My PH Story

June 18th, 2006 - It was game point, “Bump ‘N Grind” over the “Mental Misfits” (my team, fitting isn’t it?) Good serve, but the Misfits return it in an ideal set up. Beeeeaaaauuuuutiful! Bump ‘N Grind...passes, sets...captain of the Misfits, prepares, gets low, ready for the kill, here it comes….KAPOW, perfect up, no problem. Side out! Now, Misfits’ captain is up to serve (me). She bounces the volleyball in preparation for the serve…1…2…3…she serves…ACE! Misfits win it! It was a great win, but as I thought to myself…“I have never had to work this hard to play 3 sets of volleyball”…I knew something was wrong. No, it wasn’t just because I have always been a bit “curvaceous,” it was something more.

As I struggled through the rest of our volleyball season and a couple more months of aches, pains, and shortness of breath I knew that I had to listen to my body, and my mother (don’t tell her I said that), and take myself to the doctor. Friends and family started noticing a significant decrease in my level of activity tolerance as did I, and of course everyone’s first thought was “gotta get the weight off,” and/or “gotta get back to the gym and work even harder.” Throughout the summer I made multiple visits to my PCP and ended up being prescribed 3 different inhalers and an allergy medication. None of which proved themselves helpful.

As the months passed and the holidays approached, it seemed as if I was becoming more in tune with my body and I had started to notice developing symptoms, such as a dry cough, consistent pain between my shoulder blades, persistent headaches, and tightness in my chest, things that I had never noticed or experienced before. I went Christmas shopping with my roommate Laura and ended up having to stop walking every 50 yards or so. Good thing that I started early, because the Christmas shopping ended up having to be done in shifts that year.

I went home for Christmas, and though I enjoyed the time that I got to spend with my family I continued to struggle with the cough, fatigue, back pain etc. I decided to go and see my home town doctor. These are nurses and doctors that have known me since I was a snotty nosed kid, literally! So the day after Christmas I went to visit the Tri-County Health Clinic and my nurse was none other than one of my best friends' mothers. She noticed that I was a bit short of breath when I walked in and she immediately put a pulse oximeter on my finger, (what a concept?!). She asked me to walk up and down the hall a couple of times and as I did so, I felt my heart beat faster, my lungs burn, and watched my O2 stats fall as low as 66% and my heartrate shoot up to 130 beats per minute. She approached me with a worried look on her face and asked “is your mother home?”

Next thing I knew, my parents were instructed to drive me to the emergency room 2 hours away. There was no going back to the house, no collecting any “necessities,” no “passing go, collect $200.” I felt like I was a hostage at my doctor’s office. AAAAHHHHH! How nervous was I? I had no idea what my medical team was thinking, all I could think is, “What is wrong with me? Could someone please tell me something?”

Hastings, Nebraska ER is where the “fun” began. When I speak of “fun” I mean the pokes, the prods, and the bazillion different tests to find out, “what in the world is going on” and of course the hundreds of questions that you have to answer over and over and over again. My parents stuck with me the whole time. It actually was kind of a nice vacation from my work with “at-risk” youth, you know…the service, relaxing in bed, having others being at YOUR beckon call. (Hey I take it where and when I can get it.) Even following the three days of tests there wasn’t a definite diagnosis. The only things that my family and I knew were that I had an enlarged heart, oh, and there was a hole in my heart but it wasn’t the cause of my SOB (interpreted – “shortness of breath”), and that is exactly what I thinking SOB (NOT interpreted – “shortness of breath”). It was suggested that I set up an appointment with a PH Specialist immediately.

I was discharged from the hospital on New Years day but got a couple of extra vacation days due to the ice storms that had pounded Nebraska as the New year rolled in. (I will try and include pictures of the storm somewhere on my page). Moving on, I returned to my home town and there my family and I sat and discussed our options for treatment. I had the option to move home to Nebraska and see a specialist in Lincoln, or low and behold, after some research I found that University of Colorado Hospital had a program specific to these symptoms right there in Denver. I love Colorado and though living in Nebraska wouldn’t take me that far away, for once in my life I was starting to settle down, had a huge support network of friends, lived in a house that I loved, and family wasn’t too far away, so I returned to Colorado with a prescheduled appointment with Dr. David Badesch, “my hero,” (must be stated in the high voice – melodrama) and we started the whole process over again, meeting my new treatment team, the tests, and the questions.

On February 7th, 2007, I was officially diagnosed with Primary (idiopathic) Pulmonary Hypertension. Dr. Badesch and his team asked me to be a part of multiple research studies and I was honored to say “yes.” (Anything to support PH research). I was placed on oxygen 24/7, Coumadin, and have been taking 10mg of the recently FDA approved study drug, Ambrisentan/Letairis. He advised me to get in touch with local support groups and so I did, almost immediately. I have been attending both the Denver and Colorado Springs support groups here in Colorado. Honestly, of all of the assistance that I have been offered, the support groups have made the most difference in my life. I don’t know what I would have done without the individuals, the support, and the guidance that the Southern Colorado Pulmonary Hypertension Support Group has offered me. It has been a year since I first started attending this support group and have developed very close and supportive relationships there. They are like a second family to me.

Knowing now, that I am the youngest attendee at this meeting and recognizing the physical handicaps that this disease has placed on so many, I try to put my youth, energy, and abilities to good use. I have made it my personal mission to do all that I can to support research on PH. Through the Pulmonary Hypertension Association, I educate myself on advances in medicine that have been made to maintain and manage this disease and distribute this information to individuals, companies, and medical professionals, (including my former doctor who misdiagnosed me for almost a year), to educate and empower them in their practice. I made myself a part of the Planning Group for Colorado’s first PH fundraising event, a Tuscan Gala, in October. I started attending planning meetings for this very purposeful event. I sent out a letter to friends, family, and co-workers to ask for their support by giving of themselves a monetary donation to PHA and/or a gift of their time and talents to be shared at our fundraiser. I personally worked on a Tuscan themed cross stitch (thanks grandma!) to put up for auction at the Gala and many of my friends donated their musical and artistic talents to this cause.

Also within this last year, I have become an active member of the Pulmonary Hypertension Association. I attended PHA’s 8th biennial conference “A Journey of Hope and Discovery,” in Houston, TX in June to learn more about PH and to observe the advances that have been made in regards to slowing the progression of this disease. This conference occurs every two years and was jam packed with valuable medical information, but it also offered, what I feel, is an equally important aspect…the opportunity to connect with others and share tips on how to live a “PHenomenal” life while managing PH. I met up face to face with many of the folks that I had chatted with online, in the months prior. I took advantage of the medically led sessions for patients and families, several patient/family-led sessions, support group meetings, and volunteered “behind the scenes” as needed.

We, as members of PHA and other Support Groups, have now been challenged to go out in the community and not only educate others on this complex health problem, formerly defined as a “chronic and incurable disease with a poor survival rate,” but also to gather generous donations for continued research on the new treatments available which will significantly prolong the life of many. Whether we like it or not, people with rare conditions such as PH must rely on the kindness of others for support and there are many generous hearts out there, it is just a matter of finding the right ones. If I can do it so can you. Good Luck in your personal “Journey of Hope and Discovery” and I look forward to sharing my future stories and knowledge with you all.

Believe in the voice of your Dreams,

Lindsay R. Collins (daydreamerlc/Lindz)