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Bethany Barnes' Fundraiser:

Thirsting for a Cure 2016

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Bethany's Photo
Bethany's Photo
Bethany Barnes

THE STORY:

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My Story: I was diagnosed with PH shortly after having my son, Jensen, in late 2012. My husband, Chris, and I were very surprised, to say the least. I was 30 at the time and had never had any real health concerns. Growing up, I was diagnosed with asthma, but I never used the inhalers because they didn't do anything. I would always tell my doctors that, but there was never any further action. I was able to do normal activities, but I was always the kid in gym class that did not run the mile, but rather jogged and walked it. During my pregnancy, things got much worse. Prior to pregnancy, I worked our regularly and I had planned to continue that as long as possible. By week 6 of my pregnancy I was no longer comfortable exercising even at a low level, so I stopped. By week 16, I started taking the elevator at work to go up one floor to my desk. I told my OB about the shortness of breath at each appt, but she said it was normal for a pregnant women to experience it. I made it through to deliver my son at full term. The delivery was very easy, but he ended up being much smaller than expected. He was 6lb 12 oz; we were expecting an 8 or 9 lb baby based on our sizes and family history. We found out later that he was small because of my low oxygen. So far there are no other negative consequences of my illness on him. While I was in the hospital for his birth, my oxygen levels were low and I was still very short of breath. The nurses were concerned, but I convinced them to let me leave. A couple of days later I ended up in the ER after a short walk up a hill nearly made me faint. As soon as I got to the ER, they checked my O2 and found that it was in the low 70s; they were very concerned. They ran some tests and were not able to determine the problem. They wanted to admit me for more testing, but I did not want to stay. I had a 5 day old baby that I had to go home with. They were able to convince me to stay by explaining that I might not live very long if I do not stay. I was in the hospital for 5 days and they ran a lot of tests including a right heart cath. It showed that I had severe PH, but they did not know the cause. They let me go home on oxygen with plans to see the local specialist soon. I was referred to the Intermountain Health PAH clinic with Dr. Elliot and Dr. Brown. They ran their own set of tests and determined that my PH was caused by a congenital heart defect. I have an atrioventricular septal defect (AVSD) which is several holes in my heart that allow blood to flow from the high pressure left side to the low pressure right side. Over time, the extra blood has increased the pressure on the right side of my heart and cause the PH. In my case, the PH could get better, or at least not worse, if we could fix the holes in my heart. Unfortunately, that can not be done until the pressure is lowered. In March 2013, I was put on Remodulin in an attempt to hit the problem hard on the first try so that surgery could happen sooner. In November 2013, the Remodulin had not lowered my pressures, so the doctors added Adcirca. At my latest checkup in November 2014, Opsumit was added after my pressures still failed to drop. Hopefully, over time I will be able to have heart surgery to repair the holes. The medicines have helped me feel much better. I am able to work full time and take care of my little boy. He is full of energy and I have to keep up. I'm asking for donations for the PHA in order to support research efforts. There has been a lot of great developments lately for PH in the form of new drugs. We need to continue the great work. Selfishly, I want to find new and improved medicines to treat PH. I appreciate your help! Every donation, big or small, helps.

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Donor Comments

Better than Steve

Better than Steve

DONATION: $50

3 years ago

Kendra Rideout

Kendra Rideout

DONATION: $50

Blue & gold 3 years ago