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.

Reading List

Below is my reading list. I usually send this list to anyone who is having a hard time after diagnosis. I have read all the books below, and they have really assisted me in finding who I want to be after diagnosis. I find myself reading these books over and over again whenever I start to struggle with my worries, fears and diagnosis.

Most of the books mostly deal with Cancer and more common diseases than PH. That being said, a lot of the stories share in these books are about people who beat the odds. People who have beaten statistics and improved far greater than the diagnosis given to them. As I have said before, I think that hope found in hopeless situations can be shared and inspiring. Hopefully you are as inspired as I was by these incredibly crucial books. The books below discuss the characteristics of survivors with Cancer and other diseases- and I think that these characteristics will help anyone thrive after many diagnosis.

Reading List

A Book of Miracles by Dr. Bernie S. Siegel, Deepak Chopra

Peace, Love and Healing: Bodymind Communication & the Path to Self-Healing: An Exploration by Dr. Bernie S. Siegel

Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients by Dr. Bernie Siegel

The Art of Healing: Uncovering Your Inner Wisdom and Potential for Self-Healing by Dr. Bernie S. Siegel

Mind Over Medicine: Scientific Proof That You Can Heal Yourself by Lissa Rankin M.D.

From Incurable to Incredible: Cancer Survivors Who Beat the Odds by Tami Boehmer, Doug Ulman, Dr. Bernie S. Siegel

Radical Remission: Surviving Cancer Against All Odds by Kelly A. Turner PhD

Spontaneous Healing Andrew by Weil Md

Dying to Be Me: My Journey from Cancer, to Near Death, to True Healing by Anita Moorjani (Thank you Rob and Courtney.)

You Are the Placebo: Making Your Mind Matter by Dr. Joe Dispenza
Quantum Healing: Exploring the Frontiers of Mind/Body Medicine By Deepak Chopra

Defining the New Normal: A Guide to Becoming More Than Your Diagnosis by Colleen Brunetti

I haven't finished Defining the New Normal yet - but I can already tell that it belongs on this list! Colleen (click here to see her PHighter Friday journey,) has created a sort of work book to help others find their way through diagnosis. I really enjoy reading more about Colleen's journey with PH. As someone with PH, Colleen has a great prescriptive on how to work your way through diagnosis and cope. Her book is available for free on Kindle until January 26th, 2015- so make sure you snag a copy!


And a big thank you goes out to my Uncle Heath for gifting me with  a Kindle so I can have all of these books at my finger tips at all time :)

The PHight or Flight Project: 2015

Instead of posting a PHighter Friday story- I need to ask you for your help.

If you have Pulmonary Hypertension and have an inspiring story to share, please contact me at phightagainstph@gmail.com. This blog cannot continue with the help of other people with PH who are willing to share their journey.

To share your story you do not need to be a long-term survivor (but I accept stories from long-term survivors as well!) You just need to share your PH journey that will help provide hope to others ( (especially the newly diagnosed, or a few years past diagnosis.)

Have you improved much greater than your doctors said you would? Have you survived and thrived much longer than the original time frame given to you by a doctor? Have you accomplished something you were originally told you would not be able to do with PH? Do you work full or part-time? Do you volunteer, run a support group? Have you adopted? Are you active? Do you walk for 30 minutes every night? Do you go to the gym? Are you not just surviving but thriving? Are you doing much better than the lousy internet statistics you originally Googled when you were diagnosed? Have you downgraded medication? Discontinued oxygen use? If you answered yes to any of these questions and are willing to share your story to help others, please e-mail me at phightagainstph@gmail.com. From there, a brief e-mail with a list of topics will be sent your way to help with the creative process! If you know someone who would be a good candidate to write for a PHighter Friday, please feel free to send them my contact info. Remember, people of all abilities and from all walks of life are invited to share their story so long as it is inspiring.

