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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Lane Benningfield - phaware® interview #126

Feb 6, 2018

Lane Benningfield is a pulmonary hypertension patient from Charlotte, North Carolina. In this episode he talks about the power of a positive mindset. Lane is an active member of the PH Men’s PHight Club, an online support group for male PH patients and male caregivers. He discusses how members of the PHight Club can apply for an exclusive scholarship to attend the 2018 International Pulmonary Hypertension Conference taking place June 29-July 1 in Orlando, Florida. Learn more about this PHight Club fund at: phaware.global/phightclub.

My name is Lane Benningfield. I'm 29 years old. I'm originally from Dallas, Texas. It will be five years in May is when I was diagnosed [with pulmonary hypertension].

When I was first diagnosed, I was pretty much asymptomatic. Didn't really have a lot of symptoms other than I started coughing up blood. This happened two or three times. I had gone to the ER each time, and they kept sending me home thinking that I just scratched my esophagus. This was right after I had graduated college is when I was diagnosed. Just starting my life, and this hit me out of nowhere. I had two or three ER visits within about a year. After that, it took about a couple weeks for me to be fully diagnosed.

I lived in Charlotte, North Carolina, for 21 years. I saw a specialist there, and went to get a second opinion just based off of the test results and everything like that. Went up to Duke Medical Center, and they were able to do a bunch of tests. I was in the hospital 11 days when I was first diagnosed and they were trying to figure out what we needed to do. That's when we came up with a game plan to put me on the therapy I'm on now.

When I first diagnosed, I really didn't know how to feel. That was kind of the hardest part. Being stuck in a hospital bed, being limited to doing everything, you kind of just got to go with the flow. It's almost like, those 11 days while there, I blocked out all the emotions and just tried to figure out what we needed to do to come up with the best game plan. That was still very, very heartbreaking for me because I knew. I just had a feeling that my life was about to change drastically.

My biggest thing is mindset. I have never once said that I'm going to let this disease beat me. I've always told every doctor ever since I've gotten diagnose. Whether they look at me crazy or not, I tell them that I will beat this one day. I continue to keep that mindset. It keeps me moving. It keeps me active. It allows me to do things that I never thought I'd be able to do with a condition like pulmonary hypertension.

I first started getting involved in Facebook Groups after my mom. She's my number one. She's my biggest supporter. And she runs the support group in Charlotte, North Carolina. She actually was the one who introduced me to a couple different groups on Facebook, and the PH Men’s PHight Club was of them. I was actually able to connect with everybody at the last conference, with Kevin Lee Burger, David Grady, who ran the PHight Club at the time. Just got acclimated. It was my goal to get more involved. Obviously, because men with PH, it's a very small number, and we deal with a lot of different issues on a daily basis. My goal was to get involved. See how many members we could get. Just try and promote PH awareness the best we can from a man's standpoint.

The best part about this group is everything is from a man's point of view. We talk about a lot of different things that upset us. But on the flip side of that, we deal with the same issues that a lot of people who have been diagnosed with PH also deal with. Anything from medical bills to getting insurance and stuff worked out, and how frustrating that can be. Just the daily frustrations of being tired some days and just not wanting to get out of bed and not wanting to do things. 

It's great to have a group where you can go and you can post and vet, and within a couple minutes, you have six or seven people who are interacting with you to help you out or give you advice or keep you moving. That's the best thing that Men's PHight Club has done for me is giving me an outlet to release some frustrations sometimes when I don't really have anybody else to talk to.

I had this big pharmaceutical company. I'm on a couple of their medications. To be completely honest, a couple of them here, these medications have saved my life. Have given me a great quality of life from having pulmonary hypertension. Actually at last year's conference, I ended up going up and introducing myself to the president of the company as well as his right hand man. Just gave them my story, and let them know how thankful I was that they've got a medication that's able to save my life. We kind of connected there. They had heard about the Men's PHight Club, and I was able to share my story. Had an incredible response to it as well as my involvement in the Men's PHight Club. What they actually did was they awarded us scholarship money in order to allow us to help out with the PHight Club and send some of these guys to their first conference.

What this opportunity allowed me to do with this scholarship money that this pharmaceutical company was able to give to us. I've had the opportunity to work with phaware, and we're figuring out ways to disseminate this money to figure out how many people we can get to this conference this year. So we are extremely excited about this opportunity that we're able to provide for everybody.

I want to urge anybody who is a member of the Men's PH PHight Club on Facebook. Please go to phaware.global/phightclub, and find out more information about this scholarship money. We're going to be doing a lot of exciting things. I want everybody who can be involved to be involved, because it's certainly a great opportunity, and I'm so excited about it.

Dealing with PH and you're thinking of giving up. Don't give up. There are so many exciting things and so many new things that are on the horizon that I think are going to help out the PH community as a whole. My biggest piece of advice that I can give to anybody who's struggling with this on a daily basis is to just keep a positive mindset. That your mindset is everything. I promise you. I wouldn't be where I am today if I didn't have a positive mindset. Just believe that you can beat this disease, and just look forward to all the exciting things to come.

My name is Lane Benningfield, and I'm aware that I'm rare.

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