June 3rd, 2018

The Dragon

Love is the medicine for any time

Me and Annjel❣️💘💞 in Edmonton!

Unconditional Love

Beauty in heavens clear into her heart

With a filling love from the first start

My mother, Amma, Mama is pure

And there is in excess of care in store

Ephemeral is the fleeting life

But the moments have been given joy

Indeed she has been there before me

Deep inside me protecting alive

When she follows the rules of truth and right

Indeed my pride bursts with her truth and clear

I am guided to reach the path and see the sight

So beautiful in every way, My Mom, my dear

Can you never leave me inside my heart and mind?

She is perfect to me for Earth,Kindness always I find

Glory gives Good from God, Great in gears of my mind   

She is full of perfection, pretty, positive and kind

I did not know what it meant to be safe until I was 9 years old.
Before that, my big brother Lasith was my main provider of brief moments of security. Today,
my big brother, Lasith, at the age of 38, began tapering off the medication his doctors
believe is keeping him alive.
Lasith has a terminal condition called pulmonary hypertension (PAH) where the blood
vessels in the lungs constrict. When these blood vessels constrict, it makes it difficult for the
heart to pump blood to the lungs. As a result, less oxygen is absorbed into the blood from
the air you breath. As the pulmonary hypertension gets worse, it puts a strain on the right
side of the heart, the part that is responsible for pumping blood to the lungs. Without
treatment, the heart begins to dilate from the strain and can develop arrhythmias or
completely fail to pump blood to the rest of the body. At first, this presents as leg swelling or
shortness of breath as blood backs up from the heart. But as the heart continues to fail, vital
organs like the brain don’t get enough blood and it can result in lightheadedness, confusion,
and eventually complete organ failure

The treatment of pulmonary hypertension (PAH), is to treat the underlying causes and use
medications to try to dilate the blood vessels in the lungs. Fascinatingly, the medications
used for erectile dysfunction are also indicated for pulmonary hypertension as they help
bring blood to areas where there isn’t a lot of blood flow (vasodilators). For Lasith, this
initially meant going on CPAP therapy for sleep apnea, oxygen, and oral medications.
Eventually, Lasith began developing increased shortness of breath and increasing oxygen
needs. He went from not needing oxygen at all, to use it every time he left the house and
then he had to wear it at all times, even at rest. Can you imagine being 35 years old and
having to bring an oxygen tank when you went to the bar or movies with your friends? My
brother never let what others thought about him to stop him from achieving what he wanted.
I wish I had that strength.

As Lasith’s lungs got worse, Lasith’s doctors began discussing the possibility of needing a
lung transplant. Because of the high risk of rejection or even death with a lung transplant, he
needed to maximize all other treatments, which included an IV vasodilator called Caripul.
Only a handful of people in Alberta are on Caripul, and it is a medication that only comes in a
powder form because it can only last a few days in liquid form. As a result, Lasith needed to
be brought into the hospital in March 2017 to get started on it and learn how to mix it on his own.
Unfortunately, before he could be stabilized on it, Lasith got a lung infection in the hospital and
ended up in the ICU. His oxygen needs were so high, the doctors considered intubating him
that first day. The next day, the ICU doctor said that if he ended up getting intubated, his
heart likely wouldn’t handle the pressure of the breathing machine and he would end up
dying. Fortunately, he recovered from the infection with brilliant doctors providing his
treatment. It became clear that every time something was done to help the pressure in his
lungs, it would affect the heart's ability to maintain blood flow to the rest of the body. And
every time they gave him a medication to help his heart, it would make the pressure in his
lungs worse. Navigating this tricky physiological balance is why I think Lasith’s doctors at the
U of A are some of the smartest I have ever met. It was determined during this stay that
Lasith’s heart was too damaged by pulmonary hypertension, and he would need both a
lung and heart transplant. A complex surgery for even a healthy young person, but an even
more complicated and risky surgery for someone with Lasith’s anatomy. Lasith was put on
the transplant list, but a match never came. Eventually, Lasith was stabilized on Caripul and
sent home to live with my mom. They both took his life by the reigns and ensured they spent
1-2 hours every day to mix his Caripul. I had never been more proud of my mother or of

