How were you diagnosed?
It wasn’t quite straightforward. For years I was having episodes when my heart would pound, I couldn’t catch my breath and my head felt it would explode. I was diagnosed with high blood pressure and even became diabetic! I was getting sicker and sicker. Eventually I was having episodes every day, which would also result in me throwing up. My GP said they were panic attacks and I had no reason to believe any different. It got to the point that I couldn’t even get out of bed without having an ‘episode’. They almost became a way of life! One particular Saturday morning I had the usual getting out of bed episode that didn’t stop. The episode continued and I sat there thinking, okay, don’t panic. This is going to go off. It’s going to be okay. And the next thing I remember is waking up on the floor in the living room and the room filled with paramedics telling me that I had had a seizure.
So I was rushed to hospital. My blood pressure was off the chart and my sugar levels were ridiculously high. They assumed I had either a brain tumor or had had a stroke. But the MRI scan on my head was all clear. The only thing that they could find was that my blood pressure was high. So they upped my medication, and then a few days later they attempted to send me home from the hospital.
In preparing to leave I collapsed on the ward with another ‘episode’ It was my daughters who had come to pick me up. I remember the nurse saying “it’s okay, mom’s blood pressure was just a little bit low because she’s been in bed for a few days.” I remember my daughter getting quite cross with the nurse saying her blood pressure will be high and they couldn’t possibly take me home like this with no answers! Then they took me back to bed and discovered that my blood pressure was off the scale again.
And that was when they finally started to look into things more and said “it could be something really rare, but we don’t think it is, but we’re going to do some tests anyway”.
The following day, they sent me for a kidney ultrasound because of my blood pressure being so high and I started a 24hr urine collection. And that was how they discovered the tumor, basically by accident while doing the scan!
How did your doctor explain the exact condition that you had?
A couple of hours after the scan, the doctor sat down on my bed with lots of medical students and explained the scan had shown a rare tumor called pheochromocytoma on my right adrenal gland. Suddenly I was a bit of a celebrity, because of this rare tumor.
They explained that it was most likely benign, and that these medical students would probably never see another case again in their career. She wrote down on a piece of paper the word pheocromocytoma and said to look it up and write down any questions I had. Then they referred me to the endocrinologist.
My endocrinologist has been amazing and promised to look after me for life and also sorted out genetic testing for me.
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?
After the initial shock, I think I was actually relieved because it had gone on for so long. My GP had told me for years that I was stressed and anxious, it was all panic attacks. I was off work for two months with so-called stress and went to counseling but nothing worked to the point where I even counseled my counselor because she started crying one day!
I think I felt relieved that there was something they could do about it, but then absolutely terrified because suddenly I’m facing major surgery. When I spoke to my GP she actually cried and apologized, because I’d been begging her for weeks leading up to the seizure that I knew there was something seriously wrong and nobody would listen to me. Overall, I was relieved and a little bit self-righteous that there was something wrong!
How did your family members or friends generally feel when you were trying to explain what was going on now that you had an answer?
I asked my family these questions. Actually, some answers made me cry a bit because it made me understand a little bit more about what they went through.
My mom and dad said that they were just really relieved that there was an answer to all the unanswered questions.
My husband said he was very angry, at first, because they gave me so many anti-depressants over the course of a year, which never did any good, they just kept increasing the dose up and up, nothing ever changed.
My eldest daughter said she felt angry because I’d been ill for so long and that they had doubted me. She said “I think the worst part was when they tried to send you home and you collapsed on the ward. The doctor was so patronizing!”
My youngest daughter said that she was just absolutely terrified that they tried to send me home even though they didn’t know what was wrong, it was as if they had almost given up.
What are your thoughts on the info you found online about pheo para topics? (Was it helpful? Worrying? Could it be more understandable for the average person?)
I tended not to look too much after I was diagnosed. I had my dad look because I didn’t want to read anything that was going to freak me out even more.
After surgery, I discovered there wasn’t a lot out there. My consultant gave me the details of the charity Amend here in the UK. They’ve been really helpful post-surgery because I have needed to get some secondary advice.
Pheo Para Alliance was probably the most informative in America. It was good to connect with people that had already been through it on the Facebook private groups. So that’s been really, really helpful, but there could be more.
I know it’s really rare as well, so it’s a battle really to get the right information out there.
What kind of advice would you give for somebody who has just been diagnosed about how to handle all the mental aspects of diagnosis?
I’ve been thinking quite long and hard about this!
I would tell them, it’s okay to be frightened, angry and it’s okay to be not okay! You are NOT alone.
I’ve been talking to people in the UK that have just been recently diagnosed. It’s been good to encourage them and let them know that they’re not alone and their fears are not to be dismissed. They’re very real before surgery, as well as after!
If you need to shout, cry, scream or talk about it, then go ahead and do it because that’s completely normal. There are people out there to support you through your journey.
How have you been since your diagnosis?
It’s been three years since my surgery, and it’s been quite a journey!
Once I got out of intensive care, it was like a switch had been flipped. Overnight I became non-diabetic, which my consultant didn’t expect so it felt great to prove him wrong! I wasn’t on any medications for my blood pressure and everything went back to normal.
I wanted to start getting fit. So I began what we call a Couch to 5K program, which gets you running 5km in three months. I have since ran my 50th Park Run (5km) and completed an annual 10km run for charity.
I have had a few symptoms that have been worrying in the last year or so. My consultant’s been amazing. I’ve been to see the top guy in the UK down in Birmingham, which is a few hours’ drive away from where we live. It was really reassuring.
Now, I have quite low blood pressure, which can affect me quite a bit and I have had to learn to manage that.
I was discharged from cardiology in the last couple of weeks. They’ve said there is no heart damage. So it’s all been really reassuring.
I’m due for my annual checkup just after Christmas. I will be glad to get the ‘all clear’ for another year. I want people to know that it is possible to get their life back.