For 2015 I hope to continue with more PHighter Friday stories. Right now I have some posts ready and waiting for the upcoming Fridays. They will be posted every Friday, or for every Friday that there is a story to share.

I will also be introducing a new category of posts called Partners with PH. The Partners with PH posts will be written from a spouse or partner who is in a relationship with someone who has Pulmonary Hypertension. The goal of this topic is to show that these partners aren't necessarily caregivers to their spouse. They help their partner with whatever they need, but that is how most loving relationships work! I also hope that this proves that these kinds of relationships can have a sense of normalcy, and to encourage other PHers to pursue relationships or continue relationships past diagnosis. I know that this is something I myself have felt guilty about. I have two posts so far, and I cried reading them. They were so sweet and inspiring, and I have always said that there is a pot for every lid. Don't let this disease stop you from finding your bliss, whatever that may be! If you are in a relationship with someone with Pulmonary Hypertension and would like to share your story, please contact me and I would be delighted to send you more information about writing a blog post!

Sometime in 2015, Charity Tilleman-Dick will be sharing her journey with Pulmonary Hypertension, which ultimately lead to two double lung transplants. Told she would never sing again, Charity has kept her career as an opera singer and has used her platform to spread awareness and hope! I have followed Charity since diagnosis, so I am really excited to learn more about Charity, and that we will get to share her story with readers! She actually reached out to me after diagnosis and sent me very kind words on a message board. Here is a video of Charity on TEDMED speaking of her experience.


TED Talk: Charity Tillemann-Dick: Singing after... by TED

I also hope to share more personal posts in 2015. A few people with PH thanked me for being so honest, and one newly diagnosed person thanked me for sharing what my first year past diagnosis has been like. I wasn't sure if anything I had to say was beneficial. Their feedback has really showed me that is important to share my journey so soon after diagnosis. It can be one heck of a roller coaster.

I have learned through this experience that I can still be very shy and reserved (something I thought I outgrew in high-school.) I have received some attention through this project, and at times it has been too much for me. But, I knew I wanted to start this project because it was so desperately needed, and I knew that I had the resources and training to take on such a task. It has been a little difficult to run this blog while returning to work part-time. I hope to return full-time in 2015. It turns out this blog is a job as well. Have you ever wondered how I found all of the stories for PHighter Fridays? I am rarely approached by others...I would say maybe one person has approached me throughout this process. Pulmonary Hypertension is also a fairly rare disease, so it is even harder to find people on my own to share their story.

So what does 2015 have in store for me? I have no idea, and that thought scares me. I hope I continue to improve, and surprise doctors by my improvements. I hope that this is "my year," because last year hurt like hell. I was really depressed the days leading up to New Year Years. I have made it one year past diagnosis, and it surely wasn't what I thought it be. My specialist is optimistic that I will get off the oxygen completely sometime shortly within the New Year, so I am hoping that happens soon as it will lift some of my burden. Despite how depressed I was thinking about the future, my New Years Eve was wonderful. My boyfriend, Spencer (pictured beside me,) cooked us a lovely low-sodium, gluten free dinner to meet my dietary needs. We stayed up and played card games and watched the countdown on TV. I think this was more our style anyways. Last New Years I was barely coherent, so I have certainly come a long way. He told me that this was his favorite New Years. I made a face- his favorite New Years? How? Things have been so hard so this part year! I thought about what he said, and he was right. It was my favorite New Years too. We went to our favorite cafe, he made an amazing and romantic dinner, we both made it to midnight, and well, I had a pretty good day. I didn't need to use my oxygen while at his house at all! It was a great New Years. As I mentioned before, I plan to live to 87 so I am hoping for many many more happy and healthy New Years. Maybe next year we can go out dancing.

I want to wish all my readers a happy and healthy 2015. Here is hoping that less invasive and more effective medication comes our way this year, and maybe even a cure!

