OUR JOURNEYS

Patient story

Susie Alvarez

"Without warning, I had a crushing pain in my chest as though someone was sitting on it. I pulled over on a very busy city street during heavy afternoon traffic and parked right under the 'no parking anytime' sign which caught the attention of a parking officer. She approached my car and I suddenly grabbed her by the chest and gasped, 'I can't breath!'"

The story of my journey begins in 1983. I moved to Los Angeles, met and married my husband (now deceased), and began working full time for the State of California in 1984. My life was full with family events, work projects, vacations, and much fun and promise. 

While attending college and working full time, I began to notice I was short of breath during my busy day. I continued to keep up with my daily work routine, but had to drop my college track and dance classes as I could just not keep up with the physical activity the classes required. I continued to experience shortness of breath, fatigue, and generally feel out of shape. I made a mental note to visit my doctor after the upcoming Fourth of July holiday which I was looking forward to away from work.

On June 30, 1992, my life was forever changed. I cashed my paycheck after work and began the drive home. Without warning, I had a crushing pain in my chest as though someone was sitting on it. I pulled over on a very busy city street during heavy afternoon traffic and parked right under the “no parking anytime” sign which caught the attention of a parking officer. She approached my car and I suddenly grabbed her by the chest and gasped “I can’t breathe!” I saw the urgent look on her face as she called paramedics, who arrived and took me to Cedars Sinai hospital in Los Angeles. During the week I was there, I had several tests done every day to find out why I was so sick. I remember coming in and out of consciousness and not knowing what day or time it was.

On the morning of Saturday, July 4th 1992, the pulmonologist visited my room. He quickly sat down, and said “We found out what’s wrong with you. You have pulmonary hypertension (PH) which is a fatal lung condition for which there is no cure for. Go home, get your affairs in order, and the best we can tell you is that you have five years to live. We will send you home with a prescription to help you breathe but your illness will progressively get worse. Eventually you will need a lung transplant.” Then he left the room.  

"My family was located miles away and I did not have the strength to pick up the phone and call them. I was alone in a cold hospital room and had just received the most devastating news someone could ever hear."


My mind went into a fog, I felt so confused and very scared. I was hyperventilating through my tears. My family was located miles away and I did not have the strength to pick up the phone and call them. I was alone in a cold hospital room and had just received the most devastating news someone could ever hear. I remember grabbing the nurse by the arm, crying all night, and the only question in my head was, WHAT IS PULMONARY HYPERTENSION AND HOW DID I GET IT??

Since that day, I’ve learned that pulmonary hypertension is a complex and often misunderstood disease. PH means high blood pressure in the lungs but it’s different from regular hypertension. In regular hypertension (also known as high blood pressure), the arteries throughout a person’s body are constricted. In pulmonary hypertension, the blood vessels in the lungs become narrowed and the heart has to work harder to pump blood through them. PH is a chronic and life-changing disease that can lead to right heart failure if left untreated.

At the time of my diagnosis (1992), the internet and cell phones were not widely available to search for resources. I had no written information or source of support to find out more information about this medical disease that was to end my life.

"For three years, I did not know anyone who had PH or who knew what PH was. My doctors informed me there was not much information available about pulmonary hypertension and advised me to continue taking the medication I was given."

For three years, I did not know anyone who had PH or who knew what PH was. I continued to work, but always the question stayed in my mind. My doctors informed me there was not much information available about pulmonary hypertension and advised me to continue taking the medication I was given.

My doctor’s words were correct. My symptoms of PH progressively worsened, I was short of breath, fatigued, dizzy most of the day and was told I was being referred to a PH doctor center for further treatment.

My life was forever changed again when I visited the Liu Center for Pulmonary Hypertension in Torrance, California. I met a cardiologist, Dr. Ronald Oudiz and his mentor and PH center director, Dr. Bruce Brundage, who knew what PH was and how to treat it. He explained I immediately needed an IV line placed in my chest with medicine attached to a pump (Flolan and CADD pump) that would open up the arteries in my lungs to help me breathe. I would have to wear this pump and medication 24 hours a day, which also required care of the IV site and mixing medication that would be attached to the pump. I refused and delayed his recommendations for 3 months until one spring day when Dr. Brundage told me “you are going to die unless you get this medication!”

