Pheochromocytoma Support Foundation

  Shining the light on pheochromocytoma awareness through education, early detection, and support. 

What is my family member experiencing?

Your family member has probably been experiencing the symptoms associated with a pheochromocytoma for some time. The difference is, the symptoms are now being controlled by medication and his or her body is in the process of being prepped for surgery.

Symptoms vary patient to patient, but the most common are excessive sweating, high (often stroke level) blood pressure, and severe headaches that make migraines seem mild. The headaches often encompass the entire head. They are usually the worst in the lower back of the head, due to elevated blood pressure.

Often, patients are placed on multiple medications to control pain, blood pressure, and other problems that arise. It's important to stabilize the patient's blood pressure before going into surgery. This process takes an average of two weeks. The surgery is risky, as the tumor (the pheo) will release an abnormally high level of catecholamines upon the body being opened and the pheo itself being cut out. The catecholamine release will cause your family member's blood pressure to elevate to a severe level, and quickly. Don't worry though, their will be specialized teams on standby and some present with your loved one during surgery.

Surgery success rates are very high. Most pheos do not regrow after a surgery, although it has happened occasionally.

How much pain is my family member in?

That varies by patient. Some patients are able to have their pain (usually headache pain) controlled very well in a hospital environment. Others, are able to have it dulled down to a manageable level.
Visit Facebook Page to meet with other family members, supporters, and patients.

What have you done to help a loved one? If you're a patient, what's something that helped you?

The best gift, is your support.

How can I support my family member?

Stand by them!

Your family member is confused right now, and scared. They may be fairly uncertain of exactly what is going on and what is happening to them. They may be on strong medications that leave them confused or disoriented. Be patient with their questions, and moods.

Put them in good spirits!

Don't be negative when you visit. Pheo's often leave people with an impending sense of doom, due to the tumor messing with their glands and levels. Be happy. Make pleasant talk. If you feel emotional, it's ok to go take a walk or excuse yourself to the bathroom to recompose.

Recognize their emotional needs.

If they want to talk, be a good listener. Encourage good thoughts. Do not be afraid to utilize the hospital's social worker or a therapist. The Doctor or nurse can help you locate these services in a hospital.

Be encouraging!

One of my favorite text messages I ever received was before I went into surgery. My best friend sent me a text reminding me that I was a fighter and she would fight alongside of me. She finished it by telling me that she loved me and would come visit me at home in a few days. It put me in really positive spirits. And while I won't reveal the exact hysterical wording she used to describe me as a fighter, it made me giggle and laugh, and was exactly what I needed.

Send emails, flowers, or just visit with a big smile. Be natural. The best visits were people who visited and it was almost like we were sitting around my living room, talking.

Be respectful.

Don't assume your family member wants to see photos of what they're missing out on while they are stuck in the hospital or on rest. Ask before you start showing photos or status updates ("Would you like to see the photos from that birthday party last week, or look at them another time?"). 

Think outside the hospital.

If they are allowed to have it (check with the doc!), they might enjoy something yummy that didn't come from the hospital cafeteria. The day my mom walked in with a Subway sandwich and a Dr. Pepper was a pretty good day. In fact, I talked about that sandwich for a few days.  

Make them feel normal.

The IV's and machines can be scary.  That's your family member under all of them and that person didn't change. They're just sick. Do they need some help brushing their hair with all those lines in the way? Do they have the toiletries they need? One patient told me a cousin brought her some toilet paper. "It seemed weird, at first," she said, "then I realized just how nice it was to have soft toilet paper! It was a small comfort from home." Another patient mentioned loving that his room was filled with movie posters. It really cheered him up. You might ask your family member what they would like to have or just surprise them with something you know they would love.