The Beginning

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