Life and Death in Intensive Care

 

My Father had a stroke when I was about twelve, and was in and out of intensive care for the next six years. I did not know it at the time, but this first day in the intensive care waiting room, was only one of many days. They seemed never ending, going on forever.

It is 8:03 Saturday morning, waiting in the Intensive Care waiting room begins at 8:00. We are a little late. Visitation with patients is five minutes twice a day. Once in the late morning and once in the late afternoon. That works out to three three minutes for my Mother and two minutes for me. Twice a day.

Two minutes was plenty for me, my Father was in a coma so conversation was not happening. During his last time in coma, I finally man'd up, opened one of his eyes, and told him, "It is okay, you can leave if you want." It was the only "in coma" conversation we ever had, the one way conversation that it was. It was perhaps the longest conversation we had that year.

This was pre-personal electronics time. The hospital waiting room had a television that could barely be heard, which didn't matter as there was only one channel. There were about a dozen chairs for waiting, usually there were less than four people total in the area.

When go in the actual room on Saturday and Sunday, or every day if he's slipping, I see my Father is one of four patients in the room. Calling them patients is generous. Four haggard bodies laying in beds with monitors calling out their pulse, recording their blood pressure. Covered in one sheet, and one thin blanket.

IV's for everyone. If you are an intensive care patient, you get an IV. Besides the saline drip, additional shots are given through the IV. Occasionally the saline solution is changed out for something else. The saline solution becomes a plastic bag of chemical cocktail.

Hanging on the left side of each bed, are catheter bags filling with urine, drop by drop. Urine which is very yellow to tinted red with blood depending on how close the patient is to dying. Every day the bags are weighed to measure fluid flow. I don't know about the bags with blood in them. Maybe they don't bother weighing them.

Beeping machines and ragged breathing are the only noises in the room. All four patients are unconscious. There are no flowers or get well cards. Only one visitor in the room at a time. Just as I can identify the bodies in the bed as actual people, one body is replaced by another body. 

I start to think of them as mute, frigid actors playing a role, and not humans living out their last days in a coma, induced or natural. Generally, they will not leave the room to continue their recovery elsewhere. They go feet first to the hospital morgue, and then on to their final viewing.

Every Saturday, every Sunday, and every day when he takes a turn for the worse I am sitting in that waiting room. Ten hours a day of sitting. My day is broken up by rushed tasteless cafeteria meals that no one ever remembers eating. A few bathroom breaks. No wandering. Riding home with my Mother after six to eat a TV dinner, usually fried chicken, sit around for a while looking at more mundane TV, and off to bed.

During the week days when I am actually in school, I clean house, do my laundry and make dinner. Summer time means cutting the grass. Winter means shoveling snow three days a week or more. Generally we eat frozen TV dinners, but sometimes something simple. What passes for spaghetti, or leftovers from the last time my Mother cooked.

Mornings are pretty routine, I wake to an alarm and get ready for school, my Mother does the same except she goes to work. Usually I eat oatmeal or a couple of raw eggs. Eggs were not a favorite of mine, and raw was better than cooked, gross as that may sound. Conversation is limited. Other than my Father, what is there to talk about?

I missed around fifty days of school my junior year and around fifty days my senior year. I slipped through the schools 'tracking system' until it came time for graduation. My School was not sure I had enough attendance days to graduate. It mattered little that credit wise I was way ahead of the curve. They said they had no idea of my home situation. Eight hundred people from K-12 and I, 'slipped through the cracks'.

Sitting now in a little side room, is my Mother, myself and a nameless Doctor. The Doctor is telling us, this time he has been in a coma thirty days, and as far as they can tell, he will never come out of the coma. With my Mother's permission they want to end life support - pull the plug. How many times can you hear this and make a silent decision you hope you will never be asked about? Rinse and repeat over the previous few years.

On the thirty-third day of coma, he opens his eyes. Rinse and repeat. This time however his stay is short. After three days of being awake, he closes his eyes for the last time. I am mostly emotionless about his death and funeral. It's over - or I checked out.

In his six years in and out of the hospital, he had anger issues. Stroke patients with hair trigger tempers was and maybe is still quite common. His vocabulary never grew to more than perhaps thirty words. "Newspaper" (cigarette) and "Son of a Bitch" being the most common of his vocabulary choices.

Life between hospitalizations was never normal, I was one of two caregivers from about twelve to seventeen when there was no school. What I did for fun was limited in the day time. Those years have become a six year blur with periods of checking or blacking out when the stress became too great, which I did not know of until a few years later.

I spent my teen years onward with white coat syndrome, imagine that. I can't stand the smell of doctor's offices, let alone hospitals. When I need to visit nursing homes, I am filled with a mix of emotions. I know where they are going, and I know how lucky they are not to be there already. 

