In May of 2023 Amanda was diagnosed with a rare complication from bilateral pulmonary emboli that was originally diagnosed in June 2020: CTEPH (Chronic Thromboembolic Pulmonary Hypertension) and she really needs the help of her friends, family, and communities now more than ever.

Hello, my name is Cat.

If you’ve had the honor of knowing Amanda personally, you may already know me as one of Amanda’s oldest friends. We met during our freshman year of college in 2011 and over the last 12 years I’ve witnessed her go through so many challenges, including but not limited to:

It would be an understatement to say that Amanda has been going through some of the most difficult things I have ever witnessed, all while trying to help and support those around her and maintain her 40-60 hours a week working at various jobs.

Due to CTEPH, she has not been able to work since March 30, 2023, and currently considers herself a full-time patient.

Some of you may be familiar with Pulmonary Hypertension and know that it’s a frightening diagnosis – especially for a 30-year-old - with few options for treatment while most patients are left simply managing symptoms. Amanda will have to be on blood thinners for the rest of her life.

What is CTEPH?

It’s a rare disease only affecting up to 3000 people/year in the US. “[it] is a rare and potentially fatal form of elevated blood pressure in the lungs (known as pulmonary hypertension). It occurs when blood vessels in the lung have been blocked by a clot for a long time.” Source 1 If left untreated, patients have a life expectancy of 1-3 years. There are very few places that treat this condition in the US. This link Source 2 lists the approximately 15 doctors and 30 sites in the US in 2021 that were treating CTEPH.

Fortunately, because CTEPH is caused by old blood clots, professionals have been able to find 2 potential interventions to remove them:

Amanda is working hard every day to manage her symptoms and get the treatment she needs to take care of her CTEPH. Her daily life is spent on full-time supplemental oxygen and going to see her many specialists for treatment, consultations, and diagnostics. Because there is such limited access to medical professionals who are qualified and comfortable treating CTEPH, she often needs to travel to Seattle, and soon, San Diego to continue her medical journey.

She's gone through significant testing already - seen pulmonologists, hematologists, allergists, cardiologists, nuclear medicine techs, sleep specialists, OBGYNs, psychiatrists; done nuclear medical testing, echocardiograms, CT scans, MRIs, 4 sleep studies – 3 for oxygen and one for sleep apnea – 2 right heart catheterizations, 2 ventilation–perfusion (VQ) scans, multiple 6 minute walk tests, x-rays, O2 exertion tests, pulmonary function tests, ultrasounds for deep vein thrombosis, intravenous (IV) iron infusions, and so many blood tests to look for antibodies, autoimmune markers, genetic diseases, and perform comprehensive CBCs and metabolic panels. And she still has so many tests and specialists to meet on this journey.

Amanda doesn't like to ask for help when she knows that other people are struggling, too. Her mental health has deteriorated significantly due to stress, fatigue, and pain. She said, "I've tried very hard to become the best version of myself in whatever aspect I can. I see my accountability in the way I treat people, and how my interactions affect people. I don't expect people to see that I'm sick, but I don't want to be an asshole just because I'm in pain."

She deserves good in her life - the least of which is the dignity of a decent quality of life. Amanda has done so much good for so many people, and supported everyone she could despite how much it might have hurt her to do so. She has been my best friend, my family, my confidant, and my astrological advisor for twelve years. The best thing I can try and do for her right now is to make sure she doesn't have to worry about not being able to work.

Any money donated will be used to help offset the cost of her medical journey and living expenses while she waits to hear back about her Social Security application. The disability law office she's working with to file for Social Security benefits recently told her it will take another 6-12 months for her application to be reviewed. They charge 25% of whatever Amanda may actually get paid.

We would appreciate anything that anyone is willing and able to contribute. If you are unable to donate at this time, sharing this fundraiser with your friends, family, churches, and communities would be greatly appreciated. If you would like to support in other ways, please reach out to Collette Hagen or myself on GoFundMe or through our dedicated email.

Thank you for taking the time to read this, and your support. We sincerely hope that Amanda can use this time to focus on her health and well-being.

All our love,

Cat and Collette

UPDATE 11/18/2023: Around 3am this morning paramedics were called to the house due to unusually high blood pressure and chest pain. She was cleared without needing to go to the hospital, but symptoms have persisted off and on through the day.

Link 1 - Temple Health; Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

Link 2 - National Library of Medicine; The United States Chronic Thromboembolic Pulmonary Hypertension Registry

Link 3 - Cleveland Clinic; Pulmonary Thromboendarterectomy (PTE)

Link 4 - UC San Diego Health; Balloon Pulmonary Angioplasty (BPA)