PHighter Friday: Susie Alvarez

Susie Alvarez

23 year Pulmonary Hypertension long term survivor

Diagnosed idiopathic and familial, Stage 3

Support group co leader, PH support group of Greater L.A.

Board of Directors, Help Mates 4 Hope, Los Angeles

State of California employee, 31 years

I was born and raised in Pomona, California. I am the oldest of three sisters and the aunt to two nephews. As a child, I was also a champion baton twirler, winning numerous awards.  I graduated college and moved to Los Angeles in 1983 and started a 30 year career with the State of California located in Culver City.  My life was full with family events, work projects, vacations, and much fun and promise.  

While attending additional 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 Sat 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 which is a fatal lung condition for which there is no cure.

Go home, get your affairs in order, and the best we can tell you is that you have 5 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 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??**********************

At the time of my diagnosis, 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 3 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 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 Dr. Center for further treatment.

My life was forever changed again when I visited the PH center in Torrance, Ca.   I met a cardiologist 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 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.

In March 1996, I was placed on Flolan (epoprostenol), the only FDA approved therapy available to patients at that time, and remained on this therapy for 11 1/2 years. With continued improvement, I participated in several clinical trials for oral therapies to treat PH while I remained on the IV line therapy. I began attending support groups, PHA’s International Conference, and local events in my area for people who lived with PH where I learned more about this medical condition.

I was also referred to UCLA Medical Center, 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 moved to the top of the list and one evening I was called in for a transplant. The surgeon informed me the donated lungs were not viable and I was sent home. Shortly thereafter, I was removed from the transplant list by my PH doctor who informed me the IV medicine was improving my quality of life.  

Finally, on Oct. 31^st 2007, I was taken off the epoprostenol pump therapy and walked out of the hospital – PUMP FREE!

Before this date, I transitioned to oral therapies Letaris (abrisentan), Adcirca (tadalafil)  and Coumadin and it felt so good to be free of the pump.   

During my journey and with the improvement in my quality of life, I continued to work full time and began traveling both in and out of the U.S. for work and vacations.   In 2011, I volunteered to serve as the co-leader for the PH Support Group of Greater Los Angeles

In June 2013 our group suffered the tragic loss of our co-leader and PH patient, Angel Alcala.   With the addition of a new and energetic co-leader, Joannie Yuille, the Greater L.A. PH support group began an annual fundraising event, A Message of Hope”, in Angel’s honor.

We both enjoy engaging the PH community and provide a comfortable place for hope and support. We hold six meeting a year, one special event each May, and our first annual PHA Chapter sponsored o2 Breathe Walk in the fall.   Our support group has enjoyed speakers from Pulmonary Rehabilitation, the Red Cross, nutritionists, creative writing, networking for caregivers, occupational therapists, musicians, and much more.

I also serve on the Board of Directors for Help Mates for Hope, a non-profit organization based in Los Angeles and committed to filling in the gaps in foster children’s lives.  Our group has been awarded grants from the Ronald McDonald house charities, local businesses, the Los Angeles Police Department, The California Highway Patrol, and many others’ who sponsor our events to provide foster children education, clothing, and a place to learn and grow. Visit us at www.helpmates4hope.org or on our Facebook page.  

I started attending Zumba dance classes in 2012 after consulting with my doctor for a safe and fun form of exercise.  I feel a

“shot of happy” when I feel the music and dance.  I also enjoy spending time with my canine kid, Mimi, a Pomeranian-Chihuahua

who takes walks with me several times a week for exercise.

In 2012, I attended PHA’s Congressional luncheon at the Capitol in Washington D.C. to ask my senators; to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073).  We also taught them the importance of early diagnosis with the campaign, Sometimes It’s PH.  

After being married and divorced in the 1980’s, I have lived alone the entire time I have been diagnosed and felt this was my destiny to live alone with this rare disease.     In 2012 I volunteered to assist at the registration desk at the PHA International Conference.  I met another co-leader, Perry Mamigonian, from Fresno CA. We chatted about living with PH and the invaluable resources the PH Association and Conference provides to patients today.   Perry was also a part of the group of patients who attended the 2012 Congressional Luncheon.     In 2011, Perry initiated a campaign in Ca. among support group leaders in his state for a state sponsored proclamation recognizing November as PH Awareness month which he received in 2011.   We attended several PH events

including the 1^st annual PHA Chapter o2 Breathe Gala in San Francisco, Ca.  As PHriends, we discovered we had many ideals and life goals in common and began dating in 2013.  This has been the most significant event of my PH journey to find a partner who loves me!

I’m often asked how? and why I do so much for PHA?  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 timeline I was give over 20 years ago.  My journey was not an easy one by any means.  As a long term survivor, every day is a blessing for me.  The loss of close PHriends 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  

Twitter: @batterygrl

Facebook: Greater L.A. PH Support Group

PHighter Friday: Colleen S

In the PH community, I often hear people being asked what their life was like before diagnosis. I've been asked this myself many times over the years. The thing is, my life before I was diagnosed with PH was the same as my life is now. I don't know what it's like to breath normally. I don't have a clue what going from an active lifestyle to a PH lifestyle is all about. That is because PH has been my entire life. It's all I've known. I actually thought, as a kid, that it was normal to take hours to recover from running around with your siblings and friends. I thought everyone took naps when they were exhausted! And although everyone around me, family included, always told me I looked purple, to me that was just my thing!

