Skye’s Paho Journey with Pheochromocytoma

September 10, 2014

For years I would blackout & hit the ground.

I thought it was due to anything, except what it was. For years I had high blood pressure that would spike so high, till I would go to the emergency room and be diagnosed for anything except what is was. I have MVP w/CPVs from a heart murmur, so I was constantly told it was from that. It was like that from my 20’s to my 40’s. I kept living my life, motivating others with my poetry and traveling the U.S. from Settle to N.C. I went to Queen’s emergency room thinking it was a appendix trouble, but once I got a MRI I was told that I had a tumor on my kidney.

After more test it turned into a cancerous tumor on my adrenal gland called Pheochromocytoma.

I was given the diagnosis on Aug. 17, 2012. From that time forward, I battled insurance and doctors to get answers, medication and equipment like my blood pressure cuff. They knew they needed to get me to surgery quick, because I was told my tumor was 2cm big and that I had had it for at least 3 years. Once the doctor told me that they only had a 50/50 chance of cutting my cardiac artery, a couple of weeks before the surgery.

I felt like I needed a second opinion. I googled my surgeon and found out that he hadn’t done a Pheo surgery in 10 years. I cried and thought my life was over, it put me into a spiral. It was tearing at the seams. My family and friends thought my stress was due to my attitude more than my disease,  because I didn’t look sick to them. I could not leave the house, because I was having so many high blood pressure spells. There were times I couldn’t stand up and had to be creative to make a living from home.

I still wrote poetry anyways. I felt it would help to motivate me. One Sunday, after dealing with my new diagnosis, I did a special appearance at a friend’s gig and after, met new people. I came across a person, who I told my condition to, that knew of a person with the same disease. He was right there at the gig! To my surprises he had told me that he was 1 of only 6 people in the state of Hawaii that had that condition and I would be the 7th. My new friend got me in contact with the people that removed his tumor and that was  at the NIH (National Institute of Health) in Maryland. He gave my number to the other patient he knew and she called and told me that she knew of my fears and said that I am going to live and make it. I cried for joy to know that everything was now going to be taken care of by a competent team of professionals –and not to just learn, but to research and create a cure! When I told my doctor at Queens, he didn’t say congratulations, but instead asked how I knew about NIH.

My life was in the balance, weighing on the type of care that I would receive. It was scary. I stayed over a month at NIH before lowering my blood pressure, when Queens wanted to hurry my surgery due to reasons I didn’t understand. Dr. Nobul at the NIH was my lead surgeon, who was had performed over 2K surgeries. I felt I was in good hands until Hurricane Sandy came.

But the staff that was the best ever. I had a physician intern drive me to the store to buy minutes for my phone to call family the day before Sandy came. The city was pitch black from my 5th floor window looking out, but the hospital was open to care for those in need of help. I had the surgery the morning Sandy hit and was in an induced come for a day and a half. When I woke up, I knew something great had happened. I had donated my tumor to be researched to create a change for those with Pheochromocytoma. I started a blog to tell my journey, because I videoed almost every moment from the time I got my diagnosis to now. My blog is called Skye’s Pheo Journey

I have enjoyed the journey and feel it’s not over yet!

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