Kayleen Flanery: Surviving Cystic Fibrosis and the Need for Health Care Reform, Now!

Transplant Update - March 12th, 2009
Great news today -- Kayleen will be leaving the hospital and returning to her West Virginia residence.

Transplant Update - March 10th, 2009
Kayleen now has all six drainage tubes removed. Doctors will perform an x-ray tomorrow to make sure that no fluid has formed on the lungs. Also, she had 62 staples removed from where the lungs were removed/put-in. She still has some staples left from the removal of the drainage tubes but not too many.

Transplant Update - March 4th, 2009
Kayleen had a biopsy today to see if her body was rejecting the new lungs, and to verify that her new lungs were adhering to the chest cavity as they are supposed to. She also had a CAT scan to see if her new lungs were growing a fungus that her old lungs were growing. It will be a day or two before the tests come back.

Transplant Update - Feb. 26th, 2009
Kayleen's doctors are currently working on regulating her pain medication, and currently have her on a feeding tube to ensure she receives the nutrition she needs.

Transplant Update - Feb. 21st, 2009
Kayleen has suffered a setback in her transplant recovery, but is in good spirits.

Happy Birthday, Kayleen!
From your friends and family, Happy Birthday!

Transplant Status Update - Feb. 20th, 2009
Kayleen is now able to sit up and speak after her double-lung transplant. Doctors have commented on how well she is doing so soon after the surgery, and Kayleen is in good spirits. Please click here for post-transplant photos.

Transplant Status Update - Feb. 19th, 2009
Last night Kayleen took a step forward toward a brighter tomorrow. She was able to breath on her own for two and a half hours, and as of 6 AM this morning, she is currently breathing without the assistance of a ventilator. She is also regaining her color. We should have a photo or two to share soon.

Transplant Status Update - Feb. 18th, 2009
Kayleen's transplant is complete. At the current time, she requires a ventilator to properly breath with her new lungs. More updates to follow.

Transplant Day - Feb. 17th, 2009

On the morning on February 17th, Kayleen received the long awaited call indicating that a matching lung donor had been found. Today Kayleen will undergo a Double Lung Transplant surgery. Our thoughts and prayers are with her and her family.

I Have a Dream of Becoming Self Sufficient
But until I can make that dream a come true I need some help.

Before I start, let me just say that Cystic Fibrosis effects each person differently. This is my story.

When I was born they did not know what was wrong with me but they knew that something was just not right. At this time we did not know that my parents were carriers of the Cystic Fibrosis gene. And because they are carriers of the gene that means there is a 25 percent chance that I would have Cystic Fibrosis. I had my first surgery when I was 23 hours old. I was born with a blockage in the intestine. Then that lead them to the sweat chloride test, which is one of the ways you can find out if you have CF. My result was positive.

For the next several months I was in and out of the hospital. I was one of the only babies to get released from the neo-natal unit and then get readmitted. Several times they thought that I would not survive. A few weeks later I re-obstructed and at that time I had 40 cm removed for my lower intestine. Throughout all of my younger years I was in and out of the hospital for respiratory reasons, on average of every three months during my toddler years.

Because of being sick so often I missed a lot of school. Every time it was time for school to start I would get sick and I would get sick again in the winter. This happened mostly because I have a weakened immune system. It is easy for me to get sick if someone around me is sick.

Besides lung problems I also have problems with my digestive system. I get stomachaches and go to the restroom frequently. I also surfer from mal absorption. This means that your body has a hard time getting the nutrients and calories from food. I have to take enzymes because my body does not make its own enzymes due to the fact that my pancreas doses not work properly. This makes it very hard to gain weight. It is not that I do not eat, because I eat a lot. I am also small in stature because of this.

At the age of twelve I received a G-tube placement. This allowed me start nighttime feeding so that I could get calories when I was sleeping. This worked well at first, but after some time I started having trouble with weight gain again.

When I was 17 I started taking a medicine that made me even hungrier and with that I gained about 20 pounds. Also around this time I started to get sick again. The mucus I was now coughing up was containing blood.

My hospital stays average two to three weeks each time I am admitted. Since January 2006 I have been hospitalized on average of every two to three months.

Because of the frequent respiratory infections I have developed permanent scaring in my lungs. It is becoming harder and harder for my lungs to get oxygen to my body. Three days before my 17th birthday my doctor placed me on oxygen when I sleep. When sleeping, my oxygen level drops down into the high 80's, whereas a normal oxygen level is high 90's.

The hardest thing that I have ever had to deal with happened next. My doctor told me that she thought I should go and see a lung transplant doctor. I cried. At first I said "No I cannot", and then I got to thinking if I do not do this I will die. I do not want to die, so I told my dad that I was willing to do whatever it took to stay here as long as a can.

I went to the lung transplant doctor. During the four days of testing, I took numerous tests and learned all about the transplant process. I was called two weeks after being evaluated. I learned that I was a great candidate for a lung transplant. It was not time yet, but my lungs were going to fail me at some point.

In January, I was placed on oxygen whenever I do any type of activity. I used to go to the CF clinic every three months, but I now go every thirty days. While I am there, they take my weight and I have to do Pulmonary Function Test. I like to call them PFT's. From there we look at the FEV1, which is the amount of air that you can breath out in one second. My FEV1 is in the low twenty's and teens. I also have scheduled appointments at the lung transplant center with the transplant team.

In June I went on oxygen all the time. In October I was activated on the transplant list. Many factors went into them deciding that it was time to be activated. My my lung function was 18% and another was that my weight was getting worse. Plus I told them that my quality of life was decreasing. The average wait for a double lung transplant is three months. In the mean time I am starting to raise money and starting a foundation to help me pay for my medical costs. When I am done needing help I am going to help others with the money that is raised.


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Please direct questions to Peggy Hilton