Welcome to Team Jamie Lynn's Liver Life Walk Team Page!
Please join myself and my 2-year-old daughter, Jamie Lynn, who is a 1st time liver transplant recipient, participate in the Liver Life Walk on May 31, 2014. We are helping to move forward in the fight against liver disease and we need your help!
Jamie was born on February 15, 2012 and was perfect! At three months old Jamie’s eyes became jaundice. After asking friends and family if they noticed it, no one else had so I let it go, I’m a first time mom, what did I know? She began to have a very bad day and I decided to take her to the pediatrician because I thought her acid reflux was bothering her. Her doctor then did an exam didn’t think anything was wrong, until he noticed her eyes. We were told to take her to the hospital for some blood work but not to be nervous. I proceeded to take her for the blood work he requested and went about my day. About 4 o’clock that afternoon I received a call from the doctor asking if we could come into the office to go over the results. Of course at this point I had a feeling something was wrong and got nervous. We packed Jamie in the car and off we went. He sat us down and said that Jamie’s liver enzymes were in the 1,000’s and her bilirubin was very high. He told us he had the perfect Doctor to help us and she would be waiting for us in the ER of Columbia Presbyterian Hospital in NY. I began to break down and cry and just kept holding Jamie. We went home packed necessities and off we went. We spent 72 hours in the ER. They did numerous blood tests on Jamie. She also had ultrasounds, as well as a HIDA scan, which let me tell you, is not easy to watch your 3-month-old child go through. They finally sent us home and gave us some medicine for Jamie to start; and asked us to return to the office next week if she wasn’t better. If things didn’t change, Jamie would need to have a liver core biopsy. Unfortunately things did not change and Jamie was scheduled for her core biopsy the following week. The biopsy showed inflammation. She continued to take the medicine the doctors prescribed and we made multiple visits to the specialist in the city. She seemed to be doing better until around Labor Day weekend when she was jaundice again and this time everyone seemed to notice. We were able to have blood work done that Friday and just needed to wait for her results. Tuesday morning I got to work and called for the results right away and when I saw them, I knew something was going on. Her enzymes had gone through the roof and her bilirubin was elevated again. I called Dr. Martinez immediately and back to the city we went. She suggested that we meet with the genetic counselor since her ultrasound and exam were normal.
September 12, 2012 we met with the genetic counselor and they drew some more blood to be genetically tested. Those were the longest three weeks to just sit and wait for the results. We received the results for Jamie and she was found to have Progressive Familial Intrahepatic Cholestasis (PCIF2), which is a genetic disorder. Both her father and I were carriers of the gene that was passed onto Jamie that caused her liver to function incorrectly and eventually would shut down. This was something that could happen when she was 9 months old or not until she was 6 years old but it was something that was inevitable. Our main goal was to keep her strong and healthy until she was at least 18 months old. It would all be so that Jamie would develop more to be stronger for what was to come. We continued to visit the hospital in the city and her pediatrician sometimes a few times a month so that we could keep on top of what was going on in Jamie’s body. My goal was to get her to 18 months old if not older so she would develop as much as she could before it was necessary. Around May of 2013 we could see things were starting to take a turn for the worse. Jamie’s blood work results started changing, her spleen became enlarged and she became very sleepy all the time. After a few tests they decided it was time to prepare things to put Jamie on the transplant list. I unfortunately could not be Jamie’s donor as I was not the same blood type; but we did have a wonderful friend of the family that offered to be her donor. Our friend went through days of intense testing, including blood work and scans and much more than you could imagine, but Jamie was so high on the donor list that she was only on it for 10 days and on June 28, 2013 at 4:45pm, I received a call that they had a PERFECT match for Jamie and we needed to get to the hospital as soon as possible to get her ready to receive her new liver. It was a surreal moment. As excited as I was for my daughter, my heart broke for the family of the child who was the donor. I pray every day for them and our angel. On June 29, 2013 at 6:50am Jamie went into the operating room as I sat with a waiting room full of family members waiting for word on how she was doing. At 12:00pm the surgeon came out and told me that today was Jamie’s real birthday and I truly believe that. We have our ups and downs, good days and bad, but for the time being Jamie is doing wonderfully and we are happy to celebrate life with her every day! This transplant gave Jamie a second chance at a better life. Our family is grateful for this second chance with Jamie, our little miracle and to the donor family.
Unfortunately, our situation is a little uncommon, as Jamie was only the forth transplant recipient at Columbia Presbyterian to have PCIF2. So every step I take and every dollar I raise will make a difference in the lives of the 30 million Americans living with liver disease. By making a donation on Jamie’s behalf, you will be helping the American Liver Foundation provide community-based education and prevention programs, protect the rights of people with liver disease, and fund critical research.
By passing this link along, registering for the walk (you can join our team or create your own) or making a donation you'll take us one step closer to our goal and take all of us another stride closer to a world free of liver disease!
If you chose to donate, just click the "DONATE" button below the picture of Jamie to help me raise donations for this important cause. To register for the walk, just click the "REGISTER" button and follow the onscreen directions.
Thank you for your support in advance!
|Denotes a Team Captain|