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.

What is a 'Spoonie?'

Have you ever heard someone refer to themselves as a Spoonie? Do you know what a Spoonie is?

I didn't know what a Spoonie was until very recently. I started seeing more and more people refer to themselves as a Spoonie as I connected with more chronically ill people online. One day a friend of mine on Facebook posted The Spoon Theory, written by Christine Miserandio. The article discuses how the author suffers from chronic diseases/illnesses. Although she doesn't look sick, her body is. Each day she (like many other Spoonies) faces limitations because of her disease.

The idea behind Spoon Theory is that those with a chronic illness or disease wake up each day with a certain number of spoons. Those without a chronic condition wake up with an unlimited number of spoons. Every time you complete a task it costs a spoon. This may not seem like a big deal, but someone with a chronic condition that limits their mobility may wake up to have 20,15,7, or even 5 spoons a day. Many of those of us with a condition like Pulmonary Hypertension must use a spoon for even the most basic of tasks. These basic tasks are often things that those without a chronic disease or illness do not need to think twice about. I suggest that you read Miserandio's article on Spoon Theory, but I will shortly explain it in my terms.

I'm not much of a spoon gal. I imagine myself walking around with poker chips, and although my chances of developing Idiopathic Pulmonary Hypertension was one out of a million, I ain't a millionaire. Instead, I have won the "crap" lottery. Everyday I wake up with X amount of chips. Lets say today I woke up with 13 poker chips. On this day I have decided to go out, so I will need to shower. Showering will cost me one poker ship. Now I need to blow dry my hair, that is another chip. I get dressed, that is half a chip (let's say half a dollar.) I go to the mall and walk around for 2 hours, we will say that is 5 chips. It adds up quickly huh? It isn't even 3:00 pm and I am almost out of chips. I'm really tired after the mall, and want to change into my pajamas- which are all the way up stairs. Stairs are very difficult to tackle with this disease, and my parent's house has large ceilings. That means I will be climbing 15 painful steps to go up stairs to my bedroom. This will leave me completely breathless, and make my heart pump so hard it feels like it is going to burst out of my chest. To go upstairs, clean my face, and put on my pajamas costs me another 3.5 chips. Each day I must ration my chips, and decide in advance what I will do that day, or how I will spend my chips. Plus, you always wanted to make sure you have a few spare chips up your sleeve, for "just in case."

It is difficult, I certainly miss being a typical 25 year old who could do whatever I wanted to without worry. My days of staying up past 10:00 pm and going to the bar with friends are long over- at least for now. I still have hope that I will continue to get better and better (and better and better....)

I do want to share that I am improving. When I was first diagnosed I needed a stool to sit down in my shower. A shower back then would have cost me 15 chips. I would come out completely pale and blue. I was done for the rest of the day. Now I am able to shower standing, and although isn't a brainless task like before, it is easier to manage. I am able to work out for an hour or two each day. This includes walking for an hour, and using an exercise machine where I must use my legs and arms to lift my body.

Before all this, I had really gotten into working out. As soon as I was able to stand again I started off really slowly. Starting with maybe 10 minutes of Wii Fit yoga, then 20 minutes, and eventually moving on to strength training. I am super determined to function as well as humanly possible with my diagnosis. Whatever happens, I will have no doubts that I didn't give it 150%. Even on days where I would spend hours bawling my eyes out, mourning the loss of what I thought my life would be like, I eventually pulled my butt off of my chair, wiped my tears, and did some light yoga. If you have Pulmonary Hypertension and want to work out, make sure you discuss what exercises would be safe and suit you the best with your PH specialist. I have an oximeter so I am able to make sure my 02 levels and heart rate are at a safe number for me while I work out. It is a great investment if you do not have one yet.

Although I have won the "crap" lottery I am very rich in other ways. My amazing parents help me with anything they can - they go above and beyond for me. My mother helps me take off tight pants and paints my toenails. If I am tired, my dad carries me up stairs- all the way up 15 steps. They have done so much for me. My boyfriend has been incredible through this too. I will save all this for another day when I discuss the role of caregivers, and how grateful I am for mine.

"But You Don't Look Sick" and Oxygen

One of the things you hear a lot with an invisible illness like Pulmonary Hypertension is that you don't look sick.

Yesterday I posted a photo of  myself on social media of me at a cafe with with my boyfriend and I wasn't wearing my oxygen. This lead to several messages asking if I was okay to visit yet, and false excitement over discontinued use of oxygen. I am currently on supplementary oxygen and have been since December 16th 2013. Sometimes I can sit without it for a bit. I hope to one day get off of it completely, but I know that not everyone is that lucky. I have had several specialists say they are confident I will get off of it completely, so I am trying my best not to worry.

For those of us who are on oxygen, it is probably one of the only thing that makes us look sick. It isn't "normal" to see a seemingly healthy 26 year old with a cannula in her nose while her boyfriend drags around her oxygen tank. While it is saving my life, and helping me hopefully heal, it is a pain to wear. As another bonus, people who never recognized my boyfriend and I as regular customers now do. He even got a free doughnut the other day because we go somewhere so much! People will remember the girl being walked by her boyfriend.

