Andy and I would like to begin my extending much gratitude to our family and friends. The past year has been extremely challenging as we navigate a new, life-threatening diagnosis layered on top of a chronic health condition. During COVID nonetheless. We have, at the recommendation of special family friend, decided to start this website so Andy can keep everyone abreast of my treatment as there are many ways it could play out. It will be most efficient for him to update everyone at the same time (via this website). So, thanks for accepting the request, I value each and every one of you. Here's my story......
I began having shortness of breathe in spring of 2019 but Andy and I thought it was my dysautonomia. It worsened by the fall of 2019 and I was having a hard time keeping up with physical activities and walking our dogs. I saw my doctor who ordered a CT scan of my chest and found multiple spiculated lesions. She referred me to a pulmonologist who did a PET scan and all but ruled out malignancies- he rather thought they were inflammatory lesions. In December of 2019, I had two small TIA's and found out in January that I had a large Patent Foramen Ovale (PFO) which is a long group of words that means "whole in the heart". I had it closed in February 2020 but my shortness of breathe only got worse. Due to COVID restrictions, I was not able to get back in to my cardiologist until mid-May when I had an echocardiogram that showed a large clot on my pacemaker wire and significantly increased pressure in the right side of my heart. I had a CT/Angiogram the following day and was diagnosed with severe pulmonary embolism (blood clots) in both of my lungs as well as suspected pulmonary hypertension. I began heavy blood thinners (for what was diagnosed as a clotting disorder) and was referred to a pulmonary hypertension specialist at John Hopkins. The months of June, July, and August brought worsening pulmonary hypertension, right sided heart failure, and passive hepatic congestion. The criteria for such disorders states that an individual has to be on effective blood thinners for 3 months before specific testing can be done to confirm a diagnosis of pulmonary hypertension and right sided heart failure. I had a heart catherization and pulmonary angiogram in late August that confirmed pulmonary hypertension, right heart failure, and something called Chronic Thromboembolic Pulmonary Hypertension (CTEPH). CTEPH can be defined by chronic blood clots in the lungs have scarred and occluded the pulmonary arteries.
CTEPH is a terminal diagnosis BUT the type I have is the only type that can possibly be cured by an open-heart, open-lung surgery called a Pulmonary Thromboendarectomy (PTE). PTE surgery would remove all of the scar tissue in the pulmonary arteries restoring blood flow and hopefully returning the lungs and heart to near normal function over time. So, my specialiat at Hopkins has referred me to UCSD in San Diego for medical testing to see if I'm a candidate. I have a 50/50 chance of being a candidate since all of my scar tissue is in the distal branches of my pulmonary arteries but am super hopeful! If I have surgery, it will be on October 20, 2020. If not, we will return to Maryland and explore medications that dilate the arteries buying me some more time.
It’s been a crazy ride but one I hope we can put behind us.Thanks to everyone for their support. I have enjoyed hearing from many of you the past couple of weeks and touched by all the sentiment. Your love, prayer, and support mean the world to us!