Unfortunately, in the fall of 2017, Lasith developed increased leg swelling. It seemed his
CPAP machine was broken for two weeks, and as a result, his lungs and heart struggled, he
got leg swelling and eventually confusion. When the ambulance came, his oxygen level was
in the 60s (normal being 90s). Despite pleas and notes to take him to the U of A where he
was known, he was taken to the Grey Nuns ER. He sat in the waiting room for 30 minutes,
slowly getting more and more sleepy from lack of blood to the brain, drifting towards a
comatose state. When he got a bed in the ER and was put on a monitor, the doctor took
one look and rushed him into the resuscitation room. He now had the highest risk of dying in
the next 20 minutes than any other patient in the ER or likey the entire hospital. He had
developed an arrhythmia, was barely responsive, and the ER physician began preparing to
intubate him. That’s when I got there and pleaded with her to delay intubation due to the risk
of intubation and a breathing machine (mechanical ventilation). She was in the difficult
position of balancing his immediate issues of impending coma/stopping breathing altogether
and the complex physiologic dynamics of pulmonary hypertension and right heart failure.
She called her ICU colleague, who fortunately had worked with the PAH doctors before and
started to given Lasith some fluids and medications to improve Lasith’s blood pressure. I sat
in the resuscitation room, next to my mother, explaining to her that there was a high
likelihood of her son passing away today. I still grimace at the thought of how cold I was with
her. I wasn’t the son she needed. Instead, I was a doctor. I was so afraid to let in the
emotions of losing my brother or pain of seeing my mother lose her best friend. By denying
myself those emotions, I turned into a robotic doctor, delivering a poor prognosis to a
distraught mother. It is something I could never do to my patient or their families, and here I
was doing it to the woman who taught me the meaning of unconditional love.

By the time the ICU doctor came down, my brother’s blood pressure and arrhythmia had
improved. He was still in renal failure and the resulting lithium toxicity from his heart failing,
but it appeared he would not die today. Or so I thought. After Lasith was admitted to the
ICU, I took my mother home and I slept next to her as I had done so many years ago. At
4am, we awoke a phone call - Lasith was not responsive and the doctors were considering
intubation if he stopped breathing on his own. By this point, when I heard the phrase “we
are going to intubate”, I heard “your big brother will die today.” I called my dad to let him
know that he should come to see his son as soon as possible. I hadn’t talked to him in 6 years.
When we arrived, Lasith was still breathing on his own, but not responsive. The nurse
inserted an NG tube in preparation for the eventual need to intubate him, and that sure woke
him up! He was angry but alive. I plastered his ICU room with words of encouragement to
calm his delirium. My daughter drew him pictures. My father met his grandchildren for the
first time that week. I felt a father’s pain. He had spent so many years trying to shape me
into a successful man and his pride denied himself the ability to see the results. Here were
two amazing children that attested that I had succeeded. Before that, he never got to see
the love and happiness I had in my heart.

“And now here is my secret, a very simple secret: It is only with the heart that one can see
rightly; what is essential is invisible to the eye.” -Le Petit Prince

Needless to say, it was an emotional week. My brother Lasith eventually stabilized. And I
decided I would devote my career to helping other people with life-limiting illnesses and their
families. I submitted my resignation from my clinic and prepared for a career that would
provide me the flexibility to spend more time with my family.

When Lasith was stable enough, he was transferred to the U of A hospital to be cared for by
his regular doctors. He was slowly put back on his lithium, but it was determined by the
transplant doctors that due to Lasith’s mental illness and his anatomy, that the risk of
rejection or death from a lung/heart transplant outweighed the chance of success. They
could not take such a risk with such vital organs. He was taken off the list, though while he
was on the list, a match never came. During Lasith’s admission, my mother developed an
infection from the surgery she had a month previously to remove her gallbladder. It was an
incredibly frustrating time to advocate for both my brother and mother, as a doctor and a
son/brother. I truly learned how focused our medical system is on reacting to acute issues
rather than concerning itself with being proactive or preventing issues. Fortunately, both my
mother and brother were able to leave the hospital and go home.

A month later, my brother was getting leg swelling again and sounding confused over the
phone, and eventually one of his friends called an ambulance. He fought going back to the
hospital, and when we got to the hospital, there was an influenza outbreak. It was decided
that he hadn’t declined enough to risk infection by admitting him. We decided after that, to
put my brother in charge. My brother was learning that there were costs to life-prolonging
interventions. ER visits and hospital admissions were not fun. He did not want to spend his
life in ambulances and acute care wards. At that point, we decided to only call 911 if he was
not responsive or if he told us to.

Two months later, Lasith was admitted again with increased sedation and confusion. I
remember visiting him at home the night before and seeing him slumped on the couch. His
cachectic body was now a broken old shell, entrapping a vibrant young man. He was found
to be in renal failure with a potassium level that was almost severe enough to cause cardiac
arrest. They considered dialysis for him, but he recovered eventually. By this point, I was
getting tired of the roller coaster ride. I was worn from seeing him on the brink of death. I was
exhausted from saying my final goodbye every time I saw him. As his physical health
declined, his mental health decayed faster. His manic episodes filled his mouth with hate.
His brain and body now completely betrayed him. All that was left of my brother was his
dilated, marred heart. His love for others was the only thing preserved. Lasith, as I knew
him, was no longer visible to the eye.

