After PAH Diagnosis

ARTIST SUZANNE MILLER , 41, lost hope after her pulmonary arterial hypertension diagnosis. When she no longer could work, she became homeless and lost everything. Thanks to therapy, her pulmonary hypertension specialist, and friends who took her in, she and her dogs Kate and Leo now have a home. They live in Thousand Oaks, California, with her friend Steve and his family. Suzanne, who uses flowers and plants to make living art, enjoys gardening, painting and collecting old books for pressing flowers.

BY SUZANNE MILLER

When I was 16, I visited a primary care physician who specialized in diet and nutrition. After talking with him at my appointment, I was prescribed phentermine and diethylpropion diet pills to help me lose weight. I started a regimen of pills and a strict diet. I lived in an affluent community where vanity was valued more than good sense. After I lost 30 pounds, I was a “Westlake Girl.” I was thin, tan and I fit in. As I grew up and continued to take diet pills, my weight and moods fluctuated. While I was in college, I was prescribed Adderall to treat ADHD. The Adderall seemed to help my weight and mood swings. I was in my last semester of college, studying for my final exams when my insurance had changed, and my Adderall was no longer covered. I was desperate and went to my marijuana dealer for something to get me through my exams. He gave me methamphetamines and warned me to stop taking the meth as soon as my finals were over. I didn’t take his advice. I became addicted to methamphetamines for seven months. After entering a rehabilitation program for young women, I beat my addiction. Little did I know that the drugs I took for seven months potentially could damage my future health. Though I stopped taking meth, I continued taking diet pills and Adderall on and off for 20 years.

Living Art

After college, I became an artist, and my medium was living walls made from succulents and colorful sustainable botanicals. The work was long, strenuous and demanding. I worked day and night, slept little and ate only when forced by family or friends.

In January 2019, I came down with a flu that developed into pneumonia. After my recovery, I continued to work as much as I could and eventually moved into an artist community where I felt my business could thrive. The three-story condo with a workshop on the first floor and a rooftop garden seemed very appealing.

As time went on, I found it increasingly difficult to manage the six flights of stairs within the condo. I made an appointment with the doctor to discuss my shortness of breath and lack of energy. The doctor treated me for asthma and prepared me for the possibility of stomach cancer.

JOURNEY TO DIAGNOSIS

I took little stock in this diagnosis and didn’t inform my family. I continued with the breathing treatments, but they didn’t seem to help. I couldn’t work, sleep or eat, and my symptoms worsened.

In July 2019, I was supposed to attend a going-away party for a friend, but I couldn’t get out of bed. I must have been lying there for over 24 hours when my mother found me unresponsive and blue. She called 911, and I was rushed to Community Memorial Hospital.

While I was minutes away from succumbing to this unknown illness, a doctor passing through the emergency room stopped in.

Fortunately for me, this doctor was a pulmonologist and recognized the signs of pulmonary hypertension (PH). He told the emergency room doctor to order an echocardiogram of my heart. The EKG confirmed his suspicions. The hospital wasn’t equipped to treat PH so the next day I was transferred to Cottage Hospital in Santa Barbara.

There, I met my PH specialist, Jeffrey Sager, M.D. After numerous tests, I learned I had an even more rare disease, pulmonary arterial hypertension (PAH). For the next nine days, I remained in the intensive care unit, where I was treated and educated about changes I needed to make in my life because of this dreaded disease.

In the ICU, I learned about the link between stimulants and PH. Dr. Sager told me to stop taking all stimulants, including Adderall and diet pills. He suspected my seven months of meth usage combined with 20 years of Adderall and diet pills led to my PAH. It shocked me that something I had taken when I was in my early 20s was affecting me in my late 30s.

As I prepared to leave the ICU, the staff handed me a 300-page manual on PH and sent me on my way. I didn’t realize the life I had known was over. I experienced daily pain and was prescribed Veletri through a Hickman catheter plus oral Adempas and Opsumit.

My outlook on life was bleak. I was depressed, angry and felt worthless. I went to the internet for answers and went down a rabbit hole that told me I needed a double lung transplant to live longer.

That ended up not being the case, but I faced multiple complications during the first couple of months acclimating to my life with PAH. After leaving the hospital, I lost everything and became homeless. I was disabled, living out of my car and trying to manage my new diagnosis both physically and emotionally.

I continued to struggle with my mental health and could not see a light at the end of the tunnel. I thought that if this was the life I was going to live, then I did not want to live at all.

As I began seeing my doctor to care for my PAH, I also began seeing a therapist to help deal with my emotions. I discovered the Pulmonary Hypertension Association (PHA) online forums and Facebook groups, which taught me more about how I could thrive while managing with my PH.

In 2022, my friend Steve and his family took me in. They gave me a safe space to mourn my old life and establish my new one. Things finally made a change for the better.

One Step At A Time

To others who recently have been diagnosed with PH, make sure you have a good medical support system. If I have learned anything, it’s that your mental wellbeing is just as important as your physical health. Receiving the care your need for your mental health after your diagnosis is just as important as your regular treatments. With a good care team, you can understand your own PH and focus on your own path. Take time for yourself to adjust to the changes that will need to take place in your life and for those around you. Stay connected with the pulmonary hypertension community, whether it's on Facebook, online chat forums or through the Pulmonary Hypertension Association. Know that everyone’s PAH story is different and everyone has different struggles.

Since my diagnosis, I’ve been shifting my outlook to a more positive state of mind and I’ve set small, attainable goals that have helped me through the past few years of my PAH journey.

In times like this, it feels impossible to maintain a sense of hopefulness or optimism about the future, with or without a PH diagnosis. But as uncomfortable as it may feel, I’m continually pushing myself to imagine a better, brighter, healthier future by taking one small step at a time. I’ve learned to see the world for what it is and appreciate what I have accomplished and what I still can do. Although the world is suffering, it also is full of brave people. I choose to be brave, and you can too.

Research continues into the causes and development of PH, including stimulants. Learn the connection between stimulants, like methamphetamines, and PH at PHAassociation.org/ pha-free-materialstore. A PH diagnosis can negatively affect mental health. Depression affects about 5% of the general population but can be as high as 26% among people with PH. Learn more about PHA’s mental health resources at PHAssociation.org/patients/ living-with-ph.