I’m Aware That I’m Rare: Nola Martin (252)

The phaware® interview

Pulmonary Hypertension and Scleroderma patient Nola Martin discusses her road to diagnosis and the importance of support groups and seeing a PH specialist.

My name is Nola Martin and I’m from Philadelphia, PA, and my journey with PH started about nine years ago.

I was actually at work exercising one day. I was so excited. We moved to a new building. They put a gym in for us, and I’m on the treadmill for not even two minutes, and I could literally feel my feet swelling in my sneakers, and I’m going, “Well, this is weird.” I was having a lot of shortness of breath, but I kept making up excuses. “If I diet and exercise more. Maybe if I lose a little weight, I’ll feel a little better.”

I was eating one orange a day. That was my meal for the entire day and it felt like I had a full course meal. Of course, I didn’t share this information with my doctor right away because, in my mind, I’m going, “Oh, diet and exercise more.” But how much more can you diet when you’re only eating an orange a day?

I got up to walk to the printer which was less than a foot from my desk, and it literally felt like all the oxygen was sucked out of the room. I called my doctor at the University of Penn. She’s like, “I think you need to be seen right away. Are you able to drive? Can you come in?” I’m like, “Sure, I can come in.” But I didn’t tell her I was at work which was an hour away, but I drove to the hospital and when I got in, they put a pulse ox on me and they’re like, “Okay, let’s see if you can walk around this desk.”

I took literally five or six steps, and all these alarms started going off. The next thing I know, they’re putting oxygen on me. They put me in a wheelchair. And she’s like, “We’re not even going to wait for transport.” They just wheeled me into the emergency room.

And that’s when I start hearing things like pulmonary hypertension, and I’m getting an echocardiogram and oh, you’ll need a right heart catheterization. I didn’t understand any of this stuff at all. But that began my journey with pulmonary hypertension. And from that, I found out mine is due to scleroderma. And in addition to the scleroderma, then it’s like, “Well, now you also have congestive heart failure” and I have GERD real bad, and I have Raynaud’s and all of these other things.

At first, when you first hear this and you go on the internet … most people want to google things and find out, because Google was the answer for everything. And I went onto Google and searched, and it was like oh, well you may have two to three years to live and you go through the whole depression thing. I said, “Wait, just let me talk to the doctors. Get my appointment, see what’s going on.”

I discovered through that support groups, which was a wonderful thing because I got to talk to people who understood what I was going through. It’s hard when you’re trying to explain something to somebody else when you truly don’t understand it yourself. I learned a lot of information about support groups, about making sure that you are at a hospital or center or have a doctor that understands pulmonary hypertension and that can treat you.

Because everybody has their own history and their story with pulmonary hypertension, and it may not be the same as yours. It’s very important, first of all, to make sure you get a good doctor, you get good treatment going, and that you learn the disease yourself and learn how it affects you personally.

It’s definitely a life-altering illness, and what I’ve learned through my journey with PH … and I always explain that to people. I say, “When I tell my story, it’s my story,” because my story could be different from the person that’s next to me. But with my story with pulmonary hypertension, I was a person that was taking care of everybody. I’m doing everything for everybody, and I had to learn to let people help me, because something as simple as making the bed, vacuuming the floor, taking a shower, those things became very difficult for me. Because in the shower, the steam affects you. So while you’re in there and the steam is forming, it’s difficult to breathe. So I actually had a 50 foot hose on my oxygen [machine] at home that I would have to take into the shower with me, because it was difficult to breathe just from the steam in the shower.

Making the bed, I would get exhausted and couldn’t understand why can’t I change the sheets on my bed without feeling like I’m going to pass out. And with the Raynaud’s aspect of having it also, simple things like going in the supermarket. You can’t go in the frozen food aisle without your fingers turning colors on you, going from the red, white, and blue, which, of course, my family got a kick out of it. They was like, “Hey, do the trick thing when your fingers turn white.”

Also, just doing simple things like walking. Sometimes walking across a flat surface, I didn’t have any issues, but take into effect where you have to walk up the stairs. If I’m at home doing laundry and I have to carry my laundry from the basement up to the first floor, and then I got to take it up to the second floor, well, I would have to stop and rest when I get to the second floor because I couldn’t climb another flight of steps without feeling winded.

That’s a very scary feeling. I think that’s one of the scariest experience I have is when you can’t breathe and all the oxygen is sucked out of the room and what I would do is have a panic attack, of course, after that, because instead of using what I learned was try to calm down, take slow, deep breaths, breathing in and out, you’ll be okay. I panic. I hyperventilated. It’s different things that you have to learn with dealing with this illness. Plus I had the scleroderma, too, so that’s two illnesses that I’m trying to learn about and work and see how the two interact together.

Through my experience with this also, I became a support group leader, a co-support group leader. The first thing I tell any newly diagnosed patient is be truthful with your doctor, because it all started with the primary care doctor, because they cannot get the proper help you need if you’re not truthful with them and you don’t tell them everything. I always tell them make sure your doctor has all the knowledge that you are going through so they can get you the help you need.

Once they do that, make sure that you are at an approved PH center to get the proper treatment. If it’s not working for you, don’t be afraid to ask questions. Don’t be afraid to go to your doctor and say, “Listen, I know you say that I need to do this or take this medicine, but this isn’t working for me. I’m still experiencing this.” So you have to be honest with them, and you have to be your own greatest advocate.

Because I tell people nobody knows your body better than you. Doctors have all of these degrees, and yes, we have some of the best doctors out here working on PAH, but if you aren’t honest and tell them this is what’s going on with me, this is not working. I know you say this should be happening, but it’s not, you have to be honest. Speak up for yourself. Advocate for yourself. Make sure you’re getting the proper care that you need for you.

Come to a support group meeting, because they are so beneficial. You have other people there like you who understand what you’re going through. They can relate to you when other folks can’t, because a big misconception with PH is I have people look at me all the time and go, “Well, you don’t look sick. Maybe if you diet or exercise, you could do this, you could do that.”

Nine years ago when I was diagnosed, I was oxygen-dependent 24/7. I could not sit here and have this conversation with you without my oxygen on. But because I have such a great team and I was honest with them, I let them know what was working, what wasn’t working. We had to try different regimens, that finally we got one that seems to be working that I don’t have to be on my oxygen like that anymore. Everybody has their own journey with it, but you can get help. There is support out there for you.

My name is Nola Martin and I’m a PH patient and I’m aware that I am rare.

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