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1/2/2016 0 Comments

The Beginning…

                                                                                     After first emergency surgery at 4 days old, 1983.

                                                                                   “A strong person knows how to keep their life in order.
                                                               Even with tears in their eyes they still manage to say “I’m ok” with a smile.”

      I was a little nervous about entering a new decade in my life, the big 3-0. This was the first decade I actually entered healthy. And when I say healthy, I mean there were no major hospital visits, surgeries, tests, or other type of treatment I was in the middle of. My life from four days until about age 27 was a swirl of doctors, surgeries, extended hospital stays, ER visits and follow-up appointments. I was born with a rare heart condition called Hypoplastic Left Heart Syndrome (HLHS). It was classified as a congenital heart defect (CHD) and according to the Children’s Heart Foundation “Fact Sheet” about 40,000 babies are born with CHD in the U.S., and nearly 1,000,000 born each year worldwide. Thousands die before their first birthday and even more die before they reach adulthood. However, there are the lucky ones, like me, that make it past their first birthday and well into adulthood. It wasn’t an easy or smooth journey to get where I am, but I made it in one piece so to speak (of course with the exception of four heart repair surgeries, a heart transplant and a kidney transplant).

      Before even realizing the strength I was born with to fight for my existence, it was there and saved my life. If you asked my mom what I was like when I was a baby and then a toddler the first thing she would tell you was that I had a set of lungs on me and that I was stubborn. You might think the first thing that she might say was that I was a sick baby with a very severe heart condition. I grew up knowing that I was different because of my heart condition, but I wasn’t brought up with that defining me as a person. It was a part of me, but it wasn’t all of me.

      Who am I? I am still trying to figure that part out. But what I do know is that I am just trying to make a place for myself in this world and I was given this life path, my family and my friends to support and love me no matter what.

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1/2/2016 0 Comments

Normal, “Normal”: Part I

                                                                                           A couple of normal kids celebrating Halloween! ~’88

      One of the last chapters I wrote in my book asked this question, “What is normal?” I know my definition of normal is one that is probably different from yours. Most people wouldn’t understand that growing up in and out of the hospital, countless doctors’ visits and living with a heart condition was a normal childhood for me and my family. Though, my heart condition had a more physical impact in my life, limiting me from the normal activities that most kids wouldn’t think twice about; running, jumping and playing around without a care in the world. Most people would never have suspected that I had a heart condition because I was an active kid, playing with my sister and getting into a fair amount of trouble on my own. The difference is, I would need to rest and catch my breath more often than a healthy kid might typically do. My sister, Amy, and I played dress-up, grocery store, danced in the living room to music and pretended to be ice skaters wearing socks on the hard wood floor sliding our feet around and spinning as if it were ice. Amy and I did end up taking ice skating classes at the local ice rink and our Grandma would take us to pick out our fabric to make our skating leotards and skirts so we could wear them to class.

       I occasionally get questions asking me if I missed out on things growing up and my response it “NO!” It is easy to say that I missed out on a lot and that I didn’t get to have all the experiences that a normal kid might have who wasn’t born with a heart condition. I get it. Up until 7th grade I was in school almost every day. I loved school and being with my friends. I went to sleepovers with friends almost every weekend and hung out at friend’s houses after school often during the weekends. I was involved in theater during the school year and art camp during the summers. I wasn’t allowed to play on any sports teams, even though I really wanted to play softball and basketball; I was never tall enough for basketball anyway!

      I never saw myself as different and that was not how my mom and grandparents perceived me either, so it was easy to feel that I fit in. Because my family was so open about my condition from the beginning, I was open with my friends, too. None of them treated me any differently just because I had a heart condition and sometimes was sick. I think it is important to understand the difference in why I wrote normal and “normal”. I honestly don’t like the word normal. I don’t want to be normal. If I wasn’t born the way I was, who would I have been? Would I have been different from the next person? Would I have even really played sports in school? Would I have appreciated things the way I do? Instead my “normal” has really given me a unique opportunity that I wouldn’t necessarily have had if I was normal (normal relates to everyone who has not been born with significant medical challenges and “normal” relates to people and situations like I was born into). I guess my point is that no one is really normal. We all have things in our life that other people can’t relate to or understand the way only we can.