PHighter Friday: Bernadette

Hello! My name is Bernadette and I am a PHighter from San Francisco, CA. I am an identical twin. We are both lupus patients. Our diagnosis occurred November 2004. Same health condition, but very different symptoms. I experience fatigue on a daily basis, swollen joints, Raynaud's, thinning hair, and photosensitivity. I found out last year that I also have Sjogren's, dry eyes and mouth. My biggest battle is pulmonary hypertension.

I can remember when I was about 18 years old. I started to feel dizzy. Back then, I thought I was just stressed out since I was in school full-time and lacking sleep every week. So I ignored it and didn't think much of it. A year or so later, the dizziness began to intensify, my heart was beating at a faster pace, and I found myself breathless after climbing up stairs to get to class. I went to the ER a couple of times too. ER doctors kept telling me I was fine and that it was all stress related. I wanted to believe that I was okay.

Fast forward to 2007 when I was 20 years old. I decided to take a shower one night. Little did I know, this would be the a-ha moment. I showered for a good 20 minutes or so and the water was pretty hot. I started to feel really lightheaded. That never happened before. I had to turn off the water and step out. I called my rheumatologist right away to let her know what had happened. She ordered an EKG, a stress test, and an echocardiogram immediately. She was onto something. I was getting worried. I was a teenager and I was so confused about the state of my health. The EKG and stress test came back normal. The echocardiogram did not. I was told I had an abnormal lung and that more tests needed to be done. I was scheduled for a right heart catheterization in October. I was pretty anxious before the procedure. I was new to this. I was scared too. Thankfully, my mom was there to support me. I remember lying down for a good six hours (they went into the groin area) and I couldn't move. I can also remember the nurse telling me to go on a low-sodium diet.

A few days after the procedure my diagnosis was confirmed: pulmonary hypertension. October 11, 2007 to be exact. My pressures were elevated, can't remember the exact figures. I knew what hypertension was, but what did it have to do with my lungs? I had to meet with a pulmonologist ASAP. I was still very terrified. What did this mean? I thought a lot about the future. Doing my own research didn't help, the statistics scared me. How long would I live? The pulmonologist was reassuring. There is no cure for PH, but it can be treated. My mom was devastated when she found out I couldn't bear children. It's still something I think about to this day. I know I have options, such as adoption. I remain hopeful. Anyway, the doctor prescribed Revatio, my first PH treatment. I had to be positive. My journey isn't a walk in the park. I was in community college during this time. My goal was to transfer out in two years, but that eventually became 4.5 years. I had to become a part-time student and slow down.

I've had my share of losing health insurance at 21, dealing with the cost of medication(s), and trying to find the best care possible. 2008-2010 was so hard. I hit rock bottom. I eventually qualified for health insurance after a long wait and quickly decided to be seen at UCSF. My sister was already being taken care of there, I wanted the same for myself. I adore my lupus and PH team. :) They really listen and have always encouraged me to do my best. Thank you, UCSF!

I transferred to UC Davis, Fall 2010. It was so rewarding! :D I was ecstatic!!! Adjusting to the university wasn't so easy. I was 75 miles away from home. Davis is a small college town. I had to make new friends and everything was much more challenging compared to my community college load. Each quarter was 10 weeks long. I was definitely missing my 18 week semester schedule. During my first quarter, I felt alone. It was a silent struggle, no one knew my story. I was quite fatigued. I had to set a time for napping, even in between classes. Things eventually got better. I made a lot of new friends and became an advocate for the Asian American community on campus. The last two years of college was a dark time for me. I had to switch medications at the start of 2012. Letairis and Adcirca were my BFFs. My maternal grandmother passed away in October 2011 and my grandfather in December 2012. I didn't know how to cope because they were so important in my life. They were my role models and supported me when I first transferred to UC Davis. Education meant the world to them. I kept my word and I always told them I would finish.

