It has been three months since a post about Ken, but here is number sixteen. That in itself is a bit horrifying. I think I have avoided posting because things seem pretty grim. It is difficult to be optimistic when writing post number sixteen.
For the good news, Ken's knee healed fine with no infection. It is a bit swollen, which will be the case for about a year. He limps slightly when walking, but this is a great improvement over his really frighting, lurching, bow-legged gait before the surgery to "revise" the previous knee prosthetic. He has very little knee pain. The VA rheumatologists have prescribed an antibiotic that has a side effect of lessening joint pain, and it is helping somewhat with Ken's overall pain, though not enough to discontinue the high levels of pain meds.
Last post, I mentioned tests in the VA neurology department. Ken had a nerve test to once again try to discover if his pain is due to nerve damage or some undiagnosed nerve disease. It is a painful test that always brings Ken to tears and has now been done three times, once in Sheboygan, once at Mayo and now at the VA. The results, once again, showed the kind of neuropathy that would be expected in a long-time diabetic but nothing of note.
Then we went back for an actual neurology consult. (I had insisted on one and the rheumatologist had agreed.) I wheeled Ken into the little room in a wheelchair. In the room were a white-haired doctor about our age who had been present during the previous nerve testing, and a young, soft-voiced middle-eastern woman who appeared to be a student. The older doc was grumbling quietly to her. ".....and what are those guys in rheumatology doing? What do they want? We already did the test..."
The woman began to ask Ken about his knee, apparently thinking he was in a wheelchair because of that. (There is a bad-looking scar.) Then she asked other very general questions about pain. Ken was not having a good day, and he struggled to answer. His voice was weak, and he kept his head down. Meanwhile, the older doctor had his back to us as he typed on a computer keyboard.
I got angry. I said, "STOP! Please stop asking questions and just listen to me, and I'll save us some time."
The young woman stopped, looking surprised, and the typing at the keyboard stopped too. I apologized for being rude, telling her I wasn't angry at her, but I was frustrated. (Serious understatement.)
I went on, speaking quickly, "Ken is not in a wheelchair because of his knee. He does not have enough energy to walk around this medical center. He is in severe pain, as you know. He has also lost about 130 lbs. with no dieting. His testosterone level remains quite low in spite of monthly injections. He sleeps a great deal of the time. He has trouble with memory, and this is getting worse. He has been to Mayo six times and between Mayo and here has been tested for all kinds of things. We still have NO DIAGNOSIS after over a year and a half! He had a pheochromocytoma. [If you are one who has read these posts from the first one, you will likely remember that is what started this series--the one-in-a-million tumor that is often diagnosed post mortem because it is so rare.] The tumor was removed in February of last year and he was expected to get well. His blood pressure is no longer high. His blood sugars have stabilized and he no longer has to deal with hormonal 'storms' that caused all kinds of weird symptoms for years on end--but as you can see, he is NOT WELL!"
At this point the older doctor turned and said, "Well, your husband has been a diabetic for a long time, I see." He started explaining to me as if I did not know what diabetes can do to a person. I put my hand up. "Please stop. We know this."
He looked irritated, started to say something, stopped, and then looked closely at Ken who was still sitting with his head down. After a long moment, the doctor asked quietly, "Mr. George, how old are you?"
"Sixty-two. I'll be 63 in July."
"Hmmm...sixty-two...." he paused, and I said, feeling testy, "Yes, he is only 62. He is 62 going on 82." Tears came to my eyes, and the doctor looked at me kindly. I have since wondered if he is 62.
"I see," he said.
And it seems he did. The atmosphere in the room changed. He asked Ken some simple questions, examined his hands, had him raise his arms and do some other range-of-motion movements. Ken mostly kept his eyes closed. I'm not sure why. I expect just from exhaustion and maybe frustration.
"Mr. George, you can open your eyes," the doctor said gently.
Looking at me, the doctor reviewed the symptoms I had just recited. Then he turned to Ken.
"Mr. George, did you have any episodes of hypoglycemia?" (That's low blood sugar.)
Ken said, "Yeah. A few." He shrugged.
I said, "Not a few. Many. And some were severe enough that he passed out. His blood sugar swings were crazy. He could go from a blood sugar level of over 300 to one below 50 in half an hour. Of course, we now understand why nothing Ken did made any difference. It was the tumor."
