Phoenix Rayleen FIckas
The day that Phoenix was born was the happiest day of Sonya’s life! That was, until she was
diagnosed at eight-weeks-old with very rare genetic liver disease – Alpha1
Antitrypsin Deficiency. Her liver was damaged from the day she was born and it
deteriorated rapidly as she grew older. At the tender age of four, Phoenix was
already on a transplant list awaiting a new liver. Without it, she was expected
to only survive two to five more years.
At age six, after already two years of waiting, and many surgeries, procedures and
hospitalizations to help keep her going; Sonya received the sad but lifesaving
phone call. There was a donor match available; Feeny was to get a transplant –
the miracle of a second chance at life. The liver was expected to last an
average of ten years under favorable circumstances giving her a prolonged life,
though at a lesser quality than a healthy individual. Succeeding the surgery,
Phoenix would be on very dangerous medication to prevent rejection of the liver.
This medication would eventually causekidney failure and cancer! Before
the transplant was even undertaken, Sonya was required to sign a waiver
acknowledging this heart-breaking reality.
Phoenix was immediately flown to Edmonton to undergo the intensive six hour surgery. After
the successful transplant they had numerous setbacks and medical issues, one
landing her back in the ICU just two months after transplant. They remained at
the hospital for four months until she was stable enough to return
home.
It still took two more years for Feeny’s body to fully stabilize and function properly without
having to over-compensate for a failing organ, resulting at times in making
trips to Calgary for treatments, specialists, tests etc. several times a week.
For a year and a half after all that, she remained stable and led a full life;
in which she could finally play outside with her friends and fulfill many of her
life’s dreams.
Outdoor play was not possible for a few years without risking falls. Falling could cause
Phoenix’s organs to rupture, brain trauma, bleeding from the inability of her
blood to clot, or bones to shatter. Once before her bones did shatter from a
small slip due to lack of nutrients the failing liver couldn't breakdown and
distribute.
However at age 9, she ended up in hospital again with her body rejecting the liver. Her
transplanted liver was never expected to be a permanent cure, or last forever.
However, with an average life extension of ten years, rejecting the liver after
three was disheartening.
While in the hospital, she went septic with an extremely fatal form of bowel bacteria. It was
eventually discovered that her bile duct had a partial blockage of infected
sludge. She would need surgery to remove it; otherwise she was at high risk of
sepsis again. If this occurs again Sonya may not be so lucky to have a team of
specialists surrounding Phoenix in hospital. Their immediate reaction of
instantly and properly treating her from the onset of symptoms prevented her
death, which could have occurred within mere hours if left untreated.
With medical maintenance and antibiotics, the infection was held at bay for another year. But
in February of 2013, Phoenix ended up in the local hospital on IV every 6-8
hours for 8 days. This meant trips to the hospital in the middle of the night,
mid-day and early morning every day, a total of 36 times! All this time, Sonya
still had work and many other responsibilities at home to tend to. It goes
without saying that she was exhausted. When the surgeons in Edmonton did liver
function tests and heard of her most recent medical episode; they knew they
needed to stop delaying the surgery. The risks of the surgery were dwarfed by
the risk of losing Phoenix.
For her birthday, Sonya expressed wishes for something good to happen; in previous years something
medical always seemed to go wrong with Phoenix. Well, Sonya got her wish! After
a year of constant delays and numerous visits, consults and tests with doctors
all across Alberta, they were finally called to Edmonton for surgery to clean
Phoenix’s bile ducts; with only 3 days’ notice no less!
The first procedure, bile duct dilation to attempt to remove the sludge, has been
scheduled on February 27, 2013. Doctors are not at all optimistic as to what the
results will be. On Friday, she will possibly go under again to check the bile
ducts to see if it was a success.
The major surgery is scheduled on March 5, 2013. This surgery comes with very high risks and if
everything goes perfectly will require a minimum of one month’s stay in
hospital. However, with Feeny’s history, the doctors are once again not
optimistic about the results and expect a minimum of two months stay in hospital
for recovery and stabilization. The major risk behind the surgery is she could
possibly lose her previously transplanted liver. Once again, she would be put on
the transplant list. At that point her stay in hospital would be permanent until
a new liver is found which could be as much as a year if at all if a matching
donor could be found in time.
