Patient story

Lindsay Collins

For the past three years, Lindsay Collins has had to change her life. It wasn't because of something she planned; it wasn't anything that she could control. Lindsay was diagnosed with Primary (Idiopathic) Pulmonary Hypertension. This disease has changed her life more than a young person can imagine, but through it all Lindsay has stayed optimistic and has found that her health problems have opened up a new avenue in life. One that has connected her to another family and one that she wants to share in order to educated people about a disease that is hard, not only on the person that it has invaded but also their family and friends.

LINDSAY: June 18, 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. Beeeaaaaauuuuuuuuuutiful! Bump‘N Grind passes, sets. Misfits prepare, get low, ready for the kill, here it comes, 'KAPOW,' perfect up. Side out! Now, I’m up to serve, the Misfits captain. I bounce the volleyball in preparation for the serve. 1..2..3.. I serve, ACE! Misfits win it! It was a great win, but as I thought to myself "I never had to work this hard to play three sets of volleyball," I knew something was wrong. No, it wasn’t just because I have always been a bit 'curvaceous.' I knew it was something more.

Lindsay is a recognizable face to many in the community and the area. She is the daughter of Doug and Judy Collins and the granddaughter of Norma and Lyle Steele and Ilene Collins.

Lindsay began school in Edison, and then, in fourth grade, entered school at Arapahoe. Through her high school years, Lindsay participated in sports, but her true calling was in the drama department. Following graduation from Arapahoe High in 1996, she went off to Midland Lutheran College in Fremont.

In 2000, Lindsay became a college graduate with a Bachelor of Arts in Human Services. Her next step in life took her to Colorado. She lived and worked in Fort Collins for two years, then moved to Denver in 2002. Lindsay worked at Children’s Hospital for a year and a half, then began her time at Jefferson Hills in August of 2003. Jefferson Hills is a residential treatment center for at-risk adolescents who have been placed by the courts or taken from their homes for criminal mischief, substance abuse, abuse, neglect and more.

Lindsay struggled through the rest of the volleyball season. After a few more months of aches, pains and shortness of breath, she knew that she needed to listen to her body and her mother...and visit the doctor.

LINDSAY: Friends and family started noticing a significant decrease in my level of activity tolerance as did I (I couldn’t keep up with my parents when they came out to visit), and of course everyone’s first thought was, "'gotta get that weight off' and 'gotta get back to the gym and work even harder.'"

Throughout the summer, Lindsay made multiple visits to her primary care provider and was prescribed three different inhalers and an allergy medication. None of them proved helpful.

The holidays approached and Lindsay became more in tune with her body. She began noticing other developing symptoms, such as a dry cough, consistent pain between her shoulder blades, persistent headaches and tightness in her chest - symptoms she had never noticed or experienced before.

LINDSAY: 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.

Lindsay came home for Christmas and, though she enjoyed the time she spent with family, she continued to struggle with cough, fatigue, back pain and other symptoms. She decided to visit her home-town doctor where the nurses and doctors have known her since she was a snotty nosed kid, literally. :) The day after Christmas, she went to the Arapahoe Medical Clinic. The nurse, one of her best friends’ mothers, noticed she was a bit short of breath when she walked and immediately placed a pulse oximeter on her finger. Lindsay was instructed to walk up and down the hall of couple of times.

LINDSAY: I felt my heart beat faster; my lungs started to burn and watched my O2 stats fall as low as 66% and my heart rate shoot up to 130 beats per minute.

The nurse approached Lindsay with a worried look on her face and asked if her mother was home. Her parents were instructed to drive Lindsay to an emergency room two hours away.

LINDSAY: 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. 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, anything?"

The family was off to Mary Lanning Hospital in Hastings, where Lindsay says the "fun" began. She endured pokes, prods, being put in a cubical that looked like a phone booth and was told to "suck it in and hold it, hold it, hold it, now let it out and push, push, push." They preformed a "bazillion different tests," said Lindsay, just to find what was going on. The doctors asked hundreds of questions that she answered over and over.

LINDSAY: I was wired up to look like a space alien and told to sleep, I had slime put on an instrument that looked like a microphone rubbed on my chest (echocardiogram) and bubbles of saline injected into my heart, I mean, what a whole new world. You name it and it was done.

Lindsay’s parents were with her the whole time. She thought of it as a vacation from work with "at-risk" youth because she had people at her beck and call. "I take it where I can get it," said Lindsay. Following three days of tests, there wasn’t a definite diagnosis. The only thing that she and her family knew was that she had an enlarged heart. It was suggested that she set up an appointment with a PH (pulmonary hypertension) specialist immediately.

