Nola Martin - phaware® interview 471

Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. Despite the limitations, she has a better quality of life and encourages others to be their own advocates.

Learn even more about Nola and PAH at www.OutnumberPAH.com. #SclerodermaAwarenessMonth #SayScleroderma @scleroderma @srfcure

My name is Nola Martin. I'm from Philadelphia. I was diagnosed with pulmonary arterial hypertension about 14 years ago. When I was first diagnosed, I had no idea where pulmonary hypertension was, had never heard of it. I thought it was high blood pressure, and my doctors said, "No, it's kind of different. Whereas with this one, the blood vessels in your lungs are constricted." But what I can tell people about pulmonary hypertension is, it is definitely a lifestyle adjustment.

How I was diagnosed was, I had been an avid walker. I love to walk. I noticed one day at work I tried to walk two feet to go to the printer, and it felt like all the oxygen had been sucked out of the room. I didn't know what was going on. Of course, it was a panic attack. I called my primary care doctor. She said, "Okay, are you able to come in?" Sure, I can come in. I didn't tell her I was an hour away. I had no idea how severe it was. I tend to rationalize things away, because looking back now, there were so many telltale signs of what was going on. For instance, at that time, I had gained a whole lot of weight, but my meals were one orange a day. For some reason, I don't know why it was an orange. But that's all I could eat was one orange a day. But I was still constantly gaining weight. Simple tasks like taking a shower, walking up the steps, trying to make my bed, became very difficult for me. I would get short-winded.

When I finally went in to see my primary care doctor, they put a pulse oximeter on me and said, "Well, let me see if you can walk around the nurse's desk what would happen." I took a couple of steps. The next thing I knew, it was like the oxygen really got sucked out of the room. They put me into a wheelchair and whisked me over to the ER. They were like, "Your oxygen level plummeted to 85. Your heart rate went up to 125 and was rising." That was the first time, once I was admitted, that I learned what pulmonary hypertension was.

My diagnosis came from a right heart catheter. I had so many echocardiograms, too. I was told at that time that I had so much fluid, too, around my heart. They were like, "We don't even know how you walked in here." I went in the hospital weighing 213 pounds and came out weighing about 180. They were like, "That's how much fluid you had on you." I take diuretics daily because the fluid will come back. You have to watch salt intake. I've never been one that was big on salt anyway, so that wasn't the issue for me.

My biggest issue was I was limited to the amount of fluid intake. I was only allowed to have 64 ounces of fluid a day. That included anything that had water in it, like fruit. That included ice cubes. In the summertime, I can go through 64 ounces of water in the morning. So, having to limit my fluid intake, that was the biggest obstacle for me or so I thought until later on when it came to trying to do those chores. Like I said, something simple as taking a shower became very difficult because of the steam in the shower. It would make it difficult for me to breathe. I was on two liters of oxygen that I had to wear 24 hours a day.

I never knew how strenuous vacuuming could be, but that would also make my oxygen level plummet. Trying to make my bed, just getting dressed sometimes in the morning, in your mind, even with an illness like this, you just go on about doing your daily routine and you think it's fine. Okay, I can do this. But the moment I would start to move, that's when my oxygen levels would plummet, and my heart rate would increase.

Dealing with the physical aspects, I'm very independent. I'm used to doing everything myself. Knowing that I had to ask for help, that was hard for me, because I've always been the caregiver in the family. I've always been the one helping out other people. I don't ask other people to help me. For me, going to the grocery store wasn't an option by myself anymore because first of all, I had to ride around in that cart. I couldn't walk around and carry the oxygen tank with me. For me, to have to ride in that cart mentally, it was like, no, this is for people who's really, really sick. Even though I was that person who was really, really sick, in my mind, I wasn't ready to accept it.

When you hear a diagnosis that you're unfamiliar with and then you're being told all of these things that you can't do anymore, all these things that you can't eat, and there's so many limitations put on you, mentally, it's very trying. You go from being angry like, well, what did I do? I do the right thing. I help people. Why did this happen to me? Or did I do something that caused this? Because no one else in my family had this, it is like, well, it had to be me. I had to be doing something wrong, because no one else in my family that I knew of had this illness but me.

You get judged by the way you look, because with pulmonary hypertension isn't something that they can see what is going on in the inside of your body, you're judged by what they can see on the outside of your body. When people look at you and they see the weight gain and the different things going on, the first thing they say, "Well, diet and exercise. If you diet and exercise, you'll be fine." Well, it wasn't just the weight gain, it was also the fatigue. It was you get exhausted from getting up in the morning and taking a shower. I could wake up and say, "Oh, I feel great." In my mind, I'm going to do this, this, and this, but by the time I go and brush my teeth and take a shower, I'm exhausted. I don't feel like doing anything.

Sometimes plans with family and friends had to be canceled, Then you stop getting invited to certain things because it's, "Well you're not going to show up anyway, so we just stopped inviting you." That gets to you, too, mentally because it's like, well, wow, now I feel like I'm letting people down or people don't want to be around me. Or it's a thing where it's, "Oh well, she's going to be sick, and nobody wants to be around a sick person that we have to watch what we say and what we do." It's like, well you smoke, but you can't be around me smoking. I'm wearing oxygen. There's a lot physically and mentally that comes along with this that you just have to make an adjustment for.