We hope in reading this, you will be moved to join us - in The Fight for Phoenix.
diagnosed at eight-weeks-old with very rare genetic liver disease – Alpha1
Antitrypsin Deficiency. Her liver was damaged from the day she was born and it
deteriorated rapidly as she grew older. At the tender age of four, Phoenix was
already on a transplant list awaiting a new liver. Without it, she was expected
to only survive two to five more years.
At age six, after already two years of waiting, and many surgeries, procedures and
hospitalizations to help keep her going; Sonya received the sad but lifesaving
phone call. There was a donor match available; Feeny was to get a transplant –
the miracle of a second chance at life. The liver was expected to last an
average of ten years under favorable circumstances giving her a prolonged life,
though at a lesser quality than a healthy individual. Succeeding the surgery,
Phoenix would be on very dangerous medication to prevent rejection of the liver.
This medication would eventually causekidney failure and cancer! Before
the transplant was even undertaken, Sonya was required to sign a waiver
acknowledging this heart-breaking reality.
Phoenix was immediately flown to Edmonton to undergo the intensive six hour surgery. After
the successful transplant they had numerous setbacks and medical issues, one
landing her back in the ICU just two months after transplant. They remained at
the hospital for four months until she was stable enough to return
home.
It still took two more years for Feeny’s body to fully stabilize and function properly without
having to over-compensate for a failing organ, resulting at times in making
trips to Calgary for treatments, specialists, tests etc. several times a week.
For a year and a half after all that, she remained stable and led a full life;
in which she could finally play outside with her friends and fulfill many of her
life’s dreams.
Outdoor play was not possible for a few years without risking falls. Falling could cause
Phoenix’s organs to rupture, brain trauma, bleeding from the inability of her
blood to clot, or bones to shatter. Once before her bones did shatter from a
small slip due to lack of nutrients the failing liver couldn't breakdown and
distribute.
However at age 9, she ended up in hospital again with her body rejecting the liver. Her
transplanted liver was never expected to be a permanent cure, or last forever.
However, with an average life extension of ten years, rejecting the liver after
three was disheartening.
While in the hospital, she went septic with an extremely fatal form of bowel bacteria. It was
eventually discovered that her bile duct had a partial blockage of infected
sludge. She would need surgery to remove it; otherwise she was at high risk of
sepsis again. If this occurs again Sonya may not be so lucky to have a team of
specialists surrounding Phoenix in hospital. Their immediate reaction of
instantly and properly treating her from the onset of symptoms prevented her
death, which could have occurred within mere hours if left untreated.
With medical maintenance and antibiotics, the infection was held at bay for another year. But
in February of 2013, Phoenix ended up in the local hospital on IV every 6-8
hours for 8 days. This meant trips to the hospital in the middle of the night,
mid-day and early morning every day, a total of 36 times! All this time, Sonya
still had work and many other responsibilities at home to tend to. It goes
without saying that she was exhausted. When the surgeons in Edmonton did liver
function tests and heard of her most recent medical episode; they knew they
needed to stop delaying the surgery. The risks of the surgery were dwarfed by
the risk of losing Phoenix.
For her birthday, Sonya expressed wishes for something good to happen; in previous years something
medical always seemed to go wrong with Phoenix. Well, Sonya got her wish! After
a year of constant delays and numerous visits, consults and tests with doctors
all across Alberta, they were finally called to Edmonton for surgery to clean
Phoenix’s bile ducts; with only 3 days’ notice no less!
The first procedure, bile duct dilation to attempt to remove the sludge, has been
scheduled on February 27, 2013. Doctors are not at all optimistic as to what the
results will be. On Friday, she will possibly go under again to check the bile
ducts to see if it was a success.
The major surgery is scheduled on March 5, 2013. This surgery comes with very high risks and if
everything goes perfectly will require a minimum of one month’s stay in
hospital. However, with Feeny’s history, the doctors are once again not
optimistic about the results and expect a minimum of two months stay in hospital
for recovery and stabilization. The major risk behind the surgery is she could
possibly lose her previously transplanted liver. Once again, she would be put on
the transplant list. At that point her stay in hospital would be permanent until
a new liver is found which could be as much as a year if at all if a matching
donor could be found in time.
We hope in reading this, you will be moved to join us - in The Fight for Phoenix.