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1/2/2016 0 Comments

Normal, “Normal” Part II: Relationships

                                “Love is patient and kind. It is never jealous, love is never boastful or conceited. It is never rude or selfish.
               Love never gives up, never loses faith, is always hopeful and endures through every circumstance, love will last forever.”
                                                                                                                   – A Walk to Remember

       I’m guessing that some parents of younger kids with both congenital heart disease and those who have gone through transplants may worry that their kids won’t experience the “normal” relationships, but I think they can. For me, it started with the friends that I had growing up. My friends are amazing and we shared many great memories. My best friend, Heather, and I would play with Barbies in her basement and when she would come over to my house, we would kick Amy out so we could play by ourselves; it happens when you have a younger sister. I used to eat dinner at Becky’s house and we couldn’t eat our salad without Wish-Bone Red Wine Vinaigrette dressing on it. Then we would have a sleep over; me, Becky, and her 60+ pound black lab Sammy who used to like sharing the bottom bed with me. We all chatted about “normal” girl stuff, like clothes, makeup and of course, boys! As I got older, the big difference was that Heather and Becky were in high-school far more than I was when the guys started asking girls to dances and for dates. I do wish I had been able to experience all of the little steps in learning about social relationships. It’s hard for me, sometimes, having missed those because I had a period of illness that was quite long and caused me to miss a lot of school. I know my friends love me for who I am, no matter what. I don’t have to explain to them my medical history over and over because they already know.

      In my book, I used an example from Nicolas Sparks’ “coming-of-age, teen romantic drama” A Walk to Remember. Mandy Moore plays a young teen that has been diagnosed with a terminal illness and Shane West (love him!) is the guy who is changed by her circumstances and ends up falling for her. As far as relationships with guys, I’ve had a few, and while they didn’t work out, I always learned something from each relationship. Each relationship had happy moments that I had wished would have lasted forever and like any other girl, I can’t wait to meet that one guy who will be the one for whom I’ve been waiting. I know, I know it always happens when you least expect it…I guess my point is that, and I stress this a lot, the medical part of it doesn’t matter, unless the person you want to be in a relationship with has a problem with it and then why would you even waste your time with someone like that when you can’t be your whole and true self anyway? You don’t love someone less because they are, or were, sick. It could happen to anyone at any point in a relationship. It is a reason to love them more, for embracing what we, what I, already accept. My past relationships didn’t end because I was sick, or I was different, or I had more doctors’ appointments than most. They ended because we just didn’t work together as a couple. I am still dating and hopefully one day, in the not so distant future, that guy will walk into my life and it will be like we have known each other forever and that will be the story of us.

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1/2/2016 0 Comments

My Super Sweet 16

      Remember the MTV show called My Super Sweet 16? It is the over-indulged, excessive and ridiculous show about teens celebrating their 16th birthday with their parents easily spending over $300,000 just to make their kids happy (and of course trying to outdo their friends and neighbors). Most people don’t even make that kind of money in a lifetime and when you watch a show like that it nearly makes you sick because I know that that is close to the cost of an organ transplant when all the hospital bills are totaled. I recently had a cardiac catheterization and because the hospital didn’t bill my insurance and billed directly to me, the cost of less than 8 hours in the hospital was over $21,000, less $6,000 in adjustments. Apparently the hospital neglected to bill my insurance and on the bill it said, “Self pay!” Thankfully my mom called and the hospital re-billed it to the insurance. If we were talking about one of those super-fancy sweet sixteen parties, that $15,000 was only for the DJ. That still leaves you with $285,000 left to spend to make the birthday boy/girl “happy”.

