PHighter Friday: Kayla

Hi my name is Kayla and I am 22 years old.  I am not your average young adult, I have overcome a lot of health issues during my life.  I was born with a lot of health problems including being born with a Giant Omphalocele, (all your organs outside of your body in a jelly sack) hole in my heart, (fixed when I was seven), club foot, scoliosis, and I was tube fed until 5 years old.  I also didn't get to go home from the hospital until I was about 3 months old.  During my childhood I was in and out of the hospital.  After middle school, I had a seven year gap of non-serious health issues.  Until the summer of 2014, when my world was turned upside down. 

I remember it was a hot summer day and I was walking in the mall with my mom and I was walking very slowly and trying to catch my breath.  I thought I was tired from the heat and maybe hungry.  So we made it to the food court, sat down, and got something to eat.  After that I felt better and could walk back to the car.  The next morning I was gasping for air while I was asleep.  I have never experienced that before.  My mom immediately called the doctor and got an appointment that morning to check out what was wrong with me.  When I got to the doctors I was still having a hard time breathing, but I was still talking and alert.  They decided to check my o2 sats and I was in the 60s.  They immediately called the ambulance and rushed me to the ER.  The ER thought I had an asthma attack, but I never had one of those before.  I do have asthma but it's only reactive when I have a bad cold.  So they gave me tons of breathing treatments and it helped a little, but not enough.  The doctor decided to admit me to the hospital.  He told me he wouldn't let me go until he found the answer.  It took a week to do all the tests to determine what was going on.  The last test to confirm their diagnosis was the right heart cath.  That was very scary being awake on the operating table.  I held it together barely.  When the heart cath was done the doctors told me I had Pulmonary Hypertension.  I was confused, scared, and speechless.  I had no clue what PH was.  The doctor explained in detail and still I didn't understand it.  All I remember was it is not curable and I would have to live with it for the rest of my life.  In the past I was use to having health issues and having the doctors solve them the best they could.  But I never thought I would have to deal with a rare and non-curable disease for life.  On top of that I had to be on oxygen 24/7 because of my low oxygen stats and I'm still on oxygen today.  

All of this was new territory for me.  I was in denial for awhile and kept asking my parents why is this happening to me.  They kept explaining it to me and they were really supportive.  Eventually maybe about a couple of months later I adapted with my new way of life.  I have always been a positive person and I knew I could get through this tough time because I have done it my whole life.  The o2 and the meds were what was saving my life.  I was in a new semester in college when I was diagnosed and had to get back to it.  I went back a week after coming home from the hospital.  I had to drop 2 out of 3 classes because I would have been too overwhelmed.  My parents helped out and bought me a portable oxygen concentrator, so it would be easier to go to school and get around.  I even bedazzled my concentrator, to make it more fashionable!  I got through that semester and during that time I knew I wanted to spread awareness about PH.

I never heard of this disease before until I got diagnosed with it.  So I knew I needed to do my part and raise money to help find a cure.  That's when I decided to start my own fundraising jewelry line called PHantastic Jewelry.  I always have been into fashion and love being crafty.  I created my own website (phantasticjewelry.com) to share my story about being diagnosed with PH and to sell my handmade jewelry for awareness.  The net proceeds go to the PHA to help find a cure.  I knew for myself to cope with this "new normal", I had to give back somehow and turn it into a positive.  I enjoy making the jewelry and spreading awareness about PH at local craft fairs and open markets.  Also at these events I get to meet a lot of great people and hear their stories of their own health battles. 

I feel good that when I share my story people are comfortable to share their's.  Some people may wonder how can someone on o2 be doing so much.  Well, since I was born my family, friends, and God have been my support system and my parents taught me an important lesson early on to never give up.  There is always a "silver lining" in hard times.  I strive to do my best and achieve the goals I want in life.  This past year in a half has been intense, but I learned so much.  With being diagnosed I actually have had more energy and developed an exercise routine with the help of Pulmonary Rehab.  I just finished another semester in college and I took 3 classes.  First time having that many classes since being diagnosed.  I feel so good that I am back at where I wanted to be.  I am so appreciative because I am stable with PH at this time and I can focus on school, enjoying being with my family and friends, and working on my fundraising jewelry business.

