Advent III – Hope

Message by Becky Sieg

I have told my story countless times, but there has always been someone In the shadows of my story whom was there all along, every step of the way. So this time I will tell my story the right way, and I will tell you how God never left my side.

I believe that God lives inside of each of us, and if you listen to your inner voice that is him speaking to you, guiding you. 

He was speaking a lot to me when I was 21. He was telling me something was wrong, something was very wrong. I distinctly remember sitting in the Student Senate lounge at college and a girl next to me had a bad cold and said, “Ughh, I feel like I am dying.” The voice said to me, “I really am dying.” I called my Mom that day and said “Mom, I just don’t feel right. My heart is constantly racing. I get really dizzy.” We had decided that when I came home after my tennis match on President’s Day Weekend that I would see my doctor at home. 

Then that fated indoor Tennis match came on the outskirts of NYC. It was my first match of my Senior Year. My doubles partner and I pulled out a match of a lifetime taking the win at number one doubles. I went into my singles match on such a high and then almost immediately felt like a balloon that had been deflated. I felt like I was on merry-go-round at a park, everything was spinning and my eyes were cloudy. I felt like someone was inside of me grasping their fingers around my throat while spilling hot coffee on my racing heart, but I did not stop. I heard an echoed voice asking me if I was okay. It was my opponent. I must have looked how I felt, but still I did not stop. Then my opponent hit a short shot over the net and I raced for it. Something inexplicable happened. I did not pass out, I did not trip, but I ended up on the ground as if someone pushed me there. Was this a miracle? I will let you decide.

Coach pulled me off the court. I was mad at him at the time, now thankful that he saved my life. As I was puking everything out of me in the locker room that voice kept urging me to get home, although everyone was encouraging me to let them call 911, I just knew I needed to get home.

Lots of planning and arranging brought me to a meet up point with my Mom in Allentown. She had mapped out all of the hospitals on the way home anxiously pleading to stop at each one we passed, but that voice – it wanted me to go home.

So we did. We ended up at the Gettysburg Hospital. 

I looked very healthy at that time. I was young. The ER doctor made some assumptions, and came to his own conclusion that I was dehydrated and perhaps had some anxiety and spoke about discharging me. 

Then God stepped in. A new team came on for a new shift and a very astute nurse and doctor  felt like I should be placed on a heart monitor. It was recognized shortly after that I was in a life threatening arrhythmia and at that point my blood pressure began to plummet.

It was 46/35 and my heart rate was between 250-300 beats per minute. They had to take me into another room, cut my sports bra down the middle and shock me twice with a defibrillator to keep me alive.

It was as if I watched the whole thing unfold in a discerning amount of peace.

The culprit – ARVD/C (Arrhythmogenic right ventricular dysplasia/cardiomyopathy)

I was living with a rare, genetic progressive cardiomyopathy, a silent killer, and I had no idea….only God whispering to me that something was not okay. 

I lived with ARVD/C for the next 14 years.

My boyfriend at the time left me after almost 2 years together right after my diagnoses when he found out it was hereditary and I could no longer exercise.

He made me feel like a Race Horse with a lame leg that was put out to pasture and no longer had any use.

God’s lesson – Rejection is Protection.

An abundant amount of lessons were learned over the next 14 years…..some obvious, some hidden….all very powerful in their own ways.

I very consciously chose early on in my journey to choose to be thankful rather than constantly question “Why me?” To intentionally be a survivor rather than a victim. To see the blessings rather than the burdens. I was stripped of my passion of athletics. I lost my identity. I could have let this make me bitter….instead I allowed myself to cry about 3 times a year and found new passions like photography. If I chose the other route and chose bitterness and anger and If I did not choose Faith along with Fear (because it would be a lie to say there was no fear)…If I did not have Faith with it, I could have very easily gone to a dark place – A place with Fear and no Faith, well I don’t think I would have lived through that. 
And lived is what I continued to do…through every trial and tribulation. One of my biggest adversaries being my ICD (implantable cardioverter defibrillators). 

When I was diagnosed they inserted an ICD which is an  internal defibrillator. When these devices go off it feels like a firework exploding inside of you. It is painful and it is emotionally traumatizing. A machine the size of a deck of cards is all that is keeping you alive. And that it did. I was shocked 29 times, 16 of those were all at once. 

The day after I had my 16 shock storm I made myself get in my car and leave the house. It was 30 degrees outside and it was January. I took off all of my layers and was left profusely sweating in a tank top because I was that scared…..but that voice told me that day that if I did not leave, I never would. I would have succumbed to the fear. It would have paralyzed me. 

You see God never left my side. During the span of those 29 shocks he never left me “alone” even when I was in actuality alone. 

During the 16 shock storm my daughter, Annabel, who was 1 year old at the time got locked in the house alone. As every Mom would have done, I panicked. The difference was I had a device in me that detected my racing heart and shocked me over and over and over again. Then God sent not one, but two people down my road that very well could have kept driving, but they did not. One of them called 911 and the other one who looked like he was straight out of Sons of Anarchy broke my door down after some convincing on my part. I knew I would continue to get shocked until I saw those Blue Eyes safely looking up at me. I think God knew that too. 

