Tuesday, January 30, 2007
Saturday, January 27, 2007
The heart of the matter
by Fiona Hughes-staff writer
At 22, Andrea Marrie is the picture of health. The athletic Campbell River native is five-foot-eight inches and an enviable 126 pounds. (She knows because she weighs herself every day, but not for body image-related reasons). Clear-skinned and with bright green eyes, Marrie has been hitting the slopes of Vancouver Island's Mt. Washington all winter where she coordinates ski lessons. She graduated with a biology degree last year at UBC and hopes to return to the university in the fall to start a master's program in occupational therapy.
To look at her, you wouldn't know about the life-threatening ordeal she experienced less than a year ago-except for half-inch wide scar that peeks out from the opening in her blouse. Stretching to below the rib cage, it's the kind of scar often associated with open heart surgery.
Her near-death experience began not long after she celebrated her 22nd birthday, when she, like many of her friends and fellow students, came down with what she thought was a simple bout of the flu.
Her bizarre story and even more startling recovery began last March. Marrie was working at one of her two part-time jobs while studying at UBC. It was a Friday night and she was at the East Side home of a wheelchair-bound man with a brain injury. Marrie was his homecare support worker for the evening. As the evening progressed, her hands and arms began tingling and she felt dizzy. She had been feeling unwell for a few days, but decided to go to work.
She could handle a cold, but what was happening to her then was more than run-of-the-mill aches and sniffles.
It frightened her enough that she called her boyfriend, Kenny Prichard, who was just coming out of a night class, to tell him she was beginning to feel very sick. As they were talking, her condition deteriorated and she decided she'd better call 911. After hanging up, her boyfriend and one of Marrie's roommates raced to meet her.
"I called 911 because it didn't feel normal," Marrie recalled. "I was kind of freaking out at this point."
As she was on the phone with a 911 operator, she broke into a cold sweat, fainted and dropped the phone, unable to tell the operator her location. Prichard and her roommate Kelsey Ragan arrived and found Marrie lying on the floor with the 911 operator still on the line.
"She was very pale and totally weak," Prichard recalls. "She could barely open her eyes. She was sweating but her palms were very, very cold. At this point, I realized this was more serious than we thought."
The ambulance arrived quickly and raced Marrie to Vancouver General Hospital, where she waited two hours to be seen. The ER staff diagnosed her with dehydration and the flu, but they kept her for observation overnight. Prichard left at 3 a.m.
Fairly certain it was a simple case of the flu, doctors released her the next morning with fluids to rehydrate. Prichard picked her up at 8 a.m. and took her home. It wasn't long before she started vomiting and feeling lightheaded.
Ragan insisted she go back to the ER, but this time at UBC Hospital nearer where they lived. Marrie felt too embarrassed to return to VGH.
"I didn't want to go back to the ER for just the flu," Marrie says. "I thought I'd tough it out. When we got there, I sat down and told Kelsey my roommate to go home and finish her term paper and that I'd be fine. I don't remember anything after that until waking up a week and a half later at St. Paul's Hospital."
After examining Marrie, UBC Hospital emergency staff raced her back to VGH. Prichard and Ragan, who sensed her roommate's illness was more than a flu and had not gone home to finish her term paper, followed by car. When they arrived at VGH and saw an unconscious Marrie hooked up to a breathing machine, multiple tubes and IV lines, and with half a dozen doctors hovering around her in the coronary care unit, Prichard's heart sank.
"I knew it was really bad then and I was freaking out at that point," he says. "I never thought she had something that could kill her. We asked the doctors how bad it was so one of them took us aside and sat down with us and told us it was very serious. They were brutally honest and bluntly told us, 'There is a possibility she could die tonight.'"
Marrie's parents had been called on Vancouver Island, but couldn't make it to Vancouver until the next morning. Prichard and Ragan were told to say their goodbyes.
That night, Dr. Anson Cheung was preparing for a trip to London, England the next day when his cellphone rang. It was VGH. He was told about a young woman who had gone into "cardiogenic shock" or heart failure, and to come to the hospital immediately.
Marrie's heart had failed so badly it could barely pump blood. Her body was going into shock and her other organs were shutting down. Marrie was dying.
