder. Although I was a very healthy eater (mainly veggies and healthy smoothies supplemented with baked chicken and fish), I suddenly started gaining weight. My sister teased me about "getting older". I focused on keeping my diet clean. Nothing worked. The fluid did not collect in my feet and ankles. It had been collecting in my abdominal area. The severe brain fog was a result of the lack of oxygen to my brain. All of the symptoms were there and dismissed as adrenal failure and "getting older".
My heart journey has taught me much about people and life. My priorities have changed. I have always been a Type-A personality. Work was my spouse. When Dr. Slaughter explained to me my organs were failing, I spent the day thinking about life. Suddenly the lengthy hours of work had little meaning. Life is about how you treat others - even if you do not know them. How you treat family. Taking the time to really listen to the needs of another person. The memories you leave when you are gone. Your legacy... It sounds a little cliche but don't allow your final words to be filled with anger as you walk away from someone. It may be the last time you see them.
I have been so blessed while on this journey. I never anticipated I would become a part of a special group of people... Organ Recipients. I am one of the fortunate ones. I did not become a part of the statistic... "22 people die every day while waiting for their gift". I have been blessed to be under the care of wonderful doctors at Jewish Hospital. I have a selfless sister who was at my bedside for 1 1/2 years. My brother-in-law kept everything under control at their home so she could be with me. The greatest blessing - Elaine Stogsdill Baker... my donor. Elaine will always be remembered as a hero by the 5 lives she saved.
I have had a second chance at life. Very few people are given that opportunity. How would you live your life if given a second chance? 22 people die every day while waiting for their gift. Please, be an organ donor if you have not registered. Make the decision to be defined by your final act... YOU were a hero. YOU were an organ/tissue donor!