Five Years Later: Part 5

“We detected some right-to-left shunting, consistent with PFO,” the cardiologist says, discussing the hole in Mom’s heart.

“Her mother and two of her brothers had that too,” my sister remarks. As a nurse, my sister understands exactly what the cardiologist is talking about.

PFO. Patent foramen ovale. A hole between the chambers of the heart that allows blood to travel through an unborn baby’s heart and body, while bypassing its developing lungs. At birth, when the baby’s lungs become functional, blood begins to flow through the lungs, and the foramen ovale soon closes. However, medical research suggests that in about 25 percent of the population, the foramen ovale remains open, and is associated with an increased risk of ischemic stroke. Doctors believe that the PFO can allow blood to bypass its normal route, acting as a window that can shunt blood headed to the lungs, which filter chemicals and blood, back into systemic circulation, and on to the brain or other parts of the body. According to the American Heart Association, if this counter-flow carries a clot, it can cause a stroke, and clots can even form in the PFO itself.

My mother is the youngest of four siblings, including two brothers who died of strokes at ages 62 and 70. For us, this is an important clue: family history of PFO and stroke. And there are other clues.

The stroke was caused by a blood clot lodged in her right carotid artery, obstructing blood flow to her brain. A deep vein thrombosis (DVT), also known as a blood clot, formed in Mom’s leg sometime after she broke her foot. One neurologist suggested that part of this clot traveled to her right carotid artery, causing the stroke. Another neurologist speculated that the stroke was caused by a clot that likely originated from the PFO.

And there is another clue. A blood test reveals a clotting disorder called lupus anti-coagulant. A propensity to clot. A broken foot combined with a DVT, PFO, and a clotting disorder. A perfect alignment of rare circumstances.

Five Years Later: Part 4

Lori is different than many of the nurses in the critical care unit. She talks to me. And she uses words I understand. She tells me she has worked as a flight nurse in Detroit and that she’s been a nurse since the Florence Nightingale days.

Mom’s head is wrapped in a turban of gauze and tape. Her brain is so swollen that her right eye is bulging, like someone punched her. Intubated and on a ventilator, her tongue is bloody, crusty, swollen, and sticking out of her mouth beneath the endotracheal tube. Her chest heaves and a muffled, junky cough comes out through the ventilator, triggering an eerie, honking alarm.

We are hopeful. Last night Mom put her right hand up to her mouth and touched her breathing tube. Throughout the day, she wiggled her toes and fingers on her right side to command: thumbs up, thumbs down, and a wiggle of her pinky. Purposeful movements.

But now it is just before 4 am and her blood pressure is erratic. Alarms are sounding. She’s terribly congested. Her temperature is almost 102. Lori puts ice bags and a cooling blanket on her.

“Let’s just see what the next hour brings and then go from there,” Lori says. “This is the way it is with neuro patients. It’s like walking a fine wire fence. They could go either direction at any time. All we can do is read the symptoms and treat each one.”

We go through each night like this, walking the fine wire fence. Wiggle your toes. Squeeze my hand. We read to her, paint her toenails, and play her CDs. I realize that we have the same ridges in our fingernails, and that my toes are exactly like hers in their size and shape.

The noises haunt me. The whistling compression of air as the Venaflow sleeve contracts on her right leg, preventing the formation of blood clots. The beeps and clicks and alarms on the IVs and on the monitor that measures intercranial pressure. So many alarms.

For 13 days she walks that fine wire fence, the mysteries and miracles of critical care unfolding each moment. Medications support her blood pressure and for a while she doesn’t breathe above the rate on the ventilator. We watch fearfully as her intercranial pressure increases. Her heart rate and temperature are persistently high. She receives antibiotics for pneumonia. CT scans check for bleeding and swelling in the brain. A feeding tube is placed and so is a peripherally inserted central catheter (PICC line) for drawing blood and administering medicine arterially. She has high blood sugars so she is on an insulin drip. Her raw and scabby fingers are poked often to test her blood sugars. Her blood is drawn frequently to monitor delicate levels.