After being discharged from the hospital on New Year’s Day 2007 and a couple of extra days at home due to Nebraska ice storms, Lindsay and her family discussed her options for treatment. She had the option to move home to Nebraska and see a specialist in Lincoln but, after some research, Lindsay found that the University of Colorado Hospital has a program specifically for these symptoms in Denver.

LINDSAY: 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 had family wasn’t too far away. I returned to Colorado with a pre-scheduled appointment with Dr. David Badesch, "my hero" (must be stated in the high melodrama voice), and we started the whole process over again, meeting my new treatment team, the tests and the questions.

On February 7th, 2007, Lindsay was officially diagnosed with Primary (Idiopathic) Pulmonary Hypertension. Dr. Badesch and his team asked Lindsay to be part of multiple research studies. Lindsay was honored to say yes, "anything to support PH research." Lindsay was placed on oxygen 24/7, Coumadin and started taking the recently-FDA-approved study drug, Ambrisentan/Letairis.

LINDSAY: Dr. Badesch advised me to get in touch with local support groups and so I did, almost immediately. I started attending both the Denver and Colorado Springs support groups and registered online with the Pulmonary Hypertension Association. Honestly, of all the assistance that has been offered, the support groups and PHA 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 they have offered. It has been two and a half years since I first started attending these groups and have developed very close and supportive relationships at both. They are like a second family to me.

Lindsay knew that she was the youngest in attendance at the support meetings. Recognizing the physical handicaps that the disease had placed on so many, she put her youth, energy and abilities to good use. It became her personal mission to do all that she could to support research on PH and become an active member of the Pulmonary Hypertension Association.

LINDSAY: I attended PHA’s 8th Biennial Conference, A Journey of Hope and Discovery, in Houston in June of 2008 to learn more about PH and to observe the advances made in regards to slowing the progression of this disease.

The conference was jam-packed with valuable medical information, but it also offered what Lindsay felt was an equally important aspect: the opportunity to connect with others and share tips on how to live a "PHenomenal" life while managing PH. Lindsay met face to face with many that she had been chatting with online prior to the conference. She also took advantage of the medical sessions for patients and families and she worked as a volunteer behind the scenes as was needed.

Through the Pulmonary Hypertension Association, Lindsay has educated herself on advances in medicine and she has been able to maintain and manage the disease. She distributes this information to individuals, companies and medical professionals (including her former doctor who misdiagnosed her for almost a year) to educate and empower them. She was a part of the planning group for Colorado’s first PH fundraiser event, a Tuscan Gala in October of 2008. Lindsay began attending planning meetings for this "very purposeful event." She sent letters to friends, family, and co-workers asking 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 the fund raiser. Lindsay worked on a Tuscan themed cross stitch ("thanks, grandma!") for the auction at the gala while many of her friends donated their musical and artistic talents to this cause. "It turned out to be a big success," said Lindsay.

As for Lindsay’s personal progression of PH, she landed herself in the hospital in April this year, carrying approximately 20 pounds of fluid, which was a side effect of Letairis. She was on IV Lasix for 10 days and, "boy, I tell you what, I didn’t wander far from a restroom for those first few days," she said.

Following that little vacation, she was placed on oral Lasix, a low sodium diet and fluid restriction (48 ounces of liquid every 24 hours, to be exact). Due to the continued progression of her PH, she has chosen to pursue the most aggressive route of therapy known to treat PH in order to improve her everyday functioning: Flolan. It is an intravenous medication that dilates blood vessels, prevents the smooth muscle cells in their walls from contracting and reduces the stickiness of circulating platelets which might otherwise "sludge" up the vessel. It also helps the right side of her heart to better pump blood through the lungs. Flolan is given by continuous intravenous infusion through a permanent catheter placed in one of the large veins going in to the heart.

"So, that is the next adventure in my 'Journey of Hope and Discovery,'" said Lindsay.

LINDSAY: The Pulmonary Hypertension Association is all about caring, sharing and making folks aware of what is out there in that big, scary world of PH and maybe, just maybe, someday finding a cure. Some of us can live normal lives and some of us cannot. The effects can be devastating or they can be inspiring. I’ve been there, done that and don’t want to go there again as far as the devastating aspect of this goes. But the inspiring part is what keeps me going - the hope for a cure. I have committed to educating others on this complex health problem, formerly defined as a 'chronic and incurable disease with a poor survival rate.' We will continue research on the new treatments coming available, which will significantly prolong the lives of many. Whether we like it or not, people with rare conditions such as PH must rely on the kindness of others for support. There are many generous hearts out here; it is just a matter of finding the right ones.

Good luck to all in your personal "Journey of Hope and Discovery" and whatever that may consist of. I look forward to sharing my future stories and knowledge with you.

Believe in the voice of your dreams.

Lindsay R. Collins

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.