Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 4, 2014”

The Value Of A Visitor

It is only common sense to think that the most important people in the hospital are going to be the doctors and nurses. I want to present the argument for the family member as one of the most important visitor of a patient. It can be a spouse, a parent, a sibling, but someone who has spent more time with the patient and knows the ins and outs, the norms, what is right with their family member.

Case in point. My father had gone into the hospital for lung cancer surgery. Everything had gone as well as could be expected for a lifetime smoker with other health complications, but overall, the news we had been given was actually quite good. The surgeons had extracted all of the cancer and though originally not planned, were able to leave half of the lung in tact. My father had spent a little extra time in the recovery room as he did not want to come out of the anesthesia as quickly as the doctors would have liked, but overall, it seemed we would turn the page successfully.

When my dad was brought up to his room, clearly he was not comfortable. This was to be expected after being cut from one side of his body to the other, his one arm being placed above his shoulder for an extended period of time, and unfortunately a few drainage tubes. Medication would help with his discomfort. But by the next day, the doctors would want him moving and eating. It was not happening. The doctors chose to give him a little more time. My father was not fighting them, and for the most part, he was able to communicate with them.

But on the third day I got a phone call from my brother asking me about my father’s eye glasses and if I had them. I told him that I did have them and was bringing them with me later that day. When I asked my brother why, he told me that my father could not see the cup of coffee right under his nose. Though my brother should know better than I, my father’s eyesight is not that bad. But my brother was adamant about it, my father could not see the coffee right in front of him. I got to the hospital later that afternoon, and upon finding out that my father had not eaten, in spite of the food being placed in front of him, hunger should have been an issue after three days.

I noticed he was not wearing his dentures. Maybe this was why he was not eating. “Dad, here are your dentures,” as I had the case in my hand. He looked up at me, “I got ’em in”. We traded “no you don’t” and “yes I do” a couple of times, and then in spite of me holding the open case with his dentures in it, he proceeded to put his hand to his mouth and started yanking at his gums as if he were trying to remove them to show me that they were in his mouth. And then he abruptly stopped trying to show me.

I have heard my father laugh so I know that he has a sense of humor, but he is not a “slapstick” humor kind of guy. My brother witnessed my father’s struggle and we agreed something was not right and brought this to the attention of the nurse who then consulted the doctor in charge who then felt it would be a good idea to bring in a neurologist. I had no idea how that would tie into oncology or pulmonology. But the neurologist came in, took a look at my dad, who at that particular moment offered nothing off-the-wall in form of commentary or behavior, and the neurologist felt there was no issue and moved on.

As time went on, having a conversation with my father was only as long as the attention span of a flea before he would seem to drift off. We would get his attention and resume the conversation. Later that evening, I told my brother that we needed to get my father to eat some how and that I would go down to the cafeteria to get him whatever we could to get him to eat. I knew he liked fried mozzarella sticks and in spite of them being unhealthy, I needed him to eat.

I put them in front of him, and again, he did not even look at them. So I placed a stick in his hand, and he proceeded to take a bite. “Hmm… these are good. How did they make them so soft?”, he asked. I asked, “what do you mean?” He responded, “these carrot sticks…they’re so soft.” I looked at my brother and we were both horrified. Again, my dad does not have that level of sense of humor that both my brother and I possess to make a joke like that. Something was wrong. “Dad, that’s a mozzarella stick.” “No, it’s a carrot stick. It’s orange see?”

Again, my brother and I raised the concern with the nurse who again made the doctor and neurologist return. The neurologist sat down in front of my father with a piece of paper and a pencil and drew five columns of horizontal lines and then handed the pencil to my father and told him to draw a perpendicular line through each. My father happily complied and then said, “finished.” My brother and I looked at each other, then at the neurologist who then said to my dad, “what about the rest of the lines?” My dad said that he had finished what he was asked, and then the neurologist moved the paper two inches to the left and just then my father realized that he had missed the last three columns on the right. “Hmmm…I didn’t see those” and proceeded to cross another two columns missing the third column. We went through the same process one more time.

The neurologist told us, your father has had a stroke, clearly on the left side as he was not seeing anything on the right side. And as he walked, he also veered to the right as he could not see, nearly walking into the doorway in his room.

As we are all told, the key to recovering from a stroke is timing, how quickly it is recognized and treated. My father went for an MRI that evening, fought it, and had to have a CAT scan the following night which revealed not one, but two strokes on the left side of the brain. Just two days before, the neurologist had said that my father was fine. But my brother and I knew something was not right. And these strokes very well may have occurred in the recovery room or during the surgery. We will never know, nor does it matter at this point.

There is more to this story from the recovery point of view, but the point of this post, is proving the value of having family involved as much as possible when a loved one is in the hospital.