Before my brother was discharged, I was working with a very difficult client. She was lady
an aggressive cancer of the lip, that nearly consumed her entire mouth and jaw. She
suffered from mental health, financial, and social issues for years. In palliative medicine
literature, her suffering was defined as “total pain”. All her issues compounded on each
other, making her pain untreatable with opioids alone. I finished a meeting to discuss
education more medical trainees and decided to call her to check up on her before going
home. We had a prolonged, frustrating conversation about her desire for just more pain
medication and my wish for her to take the other help we were offering beyond just more
medication. She was reluctant and I did not succeed in convincing her to take more help.
However, when I finished my call, my brother called me with a confusing statement that he
was having issues before but was now better. I told my mother to sit him down and help him
relax. It didn’t sound like he needed any more help. But because I hadn’t driven home yet, I
decided to go and check in on him. I knew if I had already started driving home, I would
have never have gone to see him. But it turned out he needed help. Very badly. God
showed himself to me. He put me on a disheartening, drawn-out and fruitless phone call with
my patient so that I could be late leaving for home. So that I could be with my brother when
he needed me.

When I got to my brother, he had experienced an episode of a racing heart, something that
felt like and he described as a heart attack. Leaving the house to catch the taxi was too
strenuous for him and caused his heart to race. He was rushed by a taxi driver to exit the
taxi at his destination and he tried to pay the driver more money to stay but was refused. I
got to the mall and could see he could barely walk more than 30 seconds without needing to
stop. He was adamant he needed his glasses fixed and his haircut. So we did that very
slowly and after a couple hours were on our way home. Unfortunately, he had another
episode of a racing heart by the time we got home, and his heart rate was in the 200s. He
initially stopped us from calling EMS, but eventually, we did call the ambulance. They
responded immediately and were amazing. By the time they had arrived, he was barely
responsive, his heart obviously tiring out from what looked like a fatal arrhythmia: ventricular
tachycardia. He and my brother took the ambulance to the U of A hospital and I drove there
shortly after. On my way, I was an ambulance with some people in the back and the lights
off. I was convinced it was my brother’s ambulance. He had passed away and there was no
longer a need to rush him to the ER. When I got to the ER, he was not there.

When I thought my brother died, I thought about a home visit I had done the day before. I
had visited a patient I had taken on just a week prior when he was in great distress. He was
a 38-year-old former fireman who started his own company. Let’s call him Jake. Jake had
been diagnosed with melanoma, but eventually was found to have it spread to his spine. He
was treated aggressively and was still going to the gym and on business trips two weeks
before he became my patient. Unfortunately, his cancer had spread to the brain causing
something called leptomeningeal disease, and he was suffering from extreme nausea. Jake
had an amazingly strong wife who jumped on board with my plan to start him on medications
given under the skin (because he could not keep them down). Within two days, his nausea
stopped, but it was clear he was getting more confused and weaker. Jake was dying. I tried
a hail mary attempt to fix his calcium levels, knowing there was good chance it would not
give him more time. But I wanted to give his family more time. They had been given no time
to prepare for such a decline. I will always remember Jake’s 7-year-old daughter sneaking a
peek into his bedroom as he lies there, unresponsive. It brings me to tears even thinking of it
now. I can’t imagine her pain. I can’t imagine the distress I would feel if I could not give my
daughter another piggyback ride. To my surprise, this father, husband, and son of God
fought over the weekend. I visited daily. On that fateful Tuesday night, I did a visit,
discussing with the family the plan for the next day to ensure Jake was comfortable. I knew
his time was short, that he could pass away any day. But as I went upstairs to say goodbye
to him, I could hear his breathing had changed. He was going to pass soon. It was an
incredible privilege to be able to sit in the room with this amazing man in the last hour of his
life, loved by literally hundreds (I believe there were over 1000 people at his funeral). I have
a hard time accepting the appreciation of families of my patients when I know I was only
there for a few days or weeks, while so many others have been there for them for decades.
But I was able to see this man take his last breath, in his bed, in the home he had built, with
his strong wife next to him, surrounded by his sister, one of his brothers, his mother, and
father. I am sorry for all the tissues wasted on me after his father said: “goodbye, my boy.”. I
just wasted a few more. The family was so grateful that I convinced them that their strength,
unity, love, and spirituality would be enough to keep him comfortable at home and not in a
hospital. I was grateful for the honor of meeting them all and seeing their power in a disease
that makes you feel powerless. But God let me help this man go in peace, in his home, with
his family next to him. So I thought of all of this as I drove behind this ambulance with its
lights turned off. Saying goodbye to my brother, and thanking God for making sure Lasith
had one friend his age when he got there. It was God’s way of saying: rest assured, Jake is
here now, and he’ll show Lasith around. Shoot. Wasted more tissue.