Then I hope they never make it to the hospital for that final visit, for their sake. Then I pray that I may be a fortunate one. I prefer to miss both stays. However with modern medicine, we generally are not that lucky.

Gluten Intolerance - The Hidden Illness

I spent over forty years of my life not knowing I was [wheat] Gluten Intolerant. One doctor even suggested I was faking an imaginary illness, and wasting his time. Instant Illness and recovery was a roller coaster ride with no explanation.

Gluten intolerance when I was young was practically unknown. My father had it and was not aware of it. In the last year of his life, his stomach would swell, looking like he swallowed a basketball. He would be in great pain from the swelling.

The doctors in our area at the time were ignorant of gluten intolerance. All the doctors agreed on, was when a patient's stomach swelled like that, they had between six months and a year to live. My Father was no exception to that rule.

Though I did not know it at the time, my first symptoms came in the form of brutal hangovers. Most people have a hangover that lasts for part of a day. Mine would last two to three days.

At first I thought it was drinking too much. I paid attention to the amount I drank and found it was what I drank, not how much. If I drank wine, the next day I would feel pretty normal. If I drank beer, it was a totally different story. I would be sick for a couple of days.

In my thirties came my insta-sick problem. I suffered from extreme tiredness at times. Feeling like I had been exercising for hours and was completely worn out. I just wanted to lay down and sleep. For no reason I would feel like I had the flu, minus the fever. It would last anywhere from a few hours to a few days.

Some family members had thyroid conditions, with two having their thyroids removed. I was sure thyroid was my problem. Thus started my search for relief from the Doctor's, "Nothing wrong with you", declarations.

After a slew of doctors and continuing negative thyroid tests, my thyroid was boringly normal. They also agreed en mass I did not have Lupus. One doctor offered Seasonal Area Depression as a cause, but that only explained the winter months. Finally, I gave up on doctors finding what was wrong with me.

I was cruising into my forties around this time. I started keeping a food, exercise and illness log. Nothing seemed to relate to my feeling bad. Whether I ate salads, vegetables, or meat and potatoes, sudden flu like symptoms came and went. I had a cycles of constipation followed by diarrhea. Joint pain joined my list of complaints. Then another oddity. I dropped floaters and they smelled sour almost like vinegar. It did not seem to matter what I ate.

One day I received a call, and the caller told me after five doctors they found a cause for their mood swings and our shared flu like symptoms. What was Gluten Intolerance I asked? I had never heard of it. After it was explained to me, I thought, well this can't be me, I generally eat wheat cereal for breakfast, sandwiches for lunch and bread with dinner and I am okay.

I gave it a try. After four days of no wheat products, I woke up feeling literally thirty years younger. I did not believe it was possible to feel so good! To say eating gluten free is a lifestyle change is to say climate change is a minor inconvenience.

If you go through constant periods of bloating, constipation, convulsive diarrhea, illness and fatigue, you may be gluten intolerant. There is of course a blood test you can take, but the simplest test is go on a completely grain free diet for a week and see how you feel.

Gluten Intolerance is a real problem, and hides itself as a cold, flu, allergy, and food poisoning part of your thinking process. Gluten Intolerance hides very well. There is always a reasonable explanation of why you feel so poorly. It was thought to mostly affect people of European descent, but as the years roll by, they know now people from every nationality suffer from it.

There is a blood test you can get. The easiest test is giving up every food with grain in it including liquids for a week. Read the label of every food you put into your mouth. If after a week of not eating, drinking, or ingesting wheat gluten in all it's forms, you do not feel like a new person, wheat gluten may not be your unknown issue.

Giving up wheat gluten means reading labels of every food you eat, even your soap and shampoo and lotion. If you wear makeup, you need to read the ingredients of it too. When you eat out, there may be wheat gluten on your french fries or in your mashed potatoes. Almost always on breaded foods, such as fried fish. Cheese and ice cream contain gluten because it is a cheap thickener. If you can not identify the ingredients as you look at it, it probably has wheat in some form in it. Thank the food industry for this.

This is taken my own experience with Gluten Intolerance, so take what I wrote for what it is worth. 

Here are a couple of links for further reading, if this is of interest to you:

Hidden Sources of Gluten

8 Foods to Avoid with a Gluten Intolerance (and 7 to Eat)

Sources of Gluten

In my opinion, the food industry is out of control. Almost all, "Oat Cereals" contain large amounts of wheat. Much of the food we eat has some form of wheat gluten in it. About every third bowl of a GMO oat cereal causes me problems. Soaps and shampoos are a minefield of inflammatory dangerous chemicals that make me sick for the sake of profit.