The 'S' Word

What comes to mind when you think of the 'S' word? Is it a four letter word, or is it an eight letter word? The word I am referring to isn't a bad word (although it felt like one for a while.) It felt like word I wasn't allowed to use. I thought this word was off limits for me because I haven't "beaten" Pulmonary Hypertension, or because I haven't lived with the disease for over seven years.

The word I am talking about is survivor.

People who have lived with Pulmonary Hypertension for over seven years are considered a 'long-term survivor.' For those of you not living with PH, I can't even begin to explain how daunting it is to know that if I make it to my 33rd birthday I will be considered a 'long-term survivor.' For those of you who have PH, you already know how this pit in your stomach feels. I have only ever seen the word 'survivor' attached to the phrase 'long-term' when referring to PH. As I have mentioned before, there are not any treatments available that provide a chance of remission or a cure for PH.

When I was diagnosed the specialists came into the room and slapped an expiration date on me. He said I have " about 5 to 10 years." I asked "5 to 10 years for what?" Dying clearly wasn't on my mind. Sure, I Googled the disease before I went to my appointment, but me? Fatal disease? Part of me thought that couldn't possibly happen to me. But I guess it did happen to me, and it is happening to me. Most of us do not get the chance to beat the disease, and are therefore not often considered a 'survivor' unless we beat that crummy expiration date that doctors try to pin on us.

My question is why not? Why are we  not considered survivors the day we are diagnosed?

How do I go from a doctor's appointment where they discuss putting me on the transplant list as 'insurance,' and try to maintain a relatively normal social life? What do I have in common with my peers? Suddenly we are forced to find the fine line between living and dying, and balance it in a modern world. Pay your bills. Take your pills. Don't have an emotional breakdown in public. (Although, it is totally okay to cry in public. I have seen my fair share of people cry at night clubs before I got sick, and it was mostly over guys and french fries.)

How do you love something when you feel like it betrayed you? For me, it became incredibly hard to love myself after diagnosis. After diagnosis we have to try and learn to live with ourselves (and our diagnosis) the best we can. Suddenly our bodies are different and we rely on medication. The most effective medications have horrible side effects, are quite visible, and require that the medication is administrated 24 hours a day, everyday. You also never get a break from the equipment, or a vacation from being sick. Some of us also require supplementary oxygen, which comes with its own separate handful of problems. (Like "do I have enough oxygen to go shopping with my friends? What happens if the power goes out?") Suddenly our bodies are different, along with our lives and what we thought would be our future. I remember feeling as if I could physically feel my body betraying me when I first diagnosed. Worse than that, I felt like everyone could see my body crumbling away. It was hard to love myself, or believe that anyone else could love me. I felt invaluable because my body, for whatever reason, decided to self destruct. After diagnosis, I feel like many of us question our self worth and face self-esteem issues.

We have to try learn to accept, and hopefully love our bodies, despite all the things we might require to stay alive. I learned that I could not love others if I did not love myself. (I know how cliche that sounds, but there is a reason so many people offer this advice.) While I still struggle with trying to accept all the changes in my life, I am also less hard on myself. Superficial things don't hold much merit anymore. Sometimes you just have to accept things for the way they are. That way you can move on and really enjoy what is happening in front of you in this very moment. My boyfriend told me a few months ago that I wasn't affectionate anymore. Truth is, I hadn't been affectionate since after my diagnosis. I was scared he could feel my body betraying me when we hugged. Could he see the expiration date stamped on my body? I also had a hard time really connecting to him. I was tuned out a lot. I was in my own little world full of fear and depression. I still have those days, but I try to focus on living in the moment. I was so closed off, my boyfriend wasn't sure I loved him anymore. I realized that I had shut him out because I was so scared of him leaving me because of my diagnosis. I felt so unlovable, and it was easier to shut him out so I couldn't get hurt in case he decided he couldn't be with me anymore. I learned that it wasn't my diagnosis that was pushing him away, it was me.