My last quarter of undergrad, I was enrolled in an autobiographical course. I shared my story about health, family, and my resilience. I was exposing myself to my peers and friends. I was nervous prior to starting my piece, but it was rewarding because everyone was supportive. I graduated in June 2013 with a BA in Communication and a minor in Asian American Studies. It was a very emotional time for me and my family. I finally had a degree!!! :) I'm taking an academic break for now, but I haven't closed the door on pursuing higher education.

It's been six years, going on seven since my diagnosis. Currently, I haven't been feeling great. My six minute walk test a few weeks ago didn't go so well. I can tell that my medication needs to be adjusted. My PH team wants to start Tyvaso and hopefully that'll improve my condition. A right heart cath also needs to be done. I'm hoping to start walking at a faster pace and biking. Running only seems like a dream right now, but I'm hoping to do it again. Slow and steady. 

My PH journey has been a roller coaster, but I'm still here. At times, I'm fearful yet I block the negativity and opt for optimism. It all starts with yourself. I've learned to listen to myself. Sometimes, one has to decline an invitation for fun. Learning to say no is important! Getting enough sleep does wonders for me, even if insomnia creeps up once in a while. Taking my medications regularly is a MUST! I can remember a time when I didn't listen to my healthcare providers and they lectured me good. Always surround yourself with positive people. Their energy is contagious. Have faith! Many people pray for me and I pray for myself. I believe the big man upstairs is listening. My siblings mean the world to me, they are my heart and soul. I love you, Christian, Bianca, and Loretta! <3 Our dogs too, Laki and Coco. Journaling and blogging helps me cope. It's always good to vent. And take up as many hobbies! I love sports, Go Niners, Giants, and Warriors, photography, and traveling. I hope to see the world soon. But for now, domestic travel will do. And I haven't given PH support groups a chance yet, but I'm hoping to very soon. I'm a PHighter! Can't stop, won't stop.

You can find me on Instagram (@heartbern)! I post a few times out of the week. :D

Love to you all!

Bernadette

"Don't give up, don't ever give up!" - Jimmy Valvano

PHighter Friday: Haley

I, like so many other young adults, spent the majority of my high school time impatiently waiting for the "real world." I was tired of high school, tired of being a so-called kid, and my body was physically tired. But, two weeks after my eighteenth birthday the real world came crashing in brutally. I was diagnosed with stage four Pulmonary Hypertension, and was given two years to live. Ahhh, the real world was SO awesome so far.

When diagnosed with something that is terminal, people automatically think you have all this wisdom, you're at peace with your life, and you're somewhat a courageous fighter. We see it in cancer books, on Grey's Anatomy, and other ridiculous interpretations of illness. I spent at least the first year of my diagnosis trying to evaluate my emotions, my lashing out at anyone, and my random crying sessions after doctor appointments. What in the hell was wrong with me? Simple; the picture in my head of what illness is supposed to be, and what it actually is was in the process of tearing me in half.

People really do underestimate and ignore the mental side to a disease. Yes, the problem is in my lungs, which works its way to my heart (causing it to work harder) but it eventually leaves an impression into my actions, thoughts, feelings, and emotions. After a while, you feel like a disease. I would be treating my body for a while, then decide I didn't want to live, stop treatment, and was battling suicide. What was the point of fighting something that would claim a life I didn't even want to keep?

After a broken relationship, and removing certain people from my life, I was surrounded by my family, and best friends only. They were probably just as tired as me because they had spent the past couple of years watching me carelessly throw myself into deaths arms. When I looked into their eyes all I could see was a high school memory of one of my friends in his beautiful casket being lowered into the ground because he had fallen victim to suicide. I remember his parents and friends standing around, and hardly anyone could make eye contact with anyone else because of the perfusing sadness throughout their face. The idea of my family, and friends standing around my casket was unbearable. There in that moment I took my first step into my own sort of mental rehabilitation, and acceptance of Pulmonary Hypertension.

