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| My heart and lungs are celebrating their quinceanera! |
In just a few hours, I’ll be celebrating 15 years since receiving my heart/double lung transplant. In that time span, I’ve graduated high school and college, welcomed numerous family members and said my good-byes to others. I’ve lost many of my original set of transplant friends but gained an amazing second family via the U.S. Transplant Games.
For my family and friends, it’s a happy occasion but for my donor family it is a somber day. Another year has passed without their daughter/sister/niece. Every year, on the eve of my anniversary, I’m able to remember how I sick I was and where I was when I got the call that changed my life.
What you’re about to read is a chapter of my story; something I wrote a long time ago hoping it will be published one day.
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| May, 1996. L-R: a transplant coordinator, Donna; MY transplant coordinator, Pegi; Dr. Cohen (pulmonologist) and Dr. Mallory (my other pulmonologist at the time). Up front: me |
About a month pre-transplant, my body let me know that I was running out of time. My eyes started to look blood shot and tired. When I asked my dad why I looked like this, he told me it was because I was dying. My breathing was so shallow that I constantly sounded as if I had just run a marathon. I now required more than 12 hours of sleep a day though I wasn’t on any oxygen. (The holes in my heart ruined any chance of it having a positive effect on my lungs.) We had to get a permanent wheelchair that I used whenever my family and I went anywhere for long periods of time (such as the museums or zoo…though I usually fell asleep). I couldn’t walk around the supermarket with our family when we would do our weekly shopping. I had to either sit under the cart (yes, I was that small) or stay in the magazine section.
I remember experiencing a frightening fainting spell in the library due to the lack of oxygen to my brain. One minute I was going through the books, the next I was holding on to a rack passed out. I came back within a minute or so but something was very wrong. I remember gasping for for my mom, desperately trying to take one small breath. The following Monday at clinic, my doctor told me point-blank that if I ever had another fainting spell like that again, I'd have to be admitted and wait for my transplant in the hospital. My body learned it's lesson and I didn't have anymore fainting spells.
Another time, I got tired just by walking across the street from the parking garage to the hospital for a regular clinic visit and physical therapy. As soon as I walked through the revolving door, I had to sit down and rest for 20 minutes. Even after I had caught my breath, I had to use a wheelchair to take me up to my check-ups.
Another time, I got tired just by walking across the street from the parking garage to the hospital for a regular clinic visit and physical therapy. As soon as I walked through the revolving door, I had to sit down and rest for 20 minutes. Even after I had caught my breath, I had to use a wheelchair to take me up to my check-ups.
Yet I never gave up. I just knew I’d get the transplant time. I didn’t think God would do something stupid and let me go through all of this and not survive. I don’t know where that 16 year old girl found her inner strength….
Tuesday, June 11, 1996, was like any other pre-transplant morning for me. I read the comics like always but on that particular day the strip, Family Circus, stood out. It showed an operation being performed on the television with only daughter, Dolly, watching. She pointed at the screen telling Mommy and Daddy, “The heart of a donor must already be full of love.” After reading this my parents jokingly said to me, “Maybe this is means that you’re going to get your transplant soon.” How were they to know that in less than 72 hours, they’d be eerily right?
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| 15 years ago, on June 11, 1996 this comic strip was published in newspapers across the nation. I've always wondered if this strip caught either the eye of my donor or donor family and maybe nudged them in the direction of organ donation. |
At this stage of my life, I didn’t care about my appearance. I was used to getting zits and blackheads, having greasy hair, and unshaven legs. It was a very big deal if I took “half a bath” (washed from the neck down) three times in a week. I rarely showered but during the afternoon of Thursday, June 13th, Mom nagged me to the point where I dragged myself to the bathroom and washed my hair with some shampoo and conditioner and scrubbed some good ole’ soap on my body. She was also on my case because Father’s Day was right around the corner and I still hadn’t “made” anything for Dad. While everyone else was getting ready to go out to dinner, I grudgingly plopped myself in front of the computer and made a card/letter for my father. While my computerized letter was coming out of the printer I thought, “What’s the big deal? I could’ve made this tomorrow or Saturday and given it to Dad on Sunday.” Let’s just say that Mom’s peskiness would turn out to be a couple of blessings in disguise.
Jennifer and her family were scheduled to return to Muncie, Indiana the following morning and we (five families, 17 people) threw her a going away party with food and outdoor fun. We first went to Lone-Star Restaurant and I ordered a HUGE stack of baby-back ribs with a side of fries and a Sprite to drink. Since I was on a small dosage of Prednisone, and already had the increased appetite, I ate all of my ribs, a quarter of my fries and drank about half of my soda. How was I to know that that meal had to last me for a few days?
Afterwards, we went to Swing-A-Round Fun Town. It has bumper boats, a batting cage, go-carts, etc. Once we got there, my dad offered me my wheelchair (which we now brought with us everywhere “just in case”) but I declined since I knew I wouldn’t be running around like everyone else. I missed the height requirements for the go-carts by mere inches so I asked for some money to play Skee-Ball. After a few rounds (and winning quite a few tickets) I wandered outside and sat on a bench to observe my surroundings.
