Patti Flanagan - phaware® interview 291

Oct 18, 2019

PH and Scleroderma patient, Patricia Flanagan discusses the bumpy roller coaster ride that led to her diagnosis and life with left heart disease.

My name is Patti Flanagan. I'm from Virginia, and I have pulmonary hypertension, due to diastolic heart failure.

I do remember hearing the word pulmonary hypertension for the first time. I thought, "What was that?" I was sitting in an office with a cardiologist, and he was reviewing my stress echo, and I just was like, "I'm healthy." I knew I was out of shape. I knew something was wrong, but I guess I never really asked the questions I should of. Like, "Why was I less tolerance for activities? Why was I out of breath going up stairs? Why could I do something in January and come June, that wasn't anywhere possible?" Until you're thrown into a situation like that, you just keep moving, because that's life.

I landed in the ER, because I was having chest pains for the first time ever, and I thought, "Am I having a reaction to the thyroid cancer treatments that I just had a few weeks ago?" So, I went to the ER, and they recommended that I have a stress echo, sooner than later. Back then, I didn't really pay much attention to medical. I just kind of, "No news is good news," kind of philosophy. I really wasn't a very proactive person. I ate well. I exercised. I stayed active. I tried to lose weight. I come from a family of nine, we’re all overweight.

You get into that rut where you just accept things, but when I had the chest pain that brought things very forefront. After I had the stress echocardiogram, my oxygen dropped, and even then I didn't really put it together. I mean I asked [the doctor], "Why are we stopping? I can do more." Because that's who I am. I'm a go getter. I could be out of breath, but I see the end over there, and I'm like, I could do another five minutes. So, it really didn't dawn on me what or why she felt I needed to stop. I knew that I saw that my oxygen dropped to 84. All the machines are right there.

I don't see myself as sick, because if I did then that would be giving in, and I can't do that. I have to charge through and fight. Since finding out that I have had pulmonary hypertension, it's been six years, but seems like a lifetime. I just walked out of that ER, and landed myself on a roller coaster, and I've been riding it ever since.

I couldn't really do that cope feeling in getting adjusted, until I could get what was happening more identified, because the cardiologist diagnosed me with pulmonary hypertension, and sent me to a pulmonologist. That initial testing process was grueling. I had the pulmonologist send me to the cardiologist, then the cardiologist would send me right back to the pulmonologist. At one point, was feeling like I was in a tug of war between the cardiologist, and the pulmonologist, and I think that might've been what sent me to the online support groups, because I knew it wasn't right, and I was getting really tired of going back and forth, and before I was very laid back in my health care. At this point, I became very proactive, very research based, because I felt comfort in trying to understand all of what was happening.

All the while, these doctors are sending me back and forth each month. I felt like something I could do in January, by October, I couldn't. I'll give you an example. In January, our daughter got married. I could dance all night, no chest pain, no shortness of breath, nothing. Fast forward. By June, I was stopping walking upstairs. By August, by the time I got into the pulmonologist, I went to my daughter's best friend's wedding, and I had to sit down after maybe one or two songs, and I'm thinking "This is not right." Another two months later, and I couldn't even do one song in dancing. So, it was a definite progression in terms of symptomatic.

I did go to those online support groups. They were very helpful when I had thyroid cancer, and had to go through that whole process to get to coping with it. Initially it was "I beat cancer. I can beat anything." And then it's, "How do you beat it? How do you adapt?" For me, I think the biggest part of it is I just kind of refer to everything as I'm on a roller coaster, and whether I was sick or not, I'd be on this roller coaster. Everybody has good days, bad days, and man do we all hate those drops. That philosophy stays true whether you're sick or not. I just kind of caught on to that. During these two years of trying to figure out what was causing my pulmonary hypertension, even once [my doctor] identified it being caused by the left heart. There were other things that showed those red flags.

They discovered I had a rare antibody, part of the myositis family, and it's called the Ku. Not a lot of doctors know about it. It's very rare for it to be associated with scleroderma, but that is where my new track on my rollercoaster landed me. Then the CPET, which is short for cardiopulmonary exercise test, that was required that I have. It also showed that I had a mixed pulmonary hypertension. So, in 2013 it went from just, "pulmonary venous hypertension or left heart failure." To, "Now you have pulmonary arterial, and, or pulmonary lung, because of the scleroderma." That was shown on the CPET. It's showed various different numbers that the doctors look for. So, that identified a little bit more of what was going on, and why I wasn't such a great candidate of just one type. That kind of threw everybody off a little bit. Myself as well.

When you're riding a roller coaster, you get bumpy sometimes, and you just kind of accept it. I mean it's being in the world of being a zebra, and I just happened to be a very complicated one. I think the biggest thing is accept it. That roller coaster ride is going to be there. I think back on my life over the last six years, and it's been bumpy, a lot of changes. From just needing overnight oxygen, to now being on oxygen 24 seven. You have to give yourself time. You'll have to find ways to adapt and adjust, and keep moving, because that's what life is. When one challenge comes, take a breath, sit back, give yourself time, because it's not always easy, and it can be scary. For me, I found comfort in knowledge. Some people that's too much for them. You have to kind of find ways in yourself, as to what works for you.

Another thing that worked for me was having a positive attitude. I think it made a huge impact on dealing with such a complicated life. I know one doctor told my husband, "That any other patient with my profile would not present the same, and my attitude, and my fight, to live and laugh." I mean a little laughter goes a long way. I just found that getting upset wasn't really going to help. And actually I found it made it worse. So, for me, accepting the change. Knowing, "Yeah, life is not how it was before, but that doesn't make it bad. It just makes it different." Again, like I had said earlier, "Whether you're sick or not, you're going to have those moments that are fast and bumpy in life, and those unexpected drops."

I think having family, or something, whatever it is for you to just kind of give yourself that, "I can do it moment." If that means, "I made it to the bathroom." Then that's it. The next day, "Hey, made it to the kitchen." Or one day you might make it to the mailbox. Start with those small goals, and then it doesn't look as scary, because you just did something you couldn't do three days ago. I know others, from those support groups, they kind of give you that inspiration.

For me, I found looking back didn't help. Living is meant for the presence. You can't control the future. So, you might as well enjoy the present. I kind of keep that philosophy. We're a strong family. My husband and I, we moved to deal with everything. We moved to be closer to our grandchildren, to be closer to our children. My husband retired early. It was a big change. Living, you know, on this roller coaster being a complicated zebra. Life is going to change. You might as well make the best of it.

I'm Patricia Flanagan, and I'm aware that I'm rare.

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