I was diagnosed when I was 9 months old, but technically, I should have been diagnosed months earlier. My mom brought me to a free clinic to get my first set of immunization shots, and a doctor there thought something was up with my heart. My mom took me to the pediatrician, who didn't think anything was wrong. So at the same free clinic for my 2nd set of shots, the same doctor who saw me the first time told my mom that something was seriously wrong with me, because I looked blue. My parents ended up taking me to a children's hospital, and after many tests, they discovered I had a pretty bad congenital heart defect and pulmonary arterial hypertention. At that time (1975), the doctors couldn't do anything. It was too late for surgery to correct the holes in my heart, and there wasn't anything to treat PAH. My parents were told I might not make it to my first birthday, or I may possibly live til I'm 50. They weren't given much hope! But here I am, 39 years later, and I'm still living to share my story!

First Airplane Trip

I grew up with a lot of "cannots." I cannot participate in sports. I cannnot take gym class. I cannot go on rides that'll get your heart rate up too much. I cannot get pregnant. And so I lived my life following the "cannots." I often wonder if that really was a good thing or a bad thing, but I guess since I followed those rules pretty closely, and I'm still here, it was a good thing? I followed my grade school dream of becoming a teacher, getting my Bachelor's and eventually ending up in a preschool classroom. I loved it! But after only a few years, those preschooler germs started loving me. Too much. I was on my third major respiratory illness during my third year of teaching when my primary doctor came into the exam room with tears in her eyes and told me I had to quit my job. She wrote me a note that I took to my director right after the appointment. I was 24 at the time, and never even thought about quitting a career at that age. Who would??

A few years later after my PAH symptoms continued to get worse, I ended up going to the Cleveland Clinic in Ohio. I was referred by my doctor to go for a transplant evaluation. At the time, the shortness of breath started happening more frequently (just getting dressed in the morning was becoming a 30 minute event), and an elephant had permanently moved in on top of my chest. That was one symptom I didn't have growing up, and it was not a symptom I particularly enjoyed! Being sent to Cleveland was very scary. Transplant was even scarier!! But my first visit, I was sent back home after so many tests with instructions to start taking Coumadin, a blood thinner, and to wear oxygen all the time. After several more visits to Cleveland in the following months, I was put on Tracleer. I had no idea what it was, or exactly what it would do. All I knew was that I surely hoped it would help my elephant to move on, and that I would start feeling better!!

My first shipment of Tracleer brought me not only the first medicine I'd ever try for PAH, but it also brought me into the world of the pulmonary hypertension community. I grew up knowing I had PH, but it was something that was never focused on. My heart condition was the central star all those years. Once I found the Pulmonary Hypertension Association website, my knowledge of PH started to expand. But what really hit me?? THERE WERE OTHERS LIKE ME!!!! I seriously spent a week reading the message boards and crying, because there were people I could relate to and totally understand!! It was like finding a miracle! 

Tracleer got that stupid elephant to move out several months after being on it, and I also didn't feel as short of breath doing certain things like I was always used to feeling. It was a pretty awesome feeling for a few years, until I felt like I needed to add another medication to the mix. Revatio was added, and the combination of the two is what I am still on today. Pulmonary rehabilitation was something I found out about from phriends (friends who have PH), and after inquiring about it, I started going twice a week at one of my local hospitals. It's been a little over six years since I've started pulmonary rehab, and I truly believe it's a part of what's been keeping my PAH stable in the last several years. Kinda hard to believe I went from no gym or sports as a kid/teen to working out a couple times a week at least! No, I am not running marathons or doing heavy weightlifting, but that is ok! Exercising at any capacity is beneficial, even if I can only do it a little at a time!

So after my PAH seemed to be stable for awhile, the next part of the equation was....what am I going to do with my life?? I couldn't teach. I knew I'd never go back to that. But I didn't know what else to do. Some days I had more energy than others. I'd have one day where I wish I could be at a job, to several days when I was thanking my lucky stars that I didn't have one. Then one day I got a call that started the ball rolling for me towards a direction I never thought about. I was asked if I'd consider starting a support group for PH patients in my area. At first, I was pretty terrified. I could handle being around kids, but to lead a group for adults??? I guess you could say that my shy background made the whole prospect a bit daunting for me! I really had to think about it. So, that's what I did. I spent a couple weeks thinking and praying and talking to my loved ones about the idea. I finally decided to go ahead! Yes, I was incredibly nervous about it, but I felt it was something I just HAD to do. How many years did I live with this disease by myself?? I just knew I had to at least give others the chance to not feel so alone after their diagnosis! 

In the 10 years since starting a support group in the Niagara Falls/Buffalo, NY area, I have really become involved with helping PH patients. I've had so many meetings, a large variety of topics and speakers, and phriends I care about very much. I have also become a big part of the online community for PHers, by being a PHA mentor, a chat leader, a blogger, and just a presence on Facebook. I had always wanted to teach in a classroom, but it took me awhile to realize that a "classroom" didn't have to be a place with 4 walls. It could be anywhere! I have even educated complete strangers during shopping trips about PH! And, in the 10 years since starting my support group, I have also learned to not be so shy with people. Sure, I can keep quiet sometimes, but more often than not, I put myself out there and let others know about this awful illness. Awareness is the key to so many answers, and I never know when one day I will talk to someone and they tell me they have PH, too!

My life with PAH is something I cannot change, and honestly, I think it has helped shape me to be the person I am today. Do I have days when I am angry about having it? Of course! I allow myself to have those angry days, or days of self-pity, but not for long. What good does that do me? I have learned to deal with this disease, and to cope the best I know how, and I have learned to help others going through the same thing. I have also not let PAH BE my entire life. I enjoy things like reading, painting glass, making jewelry, spending time with family and friends. In the last few years I have allowed myself to take on challenges I never thought I could do, because I always had that "cannnot" attitude with me. So I've gone on hikes, I've been on a jet ski, I took my first ever trip on an airplane! There are so many more things I've let myself try, even if I may not be able to do them again. I try my best not to let PAH take over my life, because if I did, I can't honestly say that I'd be living to the best of my ability!