Jamie's story
For many years I suffered from high anxiety, I was even diagnosed as having agoraphobia at one point. Then around the year of 2017 I started to have some very strange symptoms, more so than the years previously. I would suddenly feel heat in my upper arms and legs and torso, this would then start to feel like my breathing was restricted, I would find that my heart would start to flip around as if I had a fish in my chest. I would seek out help only to be told it was anxiety/adrenal fatigue/perimenopause/obesity as I was in my later 40s.
The symptoms would last from seconds to entire days. My moods were terrible, my blood pressure extremely high (190/110 on average) and I even wrote letters to my children in case something happened to me, about two weeks before it did.
On March 3, 2021, I was hiking and I felt the need to go back to my car. I didn't feel anything in particular at this point except slight pain in my neck, like a sharp pain that went into my jaw. I got in my car and as I started to drive I had the urge to vomit, it was the dry retch kind of vomit, not much was coming out but it didn't stop. I drove for 40 minutes to my local hospital, where I was wheeled in and all I remember doing was talking to administration in emergency and who to contact to help with my children. Then I don't remember after that!
Five days later I woke up in hospital with leads coming out of me and to find out I had a tumour on my right adrenal gland called a pheochromocytoma. The pheo had hemorrhaged which caused two Reverse Takotsubos (another rare health event). I was on life support/dialysis in ICU. From here, I spent around a month in hospital until I was able to go home and take medications to lower my blood pressure in preparation for my surgery as the tumor was causing my blood pressure to become so dangerous that it created the Reverse Takotsubos.
In June of 2021, a couple of weeks after my 48th birthday, I had a 13 hour surgery to remove my tumour. I was extremely lucky to survive and the recovery has been long.Pheochromocytoma had run my life for at least a couple of decades, except no one knew it. I was unable to work easily, and I have not been able to work full time since my serious event. I will have to have six monthly check ups to check my metanephrine blood levels to see if the pheochromocytoma has returned/metastasized.
Even though the pheo was benign, it can still behave like a malignancy and could return at any time. Especially considering that it burst. When one is removed they have to be very careful to remove it without it bursting to help make sure it doesn't return. I will have to have this checked for the rest of my life.
Pheo has impacted my life as recovery has been slow, I also suffer health anxiety/PTSD with little support. I am unable to do the things I used to do, hiking, long walks, climbing hills.
Awareness of pheochromocytoma by doctors, any rare diseases by doctors would help tremendously. Its too late for an early diagnosis for myself, but it could help someone else have it removed without consequences.
A large percentage of pheochromocytoma are diagnosed post-mortem. In my case, exercise programs, someone to talk to after having such a scary event in relation to health anxiety/PTSD would help tremendously. Support and someone to talk to about an illness that is so rare is quite lonely. More studies on what it is like to live with one adrenal gland, or without any in some situations and more genetic testing to see if it is related to other genetic mutations such as Lynch Syndrome (I have Lynch as well).
There is not enough known about it. Diet help and support to improve your life after. I also believe there needs to be more awareness of the impacts of Reverse Takotsubos/Takotsubos, as it is often brushed off as being "broken heart syndrome" when in fact its a very serious and real health condition that can cause cellular damage that you may never fully recover from even if an echo states otherwise.Blood pressure medications are the most common medications for pheochromocytoma. There is a good range of those, but unfortunately pheochromocytoma is unpredictable in relation to blood pressure and I was very lucky that the one medication that works the best for pheo was available. It nearly wasn't!
Phenoxybenzamine which worked wonders. Awareness that someone who has a pheo, cannot have adrenalin as well is crucial. I was given two lots of adrenalin in emergency when they realized this was an issue for me. Hence why diagnosis is crucial early as well.
In all honesty, misdiagnosis and not enough testing for this particular illness needs to be addressed, easy access to the metanephrines test for all who have unexplained high blood pressure along with at least one symptom such as high anxiety, or heart flutters, strange episodes would be a game changer, or unsure, at least a scan, preferably CT or MRI but if not at least ultrasound. This could have made a difference to myself as well. It could literally save the life of many.
Although pheochromocytoma is rare, it is a condition that more and more people are turning up with. It would be great if more people could have it diagnosed so that it isn't diagnosed post-mortem.