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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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Stephanie Bachelder - phaware® interview 276

Aug 27, 2019

Pulmonary Hypertension patient Stephanie Bachelder on being diagnosed with a terminal illness, the power of combination therapy and why she feels she is no longer dying of her disease, but living with it.  

My name is Stephanie Bachelder and I am a pulmonary arterial hypertension patient.

For probably about 15 years, I was symptomatic, having shortness of breath, swelling of the legs. I was passing out. I had extremely high blood pressure. I was very obese, morbidly obese, and I just kept being told by my doctor that I was fat and lazy, and had asthma, and to go exercise.

I wasn't sent to any kind of specialist or anything like that and it wasn't until I was in complete respiratory, right heart, and kidney failure that the doctors finally looked at my case and started doing some tests, which included the echocardiogram and then the right-heart catheterization, which confirmed the diagnosis. It only took me about a month to be diagnosed once I was that sick, but again, 15 years, symptomatic with no diagnosis.

When I was first diagnosed, I went home and I looked up the information and I was horrified. I was resigned that it was a death sentence for me and that there was nothing that I could do to get better. Even with the medication that my doctor had put me on that was supposed to help me breathe better, I didn't see myself living much longer.

Well, the first therapy wasn't the right therapy and unfortunately I progressed from stage three to end stage. So again, I was already in right heart failure. I was in stage three end diagnosis, but stage four by 2013, they told me to get my affairs in order that I probably wasn't going to see the end of that year. So at that point my doctor had tried a different therapy, two therapies, a combination therapy. So probably within six months of starting that therapy, I was off the oxygen. I was blowing out of the water, the six minute walk test. I walked like 300 meters further than I had in the previous walk test six months before.

I got off the oxygen. At that point as I was getting better, I was able to lose a little bit of weight. I had been involved in a weight loss program, but they kept telling me that they would not do the surgery on me to have the gastric surgery, because I was too sick and I'd never make it through the surgery. My pressures came down enough on that combination therapy that they did the gastric sleeve surgery and I've lost 250 pounds, which has further, absolutely further improved my condition. I am now on a triple therapy. I live a normal life. My pressures went from in the hundreds to down in the low thirties now. I think it's important to first of all get diagnosed and get the right kind of meds. There's 14+ approved treatments out there now, whereas there wasn't several years ago and people are living longer with the right treatment and each case is individual.

I can't say that somebody would be able to go through exactly the same steps that I and my doctor did and have the same results. So it's an individual case by case thing to be able to find that right medication, that right combination. Some people have other conditions (I mean I had multiple morbidities, co-morbidities, they call them), and I still live with health problems, but I live a better life than I lived previously. I'm grateful for the little things and I don't sweat the big things anymore, because I know that I've been through something very, very big and I was fortunate enough to make it through it.

The questions that I get and the advice that I then give after these questions are about the side effects with the medicines. I tell people that those side effects can be very, very, very difficult to live with on a daily basis. Especially if you're living with a family, you have a family to take care of, you have a job that you're working. It's hard. It's very hard to deal with joint pain and jaw pain and diarrhea. You have to carry an extra change of clothes with you sometimes.

I mean you have to make adjustments, but I live every day managing my symptoms when I have them with over the counter medicines. I've been fortunate enough that I can do that. I tell people I bullied my way through those side effects and the titrations up on the medications to go up to the highest dose that they wanted me on. Like I said, still have the side effects, but they're more manageable now and you have to stick with it. Absolutely have to stick with it. I tell people that I'm no longer dying of my disease. I'm living with it.

My name is Stephanie Bachelder and I am aware that I'm rare.