Today is a big day. Today is the day I get to talk to you about Janessa!
I met Janessa in January of 2012 when I was at job training for 10 days in Grand Rapids MI. I was beginning a job that would later take her and her colleagues’ jobs. Something I didn’t know until I arrived at training. It was kind of a horrific situation as the economy was still in a deep dark place, especially in Michigan.
But you know what? Janessa (And 99.9% of her co workers) was amazing! Incredibly upbeat, supportive, hilarious, and kind. While I spent 2 work weeks in the middle of dark, cold snow, in an office that refused to open the blinds during daylight hours and decided to lock the single use bathrooms because, “too many people were using them,” I learned that Janessa had a passion for service. She held many fundraisers to travel the world and help children – those were the trips on her travel list. While I was (literally) booking a trip to Spain, Janessa was scheming to do another expensive service trip.
After I went back to San Francisco and started in on my job, she remained incredibly supportive even as her team disintegrated and her job changed. I followed her blog which highlighted her quirky sense of humor and her travelings around the world through work and through adventure. And then it went silent for awhile. I noticed some facebook updates about chronic shortness of breath and a lot of hospital testing.
This is where I point you to the Team Janessa page (put together by another lovely and talented friend, Kelsey). I’m going to quote some info from it for ease and so I don’t mess up the facts.
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.
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.
This is not just an example of Janessa’s amazing spirit, but also of the trouble with our healthcare system and the struggle those with chronic illness or disabilities have functioning with all of the bureaucratic bullshit.
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.
I’m asking if there is any way you can spare any extra money in order to assist Janessa with her daily costs until her paperwork for federal disability can go through. Please visit the Janessa page for more about her condition and the ongoing struggle she has had to deal with. She is an amazing inspiration and has spent so much energy working to help others, I think it is due time to help her.