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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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Debbie Crandall Transcript

Jan 17, 2017

 

PH patient, Debbie Crandall discusses the power of positivity, why pulmonary hypertension awareness is so important and why she is an eternal optimist.

My name is Debbie Crandall and I'm from Cape Coral, Florida.

I had liver issues. I didn't know. Thought I had bronchitis for two days. Went to the hospital to get antibiotics and they kept me. Turns out I was full of fluid. My liver decided it was done, but where the cirrhosis is ... This is the way they explained it, caused pulmonary hypertension (PH). I was diagnosed April/May of 2013.

I had never heard of pulmonary hypertension, didn't know what it was. I was like “OK, so give me a pill, I'll get rid of it and that'll be that.” Anyway make a long story short, they gave me a couple months to live and when I found out because they had told my husband before me, and he said, "Don't tell her." When I found out, needless to say within ... I was on six liters of oxygen at home, I was at ten on the hospital. Needless to say by, that was in October 1st, by December I was off oxygen during the day and I started pulmonary rehab and I haven't quit since.

It's my new normal. I get winded more so than what I used to. I push through a lot of it. Let's say I'm walking with friends, I'll slow down a little bit but I just keep going. I keep a pulse oximeter with me so if I feel I'm not getting the correct oxygen; I check my oxygen all the time.

They want to give me a liver transplant. They think that may cure this. We shall see. I'm doing more, as far as going to the gym, I'm doing more exercise. I'm getting on an elliptical, I never even got on an elliptical before. I'm able to do it and my oxygen stays up. Like I say, give me two months to live, I'll go kicking and screaming. No, I'm not going anywhere.

I was thinking, you know when I got home from the hospital, I was thinking, okay I'm not going to get up, I'm not going to ... My husband was literally waiting on me, hand and foot, making my dinner, whatever. I didn't want to push it because I was afraid it was going to be like a flu. You know how you get a flu back if you push yourself? For a few weeks there, I was just not going to do a thing. I'm going to listen to the doctors. Lliterally walking from my bedroom, and my bedroom is right outside the family room, I'd have to stop right at my door, then to go to the kitchen, I'd have to stop again and hold on the counter. That's with six liters of oxygen.

Then when I found out when I went to the doctor, the day my grandson was born, and they told me that. I was like oh no, no, no. No, no, no. I started exercising ... not exercising, exercising. Going back and forth to my kitchen, that's how I started. Going further and going further. By December, I'm at pulmonary rehab, doing it and getting on a treadmill. Doing, you know, arm exercises and stuff. 

I think it's important; keep moving. Don't give up. And attitude. Attitude is my biggest thing, I'm the eternal optimist. I'm not going anywhere. I refuse. That's just me. PH makes you deal with your mortality, I mean, you always know something could happen but I totally believe attitude is 75% of the battle. I see these people that are on antidepressants for it and all this stuff. I was like… no.

Yeah, I have my moments. I'm not Superwoman. I have my moments where it's like mm-mm (negative). Like in December when I started feeling bad again and my oxygen was going down. I thought, oh here we go again, it scared me to death, but I pushed through it. I'm good now. My friends now, when I mention it to them, when they ask me what's going on with me, they know nothing of it unless they're a nurse. Even some of the nurses, I mean I've had to explain what I know about it. I know enough but I don't sit behind a computer because that'll depress me. I don't read every little thing on what could happen, what can happen. I've had to do a lot of explaining to people as to what it is. They think pulmonary hypertension, they're thinking high blood pressure. They don't know, and neither did I. When they told me pulmonary hypertension, I was like okay, so? What is that? 

There needs to be more awareness, period. So people know, this is not anything to do with high blood pressure. It's a lot worse. We need more research. We need more money. It's not like cancer but it's incurable. It's something that's not going away. What I've noticed, more people than you know, have it. I start realizing they're diagnosing people right and left. I think that's because misdiagnosis. Doctors need to be a little more aware too. When they see an issue that coincides with pulmonary hypertension, they need to test for it. I just happened to be in the hospital and they were trying to figure out what was going on with me. They did a heart cath. That's the only reason. Nobody expected my liver to bounce back.

I'm Debbie Crandall and I'm aware that I'm rare.

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