Things started to go south in September when my husband awoke one morning with the lymph glands in his neck swollen to the size of golf balls. There were no other symptoms, but the swelling persisted so off to the doctor he went. Blood tests were ordered but came back negative for any infection or virus, so our family doctor advised hubby to take large doses of echinacea and let him know if things did not improve. Gradually, the swelling subsided and we thought all was well. Little did we know that this was just the beginning of a medical mystery that would test the limits of our patience, understanding and faith.
Not long after the swollen glands had begun to subsided and because this condition had gone on for some time hubby and I pressed for a CT scan in an abundance of caution to rule out lymphoma. The CT scan was eventually scheduled and when the results came back we learned that there was no sign of any growth or tumor. The scan did show a rather sizeable osteophyte that was displacing the larnyx, but no one seemed overly concerned about this. We went on about our lives, relieved that whatever had prompted the swollen glands wasn't anything serious. . .but we had only to wait just a few days longer for the firestorm to erupt.
About a week after the result of the CT scan came in, hubby awoke with a strange new symptom. When he swallowed, his left ear hurt. In the next couple of days, the pain began to intensify until one morning he awoke to pain so intense that it brought him to his knees. It was the weekend, so off to Urgent Care he went. The Urgent Care doctor was the most apathetic excuse for a doctor it has ever been my misfortune to meet. He did not palpate my husband's neck, nor did he look in his throat or ears. After checking hubby's latest blood work, he pronounced that there was no infection or virus and he didn't feel it was appropriate to prescribe anything. He told hubby to call our family doctor on Monday if he was not improved. By Sunday, my strong, brave and stoic husband was brought to tears each time he had to swallow. He had stopped eating and drinking and as a diabetic this is very, very dangerous. In desperation, I carted him off to Emergency thinking that they would be able to discover the source of his pain.
Our experience in the Emergency department was one that left us shaking our heads. While the doctor who saw hubby was very nice, very concerned and did all he could to try to help, he eventually told us that the problem was beyond their ability to treat and he should see an ENT. When we asked why he could not have an ENT consult in Emergency we were told, incredibly, that they did not have specialists for consult in the Emergency Department. . .REALLY? Hubby and I were dumbfounded. We left with a prescription for pain meds and a feeling that we had just been an episode of the Twilight Zone.
On Monday, by which time hubby was far worse, I was on the phone in nearly hysterical. The doctor prescribed Percocet and suggested a short course of steroids in the event that the osteophyte was pressing on a nerve and the act of swallowing was just enough to trigger the pain. Thankfully, the Percocet was so strong that it took the edge off hubby's pain. I was able to get him to at least drink liquids at that point. The doctor advised that he would expedite a visit with both an ENT and a Neurologist so that between them they might figure out the cause of the pain. Hubby and I felt a huge sense of relief thinking that we were finally on the right track. But this is where it gets fun.
Late that same day, our family doctor called back and told us he was able to get us in to see the Neurologist following Monday and the ENT could see us later in the week. By day two of the combination of steroids and pain medication, hubby was much more comfortable. A few days later we saw the ENT, who after scoping hubby and completing a physical exam, pronounced that he could find no reason for the pain related to the ear, nose or throat. He encouraged us to follow up with the Neuro and also prescribed a broad spectrum antibiotic in the event that the condition might have come from a low grade infection.
While the pain was much less intense, hubby was feeling very tired and lethargic. He was having trouble focusing and felt that his vision was blurry. I chalked it up to the Percocet and was not terribly concerned. But he continued to deteriorate physically and emotionally. He was confused and dizzy and lethargic and had no appetite. He complained of blurry vision. He could not focus on the TV or at the computer. His blood sugar readings were very high and despite strict carb counting, his numbers just did come down. We thought it might be the illness and the lack of exercize, but it was troubling.
I took hubby on an outing just to get him out of the house and hoped it might serve as a "pick me up". We chatted as we drove toward our destination and suddenly hubby blew up! He got extremely angry and when the we stopped at a traffic light, he got out and told me he was going to walk home! We were, at that point, about 5 miles from the house. I was sitting at the light in disbelief. While hubby was a warrior in the courtroom, he was a gentle, loving husband who had always shown the tenderest of feelings toward me. His behavior was so out of character as to be frightening. When I was able, I turned the car around and after begging, pleading and ultimately threatening to leave him I was able to get him in the car. There was no doubt that there was something very, very, very wrong. Then, later that evening, hubby noticed a fruity smell to his urine - a telltale sign of ketones - and we grew more concerned. It was certainly time to get another opinion.
