The long story: A year and a half ago, Janessa Curnow was traveling with her cousin in Europe – walking through countries like Greece, Czech Republic, and Croatia, believing she was just beginning to fulfill her dream of traveling. She even had a good paying job that included travel.
In January of 2013 she developed a lingering dry cough, and by March had difficulty breathing. By April 6, her move-in date to her new apartment, her breathing was so labored that just 11 stairs to her new place caused her to breathe as if she had just run a marathon. It was not until early July 2013, as a result of an echocardiogram, that a probable cause for her great fatigue and labored breathing was found – Pulmonary Arterial Hypertension. Her lifelong dreams were about to be shattered.
Janessa continued to work full time, but simple daily activates such as going from her apartment to her car left her struggling to catch her breath. It was July 29 before she could see a specialist.
Explanation of PAH HERE
After an initial examination she was told not to ever get pregnant because it would kill her. She was sent home to be on oxygen 24/7, with appointments for 7 tests to determine the type and classification of her pulmonary hypertension. Dreams of motherhood were beyond her reach.
Knowing medical bills would be a reality for her, she continued to work full time with her oxygen while still experiencing great fatigue, trouble breathing, and chest pains. Her final tests were a heart catheterization and Transespohogal echocardiogram (TEE). The heart catheterization was denied by insurance, but during the course of the TEE it was discovered that in addition to PAH she had a hole in her heart – called an Atrial Septal Defect – she had it since birth without it ever being detected.
It looked like a very real possibility that she might not be able to work again. Doctors then determined the best ‘cocktail’ of medicines that would at least stop the progression of the disease and at best bring some improvement.
To maintain the benefits, Janessa continued to work during the 6 weeks before she could get an appointment with a heart specialist. The heart specialist scheduled a now-approved heart catheterization to determine the pressure within her lungs, the size of the hole in her heart, and to test what would happen if the hole in her heart was repaired. During the procedure her heart rate, oxygen levels, and blood pressure all dropped dangerously low. She was admitted to the ICU to monitor her vitals; pressure in her lungs was 56 (normal pressure is 18-20). It was determined that she was already advanced in her PAH – stage 4.
This outpatient procedure turned into a 3-week hospital stay.
Her vitals needed to stabilize and decisions on medications needed to be made and then monitored before she could be released from the hospital. Since her condition was so severe, the strongest medicine available was prescribed. Janessa now requires intravaneous medication 24/7, oxygen, and seven other types of medication to maintain her condition. While the medicines may hopefully stop the progression of the disease, there is no guarantee that any improvement will occur. Should her condition continue to worsen, the last resort would be both lung and heart transplants.
The intravaneous medication has to be handled with critical care - to be off the medicine or disconnected from her central line for more than 6 minutes could collapse the very arteries within the lungs that it is meant to help.
Within 8 months, Janessa’s life went from one full of plans and dreams of the future to one in which she took life day by day. Very early on many responded to news of her condition with messages of hope, healing, and prayers. Janessa said, “I appreciate all the messages of hope and faith they send, yet while I believing in healing I need to learn to live today.” And that is exactly what she has set out to do. Doing whatever needed to be done medically, taking responsibility for her own medical care, asking for and accepting the help offered to her, staying in contact with friends and family, and participating in her church and small group. She has done this in characteristic Janessa style with humor, strength, and an attitude she defines as “meh!”
In other words, "this is my life now."
Part of taking responsibility and accepting life as it is, is facing the fact that work may not be part of her future and there needs to be another way to pay the bills and remain independent. With her doctor’s advice she has filed for federal disability, which
many say is usually denied on the first request. The very earliest she could hear back from the Federal Government would be the second week of April 2014, which happens to be when her short term disability ends. If it is denied, she will have to go through an appeals process that could add a minimum of another 6 months before she gets another determination on whether she will receive this benefit.
Anticipating a gap between when her short term disability ends and federal disability begins, Janessa needs to find ways to pay not only her mounting medical bills, but also her daily bills such as rent, utilities, and food. So many of you have said, “Let me know what I can do to help.” So we are reaching out with a request to help fund at least 6 months of living and medical expenses while Janessa waits to hear from the federal government. Should she get approved from federal disability, any excess donations will be put toward medical bills and insurance costs.
Your prayers, kind words, and donations are incredibly valued and appreciated!
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