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.

Partners with PH: Josh and Nicole

So often people spend years searching for that thing that inspires there life and gives them purpose. I am lucky because I found my inspiration early in life and get to reflect on it daily. It is an incredible feeling to have that kind of inspiration day in and day out. I am going to pause here and give you a little background before I go any further…

My name is Josh and my wife’s name is Nicole, and I was asked to share with you a little about our story. Nicole and I met in college and it didn’t take long for us to realize that we were in love and meant for each other. We got married May 13^th, 2006. In a three week period of time I graduated college, got married to the woman of my dreams, and started a new job with a Fortune 500 company that had endless opportunity. Life couldn’t be better. I felt like nothing could slow us down.

About two months after we got married, Nicole started having recurring episodes where she would pass out if she pushed herself to hard physically.  At first, the episodes were not severe and according to her doctor at the time, were something Nicole would just have to sort of “manage” by adjusting our lifestyle and taking medications. 

Prior to us getting married Nicole had some very minor symptoms but nothing like this and doctors never seemed to be worried. One doctor told her the symptoms were all in her head and that nothing was wrong with her. It’s like I knew something was wrong but since the doctors didn’t seem too worried about it, I was hopeful it wouldn’t get to bad. I just knew that I would be there to help her and we would get through it, whatever it was.

In a short period of time the symptoms worsened and her passing out turned into violent convulsions. One night she had an episode that was so severe she stopped breathing.  I started to give here CPR and called 911.  I had no clue what I was doing but somehow she came to and started breathing again. I am not sure there is a way to explain the fear I felt at that moment. I thought she was going to die in my arms right there. Lucky for us God was on our side that night.

The paramedics arrived shortly after I got her to start breathing again. We ultimately ended up in a hospital in downtown Kansas City where she was admitted and moved to the critical care unit. Doctor’s ran several tests to try to figure out why she was having these episodes.  She continued to have them in the hospital and actually coded two more times and was revived by the medical staff. I felt like life was falling apart and I was losing the most important thing in the world. After a few days of being admitted she was diagnosed with Primary Pulmonary Hypertension (PH). I remember feeling confused and wondering what that really meant.  Is it treatable? Is she going to be ok? 

The doctor explained the disease was a chronic lung disease that causes the heart to fail and that that the average life expectancy (at the time) after being diagnosed was 3-5 years and with a heart and lung transplant it could extend from there. He also noted there were treatment options but very few patients actually get better after starting treatment. For most patients treatment only slowed the progression of the disease.

Looking back I remember thinking heart and lung transplant… really?  How is this happening?  She is so young and really took care of herself. Why Nicole, why us? Life is not fair. Anger, pain, denial are all feelings that came to me over the next few days. There is no way to describe the experience we went through. This was the bottom.

Well let me explain how things can change.

While life at that moment seemed lost, God had a plan for us. I have never seen anything like it in my life. Nicole was determined to get better so we could live a full life together and it was like God was with her every step of the way.  There is a power in positive thinking because Nicole always finds a way to bring out the positive side of every situation. Each day Nicole seemed to get better. Am I saying it was easy no, there were days of struggle, sickness, and symptoms but somehow we got past it.

Over the next few years, life slowly returned to “normal”.  By “normal” I mean exceptional. Nicole got better and better.  She went from being on constant IV infused medication to an inhaler (nebulizer).  Growing up in Pensacola, Nicole dreamed of the day she could swim in the water again and guess what… she does every summer now! Not only is she physically better, we have grown as a couple and as a family. We have two beautiful children now (both adopted since we couldn’t biologically have children). They are amazing and the light of our life. If you think that PH is the end and you can’t get better, stop and know that it’s not true.  Sure there are days she doesn’t feel the greatest and yes she is still limited by physical activities but in the grand scheme of things, she can do more than she can’t.

We are an example of how being positive will carry you through. Pretty sure it’s evident by now but going back to where I started, Nicole is what inspires my life and fills me with purpose. Sometimes people tell me I am a good person because I have taken care of her but what they don’t know is that it’s the exact opposite.  Without her I would be lost. She is an amazing mother and wife that is the driving force behind our family. 

So for those of you that have someone you love going through this be positive and uplifting.  Your spouse/significant other needs your support and deserves it.  It can be tough but I promise you it means so much to them just for you to be at their side smiling and telling them you love them. Live in the day and know that God’s plan will take you where you need to go. It is so important to enjoy every day of the journey, even the tough ones.  Let the little things life throws at you go as it’s not worth it to stress over. Who knows, you could end up like me with all your hopes and dreams coming true.

**Nicole's previous PHighter Friday story can be found here.