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

PHighter Friday: Stacie

It was 2002, so nearly 13 years ago now, I was 11 years old just going up to secondary school. I was born with 3 holes in my heart and was regularly being seen at Bristols Children's Hospital at this point in time so I had always been ill and knew how to not push myself in regards to exercise. I had recently had a operation because my condition was declining more rapidly than we were used to I was due for a follow-up appointment at Bristol the first week of secondary school. During my first week of school I collapsed several times because unlike my previous school this school had a lot of stairs. When I was seen by my consultant at Bristol he told me he had no way of treating me any more and I either needed a heart transplant or it could be Pulmonary Hypertension in which case I had to decide whether to go for a heart transplant or try the trial that Great Ormand street were carrying out on children. A heart transplant was obviously extremely daunting for 11 year old me like it would be for anybody, no matter their age, so I decided to try the trial with Great Ormand street and if that didn’t work we could then go for the heart transplant. I was later diagnosed in November of 2002 with Secondary Pulmonary Hypertension.

I was extremely lucky, they inserted a small 7mm (millimetre) tube into my pulmonary artery which helped keep it open during exercise, I was placed on Bosentan and warfarin and these worked great for quite some time I managed to make it through secondary school as a normal teenager or at least I appeared normal to everyone around me, I was also having oxygen whilst I slept, it was when I was 18 and in college that things started to decline again we put me on Sildenfil and then had to up it again because it made no difference, once again it made no difference at this point it I am 20 years old and it is 2011 the time had come for transplant. In the UK you cannot be put on 3 different types of medicines or “therapies” as they call them due to financial restraints within our NHS unless you are on the transplant list so for me to get more meds this was the way forward.

In May 2011 I had to meet with a transplant consultant from one of our transplant centres Harefield this was to see if I was even a candidate for transplant, she decided that I was and and this then proceeded to a 3 day assessment at Harefield hospital just outside of London. For any of you reading this who have Pulmonary hypertension to explain the tests you have to do for a transplant assessment just think of all the tests or procedures you’ve ever had to do for your PH and that’s probably in the region of how many tests you have to do, just to give you an idea. I had to wait 6 weeks following this to find out that Harefield would not transplant me because at the time they could only do double lung transplants and my heart was just way too damaged for that procedure this was when I was passed over to Papworth hospital near Cambridge 1 of only 2 hospitals at the time that could perform Heart and double lung transplants in the UK. I had to do everything all over again the initial meeting the 3 day assessment until finally after 11 months I was placed on the transplant list on April 20th 2012.

Now that I was on the list I could be given extra medication we first tried the Iiloprost nebuliser which I persevered with for 10 months but it did in fact do nothing and my condition declined in that time and then finally we gave me a Groshong Line and placed me on Flolan/Epoprostenal which although has made no significant improvement to my condition has been keeping me stable for the past two years while I wait for my transplant.

On April 20th 2015 I will have been waiting 3 years for my transplant. I can’t say being on the list is easy because it is extremely far from it I’ve had some very scary times whilst on the list but it’s like anything I would imagine you have your good and your bad days but you really just have to make the most of the good days. If you happen to end up in the same position that I am in I think you just have to try and stay positive, I’ve had 3 false alarms for organs in those 3 years and although at the time they were devastating to me because they didn’t end up going ahead they were each learning curves. My first taught me what types of organs I was willing to except, the second showed me just how scared I really was and the 3rd taught me that I really truly am ready for this.

Although I am on the list I still manage a few things I’m very close to getting my history degree after 3 years of studying which I wasn’t sure was going to happen when I was told at 18 I wasn’t allowed to go to university by my doctors. I still manage to be a awesome sister, daughter, aunty and friend. I also actively try to promote and raise awareness for Organ donation and Pulmonary Hypertension. As much as it sucks needing a transplant and having Pulmonary Hypertension I have never let it define who I am or stop me from being who I’ve always been and it has in fact let me help other people. It is a hard road to travel but it’s what you do whilst you are on that road that matters.

Blog:- stacie-lifeisworththefight.blogspot.co.uk
Twitter:- @staciep90
Facebook:-  www.facebook.com/stacielifeisworththefight