I'm Aware That I'm Rare: Candace Malson, RN
Candace Malson, DNP, R.N., ANP-BC, is an adult primary care nurse practitioner in Lake of the Ozarks area of Missouri. She is currently writing a book about dealing with the diagnosis of a life-limiting condition. She also give health related talks in the community. She shares her impassioned views on advocating for oneself.
My name is Candace Nelson. I’m a pulmonary hypertension patient and I am also a primary care nurse practitioner.
I had an initial diagnosis back in 1992 when I first became a nurse. I had a heart valve replaced and a heart doctor at that time told me, “You have PH, but you don’t have to worry about it because your heart’s been fixed.” Now 26 years later, apparently it’s back. When I first heard about it, I did some research, got what information was there, what 26 years ago. “Oh, you’ve got a very short life span,” and he said, “Oh no, you don’t have to worry about it.” Well, of course, in the interim years I had other things to deal with like recurring atrial fibrillation and all kinds of stuff like that and PH went away until last fall when I’d gone through a heart valve replacement, a cardiac ablation, umpteen cardioversions, every drug known to mankind to manage AFib.
Ended up in total heart block, got a pacemaker, was feeling better. That happened about two years ago, and then about last fall I started getting tired very easily. A flight of stairs had me panting like a puppy. I went back in and my small-town cardiologists said, “You’ve got PH.” She sent me to someone in St. Louis who did an exercise stress test and said, “We’re going to put you on the Letairis. At that point I said, “Time out,” because that month from the stress test to my last visit with him, being a clinician and working for the VA, where I had access to whatever journals I wanted, I did an extensive search on PH and found that number one right heart catheterization is the diagnostic gold standard. He didn’t do this. He didn’t do a VQ scan. He didn’t do a lot of things, but he was ready to start treatment.
But I told him that I am a clinician, and if for no other reason than I am a clinician being part of the problem isn’t enough. I want to be part of the solution. I want a referral to a PH center so I can offer myself for studies, clinical trials, whatever. If they turn me down, fine, but if I don’t make the offer, we don’t know what we threw away. I learned a lot about doing peer reviewed research, not only in my master’s program, but in my doctorate program and it can be very exhaustive, but I learned that there are ways to target things so that you can be a little more efficient. My feeling was, if I don’t do this for me, nobody will. I have to do this for me, but I’m also part of this community. I have the ability to do this so I don’t just owe it to myself. I owe it to my community to be part of the greater good.
I was on the table in the lab at this hospital in St. Louis, where I did this very interesting stress test where I was laying on my back on kind of a gurney that had one of those small cycles with the surgical boots attached so that my shoes wouldn’t come out and I was laying on my back and peddling. There was a nurse on my right side injecting something. It was some kind of a contrast, so they could get better pictures of the heart. There was an echo tech on my left side moving the probe here, there, and there was the physician near my feet saying, “Yeah, keep the second light lit,” and telling the technician, “Yeah, that’s good. Capture that, capture that, capture that.” When the test was done, he said, “Oh you did very well. Your pressures go way up when you exercise, but it’s okay. We’ll put you on Letairis.” That was what I heard before he walked out the door. That gave me a month between then and my follow-up appointment to do my homework and realize that I got to look out for myself.
Anything you can do for yourself, do it. Call anyone you know. Talk to anyone you know. If you hear of anyone who has the same condition, see if you can connect with them and talk to them. Because I’m in the clinical world and I can ask people, who do you like for primary care? Who do you like for endocrinology? Who do you like for different things? But most people don’t. Any network you have, use it, milk it. Take as much ownership as you can. I live in this body. I own it. I know it better than anybody because I’m with it 24/7 and anybody with PH will tell you the same thing.
You can get all the tests you want. People can do all the research they want to do, but 24/7 this is what I own, and my experience has as much value as anyone else’s experience does, and I have the ultimate responsibility for myself. Call somebody. Write somebody. Facebook has support groups. Get on Facebook and talk to people. Look up pulmonary hypertension. You will find all kinds of help. If you have access to clinical level stuff and you can handle it, go for it.
Do everything you can to advocate for yourself because the best outcome comes from the best investigation. Every one of us has the opportunity to participate, and I don’t know what my personal outcome is going to be. Maybe it’s not even going to be so hot, but maybe some little thing that I do somewhere with someone regarding this disease will feed that great bucket of information and someone else down the road will get a benefit. We’re all part of the community. We’re all park of this world, and the best way to make it is to stick together. Life is short. Fill every minute with whatever you can. Live.
I’m Candace Nelson I’m aware that I’m rare.
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