I need to warn anyone reading this post, this is going to be one of the angriest, most disgusted posts I have ever written. And because I do not turn off the filter in my brain when I write, I am fairly certain I will drop an “F” bomb before I am finished. I have no problem being vocal, standing up for myself, or for those I feel deserve better than what they are getting. And while I am not defending the Affordable Care Act as the perfect solution, it is far from perfect, it is better than what we had. My comment is that it is not good enough.
Yes, more people are being insured. Yes, people like me with pre-existing conditions cannot be turned down for insurance. But nowhere have I read anything about the quality of care being improved. Sure, new discoveries are being made to find better and safer cures. But even the most simple and basic needs of medical care during an emergency room visit are often a challenge to be met.
My father was diagnosed with Stage 1 lung cancer last year. A victim of his own choice to smoke for over fifty years. There can not be one person who will disagree with the statement, smoking causes cancer. So as disappointing as the diagnosis was, it could not have come as a surprise. As disappointing as the diagnosis was, some of the events of his care have been even more so.
My father made a couple of decisions in the event something should happen to him following surgery to remove the cancerous tumor from his lung, positioned perilously close to his heart, or during or following the completion of any planned treatments. One of those was for me to be his health advocate. He trusted my knowledge and experience, the emotions and fears I lived, and most of all, he trusted me to be a voice for him to make sure that he got the care that he not only needed, but deserved.
This was tested the day of his surgery, to remove at the least the lower lobe of his left lung, possibly his entire lung. The decision of how much lung to be removed would not be known until they were able to tell the exact proximity of the tumor. Following the surgery, I was informed that my father was having difficulty coming out of the anesthesia. No concerns were raised at that point, but the following day, and the day after that, I noticed my father’s attention span quickly fading. A neurologist came in and sat down in front of my father, carried on a two minute conversation with my father and said, “he looks fine.” On the second day, I received a phone call from my brother asking me for my fathers glasses, that he could not see without them. Being legally blind is not something I remember of my father and I had plenty of recollections of seeing him without his glasses functioning perfectly. But my brother insisted, he could not even locate a cup of coffee right underneath his nose. I informed my brother that I did have them and would bring them in with me following work when I came in to see him.
On my way to visit him, knowing that it had been two full days now since my father had eaten, I stopped by the cafeteria to pick something for my father to eat, something that I know he would eat. I purchased an order of mozzarella cheese sticks and proceeded to his room. When I got there, I realized that my father had not had his dentures in his mouth. Perhaps this may be why he had not eaten all this time. I held the cup in front of my father and said “Dad, put your dentures in.” He looked at me and told me that already had them in. And then he proceeded to stick his right hand in his mouth and yanked at his gums as if to mimic pulling out his dentures to show me that he already had them in, something I already knew he did not. But he insisted on continuing to pull at his gums, his imaginary dentures that would not come out when finally he looked up, and saw the cup that held his dentures, in my left hand.
He put the dentures in without drawing any more attention to himself. I showed him the cheat treat that I brought him from the cafeteria. He took one of the cheese sticks out and took a bite and said, “mmm… this is good. How did they make them so soft?”. I said, “Dad, it’s a mozzarella stick.” He responded back, “No, it’s a carrot stick.” My brother and I looked confused at each other. While my dad had a sense of humor, it did not involve being mischievous like that, especially after having been fileted and losing half a lung. The neurologist had been called back in, placed a piece of paper in front of my father, and drew six rows of horizontal broken lines and told my father to draw a vertical line through each line. My father, having completed the task, to all of our disappointment, had actually only completed half of the task. He missed the entire right side of the paper. The doctor pointed the error out to my father who shrugged it off, and proceeded to draw lines through the rest of the horizontal lines, but again, missing the last column of lines. It took no time for the doctor to call out without any fancy testing, he has had a stroke. Of course, a CT scan was ordered and did confirm my father had not one, but two strokes on the left side of his brain, one in the front and another on the rear of the brain.
Now not only dealing with lung cancer, but recovery from two strokes, my father’s oncologist informs us that even though the surgery was successful, for better chance of success of remission, a chemotherapy regimen should be given, just in case to catch any stray cancer cells that might have broken loose. Long story short, he went through the chemo, and did fairly well, very little side effects other than that typical hair loss. But following the chemo, none of us were prepared to hear the doctor say, “we think it is a good idea to go through radiation just to make sure we have used all efforts to make sure the cancer does not come back.”