For the first time in awhile I feel like I can slow down and "stop and smell the roses" instead of being in survival mode.  I hope sharing my story will help others that are having a tough time that it is important to remember take it day by day.  And your life will change a lot being diagnosed with PH, but really try to have a positive outlook.  It truly helps in this situation!  Also allow yourself time to adapt to your new way of life.

PHighter Friday: Karen S

I was diagnosed with IPAH 8 years ago at the age of 52, after years of palpitations and breathlessness on excretion. Prior to diagnosis I presented to my GP on various occasions with my concerns about these symptoms. Each time I was told that it was anxiety/depression and finally prescribed anti depressants. Despite the advice from my GP my concerns and symptoms remained.

I would become breathless during my household chores, especially vacuuming and climbing the stairs. My palpitations would start, or as I referred to them, my flutterings. I even called it my 'jelly heart'. I would joke to my family ''you will remember this when I've gone''. I never dreamed it would soon be so serious.
The breathlessness and palpitations continued and were now accompanied by dizziness. I would become dizzy just walking from work to my car. I knew it was time to return to my GP.

At that visit my usual GP was unavailable and I was seen by a locum doctor. I was not expecting much but to my surprise I truly believe that this doctor saved my life! He listened to me, examined me, and decided to send me for an ECG. There then followed a battery of tests at my local hospital which lead to a diagnosis of IPAH and a referral to Papworth Hospital. I had no idea what IPAH was. When I inevitably consulted Dr Google I felt like I had been hit with a sledgehammer. I was in turmoil, I panicked I didn't know what to do with myself. I wanted answers, why me? I was a healthy woman, I had never smoked or abused my body how could I have something wrong with my heart and lungs? The words 'incurable' and 'fatal' kept going round in my head.

After attending Papworth for a 5 day stay, I felt more hopeful as I was now on a drug - bosentan and had now been given a prognosis of about five years.

I was doing well on Bosentan but it suddenly began affecting my liver and so I had to stop taking it. I was then put onto sildenafil. A few months later I agreed to take part in a trial for a pill form of treprostinil.
I was feeling so much better, I could climb stairs, I had more energy, I would go on walks and bicycle rides. Life was good again. I continued like this for about five years 'the deadline'. Then very, very worryingly, I started to feel ill again. The breathlessness and palpitations started again. I was in panic mode again and denial, I even lied to the team at Papworth telling them I felt ok, but they knew differently. I was then prescribed ambrisentan along with the other drugs that I was taking I was elated, another ray of hope. I just got better and better. My 6mw improved and my lung function tests were better. I was back to my normal life.

Then a few months ago I was asked to take part in another trial. This involved having iron infusions. I felt fantastic! My family noticed a difference in me and my daughter claimed she had her 'mom back'. My exercise tolerance and general wellbeing were like they were before I ever had PH.

A diagnosis of PH is frightening and devastating, but I am testament that with a positive mental attitude, support from a wonderful family and friends, a wonderful team at Papworth ( and mustn't forget the drugs ) life can go on and there is so much help available. I feel very hopeful for the future.

PHighter Friday: Shannon

Confessions of a Young Adult PH Patient

Hi everyone, my name is Shannon O’Donnell and I am twenty years old, and I have primary pulmonary hypertension. I am on IV Remodulin, Revatio, blood thinners, high blood pressure medication, and oxygen at night.  I was diagnosed when I was six years old. I was told that I wouldn’t live pass a year without a double lung transplant and now it’s been fourteen years since then. And now, I’m doing great, I’m off the transplant list, and talking to my doctor about getting off IV Remodulin and going to the oral form of it.

My story begins on May 31^st, 2001, I was six years old and  had no idea what was going on due to being a young child not really understanding why I’m different from my friends. My doctor wanted to admit me right away but my parents took me home in order to graduate from kindergarten with my friends, my parents wanted good things to remember of me before we started treatment. A few days later, I graduated kindergarten and had huge party with my family. The next day, we went back to Boston children’s started this rollercoaster called fighting PH. I started out on nitrous oxide then that stopped working and I had no choice but to go on Flolan, which was only approved for adults since there were no medicines approved for children at the time. That’s what I remember of the start of this uphill battle.