Not only have I battled physical obstacles since diagnosis, but emotional. I know that I am not the same person anymore, and I doubt anyone who goes through this experience could be. In fact, I think the core people in my life have changed as a result of my diagnosis as well. They say death changes you. Well, what do you think happens when you get an invitation to the Grim Reaper's party instead of the standard surprise party? Obviously you have time to think about a party that you weren't really planning to attend yet (or even prepared to go to.) This is what I mean about the fine line between living and dying. We are constantly trying to balance both, and still be functional. "Did I leave the stove on? I need to pick up dog food. Should I make a living will?" The last thought shouldn't be something I have to worry about, but it is.

When I was first diagnosed I noticed how easy it was to stay in bed, not change out of my pajamas, and make excuses not to do things with the people that I love. It was easier to stay in bed, be alone and wallow with my thoughts. Once I started to stabilize I was still avoiding doing things that I would genuinely
enjoy. I had this idea in my head that I had to wait for things better. By better, I didn't just mean my health stabilizing. I meant I was waiting for some kind of miracle to make the PH go away. I felt like I couldn't enjoy life unless I was perfectly healthy. I have started to accept my health for what it is (although it is challenging.) When I was diagnosed I was very sick. I was diagnosed somewhere between a stage 3 and stage 4. There is no stage 5. As you can imagine I was in rough shape. I went to bed each night terrified I would die in my sleep because of how sick I was. My heart was severely enlarged. Even with oxygen walking a foot to the bathroom was a major challenge. Because I was so sick, I am starting to really appreciate how far I have come. It isn't perfect, and of course I wish I could be better, but where I am now is so much better than where I was when I was first diagnosed and I am fortunate it for that. I've slowly started to realize that I am doing okay, and that there is no better time than now to start living. I am not sure what my health will be like in the future, so I can't waste anymore time waiting for things to get better before I start living again.

This might sound a little strange, but I don't identify with the colour periwinkle or zebras (things affiliated with PH awareness.) I consider myself more of a unicorn, and I like the colour seafoam. I also don't identify with the word 'patient.' I have had to correct people from referring to me as one because my name is Serena and I am so much more than my diagnosis. (Unless I am in the hospital, I am not a patient.) It took me a while to come to terms with the word 'survivor,' and perhaps you don't feel comfortable referring to yourself as one. Through this experience I have come to realize that we are constantly learning in life, regardless of conditions. After my diagnosis I had to do a lot of re-learning. I am re-learning to live again. I am learning how to live a different life. The lessons that I have learned are things that can not be taught, but only gained through experiences (which are sometimes very painful.) What I have learned is that if you can continue to live, learn and love despite your diagnosis, which could very easily make a person hard, you are a survivor. Even if the word survivor is not a word that you are comfortable with, please do not deny yourself the love and recognition that you deserve. If you continue to live, love and even laugh despite everything; you are at the very least a bad ass.

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.

PHighter Friday: Maddy

My Happily Ever After

My husband Andy and me at a Military Gala. 2014

I was 25, an Air Force wife, married to the love of my life, and about to finish my degree in education. I was healthy and happy. My biggest problem back then was when my dear Oklahoma State Cowboys lost to OU. I had this weird “thing” with my index finger though. I affectionately called it “my dead white finger disease” and saw it as nothing more than an annoyance. I eventually decided to see a doctor about it and was soon diagnosed with CREST Syndrome, a form of Scleroderma. Scleroderma is an autoimmune disease which includes Raynaud’s, the cause of my dead white finger. There is no cure and the progression and course of the disease was pretty much a crap shoot.

I vividly remember the rheumatologist handing me a pamphlet about Scleroderma. Almost as an aside he said “CREST is a much more mild form of Scleroderma...you only need to worry if you ever develop Pulmonary Hypertension. It’s very rare so you don’t need to worry about it.” I find it interesting that I don’t remember much else about that conversation, but I do remember the comment about PH. I also remember thinking it would suck if my annoying dead white finger led to something as horrible as Pulmonary Hypertension. I was glad to know it was very rare.

Thankfully, life went on. We moved every couple of years, I completed my degree. I taught school. I had a son in 2001, and another in 2006. The Raynaud’s was the symptom that plagued me the most, but I dealt with it. I was living my happily ever after.