Cheung, the surgical director of heart transplantation at St. Paul's Hospital, quickly hooked her up to an ECMO-a heart-lung machine that performs the functions her heart could no longer do-and transferred her to St. Paul's, the province's heart centre.
"The [ECMO] is quite bulky and it was a bit difficult to transfer her but we did it," says Cheung, who kept Marrie on the ECMO for another day.
Despite not knowing exactly what caused Marrie's heart to fail (the main theory, although even now no one is certain about the cause, is a virus due to the rapid onset of illness), Cheung and the transplant team at St. Paul's, including clinical nurse specialist Annemarie Kaan, concluded that she was a candidate for a heart transplant. But since no heart was available, Cheung inserted a mechanical heart pump, or ventricular assist device (VAD) into her abdomen. He is the only surgeon in the province trained to insert VADs. If Marrie had fallen ill one day later, she may not be alive today. Although Cheung would have flown straight back from England, he may not have arrived in time.
Cheung cracked open Marrie's rib cage to insert the one-and-half pound VAD into her abdomen and attach two tubes to the left side of her heart. The device was then connected to a battery-operated portable driver, or air compressor, which looks like a piece of carry-on luggage that can be wheeled around.
The VAD took over the pumping function of Marrie's heart. Ventricular assist devices are only used on critically ill patients who need a transplant and risk dying if a donor heart is not found soon. Patients with a VAD can return home and resume a more normal and relatively active life. By living at home rather than in hospital, patients increase their strength, which increases the chances of a successful transplant operation. Last year, 13 British Columbians received a VAD. Marrie was one of two patients requiring two of the devices. One in four patients who get a VAD, however, will die waiting for a transplant.
In most cases, a VAD is connected to the left and most important side of the heart, which pumps oxygen-rich blood to muscles, skin and organs. The right side of the heart receives the blood that has come back from body tissue and pumps it into the lungs, where it receives a fresh supply of oxygen.
The procedure, which Cheung had done numerous times at St. Paul's since introducing the VAD program at the hospital in 2001, took four hours. The surgery was a success, but Marrie wasn't in the clear. Her heart was getting worse.
A day after receiving her first VAD, Marrie was back in surgery to get a second fist-sized pump inserted into her right side.
"Usually, with bad heart failure if we fix up the left side of the heart the right side of the heart starts to get stronger as well," explains Kaan, an Australian nurse who was recruited to work at St. Paul's VAD program. "If not, we insert a second pump, which is very rare. It only happens in five per cent of [heart transplant] candidates. Andrea obviously needed a second VAD."
About a week after receiving the second pump, Marrie finally woke up. She remembers the moment with vivid clarity.
"I was delirious, confused and paranoid," the 22-year-old recalls. "I wasn't aware I was on the VAD when I woke or what had been done to me and I couldn't talk properly yet. But I could tell my mom was so happy and relieved to see me open my eyes."
Less than 36 hours after surgery, Cheung made Marrie stand and walk.
"I was scared trying to feel if my heart was beating. I was constantly putting my hand over my heart to see if I could feel it beating," she says.
Marrie then found out that she was on the wait list for a heart transplant if her heart couldn't recover on its own. Statistics weren't in her favour. No one in Canada and only a handful of patients around the world had ever survived without a transplant after receiving two VADs.
"It's a very rare occurrence for a patient to recover when two devices have been inserted," says Cheung, who trained at the University of Manitoba, Western, Stanford and was recruited to come back to Canada to work at St. Paul's. Cheung had previously been working and training in Pittsburgh, where he specialized in inserting VADs. In 2001, St. Paul's became the first hospital in Western Canada to insert VADs. There are now 10 centres across Canada inserting the devices, which have been extensively used in the U.S., Australia and Europe for two decades.
Canada was slow to introduce VADs because of a lack of trained surgeons and their prohibitive cost. Marrie's two titanium pumps cost $50,000 US each. The portable driver costs $75,000 US but can be reused for different patients. The pumps are a one-time use only device because blood flows through them, making them a biological hazard.
