The
Beginning…
For those
of you not aware, my beloved husband, Chris, was diagnosed with kidney disease
and has been in Renal Failure since May of 2012. Because his kidneys are only functioning
at 13%, Chris must undergo dialysis three days a week until he has a dual
kidney transplant and pancreas transplant.
So let me
start at the beginning:
In his
mid-twenties, Chris was diagnosed with diabetes, type II, as a result of an
injury to his pancreas. Over the course of 21 years Chris tried a variety of
treatments for this disease including chiropractic therapy, homeopathic
remedies like a strict diet and fish oil regiment and the latest and not so
greatest designer drugs. As the years went by Chris and his doctors monitored
his kidney function and up until January of 2012 his kidney function held
steady at 85%. It was around this time Chris changed employers and thereby made
a change in doctors. His new health plan did not cover the same medications and
he was switched to a new drug on the market (whose name will be left out here
for legal purposes).
From what
we can gather, this new medication reacted badly with the other medications he
was already taking for high blood pressure and his own body chemistry and as a
result his body began to fight itself by attacking the weakest organs
(Kidneys). His kidney function plummeted from 85% to 6% in the course of just a
few months. Chris attributed his fatigue, night sweats and extreme highs and
lows in blood sugar to the adjustment to living in a new city, his new and
rigorous travel schedule and his new medication regiment.
Unfortunately
this decline went unchecked and it was not until he was hospitalized in Phoenix
for a foot injury that it was discovered. The nephrologist (kidney specialist)
in residence where Chris was being treated for his foot visited him in his room
to inform us that he was in fact in Kidney failure and that he would have to be
hospitalized for at the very least the next few days (more like 2 weeks!).
He didn’t
believe the doctor at first, he said: ‘I think you have the wrong room, the
wrong patient’. He did not have the wrong room or the wrong patient. We were in
shock. How could this happen? Chris was only 41 years old. His last reported
kidney function test read at 85%. What is happening?? The doctor went on to
explain that Chris would need a dual kidney transplant and ideally a pancreas
transplant. Chris was told that he would have to start dialysis as soon as
possible.
For those
of you who don’t know Chris’s new job took him to Phoenix, AZ. The plan was
that he would go out there first while I stayed in Southern California for 4-6
months all the while job hunting in the Phoenix area. I started to tie up all
of my loose ends, I started to pack and prepare to move our household a few
hundred miles east.
I still
remember that phone call, it was a Monday morning around 10am, I was at work
(in dtla) and in between meetings when my cell phone rang. It was Chris’s Dad,
Dan. I thought that’s unusual, so I answered the call. He started speaking in
rapid fire telling me that Chris was in the hospital and that he was in
critical condition. I wanted to rush to LAX and catch the next flight to AZ but
Chris calmed me down and said to stay put until the weekend. I made until
Thursday.
I stayed
strong during my visit but when I got to the airport for my return flight to LA
the flood gates opened it took a long time to stop. The poor passengers waiting
at my gate thought I had lost my mind as I sobbed uncontrollably sitting there
waiting for my flight. I felt like a wounded animal that was left to die. The
only word I could utter was ‘Please’. Thinking to myself, please God Please do
not take this man away from me.
Within two
weeks, we were referred to the Mayo Clinic in Phoenix, Arizona. Two months
later after mounds of paperwork and what seemed like 1,000 tests he was put on
the national transplant list. Chris did not want to go on dialysis so he was
put on a very strict diet, low sodium, no phosphorous, high protein…he lost 40
lbs overnight.
While all
of this was going on we prepared to move me from LA to Phoenix sans a job. We
talked about it and Chris’s job was stable and paid really well. He had settled
into his medical routine and I started making plans to go back to school for my
Masters and work a low level/low stress job near the AZ State campus in Tempe. Chris
started working with a realtor to find us a rental and I started packing up
back in Huntington Beach. We found the perfect home to rent with a great
backyard and a walk-in closet. The deposit was put down, the movers hired and
my notice at work tendered. I was working my last week in LA and on Wednesday I
got my next shocking call. Chris was laid off due to a ‘re-structuring’ of his
firm...
Shock
sets in again. But I am a military brat, therefore I am adaptable and I can
think quickly on my feet.
I walked
into my bosses office and said if you have not hired my replacement please hold
off. He had not...but what am I going to do with all of these damn boxes in our
condo in HB?? That night when I got home I sat on the couch and stared at the
wall for what seemed like hours. But I came up with a plan; months prior my company
had purchased a portfolio of 32 office buildings in the Summerlin area of Las
Vegas.
They needed
someone to manage it, I had been offered a shot at the job initially but had
turned it down in favor of moving to AZ.
Chris had
lived in Las Vegas before back in 2006 and had rented out his condo on the
north side of town ever since moving back to LA. The last renters had moved out
sometime ago and it was move in ready. Las Vegas is 2 hours closer to Phoenix
than LA, this could work, but was the position still available?
I called
Chris and told him my plan, I said we have one of two options: You either move
back to LA and we unpack all of our stuff or I walk into work tomorrow and see
if the Summerlin job is still available as our internal website listed. I told
him: ‘you have until the morning to decide’. And decide he did, he called me
the next morning and said okay let’s see about Summerlin.
I made
the call to my VP who was on vacation at the time, I left him a voicemail. He
called me back within 20 minutes saying: ‘Amanda, you just made my day, my
month, my year!’ We set up a date and time to interview with the onsite team for
the following Monday. In the meantime we called the movers and put them on
hold. Within one week our life had taken a left turn at San Bernardino and took
us north on the 15 frwy to Las Vegas. We moved that following weekend to LV but
as a condition of my contract I had to stay in LA another month until my replacement
could be hired. I stayed with Chris’s mom Trula in Redlands (70 miles east of
my LA Office) for 3 ½ weeks.
It was at
this time Chris had to finally start dialysis treatments. It was rough, really
rough. We received stacks and stacks of literature on the different types he
could choose and their respective benefits. We were overwhelmed. Have you ever attempted to read something and
the words just swam before your eyes?
Chris was
in and out of the hospital a few times as his body adjusted to the treatments
but because we were only engaged and not married at the time the doctors in the
ER would not share information regarding his condition. The day he checked out
of the hospital the second time we drove directly to the courthouse downtown,
applied for a marriage license and were married at 11:45pm that night on
12-12-12. We followed up our legal ceremony with our already planned and paid
for church ceremony a few months later on 4-13-13 in Sedona, Arizona in front
of our families and close friends.
I hear
the comment all the time: ‘you knew that your husband was terminally ill when
you married him and you still went through with it anyway?’ Well of course I
did, the vow of marriage speaks of in sickness and in health to death do us
part. My love for my husband could never be diminished by his sickness I will
stand by him until I am called home to God and even then I will still be standing
by his side.
And that
is where I am today, standing by his side every day. I decided to write about
Chris’s journey in the hopes of finding a release for my own personal stress. I
have searched for caregivers support groups centered around those who care for loved
ones in need of an organ transplant but have not found any in the LV area. My
company canceled their mental wellness coverage that used to be a part of our
healthcare package. And so I will write to get some relief. If this blog finds
you I hope that it helps you or someone you love to realize that we are not
alone.
More to
come.
Thank you
for reading.
Amanda
