Partners with PH: Mike and Reinee

When you first found out about Reinee's diagnosis how did you feel? Has that feeling, and how you view PH changed throughout the years?  Is there anything that scared you about the diagnosis at first that has changed?

Mike:  Reinee first told me about her condition only after a month or so of dating.  It was a very intimate setting – lights off and blanket over our heads – in the living room of my apartment, just us two hanging out.  She softly spoke and told me about her condition.  At first, I didn’t comprehend the severity of PH, that there was no cure and that it would progressively get worse.  But, honestly I didn’t care how this would impact my life because I already saw her being a part of mine.  I fell in love with this girl.  That night, I made it a point that I would support Reinee but not treat her any differently than I did prior to knowing.  Since then I never looked back and never strayed away from the promises I’ve made to her that night.  Not once have I ever felt obligated to stay with her or take care of her during the down times because I was willingly glad to and I just wanted to be with her… All of her.

I guess the only thing that scared me about her condition was knowing that it could get worse to the point where I’d lose her.  I will admit that there were some close calls but ever since we got married about a year ago, our bond has never been stronger and both of us are the healthiest we’ve ever been.

Are there any activities that you and Reinee do to together? For example, vacation once a year, walking the dog for 30 minutes after dinner, cooking, watching movies etc

Mike:  I’m very proud of Reinee and all the things that we’ve been able to accomplish just this year alone.  Ever since the installment of her new medication (Tyvaso), it has given her the ability to become more active and endure more strenuous activities.  I’ve literally witnessed her from being out of breath after walking up a flight of stairs to her first time snowboarding with me just this past weekend!  Now snowboarding can be very tiring even for me at times but Reinee, although cautious, arose to the occasion and attempted to ride down bunny slopes like she had no PH at all.  At the end of the day, she was S-curving the slopes and was hardly falling down.

It also brings me joy knowing that I’ve been able to experience all these “firsts” with her.  Earlier this year, we were vacationing in Oahu and I finally persuaded her to hike up Diamond Head with me.  We hiked up that ~1 mile crater and were able to share the miraculous views from the top.  At that moment, I really felt that this was a milestone for Reinee and it made her realize that if she was able to do this, that there’s no telling what else she has the potential of accomplishing.  Later on that trip we went paddle boarding and further into the year we also tried indoor rock climbing for the first time too.  Again, another feeling of self-fulfillment as I saw Reinee ringing the bell atop of each climb she made.

Is there anything that you do to help Reinee with her condition? For example, carrying laundry up the stairs.


Mike:  Simply put, I’ll do anything and everything in my power to help her with her condition.  I’ll do anything from helping her set up her medication to carrying all the groceries/laundry from point A to B.  Although Reinee does a great job of holding her own which I greatly appreciate, I will never hesitate to help her with whatever she needs.

What impresses you the most about Reinee? What do you admire about her the most? Is there anything about her personality that you feel has helped her thrive?

Mike: I love her fight and unwillingness to give up on herself and our future.  We take it a day at a time but definitely have our sights on raising a family of our own.  This is our goal in life and although she cannot bear a child for herself we’re looking into all options and it has led to the path of surrogacy.  Wish us good luck!

I admire the fact that Reinee continues to live her life regularly, meaning she carries herself as if she has no condition at all.  At the same time, Reinee knows her limits and knows when to slow to down if her PH gets the best of her, but this is always short lived.  Reinee can bounce back and continue to act as if nothing is wrong.  Her resilience is impeccable and is something that motivates me to be a better person for myself and for each other.

Reinee’s personality is fun-loving and upbeat.  She’s a pleasure to be with and it’s always a laugh fest when we’re with each other.  We’re very random too about the things we talk about or the things we do like singing/rapping out loud while driving in the car or spontaneous tickle fights in bed before falling asleep.  Reinee knows I’m very ticklish and takes advantage of it all the time when she wants something.  She has this power over me and without fail can always make me feel better when I’m down and keeps me in check when I need to be! Lol 

Is there any advice you would give to other people who are in a long-term relationship with someone with PH, or anyone who is considering marriage with someone with PH?

Mike: Like any relationship everyone has their own “deal” that they bring to the table, but you as the significant other must be able to love that person for both the good and the bad.  When Reinee and I were taking marriage prep classes, the deacon told us that love is unconditional and you must accept each other as whole, especially for their faults.  You’re not just marrying the person you fell in love with, but also the person that gets on your nerves and irritates the heck out of you sometimes.  This message solidified how I felt for Reinee and that I would love her despite any deal she had.

But maybe it was easier for me to be with Reinee because she appeared to be a healthy person when I first met her.  And maybe it was also for the fact of dating an older woman that attracted me to her more, but whatever it was I knew she was someone that I could relate to and most importantly have fun with.  Reinee was honest with me about her PH and upfront about the possibilities that could happen throughout our relationship.  But until now, we’ve weathered the storms, overcome every obstacle, and continue to stride forward with gusto because nothing is going to hold us back from living our lives to the fullest and enjoying our family to we’re old and grey.