In second grade, I went on a Make-A-Wish to Orlando; my wish was to go to SeaWorld and swim with the dolphins and feed Shamu (a killer whale or an orca whichever species name you prefer.) I got to Disney too, and see my family mom’s side as well. Then six years later I was put on IV Remodulin due my school system threatening to take away my rights to education due having to be on ice packs 24/7 unless I switched to medicine that did not involve being on ice. Then being on the cad pump got in the way of being a teenager and I switched to the crono-5 pump. About three days after going on the pump, it decided to go off in the middle of class. I raised my hand and calmly told my teacher I had to go the nurses office and my headmaster (principal) saw me asked me to hand over my phone (he thought the pump was a phone.) I flipped over my pump and he escorted me to the nurse when saw he look of fear on my face.  Then a year later came prom, and I had no idea what to do with my pump, so my sewing teacher transformed a spandex skourt into a spandex skourt with a pump pocket. I still use it till use it today whenever I wear a skirt or a dress. Then a year later came senior year. Senior year ah the worries of college acceptance letters, SATs, and graduating. Not for me. I was in and out of the hospital and was barely passing all my classes. Well, I graduated and moved on to a community college where teachers don’t understand zero below temperatures aren't good for PH patients to be waiting for a crowded train.

I was told I couldn’t go to school full time or do sports. Now I go to college part time at a local community college, and take karate at a local dojo. I volunteer at The Hole In The Wall Gang Camp founded by Paul Newman (I was a camper there as well.) I also teach karate to mentally challenged children, and teach second grade religious education at my church.  Life at diagnosis was hard because you can’t tell a six year old not to run around. I don’t really remember much expect that. Back then, I coped with everything by playing my dolls, coloring, reading, listening to music, and playing video games. Today, I still cope by drawing, reading, listening to music, playing video games, and watching TV and watching movies. If I have learned anything from watching many Disney movies is that even if you’re different you will always have good friends by your side no matter where you go.

The advice I would have given myself when I was younger is that you got to hold your head up high and smile because you are the greatest star. My advice to anyone that reads this is that "Your imperfections make you beautiful; they make you who you are.” –Demi Lovato.

PHighter Friday: Karen

My journey with IPAH started nearly 27 years ago. I was about 4 months pregnant and went to the doctors as I was feeling breathless. This was my third baby. I never had breathlessness with my other two pregnancies.

I was given two inhalers for asthma.I started taking them regularly. I was then at Antenatal Clinic, and the lady I was seeing there told me that I was very breathless. I said "yes, I have asthma." She asked me when was I told that I had asthma. I said about three weeks ago..she asked if I would mind going for an ecg. At this time I was also going through a messy divorce, and my husband at the time had the girls. I was living with a new partner. I had the ecg and went home.

I shortly recieved a phone call telling me to pack a bag and get straight to hospital. I went to the hospital so scared out of my mind. I was then seen by a doctor who said he thought that I had blood clots on the lungs, but would test me in the morning. I was admitted for two weeks to get stabilized. The following morning I was seen by two doctors and had lung function tests. I couldn't have X ray due to being pregnant. They had a meeting and then came to see me in the afternoon. They suspected blood clots on the lungs and told me to consider a termination. I couldn't go through with that because I had lost a baby at 6 months prior between my two girls. I went ahead with the pregnancy. I had to give my self three injections of Heperin daily. The baby was born with no complications.

This is me and my husband , daughter Sarah is the middle daughter her hubby and my grandsons.

It was not until two days after that the vicar came in to read me the last rites. My blood pressure had plummeted through the floor. I was on constant oxygen and bed rest. Some how I must of had someone looking over me because I made it. Once my little baby was three months old I went to a chest hospital in London, England. I had numerous tests and was told that I had PH. I was put on Warfarin, Propafenone, and Nicardipine. No real PH drugs were available at the time. I was seen by this hospital every three months. During this time with PH I had many bad days, and with a new baby and two daughters it was very hard work. I had alot of support from my friends and family, which is good if you have PH. I got very depressed and shut my self away for three months of not going out etc. One day I got up and said to my self "Come on Karen, get out of this rut" and to this day I havent looked back, now only forward.