Out of respect for my father, I will keep my opinions on this decision to myself. Half way through his radiation treatments, he began to develop fluid inside of his chest cavity. This was something that we had not seen since his surgery early last year. The doctors decided to continue on with the treatments while at the same time, withdrawing any built up fluid as needed. Over two liters of fluid had been removed and the treatments had continued. By the time his treatments concluded, my father had retained another liter worth and had to have that removed. And then just days later, a trip to the emergency room would reveal more fluid, building much quicker. The cause needed to be discovered.
Unfortunately, an annual major snowstorm combined with a family tragedy prevented the exploratory surgery from being done as quickly as the surgeon wanted, but it was not going to be too big of a deal at this point. The fluid was removed again and my father released from the hospital before the storm. Another call from my father, this time, he was calling an ambulance. Fluid became too much for him again, and this time, the surgery would get done.
A biopsy would reveal that his cancer had already returned, even before he could be declared in remission. I am not sure as to why success had been declared with the surgery, and additionally the chemo, it reared back during the radiation. A catheter was put in place, which he would go home with to have a visiting nurse drain any fluid that would accumulate.
Here is where I am going to blow a major gasket. I watch vital signs, along with the patient. And when I know a patient as well as I know my father, I know what is normal. I know that when his pulse ox is 98 or 100 per cent, he is breathing well. But his pulse ox constantly sank down to the lower nineties once they removed his supplied oxygen. And of course he struggled to breath. He developed a low grade fever which he would eventually be discharged with. I discovered that he was giving two different blood pressure readings, 20 point difference in one arm over the other. And blood pressure medicine was being given based on one of the two readings which was never investigated as to the cause.
It took three days of arguing with doctors to order a simple echocardiogram for my father because I had concerns with all the fluid that the possibility of congenital heart failure was being overlooked as I was experienced with another patient. I had finally convinced a nurse of my experience, and she was able to get the echo ordered. And guess what, it did reveal some fluid around the heart and a slight decrease in the ejection fraction of the heart (how well the heart pumps). It was not enough to cause the fluid build up, but now the doctors would be aware of another condition my father had developed, and could be watched. But the problem I have is, why was I the one to realize the possibility of a different diagnosis as to the cause. Sure I was wrong, but doctors having overlooked this, my father would not know he has another issue to deal with. Everything now seemed to stem from either the cancer itself, or side effects from the radiation therapy. But when I thought it could not get even worse, it did.
One of the biggest risks patients face in a hospital, as well as the guests who visit them (including me as I came down with some sort of bug during my father’s care), is the risk of infection. The care necessary for the exit site where the catheter tube is critical in preventing infection. It is critical to make sure that the exit site is kept sterile. It is an open wound with an apparatus coming out of it. But you would never know. The nurse came into the room to change his dressing. The room door wide open, no protective gown, no surgical mask, no sterile gloves, no sterile surface for the supplies or the changing of the dressing. I know how this is supposed to be done as I have seen it done. And this was nowhere near sterile. This actually gets worse, and though I might have stated at the beginning that I was angry enough to drop an “F” bomb, now I am just plain nauseated at the risk my father has been put in. Bad enough he is still dealing with his lung cancer, now he also has to be worried about contracting an infection.
You see, now he is to be cared for at home with his catheter. A visiting nurse will come by every so many days to drain any fluid, and change the dressing once a week. ONCE A WEEK???!!!??? Are you fucking kidding me!!!!!!!!!! We fall on the sidewalk and cut our knee, we change the bandaid every day at a minimum. But have an open wound with a tube coming out of it, and change the dressing only once a week? NO WAY!!! Patients who have drive lines for heart pumps coming out of them have their dressings changed daily, and as sterile as humanly possible. And while I completely disagree with charging family members to play doctor (okay, something we enjoyed doing as kids), because I do not have the degree to be a doctor and am not qualified to be one, I understand our society does not want to pay for patients to be cared for properly. After all, diabetics give themselves insulin shots. Why should we not have to take care of our family member’s wound? Hey, why stop there? We have become such a “convenient self-serve” society we practically have drive through service for birth deliveries. Soon we will be expected to perform our own surgeries by simply having someone tell us what to do. Yes, I am pissed and disgusted by this.
We have been prepared that my father’s home care will not last. At some point, a family member must be shown how to change his dressing and withdraw his fluid. I have experience with this, which is what caused this rant. Less than a day after being released from the hospital, this discussion should not be talked about so soon already. My father has a long road ahead of him, and the last thing he needs is an infections causing a setback and delaying any treatment for the lung cancer. I can see that, why can’t medicine?