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| Swing-A-Round: where my beeper went off! |
Just before 9 p.m., my sisters were in line for another turn at the go-carts and Jennifer’s family was trying to get the five of us together for a family photo. They were going to put the picture in the scrapbook they were making in memory of Jennifer’s transplant journey. My sisters never got that second ride and that picture was never taken.
One minute I was staring out into space. The next, I heard this noise out of thin air. I got my dad’s attention and asked him, “Isn’t that the beeper?” He immediately stopped what he was doing, recognized the number, and confirmed that it was hospital. My reaction? I started running like Forest Gump! Where was I going? To the hospital! In my naïve way of thinking, I assumed I’d just run to the hospital all by myself. Dad yelled, “STOP!” and I froze, literally vibrating with excitement. Dad said, “Calm down. Let me call the hospital to see what’s up.” We had to find out if this was a mistake or a real possibility. When my mom and sisters learned that the beeper had gone off they began to cry! Our friends tried to calm them down explaining that the hospital wouldn’t have called if they didn’t think good organs had become available. What was I doing? Laughing! I’ll be the first to admit that when I’m nervous, I’ll crack jokes and laugh inappropriately and that night was no exception.
Those who were at Swing-A-Round but weren’t part of our group just stared at the commotion we were causing. I’m sure they were wondering why some people were crying, others were getting agitated at the pay phone, and one person in particular was (literally) cracking up.
Eventually, we learned from a coordinator that this was the real deal (so far) and we had to get to the hospital ASAP. We hugged everyone good-bye, piled into the van and drove in silence. My mom and sisters had finally stopped crying but at one point, it was my turn to get scared. I confided to my father about these second thoughts that I was having but he assured me that God wouldn’t have allowed me to receive this call if He didn’t think it was the right time. This helped calm my nerves and by the time we pulled up to the front of the hospital, I was ready for whatever was in store.
We had no idea where to go when we first arrived and at one point my dad had to exclaim to my mom, “Yolanda, stop!” She was running around like a mad woman trying to find help. Finally, someone came with a wheelchair and took me to the seventh floor to prep me for surgery. While boarding the elevator two nurses exited and saw me. My parents told them that I’d gotten paged for a transplant and they wished me good luck. I’d be the first heart/lung recipient of 1996 for St. Louis Children’s Hospital!
My poor parents were beyond scared and my sisters were exhausted. I immediately changed into my hospital gown and the nurses started looking for the perfect vein to insert my IV. They knew I was going to be a hard person to stick so they asked for a particular nurse who was excellent at getting patients on the first try. After a tight knot on my arm from the tourniquet and a few slaps on my hand and arm to make the vein “pop up,” the IV went thru without a hitch.
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| my hospital bracelet |
For the next few hours, tests were being done on the organs and me that would eventually enter my body. Tests on me to make sure I didn’t have a cold or flu or anything of the sort. Tests on the organs to make sure they hadn’t been damaged in any way during the flight from one hospital to the other.
False alarms or “dry runs” are common, especially for lung recipients. Why? 1.) The lungs are one of the largest organs to transplant; they are also the most fragile. There is a better chance of them becoming damaged (either during impact of said incident or between hospitals) more than any other organ. The lungs have to literally deflate before they can be transplanted. 2.) (This is where “medical politics” comes into play.) Let’s say that a set of heart and lungs have arrived and are intact. On the one hand, you can keep the organs together and give them to one person. On the other hand, you can spread the wealth and give the heart to someone with a virus and the lungs to someone else battling a disease or give one lung to two people. It’s because of these scenarios that heart/lung transplants are so rare.
Around 1:30 a.m., on June 14th, a nurse came to my room with a wheelchair. It was time. I asked if I could use the bathroom and she said yes. I also needed to get my weight checked one more time. I did my business and then stepped on the scale. My last pre-transplant weight was eighty-eight pounds. Afterwards the five of us went down to the 4th Floor—Operating Rooms. We were put in a small “waiting room” while the surgeon and nurses did last minute prep work to get ready. Just before I was wheeled away from my family (and since we had our camera with us), my dad asked a nurse if she could take a couple of pictures of the five of us….just in case. Years later, and I’m amazed. My parents and sisters had sad tears in their eyes and weak smiles on their faces. My eyes were bright, clear, and excited; the smile on my purple lips showed only happiness. I was ready.
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| "My eyes were bright, clear and excited; the smile on my purple lips showed only happiness. I was ready." |
A nurse then started wheeling me to the O.R. I looked over my shoulder, waved to everyone one last time and (with an eager smile on my face) said to my family, “Bye guys! See you in a few hours!” I was wheeled into the room and asked to step on a stool to get on the operating table. After being strapped down, someone placed a mask over my face. I was asked to count backwards starting at one hundred….I didn’t even get to ninety-five.
End of chapter.
Since then, I’ve thought of my donor and her family often. I know that my organs came from an 11-year old girl in a suburb of Chicago (okay, so I do know the city but I’d rather not publicize that) and she had the same blood type as me but over the years I’ve wondered about her and her family. What she was like, what her name is, how she died and how her parents came to that difficult (but life-saving) decision.
I’ve written twice, doing my best at expressing my utmost gratitude for what they’ve done for my loved ones and me. They’ve given me more than just “years”; they’ve given me memories and moments that will last a lifetime.
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| Thanksgiving, 2010 |