To my surprise, the EMS came in a few minutes later. It seems they had been able to
stabilize him before he got to the hospital. I discussed with Lasith and his doctor, Dr.
Weinkauf and we decided that CPR, intubation, and ICU would only cause Lasith more
distress without benefit. If his heart stopped, as expected from one of these episodes, we
would not try to bring him back to his empty broken shell. Lasith developed two more
episodes of tachycardia, each causing chest pain and they were thought to be caused by the
permanent damage done to his heart. They, fortunately, seemed to resolve on their own but
were incredibly distressing. When they asked him if he wanted to go to the ICU to try a
special medication to fix the issue, without providing him any other options, he said he’d do
anything to stop the pain. The ICU doctor said that the special medications (amiodarone)
could stop his heart, but Lasith was wanted relief and hope, no matter the cost, as we all
would. As a result, they changed his goals of care because for some reason the ICU team
required it to be changed to take him there. Luckily, he never had to go to the ICU. But, the
palliative care team signed off on him because of this change. I am not sure the exact
reasoning as I was under the impression that palliative care should be accessible to all,
regardless of goals of care. His friends came in to help him sort out his goals of care, and
set up his enduring power of attorney and personal directive, sensing he was nearing his
end. He was discharged with a plan to connect with palliative home care. The day of his
discharge, I helped him change out of his hospital clothes and realized how cachectic my
brother is. He is quite literally half the man he ever was. This truly was a beautiful young
soul in a broken shell.

Unfortunately, since this last discharge, Lasith has continued to have episodes of
tachycardia with simple things like trying to have a shower. He no longer feels comfortable
leaving his house as his blood pressure is so low from his heart failure. And so, feeling that
the initiation of the Caripul caused his sudden decline over the past year, he has requested
stopping it. His doctors feel as he slowly goes down on his Caripul, his pulmonary
hypertension will get worse, only putting more strain on his heart. As a result, his heart will
become more damaged and will eventually stop pumping enough blood to support his vital
organs. He will likely get more short of breath, fatigued, weak, and pass away. He hopes to
do this at home, and I hope I can help him accomplish that, but I worry about the effect it will
have on my mom. I pray the love he has shown for others over the years will now come
around and bring the much-needed support he will need in the next few weeks.

We do not know why Lasith got pulmonary hypertension (PAH). There can be many causes
of PAH, including medications, recreational drugs use, or medical conditions like
emphysema. Lasith likely has idiopathic pulmonary hypertension, or in other words, the type
where the cause is unknown. However, I suspect a contributing factor in him having years of
untreated sleep apnea. I remember one day shortly before I went into medicine that I heard
his breaths stop as he slept, but never pushed him to get it treated. I found out a few years
after he was diagnosed with pulmonary hypertension that he was put on a CPAP when he
was admitted to an American hospital some 10 years before his lung issue developed. It just
was never followed up on. They fixed the problem while he was in the hospital, there was no
incentive to worry about how he’d do at home. He likely developed sleep apnea from the
massive amount of weight he gained due to his inactivity and depression, a side effect of his
bipolar disorder and the medication he was on for it. When Lasith was 18, he was
diagnosed with bipolar disorder. I remember many visits to the hospital, futile attempts to
control his mania, and moving his things out of places he rented after he was forced to
leave. It used to be that March Madness meant something entirely different in my life. He
was started on medications to stop his regular trips to the ER in a manic episode. Those
medications eventually reduced the amount of manic episodes, but they failed to treat his
depression, and had weight gain as a side effect. Mental health issues run in our family, but
Lasith’s violent childhood experiences likely play a role as well. My parents divorced when I
was 9. Lasith was already 15 by that point, and the damage was done. Years of fighting,
pain, and constantly worried about the next attack. My brother took the brunt of it, and in a
way, shielded me from greater damage. He would often take me out of a situation, and
although he could hear the pain through those thin walls, he was there holding my hand. I
remember when we would push each other and wrestle like normal brothers do. But once, I
fell off some steps during one of our wrestling matches, and he paid the price for my
clumsiness. I will always be grateful for Lasith showing me glimpses of what it mean to be
safe. I have been shaped into the man I am today because of God and hundreds of other
people. My parents, my wife, my kids, countless more mentors and teachers are on that list.
But my brother was the reason I made it to age 9, when I first learned what it meant to be
safe. And for a child, that means everything. I love you Lasith. Thank you for being my big

Love your Malli (little brother)