I’m Aware That I’m Rare: Kristen Wieneke

Kristen Wieneke is a long term pulmonary hypertension survivor. She was diagnosed in 2003 during open heart surgery to repair an ASD. She discusses the stigma that comes with rare disease, the importance of clinical trials and why patients must be their own advocate.

Transcript:

I’m Kristen Wieneke, and I’m a pulmonary hypertension patient. I was diagnosed with pulmonary hypertension back in 2003 during open heart surgery to repair an ASD. They confirmed the pulmonary hypertension during surgery when I wasn’t breathing on my own and had to be left on the ventilator for several more hours. They didn’t expect me to live more than five years after that, but here it is almost 15 years later, and I’m still here.

It’s been a very emotional roller coaster from the beginning. I was told if I didn’t take care of myself and I didn’t do everything that the doctors told me I was going to do, I wasn’t going to live. So I tried to follow their advice and do what I felt was best for me. Which I didn’t always follow the doctor’s advice. I had to veer off and learn about my own body and learn about how I responded to the medication and how maybe IV wasn’t best for me, because of all of the emotional things that go along with that. To be able to work with a pump that you have attached to you and an open line directly into your heart is not something you want to show everybody. And then when they do see it, and they think, “Wow. What’s wrong with you?” And then they’re afraid me, afraid of the line, afraid because that looks scary coming right out of your skin.

To get past all of that stigma, those people that didn’t understand, which brings more awareness. People have to understand that I have this disease, yes. But I’m still a person. I still have feelings. You still want to be included in events and things, and they don’t want to include you because they’re afraid you’re going to break and you’re going to pass out or I’m going to have a heart attack or I’m going to … I don’t know what they thought. But it’s very emotional. And then every year that went by, and I was still doing okay. And I tried this medication and I tried that new trial. And I was grateful for every birthday that I had and I was still able to function. And I’m still able to function without being on continuous oxygen. Just at night. So I’m grateful for that.

I had to change my mindset that I’m not going to worry about what other people think. And I have to just focus on myself. And if I feel okay, I will go out and participate. If I don’t, then I just tell them, “I’m just going to stay home today.” I’m okay with that. I’ve learned that that’s okay to do. I’ve learned that it’s okay to say no. That’s my coping, that I felt like I used to have to participate in everything. But when I stopped working, that was probably one of the best things I could have done for myself. I’ve accepted the disease, and I’m able to just relax. And I can be home now and I don’t get as sad, because I know it’s just today. Tomorrow might be different. So I can take it day by day. I live day by day. I don’t try to think about the future because that’s too overwhelming. I don’t know what the future brings. I only know what today has. I can only focus on right now.

I wish I would have known that having this disease doesn’t mean that I’m going to die. Fifteen years ago when I was diagnosed, it was very serious and there wasn’t many treatments for it. We only had a handful, four or five possible drugs that were available. Now we have 14. Back then, it was very grim. And I wish I would have known that it’s going to get better. It’s not a death sentence. Pulmonary hypertension is no longer a death sentence. There’s treatments available. There’s support available. There’s a number of people that can help you. And I wish I would have been able to find them when I was diagnosed.

You have to be your own advocate. You have to know your body. Do your research on the medications. Just because your doctor says I want to put you on this drug, you have to know why that drug and not this other drug might be better for you. There’s support. There’s help out there. There’s people you can talk to. If you don’t get along with your doctor, find a doctor you can talk to. Find somebody that will listen to you. This disease is so individual that every person and every patient is different. So what might be true for one person isn’t going to be true for another person. Everybody has to find out what is good for them. And a doctor that listens to you and knows that your body is your body and not theirs to play with I think is very important. I’ve gone through a few doctors to find somebody that listens.

Clinical trials is extremely important because it helps doctors, it helps the pharmaceutical companies learn about what works and what doesn’t work. Without the trials, we wouldn’t have new drugs. We wouldn’t have the tweaking of the drugs. I encourage all patients to participate in clinical trials. It’s rewarding to know that you’re participating in something that can help somebody else.

I do a PH walk in Milwaukee. I encourage everybody in the Milwaukee area to come and participate in my event. I also have a support group that I like to help people and advocate for them, as well. I encourage new patients to go to a support group. I didn’t have that when I was diagnosed. I actually was laughed at when I was going to my first support group meeting because I was only 30 years old, and there was a woman there who was a lot older than me, probably twice my age who has been living with pulmonary hypertension for 10, maybe 15 years. She was very active. She was on IV drug, used oxygen. And her pulmonary pressures were double what mine were. She looked at me and saw that I just had open heart surgery and said, “Oh, you’re going to be fine. My pressures are this and I’m fine. I do all this stuff.”

I was 30 years old. A month ago, I was fine. I didn’t have this disease. I didn’t have anything. I was working full time. I had just bought a house. Now all of a sudden, I have this disease. My whole life is changed. My world was shattered. And she was blowing me off like I was a joke. There was no support at all. It was awful.

I love to see other people in their own elements talking about living with the disease. Essentially, we’re all just trying to live with it. And to hear other people that I can relate to is empowering and encouraging to know that there’s other people trying to live the same way I am because this disease is so unknown.

My name is Kristen Wieneke and I’m aware that I’m rare.

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