The Pollyana

Merriam-Webster’s dictionary defines “pollyana” as “someone who thinks good things will always happen and finds something good in everything”. Okay, I am getting that out of the way first thing of 2014. I am a pollyana. I do want to stress that this particular post is not meant to be a political one, although I am certain that will be at least a handful of comments that will be directed politically. So please excuse me if I do not engage in those. I want to talk about the human side of the issue, medical care.

I believe our country to be one of the best in terms of medical care available. I just wish that it were accessible to everyone, not just the patients, but to the doctors and hospitals all over the United States. We are a society that believes in being humane, yet we constantly turn away patients for lack of insurance coverage, funds, fortunately only certain prior conditions. This certainly is not right. Now here is where I identify as the pollyana.

While the politicians hammer out their differences with the Affordable Care Act, one part of the law that I respect, and truly appreciate, is the insurance part that now covers patients with pre-existing conditions. Patients with serious illnesses for decades faced enough hardships without having to worry if they would not be able to get the health care they needed just because they cashed in their health lottery ticket for another serious health condition.

I remember the first time I was rejected back in 1990 for a job that I had applied for, as well as health and life insurances. I was discriminated against for the job which I later fought with the Pennsylvania Labor Commission, who introduced the newly approved Americans With Disabilities Act, but I was powerless against the insurance companies who had stated that I needed to be in remission of my Hodgkin’s Lymphoma five years before they could consider me for coverage.

So let me get this straight. The moron pen-pushers at the insurance company have dictated that I would be considered less of a risk to insure at five years, even though I would be five years older, hence five years closer to my mortality (which was even more likely a risk than recurrence). This is where I got the first idea in my head that I would be “cured” of my cancer in five years. It was not from the doctors, but rather from the statistic stupidheads at the insurance companies. After all, who best to determine if I would have a long life post cancer… the doctors who treated me, or the dope actuaries at the insurance companies. Well, back in the 1980’s and 1990’s it was those pen pushers that won. Today, it is the Affordable Care Act.

There is no doubt that something needs to be done to control out of control health care costs, whether it be the insurance companies, pharmacy companies, or hospitals. I can acknowledge that there are many who abuse the system by going to an emergency room for simple things that can be taken care of by over the counter means. There are people who do not take better care of themselves by either smoking, being overweight, drug abuse, etc. But I also know first hand, that there are patients that need over-the-top care, diagnostics, extraordinary means to find out what is making them sick, and then to treat and cure them. I am one of those patients who is alive because I had a doctor advocate for a test that is not normally done on a 42 year old male (when the need arose – not my current age now).

At the age of 42, my family doctor, not even a cardiologist as I had not even had the thought of seeing one for the complaint I had raised with my doctor, ordered a nuclear stress test. I had no symptoms of anything that would justify this expensive test right from the gate, but my doctor ordered it anyway. The test saved my life, literally. As my newly acquired cardiologist put it so eloquently, “it wasn’t a question if you were going to die, but when.” I had no time for insurance bullshit appeals. In less than a minute of any strenuous activity the blood flow to my heart was restricted over 90% and being an otherwise healthy 42 year old, I had no reason to suspect anything unusual.

I have learned to trust my body. If something feels wrong, then something is wrong. I have a primary physician who knows this personality quirk about me and is as strong willed with my care as I am. I know the difference between a cold and the flu and when to call the doctor, and I do.

Recently, someone I know who had just completed chemotherapy had developed a cough. At first, it was thought that it could have been just an allergy or even a cold. After all, the Fall weather brings that sort of thing in the Northeast. And antibiotics which had been prescribed seemed to have at least some sort of effect. But when the antibiotics stopped, the coughing increased. From the phone, it was decided to have him see a pulmonologist which only made sense since it was a cough. But the cough got drastically worse, and instead of waiting a few more days for that appointment, a decision was made to go to the emergency room. Long story short, it was not the lungs at all, but the heart.

The immediate reaction is what can a cough have to do with the heart? I know I did. But as it turned out, his heart was effected from the chemo which caused his heart not to work effectively which caused a fluid build up in the lungs, hence the cough. This incident has my friend still dealing with this issue now over two months.

My point is this. I know that there will be those out there that who may complain about the lengths that have been taken to save his life. I know that there will be those out there that will say too much money has been spent. But every decision and every step being taken is keeping him alive. He not only needs that care, he should have that care. And so should everyone. We are a civilized country. We need to let the doctors be the doctors and do what they know. The doctors are the ones in the operating rooms, or interviewing patients. Insurance companies look inside a binder and read statistics and procedures. Insurance companies do not have any clue what color hair the patient has, yet somehow they are the ones that want to call the shots from their books.

Yes, I will admit to being a pollyana. Everyone should have the same access to quality health care and get that care. I am now 48 years old and watching someone half my age go through what he has would devastate me the same as if it were someone twice my age. Our fates should not be determined by pen-pushers trying to make a profit but rather the doctors who know how to make patients well.

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