And there was the time that still to this day sends shivers down my spine. I was watching my brother’s Jack Russell Terrier. He got loose and started running towards the road. It was dark and I knew what would happen, but I did it anyway. I chased after him. I got shocked, then I got shocked again, and then I got shocked again. I was completely alone…..so I thought. There I was knocked on the cold ground in the dark and this little Jack Russell decided to stop in his tracks. He then proceeded to go up on his 2 hind legs to greet someone. You see, I was never alone. Not for a second.

I wasn’t alone during my 5 ablations, 3 of them within 3 months of each other with the same answer each time…..We weren’t able to ablate everything. I never gave up trust in my phenomenal medical team, I never gave up, and I certainly never gave up hope. 

Then an ablation, a new one finally worked. You see I was a bit of a guinea pig for ARVD/C. And that’s okay because any positivity that comes out of a journey like this is a good thing. I was always willing to be put through it to help others, especially considering one of those others is my brother Travis.

Anyone that knows us knows that we have a rare sibling bond. It has  been both a blessing and a curse to go through this medical journey with him, but I can assure you, there is no one else I would have rather gone through it with. It has brought us even closer, if that was even possible. We are part of a special club, privy to knowledge you only gain through adversity.

In October of 2017 we both were contacted about doing a metabolic stress test. It was a new diagnostic tool for ARVD/C patients. My brother did his first. He told me all about it and prepared me for it. He of course found the humor in it; we always try to do that. We got that from our Dad. His results came back great, we were thrilled. Then I went in. Part of me had known for awhile that I was not okay. That voice was whispering to me again. My arrhythmias were better then they had ever been. From an electrical stand point it was a miracle. I had gone almost 5 years without getting shocked, but I knew something was terribly wrong. I had known for awhile.

I got the test done. I went on a bike and I rode. Fifteen minutes later my cardiologist said to me, “We do not have the full results back yet, but there is enough here for me to send you to our heart failure specialist.” I do not know if it was my blind optimism, but at the time I just felt like “okay I’ll go see her for a baseline meeting.” 

I was not expressing my symptoms to the full extent, nor was I being honest about what I was experiencing with my team, therefore they made the appointment for 1 year later. 

Then my symptoms became worse. I was gaining 5-10 pounds in one week from water retention. I was finding stairs and hills to be next to impossible. I remember, clear as day walking, Annabel upstairs to Sunday School here at St. James and feeling so out of breath by the time I reached the top that I feared I would just topple over and die. I knew I had to call them. They moved up my appointment immediately.

My Dad, my Mom, my son Jackson and I headed to Hopkins that fated day in March of 2018. Dad sat in the waiting room with Jackson while Mom and I met with the Heart Failure Specialist, Dr. Gilatro. This is the day I heard these words…. “You are in heart failure. You will need a Heart Transplant within months to a year.” 

A heart transplant? A heart transplant.

I had never even let those words enter my mind and here I was finding out I needed one? I felt like I was in a twilight zone. I remember turning the corner and Jackson asleep in my Dad’s arms. He looked at me and I just shook my head and he knew….I broke down.

All I could think about were my kids. My little 4 year old and 7 year old at the time.

I googled heart transplant. More specifically, I googled “How long do you live with a heart transplant?” The answer, right there in bold letters said “The average is 10 years.” Uneducated at the time, I was very reactive to this news. 

I started hysterically crying. 10 years? 10 years is NOT enough time with my kids! It’s just not! Normal Becky would be saying, be thankful for the time you have, be thankful they have an answer for you, there are people that don’t get news like that…..but I was not Becky in the momemt. I was in shock. I was terrified. 

I called my husband Adam, I could hear it through the phone. It was as if someone gut punched him.

The ride home was pretty emotional. Annabel was sick at the time, and needed medicine picked up for an ear infection. Just because I found out I needed a heart transplant, didn’t mean Mom Duties came to an end, nor would I want them to. So I said to my parents, “Can you come with me to pick up her medicine? I just don’t want to be alone right now.”

We ended up having to go to a specialty pharmacy due to needing an uncommon antibiotic because of her allergies to meds. I waited in a long line…..left to my own devices. Left to think, left to over think. Finally, I made it to the counter still in a state of shock. I  was not myself.

They asked me for my perscription inurace. I replied “I was just here a few weeks ago, is there any chance you have it in the system?” They did not. I was in a fog. I couldn’t even think about how to obtain it. I asked again, “Are you sure you don’t have it? I’m having a really bad day and I just really need to get her medicine.” The pharmacist stepped over and said, and I quote “We don’t care.” This is not a joke, this actually happened. I started crying again. Mamma Bear stepped in and said, “She just found out 2 hours ago that she needs a heart transplant.” The pharmacist’s response was “We all have things we are dealing with you are going to have to learn that.”

What was God teaching me? This one took me a little while, but I now know.