It is certainly hard to feel attractive while wearing the oxygen. I feel permanently (if only for now) leashed to my disease. I have to sleep, shower and live on a leash. Unfortunately strangers don't make my insecurities much better. I had one bank teller ask me if I was dying, what I had, how I got it, and if I needed oxygen for the "rest of my time." A lot of people give me really rude stares as if I shouldn't have left the house. Sometimes children ask their parents what is wrong with me. I am really tempted to shout that I didn't eat my vegetables as a reply, but I studied child psychology and wouldn't want to screw up anyone's eating habits.

One of the reasons I didn't know I was so sick before diagnosis is because I didn't look sick. The picture to the right is me four days before I was hospitalized at a local hospital. During this time my heart was severely enlarged and surrounded by fluid. There was so much pressure in my heart that my heart created a hole in its wall for relief. I was in right heart failure and had no idea. I had a right heart catheter on Christmas Eve to check my heart and pressures. Like some kind of Christmas miracle, I had no heart damage. I was also at 43% lung capacity. To qualify for a lung transplant one's lung capacity must be at 30% or below. After I was hospitalized my symptoms got worse, and I did look very very very sick. I was in really bad shape when I was first diagnosed. It was a really scary time in my life, and I still am scared. I've come along way, but I still have a lot to go, and I think that is what scares me. I am scared I won't get "there."

If I wasn't on oxygen, I wouldn't look sick but that doesn't mean people won't stop staring or being rude. When you don't look sick, strangers and maybe even friends, may wonder why you can't keep up at a certain pace. They may wonder why you avoid the stairs and search for an elevator. People may assume you are out of shape because you are breathless from walking up a small hill on the way to a shop. They may stare, or even worse, harass you for using a disabled parking spot. Many people have never heard of Pulmonary Hypertension, and do not understand the limitations it can cause. It is hard enough finding the courage and strength to leave the house, only to have strangers think it is their duty to play parking patrol.

This isn't to say that all encounters with strangers I have had are are bad. I have had several young ladies compliment me on my hair. At first I thought they were staring because of the cannula in my nose. Then I was reminded that I still am a 26 year old who tries even harder to look good, and other ladies notice! I have had strangers ask if I needed help or if I would like to go ahead of them in line. Waiting staff at restaurants are really accommodating to my diet, and I think the cannula in my nose shows I am not on some trendy gluten free diet. Friends and family are the most important, and my family doesn't even notice my oxygen cord (they trip over it all the time!) Plus they still think I am beautiful.

Perhaps the important thing is that I am learning to appreciate myself. I never felt very good about myself and the way I look. Now I am learning to embrace the things I disliked before. I never knew how strong I could be until now, and that is the most beautiful thing of all.

* Please find a related article about living with an invisible illness here. In the article Not all disabilities are visible, Nicole Dempsey shares encounters she has had while using her accessible (disabled) parking pass.

The PHight or Flight Project

Why PHight or Flight?

The "fight or flight response" is a physiological response to a received threat or danger. The "fight or flight response" is our body's primitive, automatic, inborn response that prepares the body to "fight" or "flee" from a perceived danger, attack or threat to our survival. I found the "fight or flight response" fitting because we all have different ways of responding to our diagnosis and PHighting.

What is Pulmonary Hypertension?

As defined by the Pulmonary Hypertension Association; High blood pressure in the lungs is called pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). PAH is a chronic and life-changing disease that can lead to right heart failure if left untreated.

The PHight or Flight Project Mission

The mission of The PHight or Flight Project is to help share the incredible stories of those living with Pulmonary Hypertension and provide hope for the newly diagnosed.

Many of us are given certain limitations, and even timelines, at diagnosis. Since my diagnosis of December 21st 2013, I have carried out extensive research and have not been able to find more than poor statistics about this devastating disease. I felt helpless, it just confirmed everything the specialist told me. However, it is important to remember that statistics are about other people- not you.

Several medications have been released in the past few years. More and more people with PH are living longer and longer while maintaining a better quality of life. Yes, this disease is devastating, but hope is on the way. More research continues to take place, and more medications continue to be researched. We are a new generation, and hopefully statistics will improve overtime to provide more hope for those affected by PH.

I have found that the most useful and inspiring information has come from fellow PHers (those living with Pulmonary Hypertension.) Many of them have out lived the dreaded life expectancy they were given, and have gone on to do things many PHers are told they will no longer be able to do such; as returning to work, starting a business, biking, participating in marathons, starting a family through adoption, volunteering within the PH community and so on.

I sincerely wish that you are able to find strength, hope and inspiration through the journeys of others who have Pulmonary Hypertension. I will also be chronicling my life as it changes through my new diagnosis of PH so that we can go through this together. Adjusting to such uncertainty will be difficult, but I am hoping that one day I can be a source of hope and inspiration for others. If you are interested in following others who document about their life with PH, please visit the "PH Blogs and Resources."

If you or someone you know would like to share their PH journey to be shared on The PHight or Flight Project, please e-mail me at phightagainstph@gmail.com. More information about sharing your PH story to be featured on a PHighter Friday can be found under the Sharing Your Story/Contact tab.

Serena