   All I ever wanted to do, since I can remember, was to get my driver’s license and I couldn’t wait until I turned fifteen so I could take a driver’s ED class. I took driver’s ED the summer of 1998. My health had been declining since I was twelve and the pacemaker that was put in when I was thirteen was no longer as effective; it couldn’t keep my heart from failing. It only could keep it from rapidly beating when I was having a tachycardia episode. I wasn’t going to let that stop me from driving the second I could register for class. My dad used to let me take the wheel, no pedals, and steer down our street; I liked steering around the cul-de-sac. I also didn’t want to wait for school to start and take the high school class version of driver’s ED. I was ready! The private driving school was two blocks away from my house and I walked to class every day. I have no idea how I actually made it down the street and then sat through class being as sick as I was; in congestive heart failure and a heart transplant in the near future. But, then again, I had been waiting to drive since I was two years-old, so my excitement masked any signs of illness. My class went to the DMV and we got our little blue slips of paper that read “DRIVER’S PERMIT”. It was time to practice driving! My mom would take me on the weekends to the high school parking lot to practice. The one day she let me actually drive home from there, her arms were firmly gripping the door and seat as I would press the gas or come to a slightly hard stop. Thankfully the driver’s ED teachers took us out to do most of the practicing. Mom didn’t have to teach me on the highway. In fact, when Amy was learning to drive, I took her on the highway to learn. Mom was too jumpy.

      My dream car was an SUV style BMW. Obviously I have expensive taste. I also wanted a pair of Air Jordan’s with the black patent leather and clear bottoms; way too expensive. I mean if my parents had countless dollars to spend on such things, I’m sure there would have been even higher priced items to want. There were far more important things to worry about like paying medical bills and the mortgage. When my 16th birthday came, I was too sick to even make it out of the house most days. High school was tutors coming to the house at 3:00pm to make sure I kept up with my classmates. I did get a super sweet sixteenth birthday present, but it was a couple of months after my actual birthday. It wasn’t an $110,000 car, it was a heart and that was priceless. September 25, 1999 we got a call from the hospital. I was able to get my license when I was seventeen along with a used car and cell phone for emergency use only. I now drive an SUV, still waiting on that pair of Jordan’s, and will be celebrating 14 years post-transplant in less than two weeks!

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1/2/2016 0 Comments

Who Needs a Heart?

      My sister had already left for work today and I had fallen back asleep. When I woke up again, in our quiet apartment, the memory of waking up in a hospital room in nearly the same way was an eerie reminder of the numerous times I actually had done that; one particular day in September of 1999. Today there was one exception, I also woke up with baseball on my mind; an upcoming Cubs night game that I really want to go to.

      We were getting ready to go to New York for my Starlight wish. My mom had reached out to them in July of 1999. It was a way terminally ill kids could have something happy and fun to do in the midst of great illness. We were finalizing our plans with our Starlight coordinator the week before we were scheduled to leave. The day before my mom and I had driven to UPS to pick up a package we had missed. It was the pager the transplant team had sent me to so they could page me when they received a heart. I remember throwing the package on the dining room table when we got home and walking away. Saturday night, September 25, 1999, my mom was on the phone talking to our starlight coordinator as she did regularly when the other line interrupted their conversation; as she had been doing, this time to set up a time for her to drop off our plane tickets and a few other things. My mom hung up and continued working on some reports, when the phone rang again, “this is the hospital calling”. I picked up the phone and heard this and started screaming and crying. I had no idea what was going on, but knew that I was going to New York in a few days! My sister, Amy, 13, and I had been upstairs in her room watching TV in our pajamas. My mom came running up the stairs and told us we needed to get dressed because we needed to be at the hospital within two hours. We were already a half an hour away and that wasn’t including traffic so we had to move. I asked what was going on and all my mom could tell us was that the hospital called, there is a heart. I replied “we didn’t even set up the pager yet”. It was still in the bubble wrapped envelope on the dining room table. With a lot of coercion I slowly made my way to the garage and then into the car. My mom was frantic, my dad was trying to get me out of the house and my sister was doing her best to keep calm and keep me moving. I didn’t want to go, I wasn’t ready. Our trip to New York was scheduled for October 3, literally the next weekend we were going to leave.

      It took about five hours for the doctors to get with the heart. They had to make sure the heart I was going to be getting was going to be healthy enough to be transplanted. If there was anything that might keep the organ from being used, now was the time. If that was the case we would return home and await another call from the hospital and try another heart. Everything happened so fast. It was only three weeks that I was on the transplant waiting list before receiving the call. The surgery was roughly twelve hours long. When I woke up, I was in my hospital room. I turned to look out the window and it was the ideal fall day’ chilly, wet from the rain, the colorful leaves swirling as the wind picked them up.

