Amy’s PTE surgery in San Diego

Amy's Diagnosis with CTEPH

On April 1, 2016, Amy received the call to go to the Emergency Room. Her CT scan from earlier that morning revealed she had had a Pulmonary Embolism (aka a PE or blood clot). She had just recently turned 30 years old.  She spent some in the hospital and was eventually sent home on Warfarin (blood thinner), plus home oxygen. She was unable to work during this time. A few weeks later she was hosting a BBQ on Mother’s Day. She was sore, exhausted, and extremely pale. Set to return to her job as a restaurant manager the following day, where she worked primarily evenings and weekends, she did. She had medical bills to pay and needed the income. She barely made it through her shift. It was the next morning she would cough up a little blood and return to the ER. Another CT scan revealed that the clots in the right lung had worsened and were covering the majority of it. They were pushing on her right heart and almost wrapped around an artery, causing her to be a high risk for having a stroke. In addition, she also had clots in her left lung now. The puzzling question was: why was she clotting while on a blood thinner? This is when a hematologist discovered she had a blood disorder called Lupus Anticoagulant (LAC), which was believed to have been the reason for the worsening of clots. After another hospital stay, she would now remain out of work for 3.5 months on home oxygen and a once a day blood thinner shot called Arixtra. In mid-July she began working very part-time and worked her way up to full-time again by Fall. 

In December 2016, a CT scan would reveal that the clots were smaller in size. In March of 2017, the clots were gone! They took her off the blood thinner in hopes that she would be okay. With her age and never having children, they had high hopes this was a one time thing and could live a healthy life, recover quickly, and possibly start a family if she chose to. 

By June of 2017, Amy was showing symptoms of a Pulmonary Embolism again. She had cold hands and chest pains at work. June 26, a CT scan would show 2 new clots in her right lung. The underlying issue is believed to be the blood disorder. Another stay in the hospital, and she learns she will now need to remain on blood thinners for the rest of her life. In addition, she is unable to have children as well due to her medication.  She was out of work for a couple weeks this time to recover and increase her oxygen levels, but was able to return full time after that. Six months later, the daily Arixtra shots took its toll; the bruises on her stomach were large and causing much discomfort. In December 2017 she switched over to Xarelto, a once a day oral blood thinner. The bruises and hematomas on her stomach finally began to heal.... things were finally looking up!

Getting to know Amy...
She graduated from Metro State University, with a Bachelors in Business Administration and dreamed of working a corporate job. She worked as a recruiter for a year, but had a hard time leaving what she knew best, which was a local restaurant she worked at since she was 16. She continued serving there once a week and eventually returned as their full-time night manager. 

She has a wonderful, supportive boyfriend who she’s been with for 9 years and 3 amazing dogs. The dogs have been the best companions in this difficult time, Jack, an 11.5 year old Malamute mix, and the two Labrador sisters, Belle and Lacey have all kept her spirits high. 

Her mom, dad and sisters have also offered amazing support as well. 

Amy is not one to ask for help, and would always tell people that there is someone else who has it worse than I do! She remained so positive despite the recent obstacles she had been through. 

Realizing her medical state was only worsening by the required labor managing a restaurant required, Amy set out to pursue a new career path. She spent 40 hours on her feet and felt tired much of the time. She always just assumed it was the excessive scarring from the PE’s. In May, Amy was offered a position close to home, with less hours and weekends off-she was so excited to be able to finally spend more time with her boyfriend, family and friends. She always said life is too short and it took all of this happening for her to  realize she needed to step back from work and live life a little. In June of 2018 she began her new position at a dental office. Finally she had a job that would put her best interests for her health and future forward.

Unfortunately, as soon as she began, Amy was experiencing fatigue, shortness of breath and dizziness. She was also extremely pale again. Due to an excessive loss of blood, she received three blood transfusions and two iron infusions. Another medical procedure was performed on her uterus to try and stop the bleeding. After the procedure, she was on 10 liters of oxygen and struggling to breathe. The next day, Amy and her mom pushed for a CT scan. They kept saying she wasn’t able to be discharged until the number of liters of oxygen she required lowered substantially. The Doctor came and reported that the CT scan revealed she had new clots in her right lung. At this point she was transferred to North Memorial Hospital. An echocardiogram revealed high lung pressures. A normal range is 20-25, but hers were 95. In other words, her right heart was working 4 times harder that it should be. She was almost immediately accepted to the University of Minnesota Hospital, and was transferred there that night. Through various tests and procedures she was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH). This condition is caused by chronic blood clots in the lungs that become scar-like tissues blocking or narrowing the pulmonary vessels. This means that at some point her body didn’t break down some of the clots, therefore causing this blockage.

Amy is now home on 3 liters of oxygen and currently remains out of work. She is waiting to hear from the University of San Diego on whether or not she is a candidate for a CTEPH surgery. This one of two places in the United States that performs this specific surgery, but San Diego pioneered it and are #1 in the world.  With this surgery, they would be able to remove some, if not all,  of the clot burden so she will no longer have those blocks in her lungs and hopefully regain up to 90% function in her heart and lungs. In the meantime, she is on a medication in which the doses will slowly increase to help her overall function. If she is not a candidate for surgery, She will remain on this medication long term and hopefully regain 70-75% function of her heart and lungs.

Why We Started Our GoFundMe for Amy

While Amy has worked so hard since she was 16 years old, and never asked for help, she could really use some support during this time. With her multiple hospital stays as well as numerous appointments over two years, she has extensive medical bills. Amy will also continue to need a lot of care. Any amount you are able to donate is so helpful to her cause. All of the funds will go to help pay outstanding medical bills, as well as any travel expenses included with frequent appointments to the U of M,  now and in the future. It will also help to fund her trip to San Diego if she has the surgery, which would be about 3 weeks minimum and include flight, hotel, and food. 

Thank you to everyone for taking the time to read Amy’s story, and share/donate to  her campaign. We appreciate it so much!