Tell me about the day you were diagnosed? What led to your first appointment and why did you get checked out initially?
I had about five or six years when I had some really funny symptoms. I went to the ER a couple of times and I had a bunch of heart tests done. My PCP kind of patted me on the head and said, looks like its anxiety. I have PTSD. So, I kind of went, okay, whatever.
I am an RN. I’m really familiar with the medical field. Then, three years ago, I had a heart attack and they did stints. I had really bad angina, I just didn’t quite understand it.
Then I had back pain, so my doctor ordered an MRI which I hadn’t had done for a long time. They saw a spot that they didn’t like. I told them, “you guys are just going after zebras this is ridiculous! I’m too busy right now.”
I had an ultrasound, it didn’t show anything. So then we did a CT and at that point they said, okay it’s one of two things. You either have an adrenal tumor or you have a kidney tumor.
Then we did a 24-hour urine test, and my catecholamines were sky high. My PA kept pushing me to have these tests done. I kept telling him to shut up! “You know this is a zebra?” He said. I know zebras. I am an RN. I have worked in the medical field and the ER too long. I don’t get into zebras.
At that point, they referred me to an endocrinologist at the University of Washington. By then it was pretty clear it was a pheo. I wasn’t gonna mess around with an endocrinologist that didn’t really know what he was doing. I wanted to go to a teaching hospital at that point because Ellensburg is a rural community.
So I saw Dr. DiSantos at University of Washington. He knew what it was and he wasn’t worried about it. He referred me to a surgeon.
So, I had the pheo out two years ago, since then I’ve been continuing to have heart issues and I cannot find research that shows what the long-term effects of an undiagnosed pheo can do to the body.
How did your doctor explain what you had?
Well, the doctor, who I knew personally from work, called to tell me that my catecholamines were elevated, and he said, “We’re assuming that you have a pheo.” And I said, “How can I have a pheo? Nobody has pheos, they’re really rare!”
What were your initial feelings and thoughts when you were told? How did you feel in the days following your diagnosis when you could have a bit of time to process it?
Because of my job as an RN, I have access to lots of research sites. While researching, my feelings went from fascination to anger and back again because obviously it’s common that pheos get overlooked as anxiety or panic attacks.
Then I thought about when I had the heart attack. I already knew from working in the ER that women often have different symptoms than the classic clutching your chest. So I had a lot of anger since they ignored even the possibility that the pheo was something other than anxiety.
The one positive thing in talking with the doctor who diagnosed me was that he said he is now more likely to check for catecholamine’s. Of course he hasn’t diagnosed a pheo since mine, but I appreciate that.
Looking back, I was having this really strange collection of symptoms that didn’t fit together. And the only thing that I could describe was that I would be suddenly overcome with almost a seizure where I would be vibrating. I mean, it was like my body was vibrating and that would last for a few minutes, and then it would go away, and I’d be okay. Well it never occurred to me that that was an adrenaline situation. It kept happening though and more often. Before I ended up having the surgery, I was actually on about 18 cardiac meds just to keep me going and to keep the catecholamine’s under control.
How did your family members and friends they feel when you explained what was going on?
I have two adult children and one of my son’s lives in San Francisco. My other son lives in Bellingham, Washington. And so he has a little more accessibility. He was always there when I had the heart attack. We both have a question about whether or not there’s some genetic component. I can’t afford the genetic testing, because insurance doesn’t cover it. And I don’t see a benefit. I just keep telling them that they had issues with blood pressure.
What are your thoughts on the info that’s available online for people?
What’s available for everybody sucks. If you just go into Google and put in symptoms I really got no information. There was nothing that really led me to any true information. Once I had the diagnosis of pheo and I searched for symptoms now I understand why it is misunderstood!
I was an RN for a family practice physician. And we knew all of our patients. I still know them even though I haven’t been in there for three years. I see them in the grocery store and they say hi, but that kind of medicine is really rare. And because of that, people rely on Google and information they can collect from friends and relatives.
For someone who is just diagnosed, what sort of advice would you give to them?
Well, the thing I always say to people is first, stop and breathe. This is a serious condition but life is serious. Life is fatal but not serious.
This is a condition that you can actually get over. Most people, if they’re diagnosed soon enough, don’t have continuing problems.
So go find the best endocrinologists who can then refer you to the best surgeon, because you don’t want to go with the surgeon who’s never done the surgery before.
How have you been since your diagnosis?
I am 72, and I had surgery on 9/11, two years ago. That actually magically cured the weird angina symptoms. I’m just on two heart medications, but I continue to have issues. I have more than the ordinary number of PVCs (premature ventricular contractions) and they’re symptomatic.
I’ve always been extraordinarily active and this has just really put a crimp in my style, but I am dealing with it. I don’t know if we can actually solve it enough. I have an excellent cardiologist who has done probably as much research as I have. And it is his feeling that the catecholamine’s created calcium deposits in the heart, but we can’t really know for sure.
So my next step is to see an electrophysiologist who specializes in weird rhythms. What I would really, really like to find out is the long-term effects of undiagnosed pheo. I can only find like two studies, one was in Turkey and one was one in Great Britain.