I think he was teaching me more than one thing. The first was that there would be people along this journey that would simply not understand, nor care to understand, the severity or the complexity of it. Not before the transplant, not during the transplant, and not after the transplant. It made me that much more appreciative to be thankful for the people that do get it and do care and that much more appreciative for the support. It has made humanity stick out even more. It’s everywhere if you look. It’s in communities, churches, neighborhood Lemonade stands. The kind strangers that helped me when I was in a wheelchair, the person that found my medical card and mailed it to me and said “God Bless You.” The worker at the pharmacy who winked at me as if to say “It’s ok.” They come dressed in scrubs, they come with familiar eyes and hands, they come dressed in clergy collars, they come in white coats, and some can’t be seen at all and are only greeted by hind legs. 

I try to focus on the good in humanity and on the days I struggle I remind myself of this quote-

“Do not let  anybody make you cruel. No matter how badly you want to give the world a taste of its own bitter medicine. It is never worth losing yourself.” This has been a big one for  me and one I work on daily. I am not perfect by any means, especially on steroids. I may or may not have acted like a wild animal while on insanely high doses of prednisone. I’m not perfect, but what I can tell you is that every night when I pray, I pray for God to make me the best possible version of myself, to forgive me when I fall short of this, and to live a life worthy of this gift I have received. 

And a gift I did receive. And I received it on EASTER SUNDAY. Isn’t God poetic? 

It was a Miracle, this time I won’t leave it up for you to decide. 

I have o negative blood (the hardest blood type to transplant) I was intended to be stuck in a hospital for months and months, and I waited 5 days….5 days! I could very well still be waiting in that hospital right now or even worse not be here at all.

It was a week before Easter and I had my check up with Dr. Gilatro.  My Mom and Adam went along to tell her just how bad I had become. Staying awake was a difficult task. My color almost grey. Some days it was hard just to walk to the bathroom. She didn’t need to be told, she could see it. You see that whole year I had the choice anytime to be admitted to start waiting for my new heart. Anyone that knows me knows I NEVER would have said “It’s time.” I had to be told it was time. I did a lot of growth in that year with the help and guidance of some very special people that sit here before me tonight. I shed a lot of fear and I put all of my faith in God and God’s timing. 

So there I was back at Hopkins 1 year and one month after I was told the news that I would need a new heart hearing these words ….
“It’s time.” My response was “Can I just wait until after Easter?” Her response….. “No. If you want to be around for next Easter you have to go in now. You will not make it through the year with this heart.” I am going to let that sink in for a second.

I received my heart on Easter Sunday. What if she would have said “ok?” God’s timing…. 

I remember the day like it was yesterday. I put all of my attention towards making the kids happy, it was my only goal. I did not know how long I would be away from them. I did not know if I would ever be back… I had planned out a schedule for my parents and in-laws with who had the kids each day for the next year.  I got their Easter Baskets ready, with the help of a bunny, of course. And that night my family and my parents came with me to be admitted. There were a lot of tears. I somehow managed to hold mine back until my babies left that lonely hospital room. It was the most difficult day of my life.

On Wednesday Pastor Mike came all the way down to Baltimore and gave me Easter Communion. 

That Saturday night I got the news. My first reaction was to grieve for the donor’s family. I was told it happened so quickly because of my height and size. You see, the heart was too large for a child and too small for a regular size adult.

GOD BUILT ME.

My whole life I’ve been the vertically challenged. The butt of short jokes. And my height, designed by GOD, just saved my life. 

He had a plan all along. He also built me to be resilient, to weather the storm. He built me stubborn and strong, with a sense of humor and a couple tablespoons of feistiness. He built me to SURVIVE. 

On Easter Sunday, surrounded by my parents, my brother, and sister-in-law, my nephews, my best friend, my husband and my kids, I looked at the surgeon who took out my half dead heart and put in my beautiful new one   and said to him before my transplant, “You put the heart in, and I will  take care of the rest.”

Before I fell asleep my last words were “Keep me alive for my babies,” as I envisioned them hunting Easter Eggs through the halls of Hopkins an hour earlier. That prayer echoed over and over again in my head until I fell asleep. 

I woke up to a whole new world. This new world would become a new normal. One filled with a Baskin Robbin’s assortment of medicine, lifetime restrictions, a severely immuno-compromised body where handshaking and hugging became risks. Biopsy after biopsy after biopsy, and enough appointments to equal a part time job…hospital stays that do not consider holidays and special moments. An aversion to sun, with a soul that seeks it. You see, a big misconception is you get a new heart and you are cured….this is not the case, it is a trade off…but let me be clear, it is one that is worth every penny and more because you have a LIFE!!  One that I can run in. One that I am able to go a day in without fear of getting shocked by my ICD. One where  I can breathe. One where my heart beats a beautiful beat. And most importantly, one where I get more time with my kids. Every single day is a gift! 

I woke up with a burning desire to continue to advocate for others. Hope the size of something ridiculously large to find a cure so that my brother and my nephew, dad and my Son who are gene positive will never have to endure this. I woke up with a second chance of life. And I will never, ever  take that for granted. 

I know that there are those that believe that people get sick as a punishment for past sins. The God I know, the God I love, the one that speaks to me, was never punishing me. He was giving me a gift. Because of this gift I am able to see how incredibly precious life really is. It is filled with so much good, even in the darkest of times, and it is FILLED with HOPE ❤️