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Evelyn’s Story

Evelyn Hazel Keltgen was born June 23, 2007.  She was diagnosed with primary pulmonary hypertension at the age of 6 weeks and started treatment by the age of 3 months.  Her PH specialist is Dr. Ivy in Denver, CO.

Evelyn is a wonderful girl - smart, active, and full of life! She captures the hearts of all who know her.

Evelyn was born June 23, 2007 and within minutes of birth started to turn grey and not be able to breath. She was diagnosised with bilateral tension pneumothorax and was air-lifted to Children's Hospital in Minneapolis. The flight team arrived a couple hours after her birth and put a chest tube in on the right side to relieve the pressure. The left was not severe enough to require a chest tube. She spent 6 days in the NICU. They gave her a clean bill of health with no long term effects. At the time of discharge her breathing was still rapid (about 80 breaths per minute) and they said it is common with pneumothorax and it should resolve in one to two weeks. Two weeks came and went and the breathing remained rapid. It wasn't until six weeks old that doctors started to become more concerned and she was referred to specialists (pulmonologist first, then cardiologist). She had echocardiograms that showed pulmonary hypertension and enlarged right atrium and ventricle due to the heart having to work hard to pump blood to the lungs. No heart defects were found. She had a CT scan of her chest and no abnormalities were reported. Therefore, she was given the diagnosis of primary pulmonary hypertension (no known cause for the pulmonary hypertension and therefore no way to fix a problem to correct it). In other words, there is no cure and will eventually lead to death. There are some drugs that are used to reduce the pressure and slow the progression of the disease, however, as the condition progresses the only other thing is a lung or lung-heart transplant. If left untreated the right side of the heart will be overworked and fail - cardiac arrest. None of the doctors can give us a time frame on how long she can sustain or her prognosis. None of the doctors have ever come across another case like Evelyn's before. Evelyn's care was initially provided in New York City by the late Dr. Robyn Barst, world-leading specialist of pediatric pulmonary hypertension. In April 2008 we started traveling to Denver, CO to her current PH specialist, Dr. Dunbar Ivy. Her follow-up care between heart catherizations is done in the Mayo Health System in Rochester, MN. We initially flew to NYC every three to four months where Evie had a heart catherization, EKG, CT, echocardiogram, and blood work. We currently travel to Denver once a year with a heart catherization annually.  Read our journal for on-going updates.

Evelyn has responded well to the medications and her pressures are remaining stable with a mild level of pulmonary hypertension.  She is growing well and developing normally.  She enjoys playing the piano, riding horse, riding bike, and learning about all types of animals. 

We have been humbled by people's generosity to us.  Your prayers and support are appreciated beyond words. 

Latest Journal Update

Recent doctor visit

Hello friends and family,

Life has been busy and I haven't been very good at updating this site.  Overall, Evelyn has been doing really well!  She came down with some type of cold a few weeks ago and had coughing and wheezing.  I wasn't able to keep her lungs clear so ended up taking her in and she was put on prednisone and an antibiotic.  She continues to be on oxygen at night per her request.  But she returned to school and was able to go trick or treating. 

Today we had her 6 month check up with her pediatric cardiologist at Mayo Clinic in Rochester.  She had an echo and then we met with the doctor.  She continues to do well and is stable.  Pressures estimated at 34, which is comparable to what was found in Denver in May.  We are very happy with the results and her continued response to treatment.  She did a great job at the appointment and throughout the day.  Her treatment will remain the same.  It is working very well for her!  The plan is to see Dr. Ivy in Denver in the spring (about 6 months).  It is hard to believe that we are at six month intervals for appointments. 

November is pulmonary hypertension awareness month.  Feel free to share Evie's story, wear purple, and visit phassociation.org for more information.  There is a new facebook page called PHAware which gives facts and details about PH and PH related statistics.  Research continues to try and better understand this disease, but there is still no cure.

Some of you have followed Evie for a long time.  If you recall, there was another young girl in Mankato named Katie Grace who was diagnosed with PH shortly after Evie was.  Katie Grace was five years old at the time she was diagnosed and the disease was further progressed with more damage to her organs.  Her family moved to California many years ago for her PH treatment and transplant. This past June she underwent a heart and double lung transplant.  She is recovering well, with ups and downs, but is PH-free.  Please continue to pray for this family as they continue to have many needs due to her medical issues and transplant.

Thank you for your on-going support, prayers and love for our family.

Melissa