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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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Stacie Friend - phaware® interview 245

May 10, 2019

Pulmonary hypertension patient and lung transplant recipient, Stacie Friend discusses her road to diagnosis and recovery.

Hi, I'm Stacie Friend and I was a PH patient and now a lung transplant.

I got sick in 2009 and I was severely overweight and I finally was diagnosed in 2013. By that time, I was so sick that I was on six liters of oxygen and couldn't walk across the floor and was in right heart failure already. I was put on Adcirca and had some relief. As I was put on Adcirca, I went in the hospital for water retention and lost 40 pounds in like four days. I decided to start losing weight at the same time. So, I kept it up. I lost 160 pounds now.

They added OPSUMIT and then they added Remodulin IV. I had good results as far as shortness of breath and that type of thing. I went off the oxygen. I did rehab. I did really well, but my heart never responded to any of the medications.

So, about a year and a half ago, my same doctor who also runs the transplant clinic in Cleveland said, “it's time for you to look at transplant.” He recommended the transplant. I went through the process. I was listed in June and got my lungs in July, which is unheard of for one month. I was really blessed.

I had a lot of complications, but it's something I extremely recommend that you try. At least get the information if all else to decide whether it's something you want for you or not.

My surgery actually went really well. I was out of the hospital in 10 days. I did fantastic. I did a six-minute walk afterwards. It was the best I had done in forever. But then I started getting infections. I had four different infections in a row and they never did figure out what they were from. I also then had rejection and it was treated and it's gone. I ended up with blood clots due to side effects of the rejection medication. I had TVTs in my legs and my arms and I had a PE in my chest. All of that is healed now and I'm good to go.

Then about two months later, I ended up with an aortic dissection right as it's coming out of my heart. I went in for additional surgery and they said I wasn't going to make it for this. That recovery has been harder than my lung transplant.

It's overwhelming when you're sick. The everyday struggle is really hard, but as you start to get better, and transplant is not easy. It's not for sissies. It's very hard. But it's an amazing journey. It's life altering and awe inspiring. As you get better and feel better, it's just unbelievable how wonderful it can be. It's just an amazing process.

PH awareness is so important because for my example, in 2009 I had gone to the doctor all the time telling them there's something wrong. And I wasn't diagnosed until 2013. I may not have needed a lung transplant if I had been diagnosed early enough to get on the right drugs at the right time.

I have a girlfriend who I think has PH, but she can't get anybody to talk to her. We need to get doctors to know. I've been into ER rooms and they want to disconnect my pump. We need to have the doctors and patients know. I say I have pulmonary hypertension and they say, “I have hypertension too.” Get a specialist. You really need a PH specialist. That is the most important thing you can do.

I'm Stacie Friend and I’m aware that I’m rare.

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