Opening My Heart (20 page)

“No! You must call in first!
Please.”
I’d already showed them how to use the intercom in the waiting room and explained the reasons for it.

“Oops, we forgot!” they said, yet showed up again a few minutes later, unannounced. “Do we have to call in? We didn’t know we still had to.”

“Yes, you do,” I insisted, “each time you want to come in.”

Later that day, they popped back in when team rounds were taking place. I took them aside and explained again.

“You have to call in first. I’ve told you already. Patients deserve privacy!”

“We visit a lot. It’s because we’re Jewish.”

“I am too. That’s no excuse.”

“Can’t you make an exception for us?”

“No.”

I’ve never understood people who think rules apply to others, never to them. Later I heard the nickname they gave me: the Nurse Nazi.

As a nurse, I warmly welcome visitors to the
ICU
, but as a patient, I don’t want any. First of all, I’ll be unconscious or heavily sedated and won’t even know they are there. Second, stretched out on a bed, a bag of urine – or something worse – hanging out of me, I do not want to be on display! Thirdly, please allow me to present myself when I am back on my feet and in repossession of my faculties.

The other thing is many people don’t know how to visit a critically ill patient in a way that is helpful to the patient. Why would they? It is a completely unfamiliar environment and they are dealing with their own intense emotions at the same time. Nurses can support them, help them move closer, teach them how to talk with no response expected, and suggest what to say and do that’s helpful and calming. I’m quite sure that the voices and faces of family members help to bring patients back to the world, but visitors are only able to do this if they are in control of themselves and are able to serve the patient’s needs. Too many times I’ve seen visitors unintentionally add to the patient’s anxiety, worry, or frustration.

Sometimes there’s even an innocent voyeurism or desire to take a peek and see for themselves. They are hoping to be reassured, but unfortunately all too often the opposite happens. Unless a nurse takes the time to offer explanations about the
ICU
and what’s happening with the patient and to provide emotional support, it can be an even more upsetting experience than it already is. My advice is that if your visit makes it in any way worse for the patient or yourself (not to mention the nurses!) – stay home. If you do come, it may be helpful to know that your visit is likely harder on you than on the patient, who, hopefully, has been made comfortable and relaxed.

I corner Ivan later in the day. “There’s something else I have to tell you,” I say and see his expression shift straight into
what now?
“I don’t want you to visit me in the
ICU
.”

“Are you crazy? Of course I’ll be there.”

“Not in the
ICU
. Visit me afterward, when I make it to the cardiac ward.”

“I’m coming. You can’t stop me.”

“Yes, I can. I have rights.”

“You are so selfish! Did it ever occur to you that I might want to be there? That I might need to see you, make sure you’re all right?”

No, that hadn’t occurred to me, and his words make me cave. “Okay, you can come, but not the kids. I don’t want them to see me like that.”

“What if they want to be there? It’s not just about you.”

I am always on the alert when visitors ask to bring children into the
ICU
. If the patient is able to express a desire to see the child, and that is what the family and the child wants, I work to make that happen in a positive way for all. However, many times I question the benefit to either the child or the patient. If the person gets better, the child may have been traumatized needlessly by seeing the patient unconscious and connected to machines. If the patient dies, that frightening image is the one that will remain indelibly imprinted in the memory.

Once, we held a meeting with a patient’s family to discuss withdrawing life support for a young woman who had taken a drug overdose in a suicide attempt. We were doing everything we could to try to save the life she herself tried to end, and we weren’t making any progress. The situation was grim. At the meeting, the large, extended family was present. We brought in extra chairs to accommodate all the people who had crowded into the room. Suddenly, I noticed a Polly Pocket doll on the table, then the little girl holding it.
There is a child here. We are discussing the imminent death of her sister. Should she be here?
When I raised it with the family in a whispered aside, they agreed and whisked her away. They were in such a state of shock themselves that they hadn’t even thought about the possible effect of hearing this discussion on their child, not to mention the impending death of her older sister as well.

On the other hand, my friend Stephanie recently told me a story that was a real eye-opener. An
ICU
resident said that when he was
a child, his mother had died in an
ICU
. He was not allowed to see her and never got over the feeling that he had somehow been responsible for her death.

Despite the potential emotional trauma that may be caused in the name of being protective of children, I maintain that my wishes are for my own kids not to visit me while I’m in the
ICU
, regardless of the outcome.

Ivan has suddenly gotten very busy. Always happiest when there’s a plan, he gets down to work. He’s sweeping the floors and vacuuming, gathering up the dirty laundry left in piles around the house. He shops for groceries, cooks, and freezes meals. Makes lists of phone numbers of friends and family to call from the hospital.

I’ve been preparing too. This past week, I went to the dentist for a last-minute cleaning and checkup, as is recommended before any big surgery, but especially cardiac. The mouth is a source of infection and loose teeth can be at risk during intubation. When I explained why I needed to be seen so urgently, with my surgery any day, my dentist accomodates me immediately, and he and his staff look concerned.

“No, it’s wonderful. I’m very lucky,” I say, pleased to show off my transformation to my new, proactive outlook, my positive frame of mind. I have taken charge of this experience!

In other preparations, I have gone for a complete cardiac pre-op consultation. An anesthesiologist asked about allergies (none) and examined my mouth for false, loose, chipped, or capped teeth prior to intubation (none). Beside him on the countertop was his wooden treasure box filled with “goodies,” already drawn up in syringes, that most anesthesiologists keep with them at all times, which will be used in the operating room to put people to sleep and keep them pain-free.

After more blood work and another chest X-ray, I met Marion McRae, a cardiovascular nurse practitioner. She examined me, reviewed my test results, and wrote
normal
beside respiratory gastro-intestinal, renal function, respiratory status, and skin condition. Not a perfunctory list; each tick improves the chances of a successful outcome. Then we discussed my choice of the valve. I’ve decided to opt for a natural tissue valve taken from a pig, horse, or cow, already paying homage in my mind to the animal who will sacrifice its life for me. I love all animals, but have a special affinity with pigs ever since reading
Charlotte’s Web
, my all-time favourite book, about a friendship between a spider and a pig. Not only that, but I was born in the Chinese Year of the Boar. However, my most compelling reason for choosing the animal tissue valve is that I’m realistic enough to know that I won’t comply with the diet restrictions, blood testing, or medication regimen required with the mechanical valve.

To ensure I have all the information to make my choice, Maureen introduced me to a clinical nurse specialist who specializes in anticoagulation, in case I was still considering the mechanical valve. She wanted to make sure I knew about home-testing methods for
INR
(international normalized ratio that must be kept in check to keep the blood properly thinned), for ease of testing and anticoagulant medications currently under development that will simplify daily dosing.

But I think I’ve made the right choice for me.

Next, I met Mindy Madonik, the perfusionist who will operate the heart-lung bypass machine that will keep my blood flowing while my heart is stopped. It will be up to her to ensure that my blood receives adequate oxygen and that carbon dioxide, a waste product, is removed. She’ll make sure that the Ph – the acid-base balance – of my blood is normal and will give me heparin in precise,
adjusted doses so that I don’t develop clots. There’s no room for error in Mindy’s work. She will be the one to stop my heart and to help it get started again. Maybe if I know all the nitty-gritty details, it won’t seem so surreal and impossible to me, so I ask her to lay it on me.

“I inject potassium chloride into the heart’s blood supply that goes through the bypass circuit,” she explains. “This causes the heart to stop beating. It comes to a halt in diastole, the open, relaxed phase of the heart’s cycle. It’s the ‘lub’ after the ‘dub.’ ”

“How does the heart start beating again afterward?”

“I clamp off the potassium chloride infusion and in a few minutes the heart starts beating again. Sometimes the heart needs a shock to get it going again or to return it to normal sinus rhythm.”

I hope Mick Jagger will be there, belting out, “Start me up.”

More importantly, Mindy will be there. A surgeon’s brilliant technique is not enough; it will be up to the perfusionist – along with the rest of the members of the
OR
team – to get me through this surgery and keep me alive.

Then, after a long day of all these appointments and discussions, I met with Clarence, a heart valve patient who had his surgery two years ago. He’s in his eighties, spry and active, walking every day and doing this work of supporting patients at the hospital, alongside other volunteer cardiac patients. He told me how smoothly his surgery went and how much more energetic he’s feeling now. “You will too,” he promised and offered to be available if I wanted to speak with him afterward during my recovery and rehab phase. I wonder if I would do this kind of work, too. Probably not: I am ready to be a patient but eager to leave it all behind me.

It’s been six weeks since Max’s earache and in that time I’ve gathered the information I need, faced my worst fears, put my affairs in order, told my friends and family, made my wishes
known, and assembled my team. I have become a professional patient. It’s been a lot of work, but now I’m ready.

“Most people don’t go to such lengths.” Ivan sounds weary.

“Maybe they should.”

The next day it’s Friday, four days after meeting with Dr. David, and his secretary, Susan, calls. “Would you like to have Dr. David do your surgery on Monday morning?”

“Yes,” I say, taking a deep breath. Upon exhalation, I let go of all fear.

My surgery is tomorrow.

Yesterday, on Saturday afternoon, I overheard Ivan talking on the phone when I walked into the kitchen. “You can’t tell her anything,” I heard him say. “She knows it all.” He handed me the phone. When I heard Robyn’s voice, all disappointment about her not calling me back dissolved.

“I’m coming to be with you,” she said, all fired up. “I’ve got my ticket and I’m leaving for the airport now. You’re my best friend and you can’t go through this without me. Or maybe it’s that I can’t go through this without being with you.”

“Don’t worry, there’s no need to come,” I assured her. “I’m okay now. I can deal with this. I’m actually looking forward to it. I’m curious to see how this whole thing will turn out. Don’t come. The flight is expensive and you have to get ready for your classes.”

Robyn is a high-school drama teacher and the school year starts in just two weeks.

“I’m coming. I’ll be there in the morning,”

“Okay, but no crying. You have to be strong like a nurse.”

“I’ll try,” she promises.

It’s Sunday morning and Ivan has gone to the airport to pick up Robyn. It’s time for me to have one final early morning powwow with the Bagel Club. I’m coming from home and they’re coming after their night shift. Eric, the owner of the bagel shop, welcomes us to our “reserved” table, but today we don’t debate the merits of a wood-burning brick oven over an ordinary electric one, or listen to his explanation of how adding salt to the dough toughens the texture or why he flips them halfway through baking (so the tops and the bottoms turn out the same). He places warm bagels on our plates and pours coffee – “on the house” – for us. Jasna and Stephanie, who carpool together, haven’t arrived yet.

“We’ll get to your problem in a minute, Tillie,” Janet says to me as she settles into the bar stool in her spot around our table, which is to my left, “but first, I have to tell you about last night.” She launches into another true story of saving lives on the
ICU
Rapid Response Team. Just after midnight, she was called to the floor see a woman in her twenties, six weeks pregnant with twins, who went into a hypertensive crisis, with a blood pressure of 240 over 110. She was immediately transferred to the
ICU
and put on an
IV
medication called Labetalol, which Janet has slyly renamed
“La-bagel
-ol.” During the night the woman became tachycardic and lost consciousness. Her prognosis is uncertain, but the fetuses are still alive. Luckily for her, Janet and the
ICU
team got to her in time, initiated treatment, and she now has a much better chance of survival.

Soon, the other two arrive. “I can’t stay long,” Stephanie warns as she and Jasna settle into their usual places, Stephanie to my right and Jasna across the table.

“How was your night?” I ask, wondering what made them so late.

“I refuse to answer that question,” Stephanie says but then proceeds to do just that.

“The day nurse called in sick, so we were scrambling to find another nurse because it was not a safe double. Eventually Moira was freed up to take the patient and as I’m out in the hallway, giving her my report, suddenly I smelled something. It was bloody stool – you know that smell, don’t you? Unmistakable.”