I received this pump and medication in 1996 and would wear it for 11.5 years. Being a supervisor at the time at my job, I returned to work and made the effort to explain to my work crew what PH was. I did not explain it too well because I just did not completely understand the disease at the time. My crew and other coworkers were unsure what I was going through but understood I was sick and would see me walking around with the pump on my body in a backpack. With this medication, I experienced 4 IV line infections and many hospital visits for treatment. 

I was also referred to UCLA Medical Center in Los Angeles, evaluated and placed on the transplant list for a double lung transplant.  I remained on the transplant list for 13 months.  During that time, I move to the top of the donor list and one evening in the middle of the night I was called in for transplant.  I arrived quickly, was prepped for surgery, witnessed the lung organs being flown in to UCLA and delivered to the surgery room.  After some time waiting, the surgeon told me the donated lungs were not viable from the male donor and I was sent home.   Shortly thereafter, I was removed from the transplant list by my PH doctor who informed me the Floan was improving my PH symptoms and quality of life. 

Susie AlvarezWhat I did not know at that time was that this IV medication (Flolan) and medical pump was the ONLY FDA approved medication available at that time to treat PH.  Prior to that, I was given a choice of a lung transplant or I would die in two years or less. 

PHA provides resources and support for patients and families dealing with PH and funds research programs to look into the causes and possible treatments to PH. One of the many ways PHA provides resources is through support groups. At the invitation of a nurse who attended to me while in the hospital, I began attending support groups and events for people who lived with PH where I learned more about this medical condition. 

I continued to benefit from PHA’s knowledge and support and the generosity of global donors and contributors to this association which allowed the creation and addition of two FDA approved oral medications in 2004 and 2007. Finally on October 31, 2007, I was taken off the Flolan pump therapy and walked out of the hospital – PUMP FREE. Finally! I was only on oral medications Letaris and Adcirca and it felt SO GOOD to be free of the pump device. PHA funds research programs that explore the causes of and treatments for PH. In the last 15 years, those research efforts have resulted in the creation of 11 FDA approved medications to treat PH. 

I continued to attend local support groups and PHA related events nationwide. In 2011, I became the co-leader of the Greater L.A. PH support group at UCLA medical center/VA hospital in Los Angeles. I plan meetings six times a year that includes scheduling speakers, food sponsorship, social media promotion, and notice to the members by mail.

I'm proud to be a founding member of the new group, SuperHeros: Long Term Living with PH- a group for those who have been living with pulmonary hypertension for eight years or more.  

"I lost two close PHriends in 2009 and 2012. These lovely ladies were moms and grandmoms whos lives were full of activity, but left us too soon and now will forever breathe easy. Their passing reminds me that PHA must continue the search for a cure."

Allow me to share a little personal information about me. I lost two close PHriends in 2009 and 2012. These lovely ladies were moms and grandmoms whose lives were full of activity, but left us too soon and now will forever breathe easy. Their passing reminds me that PHA must continue the search for a cure. A first cousin of mine was diagnosed with PH shortly after the birth of her only daughter in 1991. She and I have learned that our PH diagnosis is a result of a defective familial gene on my fathers’ side of the family. Her mother and my father are siblings in a family of 9 children with only two siblings alive today.

In 2012, I attended the Congressional Luncheon at the Capitol in Washington D.C to ask my senators to co-sponsor the Pulmonary Hypertension Research and Education Act and teach them the importance of early diagnosis thru the Sometimes it’s PH campaign. PH is often misdiagnosed as asthma, COPD or other common diseases. While PH may be similar to these conditions, it is distinctly different, like a zebra among horses.”

I’m often asked why I do so much for this organization. My answer is that I was once a newly diagnosed patient, living alone, and so afraid of dying without knowing what PH is. I’ve survived beyond the five year time line I was given 21 years ago. My journey was not easy by any means. As a long term survivor, every day is a blessing for me. The loss of close friends to this disease and the hope I bring to newly diagnosed patients who I meet keep me motivated to work towards awareness, support, and hope for a cure! 

Please reach out to me at: 
Ph:  310-938-7930
Email:  
batterygrl@yahoo.com 
Pinterest:  
PH-Greater L.A. Support Group   
Support Group Website
Twitter: @batterygrl
Facebook: Greater L.A. PH Support Group

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.