News of a transplant came as a shock to Marrie. Two weeks earlier, she'd been out on her regular five-kilometre run and had been snowboarding at Whistler and Mt. Seymour and playing intramural Ultimate at UBC. She was young and healthy. Heart transplant candidates are typically male, 50 or older and with a heart damaged from a heart attack.
With support from friends and family and a hospital psychologist, Marrie adjusted to the devastating news and her new life attached to a mechanical heart. She even developed a sense of humour about it all.
"My friends and I started calling the pumps Vaddie," she says smiling over peppermint tea at a Kits caf‚ recently.
Prichard admits that Marrie had her share of ups and down, but stayed positive and motivated.
"She was remarkably strong and tough during her recovery," says Prichard, who remains good friends with Marrie, from his home in Toronto. "Andrea has always been a motivated person in terms of school, work and friends and family. She had periods of frustration, but she mostly stayed positive and upbeat."
Five weeks after her two surgeries, Cheung discharged Marrie from St. Paul's. But she couldn't leave Vancouver just yet. She needed to stay close to the hospital for physiotherapy and regular monitoring of her heart and VADs. Her parents each took a leave of absence from their jobs and rented a basement suite in the city to be with their daughter. Marrie led as normal a life as possible, spending time with Prichard and her friends, going to the beach, which Cheung didn't like because of worries sand could get into the driver. Not all VADs require a portable driver. Some patients, larger men for example, are inserted with heavier pumps powered by a battery pack worn around the waist like a belt.
The average time on a VAD is six months, but one B.C. patient has stayed on a pump for 17 months. Cheung, who's earned the nickname "cardio cowboy" for his pioneering work in the area, said a patient can live for years on a VAD.
He also predicts that in five to 10 years, VADs will eliminate the need for heart transplants altogether.
"With the advance of these devices, their durability, their decrease in size and livability, [VADs] will become as common as pacemakers-we will be able to implant them permanently," says Cheung, who performs 90 per cent of heart transplants in B.C. "A person will be able to live on these pumps until they die at a normal age. With transplants, a heart only lasts 12 years on average and a patient has to be on anti-rejection drugs."
These devices, however, are not suitable for children.
"This is not a long-term solution for them. They are still growing, they're too small for the devices, they can't look after them properly."
Three and a half months after her ordeal started, Cheung and Kaan sat down with Marrie to inform her they wanted to remove the pumps. Marrie was happily surprised-and scared. The "Vaddie" twins had become a security blanket. Marrie knew her heart had gotten stronger, but she was still nervous about not having the pumps as backup.
Cheung and Kaan reassured Marrie her heart was robust and ready to work entirely on its own-and it did. Marrie's heart made Canadian medical history.
"Andrea is the only patient in Canada who had two VADs removed and had full recovery of her heart," Cheung says. "That only happens in about two per cent of cases worldwide."
Although still recovering, Marrie eventually moved back in with her roommates and her parents returned to their jobs on the Island. To keep busy, she took two courses at UBC and finally learned to cook. She's on two types of medication that she takes multiples times a day. Eventually, she'll be down to one medication, but she'll be on it for the rest of her life to ensure her heart beats in a slow steady rhythm.
"Andrea's heart rate was quite high when she was sick and if it [beats] too fast for too long, it can stress the heart," Kaan says.
Marrie is vigilant about her salt and fluid intake. She's allowed a maximum of 1.2 litres of liquid a day while in recovery. (Less fluid lightens the workload for the heart.) It's the reason she weighs herself every day at 9 a.m. Marrie weighed 135 pounds before falling ill and dropped to what she describes as an anorexic-looking 108 pounds while in hospital.
"If I gain three pounds a day it could be a sign of heart failure," Marrie explains, noting the weight gain would be fluid buildup. "I also check my blood pressure every other day."
Although she's been told she's completely in the clear, Marrie has had her share of panic. During her first night staying over at Mt. Washington, Marrie worried about her distance to the nearest hospital. Another time when she was snowboarding and hiking up a hill, she ran out of breath.
"'Hey, are you guys out of breath?' I asked the friends with me. They all said yes so I knew I was OK."
Marrie wants to travel and to visit Prichard in Thailand where he's just left for a UN internship to work with refugees. Maybe one day she'll have a family. But she wonders if all those things are possible.
Of course, says Cheung.