About four months after my 2nd son was born, I began to get short of breath when I walked up stairs or hills. I figured I was just out of shape and needed to push through it. I began to walk and jog for exercise. I was determined to lose a few pounds and feel better.

We moved to a new state and at around that same time, I began to lose my voice. We all, including the doctors, assumed I was just allergic to the pine trees in my new location. Many months went by and we eventually discovered my left vocal fold was paralyzed. My voice was nothing but a whisper. For many months, I would whisper-sing nursery rhymes to my youngest, and he would whisper-sing them back to me. Giving my older son a stern talking to wasn’t nearly as effective when whispering. It was difficult to communicate by phone with family who all lived thousands of miles away. Even calling the dogs in from the backyard was a challenge, and more tragically, I could no longer order my beloved Dr. Pepper at drive-thru windows. Losing my voice was very isolating and it was a difficult time.

My symptoms worsened. Walking across the room caused me to be short of breath. I slept upwards of 20 hours a day and my youngest had to attend daycare. I was a stay at home mom and unable to care for my child. I was miserable and scared. My doctor placed a silicone implant in my vocal fold which gave me a pretty decent voice again. I couldn’t sing opera, but I never could before. I was just thrilled I could order that Dr. Pepper again. We thought the implant would help with the “air wasting” but things only got worse.

Eventually, at the age of 36, this all led to a diagnosis of Pulmonary Hypertension in October 2007. The cardiologist who did my RHC came into the room and told me I had PH. My heart was moderately to severely enlarged, and it was surrounded by fluid. He told me I might see 38, but I’d never see 39. Like a snapshot in my mind, I remember that I went home that day and as I lay on my couch and watched my 18 month old son play with my 6 year old son, I felt angry and heartbroken. My husband and I were reeling. This couldn’t really be happening right? My happily ever after suddenly seemed to have a different ending.

My pulmonary doctor put me on Tracleer and Revatio along with a slew of other not fun drugs. It seemed I took diuretics by the handful, potassium pills as big as a house, and others I don’t even remember. I soon found myself with a pill box labeled Sunday through Saturday. I suddenly had lots in common with the retirees at the pharmacy on base. Women with names like Ethel and Hazel were giving me recommendations on pill splitters and telling me which lab techs were best. Thankfully, over several weeks, I began to notice a difference in how I felt. I still had to sit down at the pharmacy while waiting for meds to be filled, but at least I could drive to the pharmacy myself. It was a step in the right direction.

In May 2008 we added Ventavis to my regimen. And courtesy of the Air Force, we also moved again. Within a week, I got my life back. Ventavis was the missing link! One day I was thrilled that I was able to go into Target. A week later I was shopping and lunching like a professional. I was meeting new friends, carpooling the boys, walking the dogs, and just being NORMAL. I began to attend all of the social functions at my husband’s work. I met people who had no idea I was fighting PH. I was a regular wife and mom again. My happily ever after seemed possible again.

I switched to Tyvaso in 2009 (from Ventavis). My heart was no longer enlarged, and the fluid was gone. I do not, and have yet to need oxygen. I do fight fatigue, and the shortness of breath still gets me when I walk up hills. But put me on a flat surface, like...say a mall, or the sideline of a soccer field, and I can walk all. day. long.

My three loves...Matt, Katelyn, and Nathan 2014

I’ve since completed a 5k Color Run. I walked, but I did it. I’ve gone tubing on the lake, traveled internationally, swam in the ocean, survived Walt Disney World, moved a few more times for good measure, and I do all the normal mom/wife things that I want to do. I’m certain my parents never thought I would view housework as something I “get” to do, but after being so ill, you tend to look at things a little differently. I sometimes think of sending that cardiologist a picture of myself on the lake, or in the Color Run, or turning 39 (and 40, 41, 42, and 43), but I can’t bring myself to write very kind words to him quite yet.

I have often said that God got me through the trial of diagnosis. He literally held me upright at times, and there is no way to describe how thankful I am. Being honest, I did spend some time in a pity party, and being angry. But He has showered me with blessings beyond my wildest dreams. And I’ve grown closer to Him than ever before.

