If you want to start at the beginning, click the link to "Ken's Ordeal" at the bottom of this post or in the sidebar and scroll down to Part One.
It took about half an hour to get to Sheboygan Memorial from our home. It was a long half hour, and I kept glancing over at my husband as I drove. He had an "episode" on the way to the hospital. I felt chilled to the bone, and it wasn't just due to the wintry mix of snow and wind.
"Please, please, let us be heard. Let him be admitted...." I prayed silently, and then out loud. Ken was, by this time, in terrible pain. His shoulders, back and hands were all hurting badly and both hands were now swelling to a marked degree. When we arrived, I ran inside and retrieved a wheelchair and returned to the car to help Ken ease into the chair.
Soon I was talking to a triage nurse. Ken could barely speak. "He's getting admitted," I said flatly. The nurse wisely refrained from comment.
We spent all day the Emergency Room. Eventually, Ken was hooked up to various monitors. After a while, it happened--he had an episode. A nurse was in the room to note that his blood pressure spiked alarmingly and then dropped. His oxygen level plummeted. His heart pounded at an alarmingly rapid and uneven rate.
And it all showed up on the monitor. And he was admitted for observation.
The hospitalist (a doctor who specializes in caring for patients in the hospital) on duty was a motherly-looking middle-aged woman. I liked her instantly. She listened carefully. She asked smart and probing questions. She looked alarmed at hearing that these episodes had been occurring for years. She said, "You are clearly very sick, Mr. George. We need to get to the bottom of this. We will be having several different specialists talk with you."
At this point, the episodes were happening again and again and it seemed the slightest exertion was setting them off. Ken said they were an indescribable but very uncomfortable sensation that moved from his feet upward, reaching his chest and causing pressure, the heart symptoms, shortness of breath, sweating, and then an extreme, pounding headache. We now knew that his blood pressure was spiking alarmingly and that, along with the tachycardia, was causing great risk of stroke and heart attack. Ken's pain increased steadily. He was admitted to ICU and started on a morphine drip and other drugs.
Ken's endocrinologist, upon seeing that an adrenal tumor had been discovered a few days prior, finally made the connection. The tumor, called a Pheochromocytoma, might be the source of the episodes. Adrenal tumors are not all that uncommon, but the one Ken had been suffering with for years was a very rare type indeed. The endocrinologist told Ken, "This is really a one-in-a-million diagnosis." One of the family practice doctors at the clinic later told me, "There are nine of us with offices in this hallway. Together we have many decades of experience. Not one of us has had a patient with a Pheochromocytoma."
The "pheo," as it turned out, had been lurking for years. (Ken and I both believe it was doing its dirty work long before the day, eight years ago, when he had what seemed like a heart attack and called 911.) Pheos can cause a variety of symptoms that mimic other problems. I later discovered, while doing an Internet search, that an episode of "House" had centered on a man with a Pheo.
The pain in Ken's back turned out to be a dissolved lumbar vertebrae, possibly due to osteoarthritis caused by the tumor. Doctors disagree about whether adrenaline can cause osteoarthritis.
The pain in his hands and shoulders remained a mystery, but no one was worrying much about those issues. The endocrinologist said he should not sit, not stand, not move more than absolutely essential. The only solution to the many symptoms: heart tachycardia, extreme blood sugar swings, high blood pressure, shortness of breath, sweating, dizziness....was surgery. Hopefully the adrenaline rushes he had experienced were also the cause of the pain he was enduring.
But, we were told many times, the surgery is very risky. Any attempt to remove the tumor could result in an "adrenal storm" of hormones that could cause stroke, heart attack, or instant death. Attention was focused on keeping Ken alive on a cocktail of medications, and he spent a week in the hospital. Then he was transported by ambulance to St. Luke's Hospital in Milwaukee. He was informed that he would be having the tumor removed one day, and the next day he would undergo a simple surgery to inject a sort of "cement" around the dissolved vertebrae. We waited, with some anxiety but mostly with relief that the tumor was going to come out and he would soon be on his way to recovery.
When he arrived at the Milwaukee facility he was told that there was absolutely NO WAY he could have the dangerous surgery until he had been stabilized on the cocktail of beta blockers and other medications for at least a month. He spent a week in St. Luke's, being seen by several specialists. An orthopedic surgeon told him he would need a spinal fusion. A rheumatologist told him his shoulder pain might be due to something called Polymialgia Rheumatica. Or it was a side effect of the Simvistatin he had taken for some time. A cardiologist ordered two different kinds of chemical stress tests to make sure Ken's heart could stand surgery. Ken said they were excruciating and while he understood the need for them, he returned to his room feeling he had been tortured.
Through all of this, Ken's shoulder, hand and back pain continued to be extreme and he was given Fentynal through a patch at more than four times the usual dosage and also Oxycontin that were as high as could be safely used. At this point his hands were so swollen that his knuckles weren't visible. He could not move his fingers more than the slightest bit.
After a week in the Milwaukee hosptial, Ken came home to wait until the surgery could be performed.