Make Room for Kelsey's Heart
Donation protected
On December 2nd, 2014 my wife Kelsey Rider Jackson will be having surgery at the Mayo Clinic in Phoenix to correct pectus excavatum (PE), a rib cage defect that is compressing her heart and lungs, displacing many of her organs to lower positions in her abdomen, and causing a number of other health problems. PE is normally corrected in childhood, but Kelsey's didn’t cause problems until she became an adult. Dr. Dawn Jaroszewski at the Mayo Clinic is one of the few doctors in the world that specializes in correcting PE in adults. In June Kelsey met with Dr. J, who recommended surgery for her severe PE. We need your help to make this happen.
The Whole Story
Kelsey has had more than her share of medical issues. From the age of 12 she has had issues with her back. Diagnosed with kyphosis, which causes the spine to hunch forward, she and her parents tried to correct it in vain for years with a back brace. The doctors told her that if it wasn't corrected soon, her body would crush her organs, and that she would be dead before she reached 30. It was finally corrected in 2003 with a spinal fusion surgery that fused nearly all of her thoracic vertebrae, or about 1/3 of her spine (T2 to L1 ). Her X-ray shows the rods, hooks and screws that are keeping her spine upright:
Kelsey was also born with a rib cage deformity known as Pectus Excavatum, or PE. Her sternum developed concave into her chest cavity, putting pressure on her heart, lungs and esophagus, as well as forcing many of her organs to sit lower in her abdomen. Originally, this problem was mitigated by the shape of her spine; when it was hunched over, her organs had more room to function normally so her doctors didn't see it as a problem at the time. When her spine was surgically straightened it compressed her organs into her concave sternum. This caused all kinds of problems: Heart palpitations, shortness of breath, anxiety, ulcers, preventing the ability to exercise, work a full-time job, or do many of the day-to-day tasks that most people take for granted, and it would make pregnancy a much riskier experience.
In 2006, Kelsey had surgery for her PE. The surgery, called the Nuss procedure, put a single bar inside her ribcage that forced her sternum outward. The picture above is her post-operation X-ray; you can see both the rods in her spine and the bar across her ribcage. She had the bar in for two years, during which time she was able to live life a little fuller. She got regular exercise, built up her stamina, and pursued her dreams.
Kelsey has big dreams. A trained actor, Kelsey has appeared in the feature film Wright Street and on the TV show "Leverage" as well as in numerous short films and commercials. Here is a still of her on the Leverage episode "The Inside Job":
After the bar was removed in 2008, she felt good for a while. Kelsey and I got married in 2010, and have been living happily. However, over time, she noticed herself become short of breath, she started experiencing heart palpitations, and that the rest of her pre-surgery health conditions had returned. In winter 2013, after months of testing and treatments for what we thought was an unrelated health issue - one that was expensive in its own right, and that we are still making payments on - a CT scan of her chest revealed that her sternum had sunk back into her rib cage to pre-surgery levels, again putting pressure on her heart, lungs, and esophagus. Here's the CT scan:
This image is looking up from underneath about halfway up her ribcage. The bright white thing at the bottom is her spine, and the mass in the middle is her compressed heart. The top of the chest is supposed to be flat; Kelsey's is, ironically, "heart-shaped". For comparison, here is a "normal" CT scan from Radiopaedia.com:
PE is measured using something called the Haller index, which for normal ribcages is around 2.5. "Severe" PE is anything rated higher than 3.25; this is the point where it begins to affect quality of life. Kelsey's Haller index is 4.46.
Because it is congenital, PE is typically corrected in childhood. As such, nearly every surgeon in the country who performs these procedures does so exclusively on children. There are only a handful of surgeons who operate on adults, and because of Kelsey's other health issues, many of those doctors are unwilling to take on such a risky case - frankly, we were lucky to find the one who was willing to operate on her when she was 22! When we discovered Dr. Dawn Jaroszewski at the Mayo Clinic in Phoenix, it was an answer to prayer. She doesn't just work with adults, she is one of the only surgeons in the world who specializes in repairing PE in adults.
Dr. J recommends a modified version of the Nuss procedure that Kelsey had before. Rather than a single bar, Dr. J would put 3 bars in place, spreading the pressure across the chest which increases the likelihood of a successful outcome. The bars will be in for at least 3 years; Dr. J has found that 3 years is typically a good amount of time to allow the ribcage to form to the new shape. She will be able to breathe fully again, to exercise regularly, to let her heart beat freely, to lead a healthier life. We will be able to start a family.