We have lost our center. On good days, we are giddy with hope. On other days, we cry and wander and try to prop each other up. We are in the embrace of friends, family, co-workers, and hospital staff who bring us meals, cards, flowers, and prayers. We are disoriented. We lose things—our vehicles, our coats, our minds. We are relieved to find Mom’s wedding ring at home. And life goes on. There are bills to pay, plants to water, pets to feed. We have divided Mom’s life among us, and still we cannot keep up.

One night, a family is standing around the bed of a new patient in the critical care unit. All the lights are on in the room. Moments later, an alarm sounds.

“Code blue, CCU…Code blue, CCU…” a computerized female voice repeats.

A woman screams. Footsteps pound down the hallway. “NO!!!!” the woman sobs.

More footsteps pound down the hallway.

In the middle of the night, I linger alone at Mom’s bedside, in this world of machines and monitors, where the sound of grief is profoundly louder than the combined chorus of many alarms. Where strangers don’t introduce themselves, bringing machines they don’t explain. I am terrified of the code blue. Terrified that we’ll have to bury our mother.

Silver Lining

The last few weeks have been such a whirlwind. I had a rejuvenating vacation with friends in Portland and Sacramento. Upon my return, I started a new job, which (so far) seems to be one of the best decisions I’ve made in a long time. I knew I needed a change, but I didn’t realize how badly I needed this change. I already feel so comfortable and welcome in this new role—everyone has been so supportive and appreciative. It was long overdue.

We celebrated C’s birthday last weekend with a beautiful canoe trip on the St. Croix River between Taylors Falls, Minnesota and Osceola, Wisconsin. On our way home we stumbled onto the most unique sculpture garden. However, our day trip had an unexpected ending. We stood in the ditch and laughed and appreciated the fact that our car died in the most opportune location: right when we got back home, within sight of the VW dealership, which meant it would get towed for free by AAA. You have to appreciate your blessings in every form. Find the silver lining as they say.



Yesterday I saw this: “A big shot is just a little shot that kept on shooting.” – Anonymous

I am trying to keep on shooting. Although I am happy about the changes with my new job, I’m a little down about a few other things. My mom has a bacterial infection in her toe which has been lingering—despite numerous treatments with oral antibiotics—for several months. Yesterday she was admitted to the hospital to begin IV antibiotics. I’ve now received two rejections on the most recent article I sent out to get published. I haven’t heard back from one place but I’m assuming I won’t at this point. The news about our car has gone from bad to worse. It sounds like it may cost more to fix it than the car is worth.

Sometimes it’s hard to understand why things happen. For example, why my mom should have to suffer any more than she already has. Five years ago she had a stroke that resulted in a craniotomy, loss of function in her left arm, weakness in her left leg,  vision problems, and more. When I start thinking this way I have to remind myself what I learned back then. Accept it for what it is…don’t question it or resist it and flounder in “why” and “what if’s” –this will only lead to more suffering.

The Real Cost of Living

Would you be scared if you read this about a medication you were taking???

As with any medication, Armour Thyroid can also cause allergic reactions. In fact, it may have a higher risk for allergic reactions, since it contains ground-up pig thyroid glands. Seek medical attention immediately if you develop signs of an allergic reaction, including:

•An unexplained rash
•Hives
•Itching
•Wheezing or difficulty breathing
•Unexplained swelling (especially of the lips, mouth, or throat).

It is the comment about the pig thyroids that REALLY freaks me out. Poor pigs. Wtf? I have been taking this medication for about two months and the last few days I have been feeling so itchy and my skin feels abnormally dry and tight. I looked up "Armour Thyroid" side effects on the web and saw the above statement. (Side note: I tried taking synthetic thyroid, Synthroid, last summer and had a bad reaction to it...)