A little over four years later, I'm writing this with oxygen tubes up my nose. Its not the most ideal picture I had in my mind, but at this point I wouldn't, and literally could not have it any other way. Having Pulmonary Hypertension has been a form of art called Mind Over Matter. Mentally, I wrapped my head around this disease and I felt like my body soon followed. My art now has a purpose, my writing has given me a purpose, and I've met countless supporters, people, and had amazing opportunities. Why? Because of my crappy lungs. I really am thankful for them sometimes. It really takes reminding yourself that you have a disease, you are not the disease. On this email sent by Serena, she states, "Statistics are not kind or hopeful when it comes to this disease." Then she asked, "What have you been able to do that you were told you cant?" Well my statistics were given to me in the words of, "You may not live another two years" and that my loves is what I've been able to do; live.

-haley.
phenomenalhaley.wordpress.com

PHighter Friday: Keti

Adventures with a Loser Disease

Today is a most excellent day ! And as time goes by, the good days have been out numbering the bad days.

It was late 2006 when midday at my workplace someone said to me that my ankles were very swollen, and I was shocked at the size of my feet as a whole.  Of course all kinds of advice were thrown at me as to what to avoid eating, but I knew that it was something more than water retention…. I started paying close attention as to when the swelling would start in my day to day, and noticed that all remedies for water were useless. In fact prescribed water pills caused ER visits due to dehydration and potassium issues… Diagnosed with Congestive heart failure… while dehydrated?? Hardly ! 

I had two separate  A-fib episodes that year at 3 a.m. , and was assigned to a cardiologist who in a course of 2 years fed me all the tests and stories of a heart condition that I didn’t have but “ you need to take heart meds just in case”.  I did not follow his advice, I was a very healthy and gym fit woman now terrified as to what could be wrong.  After 2 years of being misled I went to a different  and younger cardiologist who found that my right ventricle was stressed at  76 , and sent me to a PAH specialist who did the Cath and determined what was ailing me for more than 5 years actually, he said.

He also sent me to the sleep center where they found that I stopped breathing 82 times in one hour. I was given CPAP which gave me energy and filled me with air all night long.

We all know the course of things, the fears, the loneliness when no matter who loves you and who is around you… you are walking this road alone moment by moment unable to think of anything else. Oh, they all “understand”…  but no one can possibly know unless they face death eye to eye.  It became the demon for me,  to fight and flight better and faster than “IT”.  I started researching on lungs, and their maintenance… and yes I was and still am a smoker… and I didn’t talk about PAH to anyone.

I have been a healthy eater all of my life and yet the stress of this demon filled me with cortisol and I started to balloon. I was told to give up my bicycle and “ just sit in a chair a wither away” more or less. And so I signed up at the gym …
Most days feeling like I will pass out but at least I was doing something I liked. The 14 months that they gave me in life meant nothing to me. I was going to go down fighting, learning my lungs,  being pro active, advising others not to listen to anyone but their gut. My kids gave up on me, blamed my smoking…  couldn’t deal with my “dying”… Bless them for deserting me for I found unimaginable strength on my own, because of it.

14 months came and went, and my every 6 months six minute tests went from 175 meters to 280, in 2 years my number had gone from 76 to 54 and the doctors now wanted to know what I was I doing. Tracleer, the wonder drug, stops the PAH from worsening, but we all know that no drug cures us !!

I told them that I went to the gym, took vitamin B3 for my lungs and blood flow, Mega dose B 12 daily B Complex and was convincing myself that I HAVE NO DISEASE! I stopped making the demon my priority until it became a fact of my life like brushing my teeth. I listened to no one and even today I could care less what advice I am given… Be me, live me, and then come tell me how to fight.

By April 2013 the Cath showed that my PAH was now a 32.  The six minute walk I did was 260 meters. 
By January 2014 the Cath showed a normal number of 25-26 and I walked 400 meters in 6 minutes.
But I knew that even before the tests, I could walk upstairs 2 flights no stopping, just normal tired when I reached the top.

