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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!

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Amanda Spurling Transcript

Mar 31, 2017

Amanda Spurling lives with a very rare disease called pulmonary hypertension. She frequently VLOGs to raise PH awareness and discusses how PH impacts her life as a young mother.

My name is Amanda Spurling and I am from Fort Lauderdale, Florida.

I am a patient. I have idiopathic pulmonary hypertension and I was diagnosed in November 2012. I was diagnosed six months post partum from having my second son. I was not having any symptoms during my pregnancy. It was a beautiful pregnancy. I walked two miles without any problems being nine months pregnant and then right after delivery, I started getting regular systemic high blood pressure. I had echos. The doctors wanted to see if there was any damage being done to my heart because of the regular high blood pressure and nothing happened. I was having spikes of regular systemic high blood pressure.

Then on October 1st, 2012, my husband found me completely lifeless on our front porch. He had to give me CPR and I was rushed to the emergency room and in the emergency room, the doctor discharged me the same day basically saying that I had anxiety and that I needed to go see a counselor. I just knew something else was going on because I was having this tightness in my chest and I couldn't breathe. I just knew something bigger was going on.

I went to my cardiologist and they did a stress test, which I was not even able to do a minute of and an echo which showed that my right ventricle was enlarged. They set me up for a heart catheterization and it came back that my pulmonary pressure was 65. I woke up from having my heart cath and the doctor said, "It is what we thought. You have pulmonary hypertension."

Again, when you hear hypertension you think, "Okay. I could just, you know, I could take some medication for it. It's not that big of a deal," and then I started to Google it and realizing that this was something that was going to be a lifelong progressive disease and that I was going to have to make some changes in my life - big changes.

My husband and I have two boys and we had always thought we would have a third baby and so being told after having pulmonary hypertension that the mortality rate would be too great for me to take on another pregnancy, it was just crushing. One of the big changes was not being told you will never be able to have another baby of your own and not being able to even play with the children that I have now. This is my thinking back in 2012. I wasn't able to chase them, I wasn't able to run, I wasn't able to do a lot of things because I couldn't even walk to the bathroom.

I went from being a completely normal person to being a 27 year old with a handicapped sticker. I have a lot of people that, they'll look at me and they see I'm wearing yoga pants and I don't have tubes coming out of my body. They just look at me like, "Oh, yeah right. Like, that person really is just probably parking there because she's too lazy to walk, you know, three more car lengths down." I do get those glares. I get the stares. I can tell people are on the verge of saying something and I'm actually just waiting for it. It's been four years and I'm still waiting for it.

I'm doing great. I can chase my children with the best of them. My child did something in our backyard and I don't know, I think it was harmful. Something happened and I went from our kitchen to running across the yard and I got to him and instead of being like, "What are you doing?" I looked at myself and I thought, "Oh my gosh, I just ran. I ran for the first time in two years." That was my “aha” like I can be a person living normally with PAH.

I try to tell people on the patient end of it, I always see young women such as myself. Late 20s, early 30s and again, they've Google it, and they're like, "I have two years to live." I try to push that those are old statistics and life is what you make of it. There's new therapies out right now so don't just give in to the Google research that's 20 years old probably. I try to give hope when there is none. On the physician's end, I've been to hospitals before where an ER doctor has looked at me and said in amazement, just nodded his head like, "Thank you for coming." I was the first PH person he had ever seen, so I try to raise awareness in both ends with the patients and with physicians.

Really right now, along with Facebook live, I'm also doing YouTube and right now I'm doing the gestational surrogacy since I do have PH and am not able to carry, but I do touch on topics such as PH and what I can do now and raise awareness to people. So [I’m] just trying to give advice in areas that I know as a patient. A lot of times I do have things that I will say that you should ask your doctor, so it's enriching to see that we were able to build hope where there was no hope. 

My name is Amanda Spurling and I'm aware that I'm rare.

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