I was sent to Hammersmith hospital 14 years ago and that was the best thing ever. I was admitted for a week for full lots of tests and met some wonderful people. All the doctors and nurses in the Hammersmith PH team are fantastic. With the right medications like Bosentan, Sildenafil, Digoxin, and 8 liters of oxygen over night I have been good . I have recently been put on Macitentan and its brilliant so far. I had previously suffered with severe SVT's which is where I was taken to the local A&E and given Adenisone to stop them. Once the drug never worked and I had to have a cardio version. At hammersmith they sorted this problem out with having a heart ablation twice.

This is my daughter Leanne of 26 years old. 

My daughter is nearly 27 and a beautiful young lady I must say.I have two grandsons who keep me going, and a wonderful husband who gives me such a lot of support and does a lot for me. I had a nasty partner before him.


I am quoted at being class 3 IPAH. I was told 20 years ago that I had 5 years left to live. No one can tell you how long you got to live. I have learnt that having IPAH you have to pace your self in life. This may make people laugh but at times I get very scared, especially at night time. I think my heart is not going. So I sit up and get my stethescope out and listen to my heart. My husband asks me "what you doing?" I say I am making sure my heart is going lol. I know its mad, but I like to hear it. I also check my oxygen sats too. You have to remain positive and be strong during your PH journey.

An Avocado a Day...

*I want to start this entry by stating that I am not a doctor or a nutritionist. If you have any questions about whether it is safe for you to incorporate something into your lifestyle or diet, please consult your doctor.

When tackling your health, it is important to approach your health as as a whole. I have Pulmonary Hypertension, so each day I take my prescribed medication in order to take care of myself. However, in order to care for my entire well being there are special steps that I take to ensure that whatever part of my body can function at its optimal state will function at its best. There are things that I eat, holistic supplements that I take, alternative treatments that I practice and special treats I allow myself in order to ensure that this happens. I would like to start sharing what I do in addition to taking my PH medication each day- and today I want to talk about avocados.

Most of you have probably heard of the saying "an apple a day keeps the doctor away." Perhaps there are other foods that deserve to be included in this old English proverb. Maybe an avocado a day keeps the doctor away? Avocados contain many nutrients, including 20 different vitamins and minerals. (One of those vitamins is vitamin K, which you have to be careful with if you on a medication like blood thinners.) Avocados are filled with heart healthy fats. Majority of the fat content in an avocado is from oleic acid (also known as omega-9.) Diets rich in oleic acid has been known to improve insulin sensitivity and blood circulation. It has also been linked to reducing inflammation.

Studies show that avocados can help offer protection against certain types of cancers. They are also very heart healthy because of the good fats and vitamins they contain. Avocados are quite high in fat (good fat,) so you may want to have a smaller portion if you are trying to lose weight, (or have to divide your vitamin K intake among other vegetables)

It 2014 a study hypothesized that the protein found in 'good cholesterol' may be the key to treating Pulmonary Hypertension. HDL (which contains protein apoA-1) is often referred to as a "good cholesterol" that can reduce help oxidized lipids. Oxidized lipids play a key role in inflaming blood vessels and hardening arteries. Avocado isn't a miracle vegetable (...er, I guess I mean fruit because of its one giant seed,) but it may help contribute to good health.

Avocados are an acquired taste. Chances are if you had sushi, you have had avocado before. If you do not like the taste of avocado, it is easily disguised when prepared with other food. Avocado slices can be added to your sandwich, or they can be mashed and used as a spread. I have my avocado everyday in a fruit smoothie. I use it to replace dairy for making my fruit smoothie creamy and thick. Lots of recipes are available for free online (although avocados themselves can be fairly pricey  if living outside of where they are grown.) 