I truly believe that the CPAP, along with forced lung expansions,  deep breathing wherever I was and whatever I was doing, my vitamin intake, my stubbornness in winning and belief in God, won my fight.

I am not out of the woods they say, but that’s because no one knows everything about the disease…which I prefer calling a CONDITION…  a diabetic has more to worry about than I do. I now take only one Tracleer per day so I don’t damage my heart since PAH is barely traced inside me.  Oh, I am supposed to take two per day alright, but I listen to my body more than I listen to  my doctor* …. That’s how I am. On guard are my doctors LOL not meeeeee.   The 14 months became 5 plus years to date, to infinity and my morning pill is just that… a morning pill. 

PAH? Who, Me ?? nope.. and there will never be a round two either! Demon is scared of me now!

*Editors note: The PHight or Flight Project and it's contributors do not endorse or suggest changing prescribed medication in anyway. The PHight or Flight Project always recommends talking to your PH specialists about any questions you have about medications.

PHighter Friday: Tia

Myself a few days ago at a place near where I live
called Deception Pass

How Long Have You Had PH? What medications are you on?

I was diagnosed with Severe Pulmonary Hypertension when I was 9 years old, although doctors believe that I have had it since birth. When I was diagnosed at age 9, a lot happened. I was told I wasn’t going to live because my heart was so enlarged. A PICC Line was put in and I was put on the medication Flolan. I was only on it for less than 3 months when my PICC Line fell out in the middle of the night. Doctors made a big ordeal that if I was off the medication for more than 24 hours I would die. It was well over 24 hours without it and I didn’t die. Doctors then realized I didn’t need it. At age 12 I was put on Tracleer (Bosentan) where I did amazing on it! That was almost 15 years ago. I am now on Tracleer (Bosentan), Revatio (Sildenafil), Prednisone, Pulmicort Inhaler, Foradil Inhaler, and Spiriva Inhaler.

What are you able to do that doctors said you couldn’t?

When I was born October 22, 1990 my parents were told I wouldn’t live and if I did I would be mentally challenged due to being born at 28 weeks. Well, guess what? That didn’t happen. I was raised by incredible parents who told me I am no different than anyone else and I can do anything I set my mind to. I was always determined to get good grades in school; I was never in any special education classes because of my “disability”. I did have an I.E.P. (Independent Education Program) that was only because of having my oxygen and if I were to get sick and be away from school they had a plan in action to where I wasn’t to get behind in school. I graduated on time, with my class in 2009. I was Senior Class President and graduated on the honor roll.

Last Hospitalization:

I have not been able to move forward with my education because I had a health set back the summer after I graduated in 2009 where I was in the hospital for a month and a half, due to some not so great decisions on my part. Not due to being immature but being forgetful and caught up in being a High School senior. I forgot to take my medications that are so very important! I was in the hospital where I had a PICC line put in once again but this time I was put on Remodulin. Doctors were talking Lung Transplant, my family and I then until May 2010 went through everything to prepare for transplant. Testing, doctor visits with the surgeon, transplant classes, etc. I then decided when they were prepared to list me I told them no I wasn’t ready. In August 2010 I received a new doctor. I asked to see if I could have the PICC Line taken out. I was tested to see what was more effective, the PICC Line medication or Oral PH treatments and in conclusion I was removed from infused medication in September 2010 and my PICC Line removed that November. I would love to go back when the time is willing, I’d like to become and Echocardiographer. By this time in my life I could probably do them on myself in my sleep! Haha

What does your day consist of with PH?

Some days consist of being with my 1 1/2 year old and 8 year old cousins. Being silly and having fun with them. A lot of the time I like to relax at home, being with family every chance I get and spending all the time I can with my boyfriend Mac when he isn't busy working. I am sort of a homebody. I like movies. whether sitting at home watching them or going and seeing one. i love to ea and having being trying to get more involved and learning to cook more meals. I like going on little adventures here and there. Too much activity and I get worn out easily.

