Knock, knock! I Was At Death's Door. And Then I Wasn't, aka The Issue of Turning Off the Life Support Machine Too Early

When I had my hemorrhagic stroke in 2009, my boys knew I had a zest for life from the way I lived it up to that point. I didn't have it written anywhere, but they just knew that I wouldn't want to die then at 60. Having put me in a medically-induced coma with a feeding tube and more wires that seemed to me, at the time, of going nowhere and everywhere, the doctors held little hope that I'd survive at all, and they thought surgery would finish me off completely, and only blood thinners would sustain me, if at all, in the life I now have.  

Reported by The Daily Telegraph, a London newspaper, in 2013, an American study suggested that one third of patients who suffer a specific form of stroke are having their life support machines switched off when they might recover.

The study from the University of Washington Stroke Centre in Seattle looked at two groups of patients who had suffered brain bleeds. They matched 78 patients whose life support was turned off to 78 patients that still had the machines on.

The researchers found that 38% of those who life support machines were utilized after some reasonable time period made a reasonable recovery, and kept progressing. (About 10% of strokes annually are intracerebral hemorrhages (ICH), that is, brain bleeds). But only 4% of those whose life support machines were turned off made this comparable and early level of recovery, despite the fact that the two groups were compared evenly on stroke severity.

Dr. David Tirschwell, the main author of the study and co-director of the Stroke Centre, said, "Greater patience and less pessimism may be called for in making these life-and-death decisions. These results are yet another piece of evidence suggesting healthcare providers may be overly pessimistic in their assessments of these patients' prognoses, leading families to choose withdrawal of life support before the patient has had a chance to recover from their stroke."

Professor Steven Greenberg, chairman of the International Stroke Conference, and professor of neurology at Harvard Medical School, said, "The finding that fully a third of ICH patients in whom life support is withdrawn might otherwise survive is staggering."

A more recent study in 2019 entitled A Fate Worse Than Death: Prognostication of Devastating Brain Injury, by Pratt et al says, 

"[Doctors] should consider the modern literature describing prognosis for devastating brain injury and provide appropriate time for patient recovery and for discussions with the patient's surrogates. Surrogates wish to have a prognosis enumerated even when uncertainty exists. Respect for patient autonomy remains paramount."

Also in 2019, reported by Dr. Robert Truog, is when someone encounters a traumatic brain injury [and stroke is one of them] and is unresponsive, how soon can doctors say if the person has a reasonable chance of recovery? New and stricter guidelines from the American Academy of Neurology prompts making the choice more difficult.

Truog writes that the practice now in most ICUs is to help families make a decision about whether to stop life support within the first 3 to 5 days after the injury. After 72 hours of observation, the physicians are likely confident in predicting a poor outcome as “extensively supported in the literature.” But is that enough time? 

Take me, for example. On life support, my medically-induced coma lasted over a week. And the doctor still wasn't confident of any projected outcomes close to a month later in the ICU. My sons would have been devastated if the doctor recommended stopping life support. I owe my thanks to my sons to counter any thoughts of stopping the machine. And to the doctor, of course, for listening to them.

Brain injury survivors or not, do it now! If you have any future brain injury, write down that you want to live, to enjoy all life has to offer you, for as long as you can. Write it down now to not rush the termination process, and put it on the refrigerator with a magnet. Or place it somewhere else that even a terrible searcher can find it. 

Three to five days is nowhere enough to predict outcomes. I am living proof. 

As Marcus Tullius Cicero, a contemporary of Caesar, said, "While there's life, there's hope." 

Amen to that, brother. 

Brain Fog: We All Get It Sooner or Later, But With Brain Injury, It's REALLY Noticeable

Some of my best friends call it a "senior moment" when they forget, let's say, the name of an actor or a specific date. Some others say it's a "brain fart" when we lose the thread of a conversation. But more commonly, you zone out more often when you have a brain injury. And a stroke is one type of a brain injury in addition to other kinds of brain injuries, like a concussion or auto accidents or assault. 

So welcome to the world of brain fog.

Let me say fatigue is different from brain fog. With fatigue, you "need," rather than "want," a nap. You lie down in the afternoon for a couple of hours and wake up feeling sort of refreshed. Until you're standing, you might wake up and feel that something interrupted your nap--the alarm, in my case. (I set the alarm if I feel fatigued just so I don't sleep too much that will interfere with sleeping at night. I've discovered that two hours before 1pm won't disrupt nighttime sleep. It's trial and error for you until you get it right). 

