Maintaining the engine

February is Heart Month and the American Heart Association does a great job getting the word out about heart disease. It’s important information and we are lucky to live in the time and place we do because doctors have gotten really good at fixing hearts.

Most of the time.

Long before my brain blew up, I was diagnosed with heart disease. It was a no brainer for physicians because I have a strong genetic link to heart disease on my dad’s side.  So are aneurysms, but those are harder to diagnose than heart disease.

While in my 20s, I’d have unexplainable bouts of high blood pressure that would go away. In my early 30s, doctors wondered why my heart beat too fast. It, too, would go away, come back, go away. By my late 30s, my diastolic readings were steadily, gradually elevating. In my early 40s and at the doctor’s office for a sinus infection, my doctor took my blood pressure several times, listened to my heart a lot and said, “I’ve had enough of this. It’s time to get you on blood pressure medication.”  

Dutifully, I took blood pressure medication daily. The problem? It didn’t work as well as my doctor hoped.  Basically, the lower reading was a stubborn sucker. With medication, my blood pressure went from 125/105 to 118/95.

Then my brain blew up.

Doctors and nurses at the National Brain Aneurysm Center saved my life. They clipped and coiled, clipped and coiled, clipped and coiled until, eventually, all of the ticking time bombs were gone. In the midst of those surgeries, a magical thing happened: My blood pressure problems disappeared.

Today I can boast readings that make everyone my age envious: 107/65, 110/72, 105/73…

The brain is the engine that drives the body. It tells the lungs to breathe, the eyes to blink and the heart to beat. The lesson: Take care of your heart, but don’t forget about your head. 

Thinking about `what if…’

Happy New Year!

December blew by in a rush. Cookie baking. Some pre-holiday gatherings.  Cookie baking.  Holiday decorating. Cookie baking. Cleaning and furniture rearrangement.  Cookie baking. Snow shoveling. Vile flu and a headache that lasted eight days. Cookie baking. Pre-surgery preparation.  Holiday celebration. Eldest and youngest sons swooping in to “help.”  Finally the much-anticipated highlight: my husband’s hip replacement surgery.

Frankly, I’m exhausted. I’m also amazed at the amount of  “stuff” hip and joint replacement patients accumulate prior to surgery. My husband’s pre-surgery preparation list included elastic shoelaces; grabbers of varying lengths; canes; toilet risers and shower grab bars; shower seats; incredibly long shoe horns; and those odd-looking gizmos to pull on socks.  Oh, let’s not forget the walker.  It has a seat, a basket, hand brakes and night reflectors.  Just add headlights and a John Deere motor and he’s street legal.

Among the things he had to do prior to surgery: Make out a Health Care Directive. Like many of us, he had stubbornly avoided thinking about “what if….”.  But it’s so important to have one—and I learned that the hard way.

When my brain blew up, the Health Care Directive forms were in my office buried with other paperwork in my “To Do” file.  While in ICU those first few days, I floated in and out of sleep. Although much of it remains a blur, I was very worried about unfinished business.  When one of the hospital’s social workers came, I remember a sense of relief.  She brought the forms and in a soothing clear voice, explained each option, checked my selections, and rearranged my bed tray so I could sign it.  

We all should make out a Health Care Directive—and we should do it long before we need it. But human nature is mysterious and, too often, we procrastinate “should” until it becomes “must.”

As for my husband’s surgery?  It’s been much more of a blessing than a curse. His surgeon is unbelievably talented and skilled.  St. Joe’s orthopedic nurses were fabulous. The home health nurse and physical therapist are grand.  My husband’s hip doesn’t hurt at all. In fact, he’s getting around better than before his surgery. Only one question remains: What are we going to do with his tricked-out walker?

Making a plan

My grocery list is getting longer as the holidays approach.  Awhile back I mentioned my problem with grocery shopping and was reassured by your comments that I was not alone.  Apparently grocery shopping is a brain drain for many of us who’ve had aneurysms. Perhaps we could share some helpful hints?

What seems to work best for me is timing and mapping. After struggling through the exhaustion of Cub and Rainbow, I decided to shop at a grocery store that was more manageable in size yet moderate in price. Because I live in White Bear Lake, I chose Festival.

Using grid paper from my son’s days in geometry, I created a rough map of the store starting at the entrance (flower mart, quick deli and bulk sales), ending at the checkout (bakery and books).  It’s a general map, and items aren’t always shelved logically, so it’s not perfect. But it helps.

At home, I take my list and reorganize it on 3×5 cards using the map. The first 3×5 card includes the bulk sales and fresh produce.  The next one takes care of half of the aisles in order. Another card lists meat and dairy. The last lists snacks, freezer, and bakery items. If I have coupons, I clip them onto the cards.

I’ve learned that, by taking extra time at home mapping my list to the store, I spend much less time traipsing up and down the aisles. In fact, I can skip some of the aisles depending on the list. As for backtracking through the store for something missed or forgotten?  It almost never happens anymore.  The exception, of course, is when items get moved (sigh).  Or I need something the store considers unusual and it is shelved in an illogical place. 

As for timing, I try to shop for groceries on weekdays before the 9-5 crowd gets there.  I’ve been known to drive to the store, see a full parking lot, turn the car around and drive back home.  Why ask for trouble? There’s always another day and time to shop.

I didn’t like grocery shopping before my brain blew up and I sure don’t like it now.  If you have any helpful hints that YOU’VE learned, I love to hear them. Surely there’s a way we survivors can help each other ease the brain drain.

Keeping track of all the trips

Last week was a “trip.” I had a trip to my dentist, a trip to my family doctor, a trip to the optometrist and a trip to get the metal in my head checked.  When I heard the doctor say, “You’ve had a lot of work done,” I’m sorry to admit that I mixed up the week’s medical players and thought the dentist was talking.

Oops.  Wrong doctor.  Let’s blame it on the relaxation medication I was given.

Aneurysm treatment today involves either metal clips or metal coils. What’s used depends on the shape and size of the aneurysm, the recommendation from the team of doctors and the patient’s final decision.  

Clips are put in place by a neurosurgeon who performs an open craniotomy. It’s a permanent fix that involves about a week of hospitalization.  Altogether I have eight clips.

Coils are done by a neuro interventionist who threads the metal from the femoral artery into the brain aneurysm. I have four coils. This less invasive technique involves just one or two nights in the hospital and recovery is a breeze. The downside is that coils need to be checked every now and then to make sure they are doing their job. They are checked with a cerebral angiogram.

My last cerebral angiogram was 18 months ago. Since then, St. Joseph’s opened its new National Brain Aneurysm Center. What a difference! A procedure I was dreading turned into a trip that was surprisingly easy and pleasant. 

Let’s start with my team of caregivers. They were a perfect blend of kindness, friendliness, humor and exceptional skill. Dr. James Goddard was excellent about getting the job done without any surprising brain burns (the dye burns a little when it hits the brain and it burns a whole lot more when you aren’t expecting it).  Most surprising? The hours spent laying flat in bed after the angiogram were not as boring, noisy and chilly as I remembered. Instead I had a nice lunch, a quiet private room for naps and cable TV, and self-controlled warmth from a fabulous invention called a “warming gown.”

I won’t need another recheck for 18 months, so the results of that medical trip were good as well as pleasant. I wish I could say the same for my last trip of the week.

Two days after the cerebral angiogram, I flew to Pensacola, Florida, to visit my son at the Naval Air Station.  I anticipated a few days of warm fun with a family military ball and Blue Angels soaring through the skies. Instead, Hurricane/Tropical Storm Ida swooped in and stormed out, washing away planned activities and balmy sunshine. With temperatures in Minnesota warmer (and drier) than those in Florida, I wished more than once for the warming gown I had worn at St. Joe’s. 

Navigating grocery stores can be a chore

The Brain Aneurysm Support Group at St. Joe’s is high on my “must attend” list. At a recent meeting, our group spanned the decades in age.

One delightful young man was just a few months into recovery. A beautiful young grandmother has an aneurysm that isn’t yet fixed. Some of us have had many aneurysms clipped and coiled. Others have dealt with one or two. Despite our many differences, we share lots of common group, including a great sense of humor and a loathing of grocery stores.

Grocery stores? Yes. Anyone who has recovered from a ruptured brain aneurysm, brain surgery, a stroke, a concussion, a migraine or just a clunk on the head knows about the dreaded trips to get groceries. 

Supermarkets cover thousands of square feet. Lighting is less than friendly to our eyes. Noise comes at us from everywhere—overhead music, announcements, other shoppers, squeaky wheels on carts.  (Is that MY cell phone ringing or someone else’s?) As we shop for our items, we constantly check our lists and coupons, scan bins and shelves, compare prices and brands, steer around displays, and try not to bump into other shoppers.

Getting groceries is, at best, a multi-tasking challenge.  Just when we learn where everything is located, stores move some of the items to a different aisle or display. When that happens, grocery shopping becomes a nightmare.

Yesterday we shared some of our grocery-shopping experiences, frustrations and fears. We offered each other a few ideas to lessen the angst. We laughed a lot.  

Because Thanksgiving and Christmas Eve fall on our usual meeting day, our last meeting for 2009 will be December 10.  If you have a brain aneurysm or have had one fixed, if you’ve ruptured an aneurysm or care about someone who did, you are welcome to join us. It’s free of charge. Just call Tess at the National Brain Aneurysm Center. She will send you a parking pass and make sure there are enough coffee, tea and cookies to go around. Who knows? Maybe YOU can solve our grocery store dilemma!

It is the effort that counts

The weather forecast was for “frost on the pumpkins.”  Unfortunately, the forecast was right.

In the world of gardening, it’s a forecast that causes me to spring into action.  Some plants need to be put to bed. Others must be brought inside. The colorful annuals get a regretful look with words of thanks and goodbye.

I concentrate on the plants I hope to save—geraniums, mandovilla, pathos, philodendron, hibiscus, asparagus fern, Swedish ivy, spider plants, and shamrock.  I know that, with good care, many of these will do fine inside once they get over their shock. Others will struggle, lose their leaves, and need lots of gentle tending. Some, regardless what I do, might die.  

While I was outside a neighbor walked over and pointed out that it would be easier to let the cold kill them all and just start with new plants next spring.  “Why bother?” she asked.

I set down my trowel and thought about it.

“I suppose I do this for the same reason my doctors and nurses work so hard.” I said. “If they hadn’t bothered to try to save me, I wouldn’t be here repotting a shamrock I’ve had for 32 years, or hauling in this 10-year-old geranium. We wouldn’t be even having this discussion.”

My neighbor laughed. “Good point,” she said.

By the end of the day I had one pot left. In it I could put yet another spider plant (it had been a VERY good year for them). Or … I eyed the hibiscus. It hadn’t bloomed this summer. In fact, one of its branches looks dead, one is fine and the other is bare but getting new growth. Should I use my last pot for a sure save, or should I try yet another year to save this once-beautiful, now pathetic plant?

I thought of my neuro surgeons and nurses, of effort /risk vs. a sure bet/ win. Then I filled my last pot and brought it inside. Which plant do you think I picked?

Thinking ahead

I saw a recent news article where experts in adolescence health care are advocating head images for all teenagers. They want better screening for kids who have depression.  Selfishly speaking, I hope these experts get their way.  

Think about it. Science has given us the ability to see inside our skull! Depression can be helped, so it is important to get these kids on treatment. But adult brains are important, too!

Statistics show that 1 in 20 people have brain aneurysms. This statistic is roughly the same as the number of teens with depression. Why can’t we screen everyone?

 Just one MRI  would have proven to my family doctor that my fatigue and depression-like symptoms were not caused by “getting older” or poor attitude. Yes, the MRI would have been expensive. Yes, I still would have needed surgery to fix the little suckers that pulsed like silent time bombs in my brain. But an MRI before my brain blew up would have avoided that whole near-death experience and the resulting 30-plus days in the intensive care unit.

Look at it this way: Saving my lowly, single brain cost about the same as 25,000 MRI’s or 50,000 head CTs. Compared to many people who rupture a brain aneurysm, my bill was not too bad. Despite the fact that my head went through two strokes and three brain surgeries, I needed no extra hospitalization for rehabilitation. Nor did I need months of outpatient therapy to get my pesky brain cells back in sync.

Experience tells me that screening the brain is a better alternative than misery or death. What do you think?

Recognizing Miracles When We See Them

San Diego, here we come! Our youngest son, the Grand Finale, is graduating from boot camp into the Marine Corps. It’s an accomplishment few achieve.  We are proud of him.

The fact that he made it through such grueling physical and mental challenge is amazing. It’s a miracle, actually. When he came to our home, he was one day shy of his first birthday and weighed a scant 12 pounds. In this era of robust babies and toddlers, he was so small his height and weight wasn’t even  listed on the medical growth chart for his age.

Sadly, his size was not as puzzling as his strength. He could barely sit without support. Walking? No way. This little guy couldn’t crawl much, let alone stand.  So I took him to his doctor, a highly respected pediatrician. That doctor checked over the little guy and told me, “Don’t get your hopes up. He was born a low muscle-tone baby and he will always be a low muscle-tone kid.”

WHAT? GIVE UP? Was this God’s plan for the boy?

I remember bundling up the Little Guy and saying, “I can’t believe you pre-destine children.” The next day our family doctor gave that foster baby a going over, discovering elevated lead levels, anemia, RSV and a slightly clubbed foot.  When we adopted him three years later, our boy’s cheeks were rosy, his eyes bright, his smile mischievous, his weight and height smack in the middle of the growth chart. Could he walk? You bet. Run? Like the wind. Climb? Like a monkey. In short, the low-muscle-toned kid was gone. Taking his place was a boy with incredible strength, humor, resiliency and determination.

People said it was a miracle. For a long time I agreed. But now, having defied the odds of survival myself, I see that miracles don’t just happen. They are created.

Would our boy have grown into Marine-caliber strength if I had believed his first doctor’s prognosis? Would he have played hockey, football and lacrosse if I told him he would never be strong enough to compete? Would I be alive to fly to San Diego for his all-important graduation if my own doctors had given up on me? What if they believed the odds of my survival were too dismal to overcome?

Every day is a new adventure. Some adventures are challenging, scary and hard. Others are exciting, easy and joyful. But if we don’t embrace all of our adventures and take each journey with spirit, optimism and resolve, how will we know what can happen?

Watching for Signs of Trouble

It has been a strange summer here in Minnesota. Not nearly as hot as it should have been, more rain than normal and a much longer allergy season.  The fuzzy, thick-headedness I get from allergies reminds me now of how tired and thick-headed I felt before my brain blew up.  The truth be told, that feeling makes me a bit nervous today. 

Looking back, I see a whole collection of symptoms that should have been a red-flag. The problem is that, in my case, the symptoms were easily excused by me and my family doctor as “just getting older,” and “stress.” I suspect my experience is the common norm.

What were my symptoms?

1. Fatigue. I was so stinkin’ tired all of the time. The tiredness snuck up on me over a time span of many years. Born with tons of focus and energy, I kept on a-going, much like the Energizer Bunny.  But it was getting harder and harder as the years and months passed.  A year before my brain blew up, I asked my doctor about the increased fatigue.  She told me I was getting older. Six months later, I insisted something else must be causing it, so she ran some thyroid tests. The tests came back normal. At that point, she asked about my emotional health.
2. My body’s temperature-control ability was way out of whack for several years. Long after they should have stopped, hot flashes woke me up at night and flooded over me during the day. On the flip side of that, cold would shiver through my body — even during 80-degree days. When I asked, my doctor told me that some women keep having hot flashes into their 70s. Hearing that was enough to MAKE me depressed.
3. My blood pressure kept creeping up even though my weight was normal. High blood pressure runs in my family, so I accepted this condition as being my genetic curse. Even with medication, my lower number would barely drop into the 80s. I heard a lot about stress and healthy heart living from my doctors.
4. Headaches. For 20 years, I carried a migraine medication with me at all times because the occasional light-flashing, puking headaches were terrifying.  Nearly every day, I’d have a bit of a headache. But ibupropen took enough of the edge off the headache so I wasn’t worried. Everyone gets headaches, right? Besides, my headaches skipped location. Sinus headaches? Sure. Stress headaches, probably.  Sleep-deprived headaches? You bet. Headaches were so normal for me that I didn’t mention them too often to anyone. These mild headaches were much more frequent and constant in the weeks before my aneurysm ruptured. But ragweed and nettle season was nearly upon us, so I figured the headaches were due to allergies.
5. Speech oddities. Normally quick and precise in my language skills, I began noticing times when I was having trouble finishing the ends of my sentences.  Sometimes, I’d forget WHAT I was going to say.  Most often, I’d get lost in the thought I was trying to say. This didn’t happen all of the time. But it happened often enough that I wondered about having an early form of dementia. My husband insisted I ask my doctor about it, so I did. She diagnosed mild depression and prescribed medication.
6. Eye issues. In the months prior to my brain blowing up, I noticed that my left eye saw brighter colors than my right eye. Weird, huh? I’m ashamed to say that I didn’t think it was a big deal. I could still SEE out of both eyes. My lifestyle was not affected. And I was getting tired of going to the doctor and being told I was getting older. I decided to wait for my yearly eye appointment. That was a big mistake.
7. Pressure and tightness at the back of my head near the base of my skull. This was something new and different for me and it came on just days before my brain blew up. At first I thought I had slept wrong or pulled a muscle while gardening. The pain wasn’t horrible—just annoying, constant and odd.  I remember wondering whether I should have a doctor check it out.

Hindsight is a great and humbling teacher, isn’t it? I know now that, viewed collectively, my symptoms pointed directly to brain aneurysms. Viewed separately over a span of years, each symptom was easily diagnosed as something else: getting older, stress, lack of sleep, allergy season, lifestyle, depression, etc.

Like many women, I kept on going. I worked, cooked, and took care of the house, yard, pets and family. As the symptoms grew, I kicked myself into putting a positive, humorous spin on growing older. See a neurologist? The thought never crossed my mind.  Instead, I wondered whether to buy a better mattress, start a diet, drink less coffee, lift weights, or see a counselor. I KNEW something was wrong, but what?

It would be tempting to blame my family physician for missing 13 brain aneurysms crammed into one head.  The fact is, family doctors are trained to diagnose single symptoms, not the mysterious collection of symptoms that brain aneurysms exhibit. If blame is to be made, point to me. I nearly lost my life and it was my own fault.  I was too nice, too quick to make jokes, too willing to make excuses, and much too ignorant about the importance of my stroke-prone family background.

Today the birds are singing and the trees are budding. It’s a beautiful day. My head feels a bit thick and it reminds me of how I used to feel.  But I’m clear-headed, too. I know that an antihistamine will work and the allergies will pass. Unlike before, I won’t keep feeling worse and worse.

When Lightning Strikes, You Have to Act

I had a brain storm during dinner one hot July evening. Lightning cracked inside my head. Hot tingling electricity sparked and thrummed throughout my brain. My 17-year old son put down his fork and asked if I was okay.

I remember saying, “No. I don’t think so.” Read the rest of this entry »