We made an appointment with his endocrinologist, but unfortunately we had to wait a week to see her. During the visit, she explained that prednisone is a glucocorticode. It had caused a glucose toxicity and had so overloaded his system that his pancreas had just gone on vacation because it could not handle the amount of glucose that was pumping through his system. The doctor put him on insulin and told him that his blood sugar levels should come down in a month or two. We began the regimine and as expected hubby's blood sugar levels began to come down. Within six weeks he was off the insulin entirely and back to normal.
At about the same time that things were normalizing for hubby, our oldest daughter began having severe abdominal pain and nausea. She saw her doctor who sent her out for a CT scan. The scan revealed an inflammed gall bladder, and since her pain was growing worse, he advised her to go to the ER to be admitted for surgery. In what can only be called a comedy of errors, the ER did not admit her, but did another CT scan and pronounced that there was no sign of gall bladder disease. They sent her home and told her to return if she was "not 100 percent better" in the morning. Of course she did not get better, so she called her doctor and he arranged a surgical consult for her. After seeing the surgeon, it was agreed that she needed to have gall bladder surgery. While one is always mildly concerned when any surgery is performed, gall bladder surgery is pretty routine and we were not worried as to the outcome. We were not prepared for the consequences of her surgery and began another descent into medical hell.
Our daughter came out of the recovery unit in extreme pain. The pain was so intense that she was crying even under heavy narcotic medication. The recovery room nurses assured her that the pain was normal and would subside over the next few days. Our daughter, herself, is a nurse and kept insisting that something did not feel right. Nonetheless, we were not overly concerned and felt certain that she would bounce back quickly.
Over the ensuing days her pain did not abate. She was taking pain meds at the highest dose allowed and at the shortest intervals allowed. She complained that the pain was sharp and stabbing whenever she took in a deep breath or turned her torso. She could not eat, could not keep anything down and was getting dehydrated. After 8 days with no improvement, I insisted that she go to the Emergency Department, because it was New Year's weekend and her surgeon was not available. She spent 12 hours in ER. She had yet another CT scan, an ultrasound, x-rays and was given pain meds and put on an IV drip. The upshot - they could see nothing amiss. Depressed, tired and still in pain, we returned home.
The next morning, we were able to see her surgeon. He reviewed the ER tests and also agreed that there did not seem to be anything amiss. He referred her back to her primary care physician and suggested that perhaps a referral to a pain management specialist was in order. As we left the surgeon's office we both were on the verge of tears. Obviously she was in pain. Obviously there was something wrong. Obviously no one cared to pursue it. For my daughter, it was doubly frustrating. She is a nurse who works for this hospital system. She felt incredibly let down and disillusioned.
She did see her primary care physician who likewise could not tell her why there was so much post surgical pain, but did think a referral to a pain management specialist was in order because it may be the case that my daughter might be one of those rare individuals that did not respond to narcotic pain medication. WHAT A LOAD OF CRAP. Regardless of whether her pain receptors did or did not respond to narcotic pain meds, SHE WAS IN PAIN and that pain had to have a cause.
It has now been nearly a month since her surgery. She still has pain - although thankfully it has abated somewhat. But she still struggles with nausea. She has lost a total of 21 lbs in the last month due to her inability to eat. She is due to return to her job in the pediatric ICU in about 10 days and I wonder if that is going to happen. To make matters worse, her hospital is cutting back and she is fearful that this absence with give them a reason to terminate her employment. No one should have to worry about while recovering from an illness but, sadly, it is a fact of life today.
All of this has left me with a very bitter taste in my mouth for the medical profession. Perhaps it is a result of "Obamacare" or the impending implosion of the system when the full force of the federal healthcare system is realized, but from my perspective, there is a sense of apathy among the medical professionals we have encountered in the last several months. No one seems to want to do anything beyond the absolute minimum that is required. No one seems to genuinely care. I recognize that medical professionals see all kinds of people and that many of them are malingering or drug seeking individuals. That is certainly NOT the case with hubby and daughter. Neither fit into that mold and in point of fact, both of them abhor pain drugs and having to take them. My daughter is ashamed and embarrassed by what we have encountered. As an RN, she is committed to providing her patients and their families with the best care she can provide to them. She advocates for her patients and does everything within her power to make sure they get the care they need.
It is a different world these days. Hard not to be jaded. Hard not to feel hopeless. And yet, those are the feelings that evil takes hold of and pulls you down. So, I struggle with my faith. Faith in the system, faith in my fellow human beings, faith in a world that seems to be coming apart at the seems.
"Faith consists in believing when it is beyond the power of reason to believe".
Voltaire
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