But brain fog differs. Though it may have overlapping symptoms with fatigue, it's more than just feeling tired. It’s when fuzzy thinking or the inability to feel sharp are present. You feel that you're not yourself in that moment, and slow thinking, confusion, difficulty focusing, forgetfulness, or a haziness are also part of brain fog.

The top five things to do, if you have ruled out medications or other conditions that bring on brain fog, is to examine the following in your life:

SLEEP

The Center Disease Control (and recently added Prevention) says more than 35 percent of US adults are getting insufficient sleep which the CDC defines as less than 7 hours. The sad part is almost 12 percent of Americans are getting less than five hours a night. If you lie down and take a short nap, even a 15-minute power nap, you probably won't compromise your sleeping at night. That's what I do. Here's what the rest of the country's doing, sleep-wise.  

And here's something else that will guide you, coming from the National Sleep Foundation:

• Newborns (0 – 3 months):  14 – 17 hours (with naps)
• Infants (4 – 11 months):  12 – 15 hours (with naps)
• Toddlers (1 – 2 years):  11 – 14 hours (with naps)
• Preschoolers (3 – 5 years):  10 – 13 hours (with naps)
• School-age (6 – 13 years):  9 – 11 hours
• Teenagers (14 – 18 years):  8 – 10 hours
• Young adults (18 – 25 years):  7 – 9 hours
• Adults (26 – 64 years):  7 – 9 hours
• Older adults (65+ years):  7 – 8 hour

CHANGE YOUR DIET TO INCLUDE BRAIN-BOOSTING FOODS

I'm almost vegan now although my son tells me you're either vegan or you're not. He says this because I eat fish, too. Pescatarian works, too, meaning vegetarians who eat fish as well.

Anyway, I've gone plant-based, meaning nothing that has a pulse--plus fish which does. (I can see my son rolling his eyes as he reads this post). My standard diet consists of broccoli, any kind of fruit, quinoa, nuts, and fish. For more information, write to me--hcwriter@gmail.com and I'll give you my complete diet. I feel better now, with brain fog occurring very rarely, twice a year at most!

DE-STRESS YOUR LIFE 

Harvard Medical School says, "Simple things, like a warm bath, listening to music, or spending time on a favorite hobby, can give you a much-needed break from the stressors in your life."

The Chopra Center says, "Recognizing the triggers to your stressful reactions is an important first step in managing your stress. True, it might be impossible to remove life’s stresses, but understanding the things that stress you out—and in what ways—is particularly helpful in solving the underlying problems." 

With brain injury, it's not too difficult to assess. It comes with the territory. So what do I do? Listen to country videos really loud via a headset. Or take a hot shower. Aah.

TUNE OUT WITH A MINDLESS ACTIVITY

If you don't know what qualifies for a mindless activity, you can spend $6 and buy this book on Amazon. Mazes and coloring books and gardening are included. But you have to be a Prime member. If not, the book will cost you more.

The other option is free. Putting away dishes from the dishwashers, folding the laundry, playing a video game, practicing tying my shoelaces one-handed, or reorganizing all the overflowing stuff on my desk that I do is all mindless. No charge for borrowing from my list!

As Odelya Gertel Kraybill, Ph.D., says in Psychology Today, "Survivors need to reconnect to spontaneity since it’s essential to the experience of  joy.  A powerful strategy for this is what I call intentional mindlessness. When we engage in mindless action, whether playing sport or other games, dancing, drawing, hiking, singing or playing music, or any other activity that absorbs us in a fun and playful way, our spontaneity increases."

EXERCISE

The Mayo Clinic offers this list and sums up all the good elements about exercise:

• It pumps up your endorphins, the brain's feel-good neurotransmitters.
• It's meditation in motion. You'll often find that you've forgotten the day's irritations and concentrated only on your body's movements.
• It improves your mood. Regular exercise can increase self-confidence, it can relax you, and it can lower the symptoms associated with mild depression and anxiety [leading to brain fog]. Exercise can also improve your sleep.

The Mayo Clinic also reminds us that :

• Do what you love. Virtually any form of exercise or movement can increase your fitness level while decreasing your stress. The most important thing is to pick an activity that you enjoy. Examples include walking, stair climbing, bicycling [I have a recumbant bike, thanks to my kids], yoga [there is armchair yoga, too, where you sit down while performing yoga], gardening, and swimming.
• Pencil it in. Carving out some time to move every day helps you make your exercise program an ongoing priority.

So there you have it--five way to lessen brain fog, or eradicate it altogether. But you can't pick and choose. Try all five for a month. What do you have to lose? Yeah. Nothing.