      We did get to go to New York, six months later. I don’t think I would have been able to enjoy it as much as I did before the transplant. I didn’t realize how sick I was, because I had gotten so used to the feeling that it was the only way I knew to keep myself going. There is one more important thing to add to this and that is a Thank You to the donor family. Without their generous decision I probably wouldn’t be here. I felt myself slowly getting worse every day. I never let myself go to that place of defeat, but it was a reality if this family didn’t save my life; not only mine, but seven other families received life saving transplants that night. My mom reached out to them with a letter thanking them for what they had done for me and sending condolences for their loss. Their loved one does live on in all the people they helped get the chance to do that. So thank you! It has been a crazy fourteen years of challenges and strength. Here is to the next fourteen. This heart is not going anywhere! September 26, 1999- present.

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1/2/2016 0 Comments

The Doctors

                     Dr. Roger Cole & Me 1988                                                                                                              Dr. Thomas Weigel & Me 2012

       I can never say “Thank You” enough times to some of the most important people who contributed to my survival, the doctors. Hours after I was born, the doctors discovered that there was a problem with my heart. It was shortly after that, that one of the best doctors entered my life. Not only was he a life-saver for my family and I, he was an amazingly caring and loving man who became my cardiologist, and he also became like family. Dr. Cole retired several years ago, but he was my cardiologist for the first fourteen years of my life. Many CHD families know it takes a special kind of person to be a pediatric cardiologist. So much time is spent in and out of their offices, especially as a young kid. Dr. Thomas Weigel partnered with Dr. Cole a few years after I became a patient. Just when I thought I couldn’t get any luckier, we got him! Dr. Weigel, still practicing, was the jolly doctor who would greet me with a giant smile and make me laugh. Their office was located across the street from Children’s Memorial Hospital (now Lurie’s Children’s Hospital) when it was on Fullerton Avenue in Chicago. I spent more than half my life there. Their office was small with three exam rooms, a downstairs where Dr. Weigel would do echos, and three steps up to their office at the end of the short hallway.

      My parents and grandparents used to take me to my appointments; there was always an entourage. I never felt like it was a doctor’s office; I always felt like I was in a safe place and they had candy so I was a happy kid! I would grab my grape-flavored safety pop, and wait for Laura to call me in for my EKG. After that I would wait to see Dr. Cole and Dr. Weigel. Just before I was diagnosed with congestive heart failure, I remember Dr. Weigel and I staring at one of my x-rays. He made a fist with his hand and asked me to do the same. My fist was small and he proceeded to show me where my heart was on the x-ray and told me that mine was twice the size it was supposed to be. A normal size heart for for a fifteen year old should have been the size of my fist. I didn’t know then that that would be one of the last times I was going to be a patient in their office. I was in for a routine checkup with my mom. Dr. Weigel came in unusually somber that day and told me “you are going to need a heart transplant”. I never was at a loss for words that way I was in that moment. All I could think of to ask was if he was still going to be my doctor. I had had sixteen years on birthdays, school graduations, regular cardiac checkups and surgeries all involving Dr. Cole and Dr. Weigel. They shared in happy moments and sad and, that day I felt like I was losing a family member. He told me I was always welcome to come visit him any time I wanted, but he wasn’t capable of following me after a transplant. That would be a whole new team of doctors.

      Dr. Weigel is now closer than ever. When the Children’s hospital moved locations to the downtown Chicago area, his small little office moved, too. When I visited him in October, 2012 to interview him for my book, he told me that he was going to miss that office, and I could understand how he felt. I was going to miss that office, too. My mom always told me how lucky we were to have had Dr. Cole and Dr. Weigel for as long as I did. They fought for me just as much as I fought for myself. They made sure I got the best care and treatments possible. I have only great memories of them and I do, every so often, stop by to say hello to Dr. Weigel; his new office is just around the corner from where I see my transplant cardiologist. Every time I do, he welcomes me with a big hug, asks what is going on in my life, and talks about the how there are new patients with CHD coming to see him. I just think how lucky they are to have a doctor like him.

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1/2/2016 0 Comments

Information Overload & Coping

         First photo: GiveForward/Blank Canvas Event & Fundraiser two days before my kidney transplant (March 31, 2009).
                                         Second Photo: One of the hospital stays during kidney workup.

My book editor Mary Ann, asked to to expand on what it was like to take information in of being told “you need a kidney transplant” and some strategies that I used to help cope with the situation in hopes it might help someone else. This is how I felt. You are getting an exclusive look at a part of what will be in my book.