God gave me a husband and a love that are unmatched. I would not be doing this well if not for Andy and his strong, unwavering support and love. We’ve had some scary moments, but he has never blinked. Andy can always make me laugh, especially at inappropriate times. He has been there for all of the difficult moments, and the fun ones too. We have been married 20 years, and it just keeps getting better and better.

God led my husband and me on an adoption journey that brought us a happiness that defies words. We were blessed with our sweet daughter just over a year ago. We traveled to Taiwan to bring her home and I could never, ever have imagined that joy back when I was absorbing the news of my PH diagnosis. There is no one on this planet who could have convinced me back then that we would be adding to our family through adoption.

Katelyn is 8 years old and joins her brothers Nathan also 8, and Matt, who is 13. I homeschool all three of them and I love it. Of course, some days I dream about dropping them all off at public school, but other days I look around in awe at this life I get to live. It is so different from what I imagined when I was diagnosed.

I was so sad and hopeless at that time. But those feelings have only served to make the joy sweeter. The predictions the cardiologist made were wrong. They were wrong 100 times over. Don’t misunderstand, PH is still hard. Some days are better than others, but isn’t that how it is for everyone? Some days I’d like to throw all the meds in the trash, and go to the movie without trying to manage the timing of my diuretics. I’d love to just have a break from PH. But I refuse to let PH define me. I’m a Christian, wife, mom, homeschooler, friend, daughter, OSU Cowboys fan, and Dr. Pepper drinker. PH is but a small part of that.

I hope anyone who is reading this and is newly diagnosed will realize that PH is not an ending. It’s just the beginning of a new chapter. My best advice would be to surround yourself with people who love you, and are willing to know and understand this disease. And then choose to make the most of every day. Some days it’s easy to do that, others it might take some work.

I don’t know if it is in spite of PH, or because of PH, but I know that I’m still living my happily ever after. And it is sweeter and fuller than I could have ever imagined.

For I know the plans I have for you, “declares the Lord,” plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

To follow Maddy and find out more about her adoption journey please visit her blog.

My sister and me after the Color Run in 2012

The PHight or Flight Project would like to thank Maddy 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.

PHighter Friday: Reinee

PHighter Friday: Reinee

(Edited at 4:37 PM ETD at the request of the contributor.)

I was diagnosed in May 2003 while with Kaiser Permanente, just a few weeks shy of my 21st birthday.  Being born with a heart defect and having open-heart surgery at the age of 5, I was seeing my pediatrician who knew my medical history until I was around 19.  After he retired, he referred me to another doctor who was a Cardiologist.  Around one of my first appointments, I had a routine echo-cardiogram.  My new doctor also took a look at my other organs just to make sure things were working well, however he noticed "stiffness" in my lungs.  At the time, I didn't think anything of it.  I just thought to myself "I'm totally out of shape! I haven't worked out since high school!"  Turns out, it was PH.

I didn't actually know or think that anything was wrong with me.  I felt fine, but hearing the words "progressively worse", "no cure", and "terminal" still echo in my mind from my diagnosis meeting with my doctor.  I fell into denial.  I didn't take my prescribed meds, missed doctors appointments, partied, and just plain ignored it.  But it was still there.

After a couple of years I really felt it.  I felt the tightness in my chest.  I felt the dizziness, the shortness of breath, the depression, but… I didn't care.  I was young.  Then one night I woke up with a horrible cough and blood came up.  A lot of blood.  I felt it gather in my chest.  My mom rushed me to the ER and although it wasn't quite related to my PH (I just coughed way too hard and popped a vessel), it scared me.  My doctors put me on supplemental oxygen and continued my meds.  

From that point on until now, I've been hospitalized quite a few times-- low O2 saturation, respiratory infections, influenza, and losing my insurance with no money for medication.  I really hate the hospital.  My last hospitalization was in 2009.  I was in for 18 days while my social workers worked on getting all the medication I needed.  

I've been in denial, I've been angry, I've been depressed, and I would even go to sleep thinking I was going to die!  I've actually hit rock bottom and just wanted my life to end.  

So-- I know what you're thinking-- what turned it all around?  Well, there's my will to live, there's my family and friends, there's my loving and supportive husband, and most importantly, my faith.  I have so many things to live for so I focused on living, not dying. 