He paused a long time, continuing to look at Ken, before saying, "High blood sugar is a bad thing, of course. But low blood sugar can be even worse. We may be dealing with brain damage."
Ken had a stroke many years ago. He recovered well, and he never even missed work, though he should have. There were some lasting effects, but they were mild and went mostly unnoticed by people who did not know him beforehand. The doctor told us that sometimes low blood sugar could increase the damage already caused by the stroke. Of course, other areas could be damaged too.
He said to me, "You were right that I did not understand, but now I do. This is really complicated, so thank you for helping me put it together. There must be some sort of central event, some single cause for why Mr. George has changed dramatically in a relatively short time. There has to be. This can't be all unrelated." He began to explain, but I nodded and said, "There is no need to explain. Ken and I understand this. We have been saying that to every doctor we have seen. So many I don't remember them all."
He scheduled two things. First, Ken would have several hours of neuropsych tests. Second, he would have a brain MRI. He seemed astonished that Ken's Aurora Clinic doctor had never ordered a MRI. He said, "I would have ordered one be done yearly, since you did have a stroke." He was surprised that none was done at Mayo either. Perhaps it eventually would have been, except that the VA stopped payments to outside providers and required Ken to receive all care at the VA.
(And I am broken hearted by the news on TV about the VA and deeply glad we do not live in Phoenix, AZ.)
Anyway, a few weeks later, Ken spent an hour talking to a nice woman who is a nueropsychiatrist. When Ken left the room, our daughter, Kris, who was the one with Ken that day, said "My dad used to be a genius." Kris told me that the doctor replied, "Oh, I can tell." She even told the technician who would administer the testing, "This will require some additional tests. This is a very intelligent man."
When Ken was in the US Marine Corps, his IQ test had a result of 170. Yep. A very intelligent man. In the USMC he was a computer programmer/systems analyst and was the lead programmer who wrote the fiscal system for the Marine Corps (winning the prestigious Navy Acheivement Medal for his work). He graduated from college Magna cum Laude with five minors (missing "Summa" by one tenth of a point) in spite of having a family, working several hours a week, and playing basketball on the Trinity team. On the morning he went for the neuropsych tests, he said, "If I am The Scarecrow will you still love me." I can't type that without crying. The Scarecrow, of course, is the Wizard of Oz character who had no brain.
The tests were all about mental functioning and took nearly four hours. Tomorrow I will take Ken to the VA Medical Center for the brain scan. Then we will make an appointment to meet with the original white-haired neurologist to discuss the results of these tests.
So at Post Number Sixteen, we are back to looking at the results of the pheochromocytoma, the "little ball of hate" as the urologist who did the surgery to remove it over a year ago, said to us.
Oh Dorcas, hugs, hugs, and more hugs. So glad you are able to speak up. And look how long an ordeal you've been through even though you speak up all along.
Yes, the VA situation is sad, and I'm quite sure that not all the VA clinics/hospitals are like that. But there is a country wide major shortage of doctors, so a fix won't be easy. My husband was done with the VA exactly a year ago. He was recently interviewed by a major newspaper about some recent complaints about the clinic where he no longer works. He declined to accept another contract offer because the new company (Many VA clinics are run by the company that makes the lowest bid.)...the new company had already showed their stripes, and they were stripes of a skunk. Which reports from friends have shown to be the real case. Oh dear.
And in my own situation, I've had 5 surgeries in 2.25 years, the first four of which are no longer done by the docs at the super specialty clinic where I finally got a thorough check up. And they actually touched my body and asked a lot of questions. How Rare. In my case, my first surgeon was actually quite personable, caring, and seemed thorough, but I didn't know that she was following the old way of doing things. Cost my insurance company a bundle, not to mention the deductibles, etc.
Patients have to have advocates and they have to speak up. Otherwise the money managers who run these clinics tell the docs to push the patients through in about 12 minutes.
So grateful you finally got someone to hear you. Hopeful. Praying my head off. Teeth clenched, hands gripping. Sending love.
Many prayers and hugs sent for you guys. :'(
Prayers continue to be with you and Ken. And hopeful that the doctor finally listened and heard. The peace of Christ envelop you.
Dorcas & Ken: Just read installment 16; so sorry for the many delays and continued questions. Just so you know, you are in our thoughts and prayers.
Bill & Beth
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