       I don’t think there is really an easy way to take in information like “you need a kidney transplant” especially when a doctor whom you only have met for the first time, is casually telling you that in the near future you will need a kidney transplant. It was just as much a surprise to me hearing “kidney transplant” as it was hearing “you are in congestive heart failure and you need a heart transplant” when I was 16. There was no time to mentally and emotionally prepare for what that meant and how much my life would be instantly turned upside down. In both instances, with my heart and now the kidney, my heart sank and my stomach tightened. I was angry, confused and overwhelmed. It was mind-blowing, body-numbing, and I was frozen for a minute or two after the doctor left my room the day I was told about a future kidney transplant. It took me a few minutes before I could calm myself down enough to clearly read the numbers on the hospital phone to call my mom. I had not seen this coming. The severity of the situation seemed to have happened overnight. I think I would remember something if my doctors had mentioned this was a possibility, especially with the medications I was on (Prograf and Cellcept). I thought it was more stomach issues, that I had dealt with forever and that’s what I expected it to be, more stomach issues that got me admitted to the hospital, but resolved enough to only follow up with my gastroenterologist. I didn’t even know how to explain it to my mom.
All I could think was what are her and Amy going to do, say, feel? Confused was an understatement. The only association I had had with kidneys was that dialysis was a major part of treatment and that was the factor that I lost it with. I probably was worried and upset the most with the thought of it. It would later be one of the most disruptive aspects of my life. I could sort of handle another transplant, but not dialysis. I nearly made it to the kidney transplant without it. Because the hospital refused the transplant the first time, I was forced to be treated with dialysis until things with the hospital, insurance and financials could be figured out. But, my mom had taught us the way to get through the tough stuff was “just do we do what we need to do to get through it”. What was the plan? When did the doctors say you were going to need a transplant? They were all questions that I couldn’t answer for myself or for my family. I was worried about my sister. She jumped right up and said she would be my donor. We were told a wait for a kidney at that time was nearly five years. A living donor would be within months; after all of the tests were complete to make sure the chosen living donor was compatible.

        That was also how we coped with it all. It is how we always coped. What do we need to do next? What is going to be our plan? What do the doctors need us to do? It is not to say I didn’t have moments when I was worried about what could happen while I was waiting for the transplant. I know in my heart, if my sister wasn’t a match, I would still be waiting for a kidney, but also the reality that I might have lost that battle. When you are told something that will alter your entire life, all you can think about is everything that might or could happen, what if this or what if that happens. At the same time the thought of the future became a day-to-day thought, sometimes a weekly thought. If I knew what was going on the next day or scheduled for the next week, I felt like I had some control of what was happening in a completely out of control situation. I was more concerned about my sister and mom and family. It was so hard to see them so upset and worried when we found out I needed a heart transplant. I was afraid the news at that time was literally going to give my great-grandma a heart attack or stroke. I coped because my family was there. If they were okay, I was going to be okay. When Amy started the fundraiser with GiveForward, it gave me, us, something to do and look forward to doing. It was a nice distraction for the both of us.

      This was one of those moments where “things happen for a reason”. It pushed me to keep fighting and while I was, I was hoping that it would inspire others going through the same thing to keep fighting. When I felt up to it, I joined in the fundraising efforts and made sure to make it to every fundraising event that was held in my name. Telling our story was a driving force for me and made each of the dialysis treatments, plasma treatments, blood tests, and surgery itself, a little easier to swallow. My family tried to keep be as upbeat and as positive as possible. Giving into my crazy food cravings was just a way they kept me a little happier. I did have one advantage. I had been through the transplant process before so I knew what to expect; the organ was the only difference, the medication and maintenance were the same. I knew about rejection and knew what the doctors would do if my transplanted kidney was rejected. I was not worried about that. Everyone copes differently and I can’t speak about how others should cope. I know that having a supportive family and friends helps significantly. You are not alone. You become a team working together to get to the playoffs and the playoffs were a successful transplant.

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YOUR CART

The Beginning…

Normal, “Normal”: Part I

Normal, “Normal” Part II: Relationships

My Super Sweet 16

Who Needs a Heart?

The Doctors

Information Overload & Coping