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 Follow Up: Reinee

Since my last post, I've just been trying to take in all of life's blessings. I recently participated in the Race Against PH held by Stanford Hospital's Vera M. Wall Center for Pulmonary Hypertension. I had about 20 of my family and friends participate with me and it was fun! The outcome of these annual races are pretty overwhelming with the amount of supporters and sponsors. It's amazing to see everyone come together to raise awareness for Pulmonary Hypertension. I didn't actually run the race, but I power-walked the entire way and saved my energy to jog across the finish line. My family and friends who ran ahead waited for me a little before the finish line so we could all finish the race together. That moment was amazing and it felt great. I've only participated in Stanford's Race Against PH one other time before, in 2011, and compared to that, the event has really grown. If you haven't participated in a marathon for PH, I urge you to. It's such a wonderful experience.

Another major thing that has been going on in my life is the process to have kids. I say "process" because it is in fact a process, a very long one. My husband and I are currently going through the process of gestational surrogacy. That is when they take our embryo and implant it into our gestational carrier, or surrogate. When it came to our talk about having kids, which was well before we got married, we knew that it was not in the cards for me. I cried. I was depressed, but I had work with the cards I was dealt. My husband and I knew we wanted to try to have our own kids and obviously, this was the only way. We both had long talks with my doctors, nurses, and social worker about the risks, but I was willing to take them... and so was my husband. I honestly feel like I'm at my healthiest I've ever been so now would be the perfect time. There was a catch to going through with surrogacy though, and that was to get off of Tracleer. For those of you who don't know, one of Tracleer's main side effects is birth defects. My doctor decided that I needed a 3-month wash out period so that Tracleer would no longer be in my system at the time of egg stimulation. There haven't been any studies on the effects of Tracleer on eggs, but there have been studies of the effects of Tracleer on pregnant rats. So my doctor wanted to be safe and wanted me to produce the healthiest eggs needed for fertilization. I wasn't worried at all, but my doctors were a bit concerned. Of course they had to be concerned, they're my doctors. Their exact words were "we are not encouraging this, but if this is what you want to do, we fully support you and will take whatever steps necessary to make sure this happens for you." And honestly, that was exactly what I wanted to hear. Support from my team of doctors is all I need to know that everything was going to be OK.

My husband and I are now at the point of looking for legal representation and we're also waiting for our gestational carrier to be cleared of all initial testing with our fertility doctor. Genetics testing has been done, bloodwork, psychological and personality tests have been performed, as well as physicals. I have been off of Tracleer for about 5 weeks now and I feel fine. The first week was hard. I thought I wasn't going to be able to take being off of Tracleer, but I think my body just needed time to adjust; it was definitely going though withdrawals, though. I experienced a tight, heavy chest and minor palpitations, but I'm not a stranger to these symptoms so I just took it easy and continued to work. I'm completely fine now, and I'm still on Revatio and Tyvaso. 

Aside from the PH race and surrogacy, I have also recently challenged myself to snowboard with my husband in Lake Tahoe. I was scared at first because the last time I visited Lake Tahoe I didn't do so well. The elevation got to me, BUT at that time I was not on all the therapies I am now. Honestly, this time I was real nervous and still skeptical. I even had second thoughts about actually trying to snowboard so I had my husband hold off on buying me a lift ticket. I sat and waited in the cafeteria until it was time to do my next session of Tyvaso. When my husband came to check up on me after he did a few runs, I just said "alright, let's go!" I figured that if I came here with the intent to TRY, I might as well TRY. I felt fine, nothing was really holding me back except fear. We ended up snowboarding for about 5 hours. I had more than a few good spills, but I got the hang of it and I think I have a new found love of snowboarding! 

Sometimes I feel guilty about sharing my experiences, only because I know there are newly diagnosed patients out there who are feeling horrible. I remember being newly diagnosed and attending a support group with a couple of patients who were doing so well. For some reason, it made me feel worse because there they were living life and here I was thinking mine was ending. However, I want all of you to know that it took me almost 12 years to feel this way. It wasn't an easy battle, either. Please know that I'm active because my body is at the point where it's allowing me to be active. I don't feel crappy and try to push myself to do these things. I also want all of you to know that challenging yourself, even just a little, will give you hope. Don't ever be scared to get off of oxygen, or go for a walk, or get out of bed, even. Give yourself a new challenge everyday, it doesn't even have to be physical, but if your body doesn't allow it then at least you know your limits. Don't ever give up on yourself, keep PHighting! And always remember, you don't live with PH... PH lives with YOU.

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.