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I'm Aware That I'm Rare: the phaware® podcast

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Wendy Jackson - phaware® interview 146

Apr 17, 2018

Wendy Jackson is a long term survivor of pulmonary hypertension. She was diagnosed with CTEPH 30 years ago. In this episode, Wendy discusses her road to diagnosis and her positive mindset, attributed to all the therapies available thanks to PH research.  

My name is Wendy Jackson, and I live in Dallas, Texas. I am a CTEPH patient, and have been for 30 years.

In 1985, it was suggested to me, at the age of 21, that I probably should get on birth control pills. After being on them for six months, I started feeling really bad, like I had the flu continually. Over the next year, I would go to doctor, after doctor, after doctor. Misdiagnosed, misdiagnosed, misdiagnosed, to the point where I probably visited every hospital in Dallas County at one point in my life.

Finally, I ended up with pneumonia. My middle brother had taken me to just a primary care doctor, because I couldn't function. I was really, really sick. My blood pressure had dropped really low. The doctor basically said, "You have pneumonia. I don't know what else you want me to do", and he said, "You can go home, or you can go to the emergency room." My brother said, "I'm going to take her to the emergency room."

So, he took me to the emergency room, and I ended up in the hospital. A pulmonary doctor came in because my oxygen levels were so low, and decided to do a chest x-ray. On that chest x-ray, he saw a baseball-sized blood clot in my lung. He's the one who basically saved my life, because he took the time basically to do a little bit more tests, besides saying, "Yeah, you have the flu."

From that, started a whole series of tests and doctors, and anything and everything you could think of, they ran on me. Determined that this blood clot needed to come out. They sent me to Medical City, and this was in 1987. I had open heart surgery to remove that blood clot from my lung. They thought, "Okay, we've got it, this is what's wrong with her", and they took the clot out and sewed me up.

Over a period of two weeks, I started feeling bad again, and basically what had happened is that I re-clotted again. So, over the course of a year, the pulmonary doctor that met me in Richardson, was my doctor, and he continued to care for me. During that time, he did research after research, and finally found the Pulmonary Clinic at UCSD, San Diego, and called and asked them if they would take me as a patient. They said, "Send her down here, and we'll do a series of tests." So, I flew there in 1988.

I was there for about a week and determined that I needed to have surgery again. So, they scheduled surgery for a Monday, and they opened me up, took the clot out, and they closed me up. When they removed it, they measured it with a wooden ruler, and it was seven inches long, and 10 inches wide. Tuesday, I re-clotted, so Wednesday, they went back in, opened me up again, and removed the clot again, and decided that they needed to re-route some of my map in there, I guess, as you would say. Couldn't finish the surgery, so they left me open on Thursday in ICU, and then they went back in on Friday, opened me up again, and finished the surgery. From the series of those surgeries, basically started the rest of my life.

I was there for about a month and they sent me back home. I flew back home on an airplane. I went back a year later for a follow-up and all of my pressures were good. Everything was normal, and everything was stabilized, and they said, "Go, live your life, and follow up with a pulmonary doctor in Dallas", so that's what I did. While I was there for that second visit, prior to this, my doctors had all said, "You're not going to be able to have children."

Well, Dr. Auger was my doctor, and I asked him that second visit if I would be able to have children, and he said, he thought that I would be able to have children, but he suggested that I do it before I was 30. At this point I was 25, so the clock was ticking. However, I was engaged, got married, and over a period of a year-and a-half, and four miscarriages, unfortunately, I ended up getting pregnant, and having my son.

That was an adventure in itself, trying to find a doctor that would take me as a patient and deliver a baby for me, considering my diagnosis, because, back then, there was no knowledge of what pulmonary hypertension was. The doctors were all very scared of it. I saw a series of specialists, OB-GYNs, that all thought they should do it this way or that way, which caused me to miscarriage. Finally, I went to my sister-in-law's regular OB-GYN, he wasn't a specialist, and he said, we're going to get you pregnant the old fashion way, and that's what I did, and had my son.

So, over a period of the next 15 years, I tried every pulmonary medication under the sun. It would work for a period of time, and then it would stop working, so they would switch me to the next greatest thing that was out. Luckily, my doctors here in Dallas, Texas, the main doctor, her name is Dr. Kelly Chin, and she was trained by Dr. Auger in San Diego, so I got the best of the best. I call them my posse, because I have her and her team, and then I have electrophysiologist that takes care of my heart, and I have a regular cardiologist that I see yearly. Those are the main people that I see on a regular basis, and without them, and without the care, and the research that they are able to get their hands on, I wouldn't be here if it weren't for them, and the medications that they have developed.

So, the research for this disease is very, very important, and it's prolonged my life, because, without the medication, I wouldn't be here. I honestly would not be here. Up until two years ago, I was able to take oral medications and kept my pressures down, and then in 2011, I started having problems with my heart, I kept going into A-fib, trying to find a doctor that would take me as a patient, and luckily my doctor at UT Southwestern, here in Dallas, took me on. I had an ablation surgery, and from that, that actually has prolonged my life, and given me a quality of life back, that I didn't have prior to that.

Between him and Dr. Chin, they've worked hand-in-hand with their medications, to give me a quality of life to where I can still be active, and still work, and contribute to society, which is important. I think, at this age of my life, my son, he's going to graduate with his Masters. He's gone on with his life, and is becoming successful on his own. I've really kind of had to find my own way, after 20-something years of being mom, and taxi-driver, baseball mom, PTO President, and all those good things.

When this last episode happened, my doctor basically came to me and said, "Your only option, at this point, is IV therapy", and I wasn't very happy about it, because up until this point, I could hide my illness. I'm one of those type of people that, my illness does not define who I am. It's just like brushing my teeth. It's just something that I do every day. It's just like another arm, and I haven't let it really limit my life in any way. I kind of live my life that way. I'm not saying my life has been easy, it hasn't. But, I get up every day, get ready to go, put my clothes on, and just face each day as it comes. But, I've not ever surrendered to this disease, and I won't. I will fight until I have no fight in me.

Luckily, with these medications, like I said, up to this point, every five years, they would say, "Well, you might have another five years," because that heart muscle can only take so much, and if that muscle wears out, there really are no options. But, with the medications, it's given it a break, and I've been able to successfully keep going. So, I'm very thankful for where we are with the research that has been done on this disease, because when I was diagnosed, they basically said, "We don't know how you got here, you should've died three months prior because your pressures were so off the charts." And so many people have passed away from misdiagnosis, and it's unfortunate that it's like that. Hopefully, over the rest of my life, [doctors will] continue that research, because I think that it's going to give people younger than me quality of life again. That's my hope anyway.

I will say that it is not a life sentence anymore. It's not. There are so many more options now, and so many medications, good medications, that it gives all of us hope to extend our lives. I never thought I would be sitting here at 53. My goal was to see my son graduate from high school, and I figured that I would be gone now. With the medications that are out, it's just prolonged my life, and the medications are getting better, and better, and better.

I've never given up hope. That's what I would say is, don't give up hope, do your research, fight for your life, because it's worth it, and that it isn't a life sentence, it's not. I really truly feel like if you have a positive attitude and whatever your faith is, if you pull, and reach, and grab on to those things, life is so much better, based on your outlook toward it. Are you going to let it defeat you, or are you going to fight it? I choose to fight.

My name is Wendy Jackson, and I am aware that I'm rare.

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