Jodi Berry - phaware® interview 505

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.

I’m Jodi Berry. My connection to pulmonary hypertension is that I was diagnosed on January 27th, 1997. I’ve now been living with it half my life. I’m now 54, so it’s been a ride. If I think back now, I probably had it for about a year before I said anything to anyone. I was 27. I played baseball, I golfed, I skied. I did all the things that a 27-year-old should do. I was having fun. All of a sudden, running to first base was like a chore. I was fainting at home. We had a new puppy and I’d bend over to feed her and then stand up and be like, “Whoa, head spin,” and pass out.
 
I went to my family doctor, and she was great, actually. She sent me to a lung specialist right away and started doing testing. I started passing out again. My lung specialist at the time, he wasn’t a pulmonary hypertension specialist. He sent me to emergency one morning and that was it. That was in January of 1997. I spent three weeks in the hospital while they diagnosed me. Sounds like I was diagnosed quickly, which I think I was. But hindsight, I should have said something sooner. I just thought I was out of shape. I was hitting the gym more and doing all these things, and none of that was helping.
 
In the hospital, I had a right heart catheter in for two-and-a-half weeks. I was in the hospital in intensive care with a right heart catheter in my heart. They would try different medications. They would check my pressures in my right side of my heart while they tried putting saline through, while on different drugs. So, that was like, “Oh, okay, that was a bit shocking.” At 27 years old, you’re all of a sudden tied to a ICU bed. Then, they tried Adalat, which is a high blood pressure medication for the left side of your heart. I responded well to it instantly. That got me out of the hospital pretty quick. So, thank goodness.
 
For someone to tell me that I had idiopathic pulmonary hypertension, I was like, “What?” This was the dawn of the internet, too, so you start Googling something and nothing came up. I put myself on a list that was in the states. It was a death sentence. You had three to five years to live max, and that’s what they told me. So, I was like, “Okay, I guess this is the end.” It was very isolating, I guess. Because like I said, you went on the internet and found nothing, or just the worst-case scenarios. There was these little chat boards of people saying they had it, don’t know where to go. I put my name on this list, and you put your phone number on it. This was the dawn of the internet, so you did that. All of a sudden, I was getting phone calls asking for information. People were asking me what I knew, and I was like, “Oh, I know nothing.”
 
But so far so good. I’m on this one drug and a blood thinner. That was really all they put me on. It was something for the swelling, a LASIK. All my friends thought I was dying. My boyfriend at the time, he thought this was it. My family all came rushing to the hospital, thinking we better hold vigil, because this could be it. Really, nobody knew much more.
 
We had a doctor in Calgary and he knew of pulmonary hypertension. He was my second opinion, I guess, at the time. He said, “Well, there’s some breakthroughs coming. We got a doctor in San Diego studying it, and he’s coming back. I’ll let you talk to him when he comes in a few years.” It’s like, “A few years? Who’s got a few years when they just gave me three to five if that?” Kind of thing. I was thinking, “Who’s going to get me a lung transplant?” All these things. It was mind-boggling, but you got to remain positive, too. That is a family motto. We SWAG everything — scientific wild-ass guess. Just go with the flow. That’s what SWAG stands for in our family. We just go with it and keep living each day as you would. I went back to work and they were great. They put a couch in my office, in case I needed a nap. I had a great community around me, and I still do. Still all the same friends, still all the same people.
 
The doctor that was in San Diego was Dr. Doug Helmerson. He came back and he had all these new drugs to try. But I was on Adalat for 16 years, and then it just stopped working well for me. So, I’m on four oral therapies. As the years went by, thinking I’m on this drug and life’s pretty good. The worst, terrible thing that happens is you’re really pink. Your skin goes pink, because all the blood vessels are dilated. Your feet swell up. You got ham hocks all the time. Not a real attractive look. But I got married. I changed my regime. Now, I golf, I garden. No high-impact sports or anything like that. I was working full-time all the time and everything was pretty good. You’re thinking, “Well, this is manageable.”
 
Then, my lung doctor just said, “Oh, I think we should pass you on to a pulmonary hypertension clinic.” That was at a different hospital in my city. Thank goodness I have access. I’m in this major center, so I have access to that. Things started to get, by year 16, which nobody thought anybody was making it to, or I’d have two lung transplants by then. You never know, right? All of a sudden, these new drugs were coming. I was like, “Let’s try on this one.” I was willing and able to try any of them. I just think that people have to hope for that, because there are so many new things coming around the corner, which is going to be amazing. But for some people, it’s too late, unfortunately.
 
It wasn’t too far down the road when I did get to meet a few patients that had pulmonary hypertension, whether it be idiopathic my variety, or they had it from another situation from blood clots or something like that. Actually, it started with somebody else from my doctor’s office was diagnosed with pulmonary hypertension, which the chances are zero from that happening. Then, I got a call from a girl in Calgary as well. She phoned me and she said, “Listen.” This probably was two years after I’d been diagnosed, and she was about my age. She said, “I’ve been diagnosed with pulmonary hypertension. I don’t know what to do.” We started talking and then we formed a little group. We would have little luncheons or appetizer parties. It was mostly women unfortunately, and we didn’t have any children at that time come, but there was about six of us. Six in one major center is quite a few, I thought. I’m thinking I was the only one.
 
