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.