Five years ago, twice within four months of each other, Theresa was taken to the ER by ambulance with strange heart palpitations. The doctors, neurologists and cardiologists conducted a battery of tests and were unable to diagnose any “dis-ease” after seeing the results. So, our family decided to take a year off from teaching to create a lifestyle that we believed was the most conducive to good health- eating healthy and exercising regularly, possibly growing and raising our own food.
As we approached late Fall in November 2016; Theresa began to have shortness of breath, especially during exertion. She started to have problems walking up the steps to her classroom. At first it was thought she had Pneumonia, but after months of multiple procedures, ct scans, x-rays and blood tests,
Theresa was finally diagnosed with a rare lung disease known as pulmonary alveolar proteinases (PAP). This autoimmune disease occurs when there is an abnormal accumulation of pulmonary surfactant within the alveoli (microscopic air sacs in the lung), interfering with the lungs' ability to exchange oxygen from the air, and carbon dioxide from the blood causing the person to feel breathless and weak.
This disease is not life threatening, but it is certainly life changing. Once we found out PAP was an autoimmune disease, our family dramatically changed Theresa’s diet taking out all inflammatory foods, eating 90% organic and attempted to reduce the amount of stress she is exposed to in hopes of decreasing the symptoms of PAP.
In March of 2017, an accident caused a severe left patella dislocation and reinjured her hip dysplasia symptoms. So, in June she decided to go through with her 20-year awaited hip replacement surgery. Unfortunately as the implement was put in, a hairline fracture appeared on her greater trochanter, which led to 8 weeks of non-weight bearing. Now Theresa’s legs are balanced and has minimal to no pain in her hip.
Yesterday, after a routine visit with her doctor in Denver, we learned that even with all the dietary and life changes we implemented this past year, her lung capacity has continued to decline and her oxygen saturation levels tend to drop significantly (below 80) during exertion (even at Denver's lower elevation). The symptoms of PAP have consistently decreased her lung capacity by 7% in just three months. There is no known cure for PAP but whole lung lavage is the standard treatment at this time. In a lung lavage procedure, clinicians wash the lungs with saline solution to flush away protein build-up. Some patients only need one procedure where others may need several during their lifetime. One PAP patient has successfully had 22 whole lung lavages. To learn more: https://www.uchealth.org/today/2017/11/15/patients-with-rare-lung-disease-get-a-good-wash/ In addition to whole lung lavage, there are experimental medications available to help control the disease.
On December 20th and 21st, Theresa will go in for a whole lung lavage and begin experimental medication (GM-CSF inhalants). Theresa’s doctor (Dr. James Ellis- UC Health) has been doing whole lung lavages since the 80’s and believes these treatments could benefit her quality of life by removing excess surfactant on the alveoli and allowing more oxygen to travel to her blood. Our family and the doctors believe that this will work to clear the lungs and maybe a whole lung lavage is the “fresh start” that will allow her immune system to work properly again.
This has been a long ride of financial burdens that we have been managing over the past year. We were fortunate to have already received financial help from Vail Valley Charitable fund and immediate family members to cover some medical costs and to replace our car which mechanics told us was “unfixable” in October.
We thought we could catch up and be ready for the holidays, but when we received news of needing a whole lung lavage Christmas week, we decided to ask a larger crowd of family, friends and community to help us raise money for out of pocket expenses, not covered by insurance for this next procedure- co pays, deductibles & out of pocket expenses, travel expenses.
For those of you who do not live near us…We will have to drive 2 hours and over two mountain passes in winter conditions to and from the hospital in Denver. James, Lily, and Michael would like to stay in a hotel close to the hospital during the time Theresa is in the hospital (at least two days). Any funds made beyond our expenses will be donated to the PAP Foundation in order to research a cure for this rare disease. (www.papfoundation.org)
We humbly ask for your help during this holiday season. Any contribution is helpful. To help us get the word out, you can share my link to your Facebook Timeline!” Let's get T back into warrior pose breathing fully at all elevations.
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