I have an appointment with a nurse practitioner next week, who was recommended to me as being open to holistic medicine, among other things, by an ayurvedic practitioner I recently saw. So I’m going to get someone else’s opinion on this whole hypothyroidism thing. In the meantime, I will try and keep taking the medication since pigs were slaughtered and their thyroids were ground up for it. I’d hate to have had them die in vain. How horrifying.

It just reminds me that we always need to ask questions about where our every day products come from and what is the social and environmental cost of producing them? Who and what had to suffer and what are the alternatives? That’s why I really enjoyed EcoTrip, produced by the Sundance Channel and available via DVD or streaming on Netflix. It is truly shocking to discover the true environmental impact of every day products like cell phones, bottled water, salmon, gold, light bulbs, and more…

Subcutaneous Mass Right Leg

There is a bump in my leg. About two inches above the knee on the outside of my right leg. It’s small but hard, about the size of the tip of my index finger, with well-defined, sharp edges, like the corner of a plastic box, or the pointy tip of a plastic pen cover. Around this same time, I also notice that a portion of my right leg, just above the knee, has decreased sensation. Like when your foot falls asleep—numb, minus the tingly feeling. Just numb.

The bump in my leg feels like a bee sting. Sometimes, I wake up at night and that little thing is burning, stinging, and throbbing. It’s a sharp pain, snatching me out of my dreams. I put my finger on it, and the object is pulsating, right on the surface of my skin, like it’s trying to tunnel its way out. Other times, it’s small and hard to locate, dwelling dormant somewhere deeper in the confines of my leg, resting perhaps.

I try to ignore it. I obsess that it’s a blood clot. My mom had a blood clot in her leg after she broke her foot, and two weeks later she had a stroke. A DVT – DEEP VEIN THROMBISIS – they called this blood clot. I don’t want to know what it is, this little bump in my leg. This little stinging bump in my leg has awakened my dormant fears, sending my mortality back to the forefront, with stinging reality. I am not getting any younger, and all things are unstable. I nurse my tender edges with things that help me forget.

But a year later, the little stinging thing is still there, and stinging a little more often…I try to keep track, but there is no pattern. Random stinging. While I’m walking. When I’m standing still. When I’m sitting in a chair. When I’m sleeping. Randomly, that little object starts stinging. Always, it is sharp enough to draw my complete attention.

Finally, I have to go see my primary physician anyway, so I tell her about the stinging bump.

“Yes, I feel it,” she says, poking at the stinging bump. “It could be a sebaceous cyst or something like that.”

She says she doesn’t have to tools to remove it, so she sends me to a surgeon.

At the surgeon’s office, I wait anxiously, anticipating the removal of my stinging bump. I fill out a health history, essentially the same form that I just updated at the office of my primary care physician. I anticipate the quick removal of my stinging bump. I wait in the lobby. I wait longer in the examination room. I keep my finger on that stinging bump, scared that I will not be able to locate it when I need to. That he won’t be able to feel it.

“It’s a lipoma,” he tells me. “Usually a type of benign fatty tumor. I don’t think I have the proper instruments here in my office,” he tells me. “I think I’ll have you come to the surgical hospital.”

I tell him about the numbness.

“That’s not related,” he says, matter-of-factly. “That’s a nerve issue. Have you hurt your back recently?”

“No,” I reply.

I am disappointed. My stinging bump has already turned into a much bigger deal than I imagined. And the surgeon has already moved the conversation on to my occupation and marital status, and within moments, his nurse has booked me an appointment for next week at the surgical hospital.

Two days prior to the procedure, a nurse calls me at home to go through yet another health history…another version of the same information that I’ve already completed for my primary care physician, again at the surgeon’s office, and now once again on the phone (why can’t these medical people have some sort of integrated database???)

