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.

PHighter Friday: Nicole

I was very very healthy when I was younger. I didn’t really have any issues growing up except a few migraines here and there.

When I was 18 (in 2006) I went to the gym and passed out. I didn't really think much of it. A few months later I went to school and passed out walking up a flight of stairs (talk about embarrassing!!!!!) My parents decided that I should go to a cardiologist. I went and they ran every test imaginable and guess what?!!! They couldn't find anything wrong. They said it was all in my head!!! You know because I enjoyed making a fool of myself and passing out in front of everyone lol! (Def not funny at the time!!)

Three and a half years went by and I continued passing out, each time was worse and worse. I finally got a second opinion and that doctor said I had something called POTs. He put me on vasoconstrictor and sent me on my way. Six months later (may 2006) I got married and my husband’s job takes us to Missouri. I felt horrible the next 6 months. Tired, passing out, and just feeling miserable. I decided to take myself off my medicine. I could tell I felt a little better when I didn't take it.

Oct 1, 2006 my husband, his aunt, and I decided to go to a football game. We got home and I had a horrible migraine so I went straight to bed. I got up in the middle of the night to use the bathroom and passed out. My husband tried to get me to come to and he couldn't. He called 911 and they talked him through giving me CPR. He did that for the next 20 min until the ambulance got there. (We lived out in the middle of nowhere) I finally came to and they rushed me to the nearest hospital. Stayed there for 30 minutes when they realized that something was really wrong and they rushed me to the nearest big hospital.

I was scared but I had this sense of peace that everything was going to be ok. The next few days they ran so many test. Couldn't figure out what was going on. I passed out one more time in the hospital and my heartbeat went down to 11 beats. Scariest thing ever. My doctor finally came in and said we think you have Pulmonary Hypertension we need to do a right heart cath to confirm. They did a heart cath and found my pressures were in the 100s. At the time I didn’t realize how bad that really was.

The doctor had never seen or even heard of PH. So the first thing they told me is that I was going to need a heart double lung transplant! A what?!!!! I didn't even know that was possible.

He decided to call around and see if there were any other options. We were desperate for something other than a transplant. I was 22 years old for Pete's sake. I had tons of dreams I looked forward to accomplishing and that was not on my to-do list. The doctor finally came back and said there was this drug that they called the miracle drug...Flolan. He told me about it and I was excited and devastated at the same time. I stayed in the hospital in the ICU until October 31. I felt better on Flolan than I did in the past 4 years. It really was a miracle drug although a pain in the butt too! But it saved my life and I will forever be grateful for that medicine. I have since switched from Flolan to Remodulin and now I'm on the Tyvaso and Tracleer.

 

I am capable of doing almost everything I could before diagnosis with the exception of running. The best way I coped with being diagnosed is with prayer and keeping a journal.  I love looking back in my journal to see how far I have come since 2006.  I have also tried to keep a positive attitude!  I could let this disease get the best of me or I can make the best of having this disease.   

Since being diagnosed my husband and I have adopted two beautiful babies and are enjoying every minute of it.  Please feel free to email me with any questions at mcclelland06@yahoo.com or check out my blog (that I haven’t updated in while..oops!!) www.adoptionmcclelland.blogspot.com

The PHight or Flight Project would like to thank Nicole for sharing her incredible PH journey for 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 found under the Share Your PH Journey/Contact tab.