How You Can Help
Kelsey is scheduled for surgery December 2nd, 2014. Between the medical bills we are already making payments on, the cost of surgery, a stay in the hospital of at least a week, airfare between our home in the Portland area and the Mayo Clinic in Phoenix, a place for me to stay and a car to drive while I'm there with Kelsey, physical therapy after the surgery, and missed work, we're going to need all the help we can get.
Please consider donating.
(Or donutting.)
The Whole Story
Kelsey has had more than her share of medical issues. From the age of 12 she has had issues with her back. Diagnosed with kyphosis, which causes the spine to hunch forward, she and her parents tried to correct it in vain for years with a back brace. The doctors told her that if it wasn't corrected soon, her body would crush her organs, and that she would be dead before she reached 30. It was finally corrected in 2003 with a spinal fusion surgery that fused nearly all of her thoracic vertebrae, or about 1/3 of her spine (T2 to L1 ). Her X-ray shows the rods, hooks and screws that are keeping her spine upright:
Kelsey was also born with a rib cage deformity known as Pectus Excavatum, or PE. Her sternum developed concave into her chest cavity, putting pressure on her heart, lungs and esophagus, as well as forcing many of her organs to sit lower in her abdomen. Originally, this problem was mitigated by the shape of her spine; when it was hunched over, her organs had more room to function normally so her doctors didn't see it as a problem at the time. When her spine was surgically straightened it compressed her organs into her concave sternum. This caused all kinds of problems: Heart palpitations, shortness of breath, anxiety, ulcers, preventing the ability to exercise, work a full-time job, or do many of the day-to-day tasks that most people take for granted, and it would make pregnancy a much riskier experience.
In 2006, Kelsey had surgery for her PE. The surgery, called the Nuss procedure, put a single bar inside her ribcage that forced her sternum outward. The picture above is her post-operation X-ray; you can see both the rods in her spine and the bar across her ribcage. She had the bar in for two years, during which time she was able to live life a little fuller. She got regular exercise, built up her stamina, and pursued her dreams.
Kelsey has big dreams. A trained actor, Kelsey has appeared in the feature film Wright Street and on the TV show "Leverage" as well as in numerous short films and commercials. Here is a still of her on the Leverage episode "The Inside Job":
After the bar was removed in 2008, she felt good for a while. Kelsey and I got married in 2010, and have been living happily. However, over time, she noticed herself become short of breath, she started experiencing heart palpitations, and that the rest of her pre-surgery health conditions had returned. In winter 2013, after months of testing and treatments for what we thought was an unrelated health issue - one that was expensive in its own right, and that we are still making payments on - a CT scan of her chest revealed that her sternum had sunk back into her rib cage to pre-surgery levels, again putting pressure on her heart, lungs, and esophagus. Here's the CT scan:
This image is looking up from underneath about halfway up her ribcage. The bright white thing at the bottom is her spine, and the mass in the middle is her compressed heart. The top of the chest is supposed to be flat; Kelsey's is, ironically, "heart-shaped". For comparison, here is a "normal" CT scan from Radiopaedia.com:
PE is measured using something called the Haller index, which for normal ribcages is around 2.5. "Severe" PE is anything rated higher than 3.25; this is the point where it begins to affect quality of life. Kelsey's Haller index is 4.46.
Because it is congenital, PE is typically corrected in childhood. As such, nearly every surgeon in the country who performs these procedures does so exclusively on children. There are only a handful of surgeons who operate on adults, and because of Kelsey's other health issues, many of those doctors are unwilling to take on such a risky case - frankly, we were lucky to find the one who was willing to operate on her when she was 22! When we discovered Dr. Dawn Jaroszewski at the Mayo Clinic in Phoenix, it was an answer to prayer. She doesn't just work with adults, she is one of the only surgeons in the world who specializes in repairing PE in adults.
Dr. J recommends a modified version of the Nuss procedure that Kelsey had before. Rather than a single bar, Dr. J would put 3 bars in place, spreading the pressure across the chest which increases the likelihood of a successful outcome. The bars will be in for at least 3 years; Dr. J has found that 3 years is typically a good amount of time to allow the ribcage to form to the new shape. She will be able to breathe fully again, to exercise regularly, to let her heart beat freely, to lead a healthier life. We will be able to start a family.
How You Can Help
Kelsey is scheduled for surgery December 2nd, 2014. Between the medical bills we are already making payments on, the cost of surgery, a stay in the hospital of at least a week, airfare between our home in the Portland area and the Mayo Clinic in Phoenix, a place for me to stay and a car to drive while I'm there with Kelsey, physical therapy after the surgery, and missed work, we're going to need all the help we can get.
Please consider donating.
(Or donutting.)
Organizer
Leo Jackson
Organizer
Vancouver, WA