"Andrea's prognosis is excellent," he says. "She can train for a marathon if she wants and I would encourage her to travel. She can do whatever you or I do."
published on 01/26/2007
Friday, January 19, 2007
Since I have been home, I have begun rereading some of my books that I normally don't have time for .. or the brain for. You have to be in a certain mood for some books. Especially when you do the type of work that I do. It's not that I deal with death and dying all the time, but the issue of illness and suffering does comprise a lot of my work. After a while, you want to read ANY thing BUT.. something related to your field of work. Yet it is ironic that when I look at my library, there is a spiritual and psychological component to even my novels.
Close to the Bone is one of the books that I picked up a few years ago. Probably because it was cheap and likely related to my work. It is talking about the way that suffering affects us, our response to suffering.. either our own, or someone else's. The author relates a Babylonian myth as part of the beginning pages in describing the experience that most patients experience as part of their hospital experience.
Inanna is a queen who descends the depths of the underworld, to see her sister who is suffering.
The descent of the soul into the underworld which illness can precipitate, does not always have the impact of a shocking, sudden and unexpected abduction or the immediate devastation of being at the center of a major earthquake. Persephone's myth applies when this is so, but there is a second myt that parallells the experience of people whole illness and decent occurs in stages through an incremental loss of footing in the ordinary world of good health: either they have an illness with a gradually worsening pattern, or they maintain the illusion of being in control and minimize the emotional impact of having a serious medical problem. The myth that resembles the journey they take goes back at least five thousand years to the Sumerian goddess of Inanna.
Inanna was the Queen of Heaven and Earth. Heeding the news that her sister goddess Ereshkigal, Queen of the Underworld, was suffering and in pain, she decided to pay her a visit. Inanna mistakenly assumed that she could descend with ease. She would find however, that the power and authority she had int he upperworld had no bearing on how she would be treated in the underworld.
Inanna knocked imperiously on the gate to the underworlds demanding that the doors be opened. The gatekeeper asked who she was, and then told her that in order to pass through, there was a price. She would find that there was not just one gate, but seven. At each one, the gatekeeper told her that she must take off something she was wearing to pass through. Each time, Inanna responded indignantly, shocked that this should be so, with the words: "What IS this?" Each time, she was told: "Quiet, Inanna, the ways of the underworld are perfect. They may not be questioned."
Her magnificent headdress, the crown that designated her authority, was removed at the first gate. The lapis necklace ... double strand of rich beads.. breastplate .. gold bracelets .. royal robe. Naked and bowed low, She entered the underworld. Over and over, at each gate, symbols of power and prestige, wealth, and office were taken from her. ... Over and over, she would say "what is this?" and be told, "Quiet Inanna. the rules of the underworld are perfect. They may not be questioned."
Whenever a person becomes a patient and enters a hospital, the experience is not unlike Inanna's. Metaphorically, there are a series of gates to go through, and at each one, something is taken away. At the door of the hospital, s/he unwittingly crosses the first gate. In increments, thereafter, a patient is stripped of dignity, choice and authority. However important the patient is in the world, however significant s/he is to someone else does not matter here.
The second gate is the admissions desk... the third gate is usually the hospital room. Here each patient takes off street clothes which are reflections of individuality and status and puts on standard hospital gown that often is ill-fitting, too short and opens up the back. ...
Metaphorically and actually, illness and hospitalizations strip us of what covered and protected us in many ways. Indignities happen, and a "what is this?" protest may be met by words and attitudes from hospital staff that resemble those that Inanna heard: "Quiet, Patient. The orders of the doctor are perfect. They may not be questioned." Even when our physician are healers whom we trust, and they as well as the others communicate what an why whatever is being done is required, and even if we are fully involved in the decision-making, the journey is still similar to Inanna's. There are still gates we go through, which strip up of persona and defense: we become exposed and bare-souled.
The writer goes on to say that when we have been stripped so much, we reach our bare core and find things that were buried, or that we were not aware of. We are faced with the raw product of Self. Suffering brings us in contact with things we would otherwise prefer to forget, according to Henri Nouwen, a theologian. It is what we do with this time of suffering or death that defines our character, and provides a model for others. Some aspects of suffering give us NO CHOICE, but we do have a choice as the author of this book continues in the chapter. We can face it with dignity, or we give up.