We would meet and talk, but it phased out, too. Because then, once people knew and they settled down from their diagnosis, they weren’t as scared, and seeing other people manage through it and live through it. But a lot of people do not respond well to the oral medications, and they’re dragging their oxygen tanks, and that’s depressing for even a patient like myself to see all the time. I’m not a counselor to help these people through their trauma, as well. It’s good and bad in a sense, you know, to meet other people.
 
I think I heard about PHA Canada. I think it was through my clinic at the hospital. The PH nurse mentioned it. I’ve followed them online. I’m not a Facebook girl, but I follow them on Instagram and such, and go to their website, before Instagram, of course. But I just was living my life. I wasn’t searching for a group. I wasn’t searching for more answers, because I was my own advocate. I would ask my doctor, I’d ask my nurse, “I want the results.” I wanted to get on a drug trial. “I want to do this, I want to do that.” So, my doctors trusted me with my questions, because I wasn’t frantic. I wasn’t scared anymore. I just wanted the facts.
 
I did try for three clinical trials. I’ve only been admitted to one. The first one I didn’t get accepted, because I had breast cancer, and I wasn’t five years out from my breast cancer, being clean from breast cancer. Then, the second one, I walked too far on my walk test, so I didn’t qualify. That was a kick in the pants. I hadn’t been that mad in a long time at something. I was like, “So, I just had to put a rock in my shoe and walk slower and I could have gone on this drug trial?”
 
Then, the third one, I don’t even remember the name of it, but I did qualify. It was a phase two, so they’d already tested it on healthy people. There was 90 of us around the world that they tried it on. It was a tablet form. 33% would’ve been on the placebo, 33% would’ve been on one dose, and 33% would’ve been on a higher dose. I did find out I was on the placebo for the first 12 weeks, I should say.
 
Then, they did put me on the actual drug. I still don’t know what dose that was. It did cause some gastral issues. I wasn’t feeling lousy, but then they canceled the whole trial for everyone. They found there was no benefit whatsoever. There was nothing detrimental either, so they just canceled the whole thing. I got a call one day and said, “Stop taking those pills.” I said, “Okay, I’ll bring them back.”
 
In the interim, there was testing. Every week, I had to do something. I was getting an echo and coming to do a walk test at the hospital. I had a starting right heart catheter, one in the middle, one at the end. There was a lot of things that did happen. They also followed you very closely, so they could adjust my other PH drugs at the same time, to see if I needed to go up or down on something just with my pressures on my heart and stuff while I was doing this test. That was interesting as well, just to see the minutiae they could change just slightly with all this testing I was doing. They could see am I changing from day to day, from month to month. I think, it was about six, seven months I was on it.
 
To be involved in a drug trial, you have to know all the facts. You got to read the fine print, because you want to make sure you can quit at any time. If you’re feeling lousy, obviously it’s not for you. You should stop instantly. There are so many benefits for it. Because a lot of them, if I’m on it and I am finding a benefit, but it doesn’t get Health Canada-approved, or covered by your insurance or your province, I’m going to be on it forever, because the company is now giving me the compassionate prescription. So, there is that. 
 
Some of these drugs can be $60,000 a year. I’m on four oral treatments, so that doesn’t come cheap. But I don’t pay anything out of pocket. So, there is that financial concern and benefit. As well, I just think if I could help find the cure to this ding-busted disease that was never on my radar, I would love to be on the forefront of that.
 
I think for anyone new, who’s newly diagnosed, it’s so very scary. Why are they still telling people three to five years to live? Like, hey, maybe you should maybe mention that there are some long-term survivors here. And to be an advocate. If you can’t be your own advocate, then you need someone to go with you to every appointment, to write down things, to journal it. Because you go in and you have so many questions every time you go. I still have so many questions. Like, “So, if I get a lung transplant, are those lungs going to have pulmonary hypertension one day, because I have the gene?” They explained to me, “No, probably not, because they have a different DNA.” I was like, “Okay, that’s off the list. I don’t have to worry about that at night.”
 
I think writing things down and going in and asking the questions to your doctor. If they don’t give you the right answers, maybe that doctor isn’t the best doctor for you. I know there are some people that are so remote that they can’t change doctors, or talk to somebody else. But there’s nurses that can help, and they have more practical solutions for some problem. Or if you have a male doctor and you want to ask your female nurse something, there’s always a solution to what’s eating at your brain and causing you to stay up at night, which the stress of it all can get to you, for sure.
 
I think everyone with pulmonary hypertension should stay quite active, either physically, socially, and mentally. I do puzzles, I read books. I go for walks with my dogs, on a flat surface. No hills. I do yoga, which was a clinical trial I was on. There was a group of us all with pulmonary hypertension, that I had an instructor that taught us just exercises for pulmonary hypertension, to help stretch our chests. Activity is one of the best things we can do. Motion is lotion. You got to keep moving or things freeze up, including your brain. It makes your mood better. I think that really helps, getting outdoors. I know it’s hard, especially in our climate in the winter. Because for people, especially people with oxygen, when it’s -30 degrees Celsius, that’s not anybody’s best temperature. But I think staying active with your community, helping somebody else always takes your mind off your troubles, as well. 
 
My name is Jodi Berry, and I’m aware that I’m rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada