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When a Smashed Bottle is Cause for Gratitude: 17 years After Stroke

Yesterday, as Jack & I were finishing a late brunch, I glanced at the paper. January 30. My stroke anniversary date — seventeen years since my life was upended by stroke and antiphospholipid syndrome (APS), the nasty autoimmune disease that turns my blood to sludge.

Back then, it felt like my life was over. I never would have guessed I had even seven years left, much less seventeen. I fought brain fog, fatigue, a shredded memory, attention deficit, garbled speech. Because my right hand has almost no feeling, I couldn’t type or tie my shoes, or turn a key in the lock. I lived on a tightrope, dependent on high doses of blood thinner to prevent another stroke but with the constant threat of bleeding.

I grieved not just the loss of capability, but the loss of myself. After a year, I could no longer remember who I’d been before.

But slowly, with time and therapy—and much hard work—I regained some of the capabilities I lost. I cultivated some new qualities, chief among them greater patience with myself. With Jack’s help, and the optimism learned from my father, I found the grit to travel off the beaten path. I found the courage to feel lucky, to tamp down the fear that life-threatening accidents lurked around every corner.

Yesterday, when I realized what day it was, I sat at the breakfast table and gave thanks for the marvels of those seventeen years. Walking the floor with four new grandchildren. Standing soaked in the mist and awe of Brazil’s Iguaçu Falls. Basking in the silence of a dervish’s dance. Celebrating twenty-five years and more than fifty countries visited with with Jack. Finding time and voice to write.

I took a breath and a long, calm moment to feel grateful on that, the anniversary of one of the worst days of my life.

Back to reality, I cleaned off the breakfast table. Jack had cooked, so it was my turn to do dishes. I carried the condiments to the kitchen counter next to the refrigerator. Reaching into the refrigerator with an almost-full bottle of salsa, I looked away for just a moment, forgetting to use my eyes to see what my hand cannot feel. That’s when the bottle slithered from my grasp and exploded on the tile kitchen floor.

The sudden thunk, the splat, the flying tomato gore, chunks and shards of glass sailing all the way into the dining room.

Micro pieces of glass as fine as sand were everywhere, even stuck to the bottom of my shoes. There followed the conundrum of “how to clean up glass while on blood thinners.” The answer, of course: very slowly and carefully—with lots of paper towels and help from Jack and his powerful shop vac.

With the mess finally cleaned up, I headed to my office to work. My cell phone rang, a doctor’s office. I noticed the time: 2:10 pm.

A woman’s voice: “I had you down for an appointment at two o’clock.”

Me: “Oh, I think there’s a mistake. I am sure I made that appointment for Wednesday.”

Her: “Yes. Today is Wednesday.”

I looked up, for a moment as lost in brain fog as I’ve ever been.

Even after seventeen years, some things can’t be fixed.

All I can do is chose to live in gratitude for what remains. And I do.

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Why You Need to Know about Antiphospholipid Syndrome—APS

burgundy_ribbon 2 enhancedWhen I was diagnosed with antiphospholipid syndrome in 2002, I  felt like I’d fallen into a bad sci-fi movie. I’d never heard of APS; even most of my doctors had never heard of it. I had a hard time finding information about it. There was no “national society of …” The best source of information I found was NORD—the National Organization for Rare Disorders.

Although APS is still listed in the NORD system, it turns out that APS really isn’t rare. At the time, 16 years ago, it wasn’t very well known. But research and increased awareness have greatly expanded our understanding of APS.

The reason you should care is simple:

Antiphospholipid Syndrome—APS—is dangerous and much more common than first thought.

 

It’s now estimated that one to five percent of the general population has APS.

That’s about two to six million women in the US, comparable to the number of women living with cancer.

There is now an organization, The APS Foundation of America—founded in 2005—that promotes antiphospholipid syndrome education, public awareness, research, and patient services.

These statistics from the APS Foundation of America demonstrate the seriousness of APS as a health problem—particularly, though not exclusively—for women:

  • APS is the No. 1 cause of strokes in young people.
  • One third of strokes occurring in people under 50 are due to APS.  Mine was one of those.
  • Estrogen in the form of birth control pills and hormone replacement–perfectly safe for most women–can be deadly for women with APS.
  • 20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
  • 10-25% of women with recurrent miscarriages have APS.  If properly diagnosed and treated, many of them will be able to deliver healthy babies. That was not the case in years past. Undiagnosed APS is  the reason I was not able to have children.
  • APS is a major women’s health issue: 75-90% of those affected by APS are women.

 

The hallmark of APS is a tendency for blood clots to form when they shouldn’t. Patients who’ve had repeated blood clotting episodes should ask their doctors about testing for APS.

Learn more about antiphospholipid syndrome on my APS resources page.

But if you or someone you love has APS, don’t despair. APS is treatable, primarily with drugs like aspirin, Coumadin (generic warfarin), and other blood thinners.

Related Posts:

 

Coming up:

  • APS symptoms
  • How APS is diagnosed
  • How APS is treated
  • Resources for APS patients
  • Blood thinning: it’s more complicated than it looks
  • Living with Coumadin
  • Why I rejected the new blood thinners like Xaralto.

 

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Hospital PICC IVs can pose blood clot risks

dreamstime_m_8861228Check in to a hospital, whether for illness or tests, and an  IV is almost sure to appear. They’re everywhere, delivering fluids and potentially live-saving drugs to patients.

The “normal” IV, called an  intravenous catheter, delivers medicines into a vein near the skin surface.  It can be safety left in place for 3-4 days.

If the treatment must go on for longer—for example, chemotherapy or long-term antibiotic or cancer treatment, hospital sometimes use a PICC line (peripherally inserted central catheter), photo above. With proper care, the PICC line can be left in place for months.

According to Vineet Chopra, University of Michigan assistant professor of Internal Medicine and a leader of a recent study, PICCs are much easier to use than normal IVs. Because PICCs can stay inserted for longer than other IVs, Chopra said patients can go home with them, resulting in less time in the hospital and added convenience for the patient. Furthermore, PICCs can reach all the way to the heart, whereas normal IVs end in the arm.

But PICC lines pose a risk for blood clots that can be especially severe for patients who have already had clotting problems.

In a recent study by the University of Michigan, almost 30 percent of patients with PICC lines developed blood clots. Patients who had any kind of surgery during their hospital stay, or had had any kind of deep clot in their medical history, were more likely to get a DVT (deep vein thrombosis) associated with their PICC.

The results, says Chopra, suggest that doctors should use PICCs only when they really need them – and that they should tread carefully when considering PICCs for certain patients, monitor for clots, ensure patients continue taking aspirin and statins that they were already on, and take the PICC out before any operation.

Patients should feel empowered to ask what kind of IV device they’re getting, and what risks it carries, before one is placed, he says. Once a patient has a PICC, it’s important that they know what symptoms might indicate they have a clot – and to ask when the PICC can come out.

I’m glad to know this. As an APS patient with a history of blood clot in the brain, I want to reduce my risk of clots any way I can. That means avoiding PICC lines unless they’re absolutely mandatory. And if  I’m ever forced into a PICC line, I’ll know to make sure my medical team is extra vigilant in clot prevention.

For more information about the University of Michigan Study, look here: http://bit.ly/1FMyo6I

 

 

 

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What the *^## is Antiphospholipid Syndrome–APS?

I felt like the doomed heroine of a bad sci-fi flick, zapped by zeta rays from planet Krypton when, a few weeks after my stroke, I first heard my unpronounceable, incomprehensible diagnosis: ‘antiphospholipid syndrome.’ I’d never heard of APS. Nobody I knew had ever heard of APS, even most of my doctors had never heard of APS. Many of them still havn’t.   Excerpt from Anne’s memoir

Anne AS log min text rev 3APS is sometimes called “sticky blood” because it causes an increased tendency to form blood clots in the veins and arteries. Clotting can lead to serious health complications ranging from miscarriages and migraine headaches to blood clots in the legs, in the lungs, heart attacks or, in my case and many others’, stroke.

Here are some important facts about Antiphospholipid Syndrome:

  • APS is a blood clotting disorder that causes the blood to clot when it shouldn’t.
  • It does this by signaling the immune system to make antibodies to attack blood proteins called phospholipids (phos-pho-lipids). These proteins help moderate the body’s natural blood-clotting process so it stops when it should. Thus the name: anti (against) phos-pho-lipids.
  • I think of it this way: the APS antibodies are like out of control PacMen, dashing through my blood gobbling up the good little minions who help put the brakes on my clotting system.
  • In the UK, APS is called Hughes Syndrome, named after Dr. Graham Hughes, the professor and Lupus specialist who first described APS in 1983. I rather wish we called it Hughes Syndrome in the US, too. It’s a lot easier to learn and think about something I can pronounce.APS awareness month stamp
  • APS is a common cause of miscarriage, blood clots in the legs (deep vein thrombosis), the lungs (pulmonary embolism), the heart (heart attack), and the brain (stroke).
  • APS is also an autoimmune disease, because the antibodies that attack our blood proteins are attacking parts the ‘self’ instead of invading organisms like virus and bacteria.
  • Like lupus and other autoimmune diseases, APS can “flare” at times, causing weakness, fatigue, achy muscles and joints, especially when we’re tired or stressed.
  • Because most patients with APS take some kind of bloodthinner, we must try hard to avoid bleeding accidents. For some of us, this is one of the most vexing aspects of the disease: walking a line between blood that’s so “thick” it causes clots, or so “thin” it causes abnormal bleeding.
  • APS is sometimes found in conjunction with other autoimmune diseases, particularly lupus.  It’s estimated that 50% of Lupus patients also have APS. (Johns Hopkins Lupus Center)
  • APS can also occur on its own. This is called primary APS.

 

Learn more about antiphospholipid syndrome on the APS resources page.

Coming up—Information on:

  • APS symptoms
  • How APS is diagnosed
  • How APS is treated
  • Clearing up confusion about APS: Questions I frequently hear from other  patients
  • Resources for APS patients
  • Blood thinning: it’s more complicated than it looks
  • Living with Coumadin
  • Why I rejected the new blood thinners like Xaralto.

 

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My Introduction to Antiphospholipid Syndrome

EDITED APS living with

 

My experience with Antiphospholipid Syndrome—APS—began thirteen years ago with the cataclysm of a stroke. As the new year opened, I was 48 years old and the picture of health: a trim, fit, non-smoker with perfect blood pressure and no obvious risk factors any disease I knew of. I had a challenging consulting practice in marketing and public relations.  My grandparents and great-parents had lived to healthy old age; I imagined that would be my future, too.

Then—out of the blue—I was slammed by a full-on a stroke. On that eerie morning when the stroke hit, I was lost in a mental whiteout, unable to remember my address, my husband’s name, or how to dial 9-1-1. I had no idea what was wrong. Alone in the house and profoundly confused, but not yet panicked, I managed to get help by dialing “O” for an operator. The terror set in when I tried to speak and realized my words were nothing but gibberish. My heart thumped. Oh, God. She’s going to hang up. She must think I’m a kid playing with the phone, or a crank, or a drunk. Instead, the operator traced the call and sent an ambulance.

When the paramedic told me he thought I was having a stroke, I thought he was nuts.

Of course I’m not having a stroke, I wanted to tell him. Strokes are for the elderly, for smokers, for overweight couch potatoes. I’m forty-eight years old, fit, and perfectly healthy. Perfectly healthy people don’t wake up one morning and have a stroke. But the words were trapped in my head.

At the hospital, the ER neurologist was also stumped. She’d learned that I was taking birth control pills, which can be a risk factor for stroke. But when all my tests of heart and lung function were normal, she still wasn’t satisfied. Somehow she doubted birth control pills told the whole story.

Three weeks after the stroke, she sent me to a hematologist who, after more blood tests and a very detailed health history, diagnosed Antiphospholipid Syndrome­–APS–on the spot. How? For at least 20 years, he told me, I’d had subtle symptoms that pointed to an autoimmune illness and APS.

As part of APS Awareness Month, here are some topics to be aware of:

  • What is APS?
  • APS symptoms
  • How APS is diagnosed
  • How APS is treated
  • Resources for APS patients
  • Blood thinning: it’s more complicated than it looks
  • Living with Coumadin
  • Why I rejected the new blood thinners like Xaralto.

 

I hope you’ll check back. And, if you or someone else in your life has APS, I’d love to hear about your experience.

 

 

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Get the scoop on APS, the clotting disorder than caused my stroke

I was slammed out of the blue ten years ago by a stroke that could have been prevented if I’d know the facts. Don’t let that happen to you or someone you love. Today, June 9, is APS awareness day – APS, the acronym for Antiphospholipid Syndrome, the blood clotting disorder that caused my stroke. It’s a great day to start learing the facts.

I remember feeling like the doomed heroine of a bad sci-fi when I first learned the cause of my stroke – an unpronounceable, incomprehensible disease: ‘Antiphospholipid Syndrome,’ or APS. I’d never heard of APS. Nobody I knew had ever heard of APS, even most of my doctors had never heard of APS.”

 APS can be life threatening.

Here are the facts:
• APS is a blood clotting disorder. In patients with APS, the body releases antibodies that cause the blood to clot when it shouldn’t
• As a result, APS is a common cause of miscarriage, blood clots in the legs (deep vein thrombosis), the lungs (pulmonary embolism), heart attack, and stroke.
• It’s also an autoimmune disease. Like lupus and other autoimmune diseases, APS can “flare” at times, causing weakness, fatigue, achy muscles and joints, especially when we’re are tired or stressed.
• APS is sometimes found in conjunction with other autoimmune diseases, particularly as lupus.

You may not have heard about APS, either, but you need to know.

Here’s why:

• One third of strokes occurring in people under 50 are due to APS. Mine was one of those.
• Estrogen in the form of birth control pills and hormone replacement–perfectly safe for most women–can be deadly for women with APS.
• It’s estimated that 15-20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
• Some 10-25% of women with recurrent miscarriages have APS. If properly diagnosed and treated, many of them can have healthy full-term babies.
• APS is a major women’s health issue: 75-90% of those affected by APS are women
• APS isn’t rare. It’s estimated that one to five percent of the general population has APS.

That’s about two to six million women, comparable to the number of women living with cancer.

Awareness is growing. When I started trying to research APS in 2002, shortly after my stroke, the only information I could find was a booklet from the Hughes Foundation in England and Medline articles heavy on doctor-speak.

My resource page  has further information about APS. Even more information is available from  the APS Foundation of America as well as trusted medical sites like the Mayo Clinic, the the National Institute of Neurological Disorders and Stroke (NINDS), and genome.gov. APS now even has its own Wikipedia page.

There are also several on-line support groups:  the Antiphospholipid Syndrome International Support Group (APLSUK) based in the UK, and APS-Syndrome, both run through YAHOO, and the  support forum sponsored by the APS Foundation of America.

Be informed and share information about APS with the women in your life.

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Don’t be a Statistic: Learn the Facts About Antiphospholipid Syndrome—APS

 

June is APS awareness month – APS, the acronym for Antiphospholipid Syndrome, the blood clotting disorder that caused my stroke nine years ago.

I remember feeling like the doomed heroine of a bad sci-fi when I first learned the cause of my stroke – an unpronounceable, incomprehensible disease: ‘Antiphospholipid Syndrome,’ or APS.

I’d never heard of APS. Nobody I knew had ever heard of APS, even most of my doctors had never heard of APS.

You may not have heard about APS, either, but you need to know. Here’s why:

  • One third of strokes occurring in people under 50 are due to APS.  Mine was one of those.
  • Estrogen in the form of birth control pills and hormone replacement–perfectly safe for most women–can be deadly for women with APS.
  • 15-20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
  • 10-25% of women with recurrent miscarriages have APS.  If properly diagnosed and treated, many of them will be able to deliver healthy babies
  • APS is a major women’s health issue: 75-90% of those affected by APS are women
  • APS isn’t rare. It’s estimated that one to five percent of the general population has APS.  That’s about two to six million women, comparable to the number of women living with cancer.

 

Here are the facts:

  • APS is a blood clotting disorder. In patients with APS, the body releases antibodies that cause the blood to clot when it shouldn’t
  • As a result, APS is a common cause of miscarriage, blood clots in the legs (deep vein thrombosis), the lungs (pulmonary embolism), and stroke.
  • It’s also an autoimmune disease. Like lupus and other autoimmune diseases, APS can “flare” at times, causing weakness, fatigue, achy muscles and joints, especially when we’re are tired or stressed.
  • APS is sometimes found in conjunction with other autoimmune diseases, particularly as lupus.

Awareness is growing. When I started trying to research APS in 2002, shortly after my stroke, the only information I could find was a booklet from the Hughes Foundation in England and Medline articles heavy on doctor-speak.  Today, lots of information is available from the APS Foundation of America as well as trusted medical sites like the Mayo Clinic, the National Institute of Neurological Disorders and Stroke (NINDS), and genome.gov.  APS now even has its own Wikipedia page.

There are also several on-line support groups: the Antiphospholipid Syndrome International Support Group (APLSUK) based in the UK, and APS-Syndrome, both run through YAHOO, and the support forum sponsored by the APS Foundation of America.

Be informed and share information about APS with the women in your life.