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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!

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Uli Campbell - phaware® interview 415

May 16, 2023

In this episode, newly diagnosed pulmonary arterial hypertension patient, Uli Cambell, discuss her rollercoaster of emotions and how educating herself about PH has given her hope in navigating and advocating for her rare disease.

My name is Uli Campbell. I currently reside in Maricopa, Arizona. I am originally from Thailand. I moved to the United States when I was about five years old, and I am living with pulmonary arterial hypertension. So it was about October of 2021 and I was helping a friend move from Arizona to Tennessee that I first noticed my symptoms. I was having shortness of breath. I didn't realize that that was what was going on. I realized that I couldn't do anything physically that I was able to do previously, like a month ago.

It came on really quickly, so I would just rest. I might have to rest, even take a little nap anywhere from 30 minutes to an hour. Sometimes I would just really have to just go to sleep and then reset and try again the following day. I'd feel a tightness in my chest area, and so I would just remove my bra and it would subside a little bit. As it's hot in Arizona, I would just take a cool shower and that would seem to alleviate some of my symptoms, but I was struggling for breath and not even knowing it.

Just around October of 2021, I was driving and I fell asleep at the wheel. Woke up and I was in the other lane. I was able to come to. I swerved back. I was concerned. I got home, but I just thought I was just extremely tired as well as having very bad seasonal asthma allergies, which I've suffered from for many years. Then about December of 2021, I was dragged by my dog when he was chasing another dog. I fell while he was on a leash, cut my right leg. I was treating that just antibiotic and first aid care at home, and it kept swelling. That wasn't healing. Then my right leg was starting to get swollen and there was another little cut that I had that was swollen up and it was leaking fluid.

I called for telehealth and the lady said, "No, honey, I can't treat you. You have to go to the urgent care." When they did my vitals and stuff, the doctor came in and said, "Just please put on your shoes and you need to go to the emergency immediately." When I was in the emergency room, they tested me for COVID. They just took my vitals. My blood pressure was about 195/177 when I got in there. They ran some tests and they told me that I had pulmonary hypertension. I had no clue what was going on. I stayed there where they just stabilized me. I started getting a little bit better. My blood pressure was going down, but I was on oxygen and doing breathing treatments. Then they said they're going to have to move me to the larger hospital in Mesa, Arizona, basically where they could do the right heart catheterization on me. That's where they confirmed that I had pulmonary arterial hypertension.

After receiving my diagnosis I had pulmonary arterial hypertension, it just came together for me; my shortness of breath, my lack of energy, falling asleep at the wheel. After I was diagnosed, I still didn't have any idea what was going on with my body. It was explained that it's not curable and all that stuff did not mean anything to me as far as what the condition is, survival rate, how it's treated, et cetera, and so forth. I didn't understand anything until I just started researching on my own. I took that as I wasn't going to live very long.

Part of how I learned about pulmonary arterial hypertension is through my cousin who's a nurse. She said, "You can survive this, but I'm sorry you have this." Because she actually works in the cardiology department, she was able to see me a little bit through this, and then I did a little research on the side when I was in the hospital.

I'm still very confused at that time about it and about pathways of how this happens. I was concerned about drug toxins due to that. So one of the drugs that could have caused my pulmonary arterial hypertension, which hasn't been proven or anything like that, was that I used to take phentermine as a diet pill, and that is one of the substance that could lead to this. I've taken that about maybe 10, 12 years ago for a minute. They're now researching that this could have something to do with my PH because I don't have it through genetics or through other causes. But now research shows that that could be a link to pulmonary arterial hypertension.

The last year has been a rollercoaster of emotions, a lot of depression and anxiety. So I checked into a wellness center because I just couldn't cope anymore. I have been getting better. Things have been looking up for me, and then I was diagnosed with this, so it just threw me back. It hit me really hard and I'm now in therapy.

I'm going to say it's isolating for me because I have to do oxygen at night. My family, my two sons are about an hour to an hour and a half away from where I live. It's a three-hour round trip and I'm just not able to spur of the moment, "Yeah, I stay the night somewhere." I require my oxygen. I have rough days where I just isolate and I just completely shut down from the world just to protect myself. I'm very conscious of people coughing around me and being sick because I did catch COVID. I made it through that.

A lot of things I'm just not able to do anymore, which has just caused a different drive in me. Now I feel like I want to be a voice for pulmonary arterial hypertension because I've learned a lot about it, but there's more to be learned by everybody in this community. This is my first year of fully having pulmonary hypertension, so it's new to me how cold and hot has affected me and what affects me more. I'm really actually a social butterfly, so this is off where I have always lived. I've always gone out shopping. I don't want to do any of that stuff anymore. I don't prefer crowds anymore because I don't want to catch anything. I'm so immune compromised right now. It is isolating. It's a very lonely disease.

I feel better about my disorder as far as my chance of survival and how my life can be and live to the fullest with this disorder. So I'm trying to live my best life with that because I was really didn't think I would be here, that I would be alive when I was first diagnosed. It was just like, "Ah, you've got this. Sorry girl," blah, blah, blah. It's been challenging to just get my medications and stuff through insurance and all the requirements.

But yes, I feel better about it. Educating myself about pulmonary hypertension has helped me in the fact that there is hope. I've spent a lot of time on the internet talking to other people that have pulmonary hypertension through social groups and forums. Or just really any articles about it. Getting all that knowledge and putting it to how it's going to help me. I feel much better about my prognosis than I did at the beginning. I mean, I didn't really think that I would be here. I'm my own advocate. I can't ask anyone else to do this for me. I have to advocate for myself. I've researched how I can deal with this and at the end of the day, every day I live like I'm doing everything I want to. I'm living like I'm dying each day and I just want to make sure that it's the most enjoyable day for myself, which could be selfish, but I don't believe it is. Got to take care of yourself.

My name is Uli Campbell and I'm aware that I'm rare.

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