New to avocados? Not sure how to cut them? View the video below:



The knife in the video looks intimidating- it looks as if it could help you take down wild plants in the rain forest. If your avocado is ripe you can get away with using a more reasonably sized knife. You will still want the knife to be fairly sharp in order to remove the pit from the center.

I Am Not a Fictional Character

I am not a fictional character- and although that might seem obvious to some, this is something that needs to be emphasized.

A little over a year ago I was feeling well enough to have my first real outing to the mall with my mother. This was the first time that I didn't need an electric scooter or wheelchair. I had gone to the bank and the bank teller started asking me all of these extremely personal questions. While some people like being approached about Pulmonary Hypertension because it gives them a chance to raise awareness, I do not share this same openness. I have shared this story before on the blog, but for those of you who don't know, the bank teller basically asked me if I am dying. She also asked if I need to wear oxygen for "the rest of the time I have left." This was my first real outing- it was the first time I was approached about the obvious illness that I have by a stranger. I nervously answered her questions. At the end of the discussion she FINALLY gave me my money and said it was such an "honor meeting someone" like me. As if it was on her bucket list to talk to someone with an obvious serious illness. Afterwards I felt really hurt- and silly for answering all of her beyond personal and hurtful questions. It was something I didn't feel comfortable talking about- and truthfully, she shouldn't felt comfortable asking a stranger those sorts of questions.

Over that past year and almost a half I have encountered a lot of these situations. At first I first I didn't leave the house much after diagnosis because I could barely move. Then I didn't leave the house because I couldn't handle the comments or rude ogles. It felt like every time I tried to leave the house, something would happen to make me further isolate myself.

I felt brave enough to go to the health food store with my dad last summer to get a smoothie. A man not much younger than myself nearly yelled "DO YOU WEAR THAT TO BREATHE?" It was quite busy- I remember seeing the other people around us turn to stare at me. I said "yes" very quietly and shot him my nastiest bitch face. He replied with "cool," and finally left me alone after he realized I was not amused. It is not cool that I need to wear oxygen. It makes me feel extremely self conscious, it makes my "invisible" illness more visible, it limits me, and I am still trying to wrap my head around being disabled with such a serious diagnosis. It would certainly be rude and unacceptable to ask a stranger in a wheelchair if they required it to move. There is a difference between being curious and being rude- and sometimes being curious does not grant you the right to be intrusive.

I have had friends romanticize my relationship with my partner, as if we are in some kind of star crossed movie where someone falls in love with an ailing girl and stays by her side and go on one last awesome adventure. Pulmonary Hypertension is not romantic. The cannula hurts the inside of my nose when we kiss. I am scared he can see my illness eating away at my lungs when he looks at me. I cannot explain the incredible guilt I feel sometimes when I think about how I may not here someday, and I how I am dragging someone so young along into this unknown journey with me. Relationships are only complicated by illness. It is nothing like the movies would lead you to believe.

When I was first diagnosed I had loved ones tell me that if they were in my shoes, they would travel across the world. I suppose this assumption isn't their fault if they have never met another person with an illness like PH before- movies lead people to believe that this is a liable idea. High altitude, like mountains or air plane rides, are really bad for people with lung diseases like Pulmonary Hypertension. I have not watched The Fault in the Stars (and I don't plan to anytime soon,) but I would assume that someone with end stage cancer that has spread to their lungs would not get clearance to fly, or have the ability to go on such an adventure.

Sometimes people call me "brave", "strong" and worst of all an "inspiration." While these are all positive things, and I know people mean well by it, you have to consider that I did not chose to put myself in this position. If I had a choice I wouldn't have chosen to get sick, let alone choose to have PH. People have referred to me as these things just for doing normal things, or  for doing things that I am required to do now.

What I mean by all of this is that I am not the diagnosis that was given to me.

I have told pharmacies and doctors not to refer to me as a "patient." I am Serena. I am 27 years old. I have a grumpy little black bunny who I have had for 12 years, and she is probably 136 years old in rabbit years. I love chocolate, tea and music. I am creative. I was going to go to university for political science, but decided to major in fine art. I love to read books on the deck in the spring and watch the birds fly by. That is me- those are the things people should ask me about, not the plastic tube dangling from my nose.

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