I am told to arrive almost two hours prior to my actual appointment time. The surgical hospital seems more like a hotel than a hospital. A place you’d like to return to, not a place to be afraid of. A brand new building, the lobby decked out with a large flat screen TV, wireless internet, a computer station, coffee and complimentary beverages...complimentary meal vouchers for family members. I am directed to a private registration area to check in, where I sign numerous forms and receive a wristband on my right arm, and then return to the lobby.

Soon I’m called out of the lobby by a nurse who immediately introduces herself and shakes my hand. I’m shocked by this, as it is in direct opposition to most of the health care professionals I encountered during the four months my mom spent in a hospital after having a stroke, professionals who rarely introduced themselves or explained medical concepts in a way that an average person can understand.

The nurse takes me back to a staging area where she asks me what my name is, date of birth, and what I’m there for. She is the first of various nurses who, before that surgeon takes any instrument to my leg, asks me a series of questions to validate who I am and what I’m there for. She asks me if the doctor explained to me, in a way I could understand, about the procedure he was going to perform that day. She goes through some information with me on my chart, at the top of which says, “Subcutaneous mass right leg.”

After I change into a disposable gown, and put on a hat and booties, the nurse escorts me to a bed with a curtained off area and my own private flat screen TV. A new nurse now takes over, saying she will be with me throughout the surgery and recovery time, asking me several times if there’s anything I need, or if I have any questions. She explains that they will be using local anesthetic, which will be painful, but after that I will feel only some pulling or tugging in the area of the lipoma.

Finally the surgeon arrives. “That bump didn’t go away, did it?” he jokes, as he takes a black marker to the spot on my right leg where the lipoma resides. And quickly he is gone, the nurses then wheeling my bed from the staging area and into the operating room. On the way, we pass through a bustling nurse’s station and the recovery area.

In the operating room, there are now three nurses, each who has a different job. They wheel my bed up next to a narrow, elevated bed and ask me to move over. Again I’m asked who I am, my birth date, why I’m here. They put sheets over me and above me and arrange lights and do all sorts of things in preparation for the procedure.

But no matter how busy these nurses are, they never lose that personal touch. It is the job of one of these three nurses, to remain next to my head, and within my sight, at all times during the procedure. “Don’t worry,” she tells me. “Nothing will begin until you’re told, so you don’t have to worry about anything happening suddenly.”

Soon the surgeon is there, greeting me by my first name, although I cannot see him, due to the sheet that is elevated above my face.

“You’re about to feel a couple bee stings here,” he warns me.

“Ok,” the nurse next to my head says. “Now is when you get to abuse my hand,” she said, squeezing my hand hard.

And suddenly the stinging begins, in the side of my leg, moving deep and down, and I cry out, and squeeze hard...my heart beating hard and fast, like a rocket coming through my chest…my breathing heavy…my cheeks flushing red and hot.

“Can you feel that?” the surgeon asks.

“I don’t think so.” I feel some tugging, like the nurse predicted, but no pain.

“Ok, it’s out,” I hear the surgeon say, only moments later.

And it seems then, that it takes longer to patch it up than it did to remove it, as the surgeon asks me what kind of music I like and jokes with us about the musical preferences of his wife’s ex-boyfriend.

“Would you like to see it?” he asks me.

“Yes,” I reply.

It’s a small, white mass, floating in a container of clear fluid. A tiny little white thing, about the size of the tip of my index finger. Like those chunks of fake fat they show you in health class when you’re in high school.

“I don’t think it’s cancerous or anything, but I’ll send it in to the lab,” he tells me.

Moments later, they are telling me I did well, and wheeling me in to the recovery area, where yet another nurse offers me complimentary beverages and a complimentary meal from their on-site bistro restaurant. I’m already perusing the menu when the surgeon comes in to check on me, assuring me that the food here is excellent, and then he is gone…

It’s hard to believe something so small could create such a ruckus…but what a state of the art bunch of professionals they were. I’d like to go back to that hotel—I mean hospital—any time. My complimentary mandarin chicken salad was exquisite.

I can’t wait to see the bill…