Joining a support group helped me with that because one of the things that is explained to you in a support group and that I also had to wind up explaining to one of my doctors is, you may know medicine, but I know my body. I tell everyone, you have to fight for yourself. I've had that conversation with my lung doctor. I don't care how many letters you may have behind your name, this is my body. I've had it all my life. I know the changes that are going on. I know what's working and what's not working. If you're giving me something or telling me my body should be doing this but it's not doing that, I have to stand up and fight for myself. You only get this one body to work with and whatever happens to it, it's up to you to make sure that you speak up for yourself.

I had to learn to do that because I come from an era where the doctor is always right. If your doctor tells you this is wrong or you need to do this or take this, this is what you do. I had to learn that no, because this medicine you've given me, it's not working, or you're telling me I should be walking more or I should be doing this, and my body is responding differently than what you're telling me. I always tell everyone, even in our support groups, when I tell my story, my story is my story. PH affects everyone differently. You know your body. If something isn't right, you have to stand up for yourself and let them know. Don't let anyone silence your voice when it comes to your health or anything else.

My self-advocacy started three years into my diagnosis with pulmonary hypertension. I was taking a medication that I was on for about three years, and it stopped working. I felt as though it stopped working because even though I was following my routine of what I was supposed to do, taking the medicine, eating the foods that I'm supposed to eat, keeping my water intake down, no salt, things like that, I was starting to gain the weight again. I was starting to be tired more, have more fatigue. My iron level had dropped. My iron was so low, I was getting IV infusions, and it wasn't raising it any. I said, "Something is wrong," and my doctor at the time felt as though it wasn't. He's like, "No, the medicines that you're on, it's been working all this time." I said, "Yeah, but I'm not a textbook case. Medicines don't always work. They do stop working. Your body sometimes adjusts to the medicine that they take, and it may not work anymore. I feel as though that's the case for me."

He didn't want to listen, so I said, "Listen. Well, we're at a standstill right now. Either you're going to have to change, give me some more tests, do whatever you need to do, or else I just have to go somewhere else, but I physically know there is something wrong with my body, because it's telling me. I ignored it in the beginning when I was first diagnosed. I kept rationalizing away my symptoms I was having. I'm not doing that anymore."

Just at that time when we were going through that, I received a letter from the pharmaceutical company of the medicine I was taking. It said that if you have this symptom, this symptom, this symptom, that you should stop taking the medication. I had every single symptom on that list except low sperm count. I said, "I think if I was a male, I would've had the low sperm count."

So I took that to my doctor and I said, "This is what I received from the pharmaceutical company, and I'm having every last one of these symptoms on here." The low iron was one of them. I said, "You can see that I've been doing iron infusion and it's not working." Then from that, that's when we had more tests done. A new medication was induced. That's why I tell people, you have to fight for yourself. If you know that something is wrong with your body. Stick up for yourself.

I am still with that doctor. He loves me. I love him. We give each other little jabs every now and then, but I love him. I trust him now. He trusts me. He told me, "Nola, you are one rare patient." I said, "Well we all are. We have a rare disease. We're all rare patients." He said, "Well you're special because, boy, I tell you. You're the one that told me 'Doctor,' he was like, 'You say, 'You can't treat all patients the same. Everybody is not a textbook case.'" He said, "You drilled this and drilled that." He said, "I get it. Sometimes doctors know best, but I appreciate you sticking up for what you really believe. Something was wrong with you and you stuck with it." I'm like, "Well that's one thing you've learned about me."

So 13 years later, he told me I abandoned him for his nurse practitioner, because I see her more now, but I said, "Because you're more on the research side." But he's still my pulmonologist, and I really enjoy going to see him now.

My journey with PH today is a little different from what it was when I was first diagnosed years ago. For one, I'm no longer on oxygen, which is great. I enjoy the freedom of moving around without that. But I also have to still limit myself, because even though I'm no longer on it, and there may be days when I feel like, oh, I can do this, I can do that, it'll easily shut you down and let you know, okay, nope, I'm still here. You're doing too much today.

But what I also just found out from a test that I had is that I now have to take two medications for my pulmonary hypertension. I was just on one. They found that my lungs had a little scarring. It's moderate, as they call it. Now, I have an inhaler that I take along with my regular oral medication. I do find as time goes on, I'm getting more fatigued. I'm not as active as I used to be, which is hard to believe. I was so sick I could hardly move around, but in between those years, there were some good years where I was a little more active. I still can't master, though, walking in the sand on the beach. That's still challenging. I never realized how challenging it would be to do something as simple as that. But I can do my daily tasks. I just have to limit everything that I do and not try to do everything at once, but in stages. But I do have a better quality of life now than I had in the beginning.

I always tell everybody, be your own advocate. If you have any problems and you feel like you need a little encouragement, call me. I’ll help give you a little encouragement. I'm actually, co-president of the support group that we have at the hospital that I attend, so I enjoy it. I really do. Speaking to other people, talking to them about it. I can go on and on all day about PAH, but the only important thing I like to share is, remember, my story is my story. We're all different. PAH affects people differently. It also depends the other illnesses you may have, because I have scleroderma, as well. So like I said, my story is my story.

My name is Nola Martin, and I'm aware that I am rare.

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