Chanin’s Transplant Story – Updated for my 20th Year Anniversary
A Light at the End of the Tunnel
I was never considered a sickly child. From as far back as I can remember, I had lived with some environmental allergies and probably endured a few more respiratory infections than the average child, but nothing that proved to be significant or too far out of the ordinary. And, I never felt limited by these symptoms. I was a strong and energetic child and lead, what I would consider, a pretty normal childhood. I had been a nationally competitive gymnast for ten years, and then a cheerleader in high school, before ever experiencing any symptoms of lung disease.
It wasn’t until I was 14-years old, and a freshman in high school, that my health decided to take a turn for the worse. I was first hospitalized in March of 1994 due to a full-blown, debilitating, double pneumonia. After two weeks in the hospital, I was released only to end up in the hospital again two days later with the same diagnosis. The following months I practically lived in the hospital, often in the ICU, with severe pneumonias, collapsed lungs, shortness of breath, and pleurisy. Finally, in October of 1994, after all treatment options had been exhausted, I underwent an emergency Open-Lung Biopsy. The results came back just days later, and were confirmed by two major universities, that I had a very progressive form of a rare, obliterative and inflammatory, small airway, lung disease known as Bronchiolitis Obliterans with Organizing Pneumonia (B.O.O.P.). This was further complicated by the additional diagnosis of Bronchiectasis, in which damage to the airways causes them to widen and become scarred, creating an ideal environment for bacteria to grow. This results in repeated lung infections and eventually the loss of the ability to move air in and out of the lungs. The news was absolutely devastating.
Unfortunately, by the time my lung condition was given a name, my lungs were irreversibly damaged. The major surgery necessary to make my diagnosis had taken its toll on my already weakened body, leading to months of recovery. At the time, it did not appear any type of recovery would be in my future. But, with the help of my skilled doctors, a very strong will to live, and the many prayers of family, friends and even strangers, I grasped on to my last hope. I made the decision to forget about the odds that were stacked up against me and pushed forward putting up the fight of my life, with a force of determination that I never knew I possessed. It was then that I became confident that there would be a light at the end of the tunnel.
Before my diagnosis, my treatment had included tapering doses of steroids, intravenous antibiotics, oxygen therapy, supplemental intravenous feedings, inhaled and nebulized medications, and chest percussions. After my diagnosis, my pulmonologist became even more aggressive. My barely seventy pound body was inundated with massive doses of steroids, stronger intravenous antibiotics, as well as an immunosuppressant and a chemotherapy drug. I also had a gastrointestinal tube (G-tube) placed in my stomach for additional nutritional feedings in an attempt to get my weight up. Because of the extreme weakness I experienced from my illness, the grueling side effects of treatment, and the lack of oxygen running through my bloodstream, I was no longer able to walk. I lost most of my muscle mass, and I lost most of my hair. While it seemed most fifteen year olds were making the arduous decision of how to style their hair for their next high school dance, I was sinking in the reality that I must sacrifice my own hair in hopes that I might be able to walk, breathe, and be healthy again.
After months of unrelenting treatment, my lung disease showed no improvement. My lung function plummeted to 14%, and my oxygen requirements skyrocketed to a minimum of 6 liters at rest, twenty-four hours a day. My decline was rapid; I was literally dying to breathe. My doctors came to the only possible conclusion and informed my family and me the shocking news that I would need two new lungs from a donor in order to survive.
The idea of having my native lungs removed from my body, and new foreign lungs replacing them, was beyond frightening to me and initially hard to comprehend. Double-lung transplants had not even been performed for 10 years at that time, so there was not a lot of information on it to research. However, to not choose transplant, offered certain death. I was definitely not ready to give up yet and neither was my family. We placed our faith in my medical team and God and decided to go for it.
It took a while before I was able to wean my steroid level low enough to be eligible to be placed on the transplant list. Steroids, such as Prednisone, are known to inhibit or slow healing time. So it was important that my level of this medication was kept to a minimum. The tricky part was that the steroids I took decreased my lung inflammation, helping to prevent my frequent hospitalizations.
Once I was able to achieve this initial feat, I was sent for my transplant evaluation at the University of California San Diego (UCSD) in Hillcrest. After several physically demanding tests on my body, I was at last approved for transplant and listed with UNOS (United Network for Organ Sharing) on November 21, 1995.
It was an extremely rough wait for my transplant, emotionally and physically. Each time I was placed in the hospital, I became ineligible to be transplanted. The frightening, but very real, thought often crossed my mind that my lungs might not last long enough to ever even have the surgery. However, after 10 1/2 tedious, treacherous, torturous months of waiting on the waiting list, my family and I finally received the long awaited call! I later learned that it was perfect timing. I was told I most likely would not have survived more than a couple of weeks without the new lungs.
On September 30, 1996, at the age of seventeen, I received my life-saving, double-lung transplant. After the nearly eight hour surgery, I was rolled on my bed into the ICU. I was told by my many family members and friends waiting to see me that I gave them the thumbs-up. I don’t remember much of what transpired the next few days, but it was only three days later that I was taken off the ventilator. And just one week after my transplant, I was placed in a regular hospital room where I was quickly up and learning to walk again. My hospital stay lasted fourteen days in total, during which I experienced one bout of mild rejection. My mom and I then temporarily relocated to San Diego for the next three months to be close to the hospital for my clinic appointments and physical rehabilitation.
During my time in San Diego, I completed the first half of my senior year of high school. After returning home, I completed my senior year and graduated with honors alongside the friends I had started my freshman year with, before becoming sick.
Because of my lung transplant, I have been able to accomplish so many wonderful things I would never have dreamed I would have the opportunity to achieve. I graduated from high school; received my Bachelor’s degree in Psychology; worked full-time; became an aunt; got married to the love of my life, James; bought a house; traveled around the world; and became a Mommy to my son, Gavin. To honor and remember my donor, my husband and I even named Gavin’s middle name after him.
I have led a very happy, rewarding life during my many years post-transplant. I was told twenty years ago, that I would be extremely lucky to get 10 years out of my transplanted lungs – 10 additional years I would never have seen. To be able to say, twenty years later, that I am still doing fantastic with these lungs is amazing! Yes, I have had some complications in these twenty years, but nothing that remotely compares to what I went through prior to my transplant. Eight years post lung transplant, I did go into kidney failure due to medication toxicity, but on November 17, 2004 I received a living-related kidney transplant from my loving and supportive dad. I recovered well from that transplant, and I was back on my feet in what felt like no time at all.
I will be forever grateful to my donor and his family for their generosity and kindness; making such a tough decision during an extremely sad time. I can’t imagine the pain they went through, and then to turn around and make the hard choice to donate their son’s organs was nothing short of a miracle. Their gift to me proved that a beautiful light can be shone even in the midst of a tragedy. I have had my donated lungs now many more years than my donor did during his much too short time here on earth. I hope to someday have the opportunity to tell my donor’s family just how truly appreciative and thankful I am of their decision to give me – a stranger – life, during what must have been the hardest day of their own life.