Hardest part of life with PH:

The one thing that has gotten to me though having PH the last few years is the fact I don’t have a good friend support system. To be honest I don’t have any at all. I mean best friend or good girlfriends that I can pick up the phone and cry to, talk to and know they’ll be there for me. On my part it’s hard for me to be that sort of friend but it would be nice if I were to be able have that. It is hard, and has always been hard. There is a difference between having friends and the people you went to school with. I was only invited to a few birthday parties by girls I went to school with here and there. No, one besides a few people actually reached out and tried to be my friend, not just in school but outside of school as well. My mom tried to push me to make more friends but it was hard when not everything girls want to do I could just go and do with them like walking the mall, or going and watching the high school football games, where I would get cold and turn blue just sitting there for less than an hour. I am girl, I like to get pretty, do my hair, and makeup. I like to shop but only when I know I need something because I know the mall is not friendly to me with all that walking. I’m more laid back, I love food and to go out and eat. I love going and seeing movies. More so yes I am a homebody because I can just run all day. I get tired, my oxygen only has a certain time frame of hours it lasts, and I get headaches when I do too much. I sound lame that way but I would give to have friends who understand and tell me its okay.

What is your dating life like with PH/Oxygen?

Everyone on the PH site asks about dating, having kids, etc. Honestly I was like any other girl I had crushes, oh many crushes growing up. I never dated though; I had my one tiny middle school relationship. A slow dance at an after school dance turned into a little fling for a few months. Didn’t involve holding hands or kissing but I did get flowers on Valentine’s Day in 6^th Grade from him. Then you move on. I have only had 2 serious relationships in my life; the first was the summer before my junior year of high school. A guy friend from school added me on MySpace and that’s how my life went in a direction I thought it never would. I got caught up in the whole my first love. I don’t regret that time but I was young, naïve, immature and definitely had low self esteem. He was a nice guy, but it only lasted so long. At that age it’s hard to get someone to comprehend this is what your life will entail being with someone that has PH and oxygen. He didn’t get the magnitude of it and I wouldn’t want someone to at age 18 fresh out of high school. I had a small relationship the summer I got sick after I graduated; he was a nice guy but not the guy for me. I then had the next 4 years. I took those to myself. I learned to love myself and build my self esteem up more than it ever has been. I had a long time to learn what I wanted and didn’t want in a guy and out of a relationship. That was the best thing I could have ever done for myself. In February 2013 I met my boyfriend on an online dating website. We have been together for a year and a half. He is the sweetest, funniest, cutest tattooed guy to come into my life. Not only does he understand my life, he has done things and wants to continue to do things that change his life to have me in it. I will admit he knew a good amount of time before me that I was the one before I knew he was the one. Only in part I was scared, I hadn’t dated someone since after High School. He has never thought differently of me with having oxygen. He told me the first time he seen my picture he loved my smile. He has told me early on that he wants to take care of me, no matter what happens. He is the one I am going to marry someday, and have children with. He knows I can’t have children and he would never let me risk my health to be selfish because he wants kids. We both do want children one day but doing it the right way. I have always said I wanted to do Gestational Surrogacy. When the time comes we will but adoption is also an option as well for me.

 

That is some of my story; I still have a lot more of it to happen. I hope any young adult woman or man who reads this that has PH gets some glimmer of hope from it and it changes how they feel about their life. I have always told myself when people say “Your life must be hard?” I tell them “Someone out there has it much worse than I do.” It’s the truth. I have never been unhappy about my life. This is my life and I live it to the best of my ability.

If you would like to read more about Tia and her day to day life please make sure to visit her blog: In the Life of Tia.The PHight or Flight Project would like to thank Tia for sharing her incredible PH journey for PHighter Friday!

* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.