This experience of being stripped to the bareness of it all... this is what I see everyday. My staff see it sometimes more intensely than I do. When one sees and experiences suffering on a daily basis, there is something inside that cries out for someone to do something. The mind rationalizes that even though I cannot change the situation, I can often comfort in the care given. That or the brain reacts with one of many defense mechanisms so that the intensity and raw pain are not felt so deep by the caregiver, so that the vicariousness of it all isn't touching too deep. There is a necessity of balance. The caregiver needs to separate themselves from the suffering and pain they witness, but there needs to be some acknowledgement that this cannot go on.
Hard lessons in life.
Tuesday, January 16, 2007
I think that the symptoms are mainly gone and now it is a matter of recovering. This morning I got a call from the Occupational Health and Safety Nurse, telling me that they did declare on outbreak and closed a ward in my charge yesterday. And then proceeded to tell me about the latest news written in the paper about said topic. So I can't go to work til Thursday. Fine with me. Now I have to clean up the house and disinfect what I was too sick to do before.
This morning, I was called by the family member of the "funeral" I am to do on the weekend. The patient passed this am, and the staff were paging me not realizing I was not there for the day. But they did call my secretary's office and got things straightened out. Luckily, I had done some work for this yesterday in helping with arrangements as they wish me to do the service and also to have it at my church. We'll see what goes on. Considering it will be on my "day" to work, it might be an issue. We'll see about this too.
Monday, January 15, 2007
Being sick, especially on one's day off, is not fun. I was at work on Saturday doing the usual flow of the day. Spent a lot of time on one floor where a patient was dying. The family had asked that I do the service and assumed that it would not be long seeing the way the patient was failing. I told the family member that I would be back on Tuesday and she could contact me then about future arrangements. When I went home, I felt slightly nauseous, later with acute onset of nausea, vomiting and diarrhea. It lasted a little over a day. I have not had symptoms since returning from the doctor's. (Of course, one does not have symptoms... just like when you take the car to the mechanic...) But nonetheless, I have Norovirus Just as I suspected. I had been told by nursing staff that they had a few cases. This is fairly common occurrence in my workplace, happens 1-2 times a year. So as a result, I am not allowed to return to work until 72 hours after the last symptom. Which from what I can tell was earlier this morning. Of course, I haven't really eaten anything either.
So I was "resting" when I remembered that I had not yet called the church re: the memorial service. So I called to find out if I am allowed to have services for non-members, and the time, etc. Called the family member, gave more info, and my home number as I will not be at work tomorrow as previously stated... The patient is still with us.
You know, it is interesting. The dying process. There are certain generalizations and certain elements that are unique to each person. But inevitably, I will hear a question... why is this happening? What happens when it is all over (morgue and funeral protocol) when will this end? How long does this take? It is interesting really. It is different for every person. Some continue to fight/hang on.. while others declare themselves. One of my ladies decided to stop dialysis treatment, shocking many. The pain was too great for her, the quality of life not good, so she decided that enough was enough. I was visiting her on her last days. She asked me to deliver some items to some staff members "when I die tomorrow". Die tomorrow? don't talk like that.. No, she was firm. Tomorrow. And she was right. It is different with everyone. Every case has different issues, but in the end, the results are the same. Whether they were younger (50-60's) or at the end of the life span (80-90s). Life and death are interesting. And in the end, a soul is lost from us to join those who have gone on before.
This morning, my husband and I went to the notary to begin the process of writing our will. We do not yet have children and there aren't too many assets to deal with, but it is better to write it sooner than later. One of the questions is whether a living will is be included. A will is a legal document, a living will is not, and hence a guideline for others to follow in the event that you cannot speak for yourself. My husband said if there is no brain function, than pull the plug, otherwise I want to live. For me, it is not that simple. I work in a hospital and see the various options. I understand the concept of quality of life (QL), and it means different things to different people. One man told me that QL for him was being to do his job... having his mind, another man's idea of QL was being able to go in the outdoors and go hunting.. his possible amputations would not be good QL. Irony is that despite this knowledge I haven't really defined what QL would be for me, nor have I written an advanced Health directive (aka living will), nor have I had a will. But then I'm young...
