Heidi's Battle with Cystic Fibrosis

Written by Christa Schroeder (Mom)

Our loving Heidi was born on a sunny 22nd day of May in 1986. After two wonderful sons, a girl, what joy! But at a day and a half years old, the Doctor realized and told us that she had an obstruction in her intestine. She was then transported to the neonatal ward where 30% of her upper intestines were removed. We were then given an 80% chance that Heidi would have Cystic Fibrosis. At one month, we were still in the hospital, and she was fully diagnosed with this devastating disease. At that point, we were given a 50% chance that our precious little girl might make it to the age of 18. Heidi was baptized in Intensive Care by our dear Pastor Orville Hiepler.

Heidi had pneumonia for the first time and was hospitalized when she was just 5 months old. We had just moved from Camarillo to Bakersfield. She was hospitalized a few more times by the age of 4, but our active and always happy little girl was on antibiotics most of her life, and was forced to do 3 to 4 treatments each day all of her life. She had a healthy spell until the age of 10 when she had severe ulcers all the way from her esophagus down to her lower intestines. Heidi had been hospitalized for CF "tune ups" a few times before that. However, the worst of being hospitalized was hoping that she did not have to get poked too many times in 2 weeks. Regardless, even with always doing her treatments, her cough grew stronger, when more bugs grew in her sputum.

In 7th grade her lung collapsed due to a routine bronchoscopy. Heidi still played Volleyball and her team won the district championship. Also, on our home basketball court no one could beat her. However, Heidi became more ill too often and had to quit going to school. A short depression period hit Heidi as she realized how serious Cf really is. Many acquaintances in the hospital began dying of CF. Heidi had one infection after another and was diagnosed with diabetes in 2000. We had to have major surgery and her middle right lung lobe was removed. Along with more intense therapies and treatments than ever before, her hospitalizations grew more and more frequent. Heidi was also confirmed by our Pastor Will Hazard October 29th 2000. Heidi's faith in our dear Lord was very strong and kept Heidi and our family going.

2001 started a new battle with numerous surgeries removing kidney stones. She was in such excruciating pain that she coughed up blood and fainted to the floor from one of her kidney stones. She had several procedures to remove them over the next years.

In June of 2002 Heidi gave in to the persistence of Rodney. He was a young man that was 2 years older than Heidi, and was in our church's youth group. He had been trying to win her over for some time. In June they fell in Love and it was so special to see Heidi with that glow. It was a little hard for Heidi's Daddy though! But soon he realized what a wonderful, responsible, and kind hearted young man Rodney is. Until Rodney, Heidi's brothers, and Kim were her best friends. With the exception of her CF friends Tiffany and Christen, and her friend Sherry, who Heidi mostly could only talk to on the phone, she rarely saw her other friends. She always enjoyed her cards from all of our church friends and her Bakersfield High School German class.

Heidi's love for the Lord was so strong that she even went to church in her wheelchair and on oxygen before hospitalization. Going to church was her big event of the week. She especially loved all of her elderly friends at church. Their hugs meant so much to her.

In Heidi's last summer we managed to go on a one week trip to Florida and on a cruise to the Bahamas, through the "Wish Upon a Star Foundation". Heidi made the entire trip without oxygen, the reason being that the trip was right after a hospital tune up. It was wonderful having our whole family together. We also managed a few beach trips where David brought the generator, Heidi's big therapy machine and vest, the Nebulizer breathing machine, and an ice chest with all of her medications. We would always try to park overlooking the ocean, so that she could have a nice view doing her treatments. The distance Heidi could walk along the beach always depended on whether Heidi had just come home from the hospital or needed to go soon.

During December of 2002, Heidi's veins became so bad from being in the hospital all the time that a mediport was surgically installed. The hospital became her second home, and with the hospital being 2 hours from our house, I always stayed with her. Everybody in the hospital was in love with Heidi because even when she was very sick, she was always sweet, polite, and so brave. We even became dear friends with the cafeteria crew and housekeeping. The nurses, nursing assistants, and therapists became loving friends to our whole family. Having so many wonderful friends in the hospital made having to go to the hospital much easier for us.

Heidi's cough had gotten so severe by April 2003 that she had not been able to keep food down. Her diabetes along with everything else kept fighting against her no matter how hard we tried. The doctors then performed a Fundoplication operation, and surgically installed a Mickey and a feeding tube for night feedings. They also fixed a hernia since they were putting in the feeding tube, and all of that kept us in the hospital for 3 weeks. David, the boys, and Rodney would come to see us every day off. We were blessed to have Heidi's Godparents, our best friends, living only 10 minutes from the hospital. They were always there for us mentally and physically.

In November 2003 Heidi had another partial lung collapse. A drainage catheter was put in, but it was almost impossible to do good treatments. The transplant team wanted her to be on a Bipap machine that would force air into her lungs, because she became more and more air hungry. We still managed to have an OK Thanksgiving in the hospital. We were ALL there. The chest catheter was taken out that night. But then her blood gases went too high and her last two days were pure Hell. December 6th she took a turn for the worst and we were praying for a Christmas miracle. She was surrounded by our whole family and Rodney, when she lost her brave and bitter battle on December 8th, 2003.

Words cannot express the loss we are all feeling. She was the sunshine in our lives. Everybody that knew her loved her. She was as beautiful on the inside as she was on the outside. She was intelligent beyond her years, and did not act like a typically 17 year old. Heidi was on a transplant list for a cadaveric lung. The living donor lung transplant was supposed to be a backup plan in case the cadaveric lungs were rejected.

We don't know why God takes the best at times. The only explanations I have are that Heidi's kidneys were already in such bad shape that she would not have been able to take the kidney damaging post-transplant rejection pills, and that the horribly painful surgery would not have worked anyway. It is the only way that any of us can get through the day when our hearts hurt so incredibly much that we think it will brake in two. Heidi used to tell me that I was her best friend, and that she tells me everything. I feel so blessed to have had that relationship with her. I miss my little best-buddy so much that I could burst. Not a day has gone by where we have not shed a tear, or cried our eyes out. Though, as we look at her smiling pictures in every corner of our house, we remember the loving memories of our happy, spunky, caring, faithful daughter, sister, granddaughter, girlfriend, Goddaughter and friend.

She will forever live in our hearts and not one day will go by, where we don't think of her and remember our guardian and guiding angel.

beautiful, brave, pure, and so much more...