PHighter Friday: Kellie

Life beholds many unforgettable experiences.  One of those cherished moments occurred for me on February 1, 2007 when Paul completely surprised me with his marriage proposal.  I was ecstatic to say the least, and we quickly set to work on planning our August wedding.  In mid-February the wedding planning came to a brief halt as I dealt with a short bout of the flu.  Once I was feeling better I dove back into wedding planning mode! However, something was not right as I became more active.  I was unusually short of breath during my workouts.  After a few weeks of trying to "get back into shape" I decided it was time to schedule a doctor visit.  The results came back fine, so once again I decided to start the workouts and push even harder.  By May my breathing was continuing to get worse.  Paul convinced me to set up another doctor appointment.  By the time I set up this appointment I could barely walk from my car into work without having to stop and rest.  At this second visit my doctor decided it was time to look at my heart.  A few tests were done and an echocardiogram was scheduled for a couple days later. 

On Friday, May 25, 2007 I arrived for my echo a bit apprehensive, but hoping I would receive a simple explanation for my shortness of breath.  It wasn't long before I sensed something "wasn't right" during the echo, but the technician wasn't about to reveal what it was to me.  I will never forget the look on my doctor's face when he came in to break the news to me that my pulmonary pressures were extremely high, there was major concern about my heart, they were going to do a few more tests, and then I would probably have to be admitted to the hospital that day (which I was). 

After being admitted to the hospital the panic really set in.  As I was being wheeled away for a right-heart catheterization, I remember looking into Paul's eyes and both of our eyes immediately pooled with tears...tears of fear and the unknown. After the catheterization I was sick, chilled and scared.  Whatever I was given at that point knocked me out for the night.  The next eight days I slowly learned more about my disease and the aggressive treatment regime I would be starting to try halt this progressive illness.  It was decided that triple-therapy was in my best interest, so I began sub-q Remodulin, Tracleer and Revatio.

I spent the next three months focusing on healing and learning how to manage my medications so I would be ready to walk down the aisle.  It was a summer filled with much pain and suffering, but I was determined to move on and live life to the fullest.  By the grace of God, I had the most fabulous wedding day.  On August 11, 2007 I was able to marry my best friend and companion for life.  The challenges of the previous three months had only brought us closer together and made me all the more sure that God was taking care of me in a special way through the gift of my husband. 

One of the most difficult realities of my illness was the loss of being able to bear children. Although my heart ached, I was blessed with an adorable nephew and a beautiful niece, as well as a classroom full of first grade students to enrich my life. I was thankful to be alive and thankful to be back working full-time with children. I was gifted a notepad with the saying, “keep a dream in your pocket and faith in your heart.” This immediately became my motto, as it deeply resonated with the way I wanted to live my life. So I kept on dreaming and had faith in God’s plans for my life. I trusted that my life would continue to be filled with blessings, many greater than I could imagine.

In 2011, my husband and I felt fortunate with my improved and stable health condition and felt it was time to pursue adoption. Just as we finished the paperwork to be listed as a “waiting family,” PH was brought to the forefront in our lives when my mother was unexpectedly diagnosed with PH. That’s a whole other story in itself, but it was a magnificent reminder that anything is possible with God. We witnessed a true miracle in my mother’s recovery and are blessed to have her here with us today.

In 2012 the greatest blessing of our lives came into the world. My heart sings that we were chosen to be the parents of a beautiful baby girl. I will never forget the day she was born and the love that swelled inside of me as I took my first look at her. God had a plan, and it was even better than I could have imagined. My heart that once ached with loss is now bursting with love and I feel at peace. As I watch her play, learn and grow, I am reminded everyday how beautiful and precious life truly is. I am blessed to be a mom.

Since my diagnosis, I was determined to thrive, not just survive. I have taken an active role in doing my best to lead a healthy lifestyle that has allowed me to thrive. I immediately began a low-sodium diet. It was a difficult change in the beginning, but I could sure tell a difference. Prior to my diagnosis I was active in sports that my body no longer tolerates. I have since found new activities that I enjoy and are a benefit to my health. I enjoy yoga and mediation. I love going for walks and recently got a Fitbit so I can track my daily steps and activity. I have also delved into the world of Young Living Essential Oils and am so excited to have something that helps me as I manage the side effects of all my medications and has given me a boost in my overall feeling of wellness. 

I am thrilled to be involved in the study with the implantable pump for Remodulin. It is such a delight to swim and shower without worrying about an external line and pump. It’s amazing to think of all the advancements in therapy that have come about since my diagnosis 7 years ago and I trust that even better things are coming.

I am thankful for the continued support of wonderful family, friends and medical professionals. I am grateful for the Pulmonary Hypertension Association and all that has been accomplished thus far. I will continue to PHight and give my support until a cure is found!

Although the path can be bumpy at times, I am confident that God is with me every step of the way.  I am keeping a dream in my pocket and faith in my heart because anything is possible with God!

http://phight4wellness.wordpress.com/