I remember one morning during my 18-day stay in the hospital, a team of nurses and doctors were giving each other the run down as they switched shifts.  I head someone outside of my room say "female living with PH."  Yes, I was that girl.  I was living with PH.  But now… PH lives with ME.  From that point on I vowed not to let this disease take my world from me.  

Now here I am, 11 years from being diagnosed and I feel healthier than ever!

I'm very thankful for my team of doctors at Kaiser Permanente.  They were very kind and caring.  They showed me so much support.  However, since being diagnosed, I've lost my insurance a couple of times, and even moved to another county after my 2009 hospitalization.  I am now with Stanford Hospital and Clinics and couldn't be happier with my care.  I love my team of doctors and nurses!  They truly want the best for their patients.

What are your days like? What are somethings you are able to do that doctors believed you could not accomplish?

I work part-time, 20 hours per week, as a Registered Dental Assistant in Orthodontics. I'm on my feet most of the day as we see up to 4 patients every 10 minutes. I also do wedding makeup on the weekends (depending on my bookings). My husband and I work out at least 4 times per week and I maintain a healthy diet. I take 4 different meds- Tracleer (Bosentan), Revatio (Sildenafil), Cartizem (beta blocker for palpitations), and Tyvaso (inhaled Treprostinil).

What is your life like now compared to how it was at diagnosis?

Life is so much better now. I'm more positive. I do what makes me happy and I take care of my body.

How long have you had Pulmonary Hypertension for?

I've had PH for 11 years now!

What advice would you have given yourself when you were first diagnosed with PH?

Have faith and take care of your body! You only get 1 life so don't let yourself down.

To see what Reinee is up to visit projface@Instagram.

The PHight or Flight Project would like to thank Reinee for sharing her incredible PH journey for our very first 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 under the Share Your PH Journey/Contact tab.

The Countdown is On!

Wow! Thank you everyone for the interest in The PHight or Flight Project. I cannot believe the amount of interest it has gained in five days! Since Sunday The PHight or Flight Project has had over 800 page views from all over the world! Today The PHight or Flight Project has had nearly 200 page views thanks to the Pulmonary Hypertension Association's support on Facebook. I have also managed to raise over $700 for PHA and PH research thanks to the generous donation of readers.

Needles to say I have been very busy connecting with other PHer's who have an inspiring journey to share. Yesterday I went out and bought a keyboard for my tablet so now I can work from outside. The picture above is of me working at my new office, the deck- and yes, I am wearing a hideous tropical print shirt. I recommend working outside to anyone who can! If you can't work outside, at least enjoy a cup of coffee or tea outside a few times a week. Since diagnosis I have been a little home bound because of the giant oxygen tanks that are not fun to lug around. To cope, I went out and bought a bird feeder. I have always loved nature and animals, and my parents have an amazing backyard! The bird feeder has attracted a family of ducks, a raccoon, a skunk, a chipmunk we have named Rocket and lots of other animals that don't belong in a bird feeder. The less an animal belongs in the 'burbs, the more exciting!

Tomorrow is The PHight or Flight Project's first PHighter Friday. For those of you who don't know, on Fridays I will be posting an inspiring PH journey of hope on every Friday that I have a PH journey to share! Good news, so far I have four PHighter Friday journeys finished and waiting to be posted. You won't want to miss tomorrow's PHighter Friday. We will be hearing from a young lady who has had PH for 11 years and is on oral and inhaled medications. She says she is doing better than ever! She is very active, and has a very physically demanding job.

When I was first diagnosed (a little over 5 months ago) my dad showed me this video. I wanted to share it with all of you to get ready for our first PHighter Friday, which will be posted at 9:00 EDT am tomorrow.



In the above video clip Donna Head discusses what Pulmonary Hypertension is, and talks about her life after more than two decades after her diagnosis. She was originally told she had two years to live and would need a lung transplant. Donna discuses what medications she has used through out the years. At the time of filming, Donna remained stable on oral and inhaled medication. Donna does not call her PH a terminal disease, but calls it a "problem."

* 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.