Friday, January 12, 2007
Monday, January 08, 2007
One of my friends told me that this blog has helped her to understand the actual "work" I do in my job. That statement from the minister resonated with me. Essentially, the patients/people that I meet in my work are in the middle of a crisis that they are not prepared for. ( But then, life is full of unexpected events isn't it?) Often the people who are in the hospital and those affected, (for serious illness or prolonged, I'm talking about, and mostly at onset) are not sure how to deal with it. I have found that a lot of people do not have a "religious" or "faith" foundation and hence they are groping for any kind of help to decide what to do.
When one is in the midst of a crisis, they are often not thinking clearly. On autopilot. They may not see the big picture. This is part of my work, to help "read the manual" so that they don't have to. I don't mean that I am telling them what to do, but rather helping to make sense of what is coming out of their minds/thoughts.
Friday, January 05, 2007
Hmm.. Today's local paper had an article about this painting.. under the heading of Blessed Angelina.. (here is link to the blog by artist, Kate Kretz.)
Angelina Jolie has been turned into the Virgin Mary in a controversial new painting by artist Kate Kretz.
The actress and humanitarian is depicted as the mother of Jesus Christ, while her adopted kids Maddox and Zahara and biological baby Shiloh are featured as angels in the piece, titled Blessed Art Thou.
The painting, which will be unveiled at the Art Miami Fair today, addresses "the cycle of celebrity worship" and depicts Jolie in a flowing gown hovering in the clouds above a dimly lit shopping store, populated by shoppers.
Kretz, who spent five months creating the painting, says, "Our culture is deifying celebrities, but, in the Bible, it is the meek who are blessed, so the title presents a question for the viewer to ponder.
"Angelina Jolie was chosen as the subject because of her unavoidable presence in the media, the world-wide anticipation of her child, her unattainable beauty and the good that she is doing in the world through her example, which adds another layer to the already complicated questions surrounding her status."
Kretz, a former professor, reveals her virgin [Jolie] and Zahara figures are loosely based on a painting by Sir Anthony Von Dyck, while Maddox's pose is borrowed from a painting by Italian High Renaissance artist Raphael.
January 5, 2007
So the explanation is that it is a "food for thought" regarding the deification of celebrities. Interesting .. considering an article in the Vancouver Sun a few days ago with headline that celebrities are not health experts and yet people look to them as models on everything from dieting to exercise advice.
This reminds me of other artworks I have seen over the years.
An ad for the Catholic priesthood based on Matrix style pose, an effort to attract candidates to the dying vocation. I saw this picture in a newspaper with an article explaining the rationale. It said something to the effect of "the appeal of religious vocation is dying out and hence there was an attempt to make it look adventurous, daring, exciting.. etc."
'A tribute to women' ... The Last Supper advertisement for Marithé and François GirbaudThis is from an ad for clothing from a Parisian company... banned for defaming the Christian faith.
Milan bans Da Vinci parody February 4, 2005 (Excerpt)
Their decision follows a ruling by the city advertising watchdog last month. This Last Supper "inevitably recalls the very foundations of the Christian faith", said the Istituto di Autodisciplina Pubblicitaria. "This kind of image, with a high concentration of theological symbols, cannot be recreated and paro died for commercial ends without offending the religious sensitivities of at least part of the population."
"One of the women apostles is kissing the naked torso of a man, which just makes the imitation more offensive. As does the use of Christian symbols like the dove, the chalice and the position of the fingers of the female Christ."
Of course, there are other interesting interpretations of art in the "deification" or use of religious genre that have sparked interest, or controversy. Interesting that it is often controversy that sparks our vocalization in the interest of protecting the Christian faith, but rarely is there a unified voice otherwise. It is hard to define this issue as spirituality and faith are a personal issue. We are not to judge others for our difference of opinion, but are encouraged to attempt dialogue versus debate.
Interesting isn't it? As the point of art is usually to make a point about some aspect of society/cultural norms, and to spark thinking about the definition of norms and rationale behind current thinking/behavior.
Monday, January 01, 2007
The Lord is good. All the time.