Monday, December 15, 2008

Roller Coasters-{Part 1}

I love roller coasters! I have since I was a child. I love the feeling of complete abandon when you drop off the hilltop and plunge into the dip. I love the anticipation and anxiety that draws your stomach muscles tight when you're climbing the hills. I love the pure fear when you whip around the curves and it feels as if you will fly from the tracks. It all combines for pure excitement and joy in me! I always want to go again, I can't get enough!

Abandon, anticipation, anxiety, fear, excitement, joy..........all adjectives used to describe my feelings about a good ride on a roller coaster. No wonder I feel like my life is a roller coaster ride at present! There's just one problem, I don't like where this roller coaster comes to a stop. When I come creeping into the station to disembark, there will be no smiling, laughing and wanting to go again. No, when I roll into this station, I will be leaving my dear husband behind.

You see, this roller coaster ride started the day he was diagnosed with Stage 4, or End Stage, Liver Disease. He has cirrhosis caused by his struggles with type II diabetes, elevated cholesterol levels, a previous injury to his liver in an automobile accident and a genetic factor of which we were unaware until he was already very sick.

When we tell anyone he has cirrhosis, the immediate response is 'I didn't know you drank'. And, if they don't say it, you can see the question in their eyes. It's amazing that, even in the medical community, so many people think that the only cause of cirrhosis is alcoholism. My husband has been so embarrassed so many times since his diagnosis. We have even had to tell nurses in the hospital that he is not an alcoholic. As a matter of fact, he has never drank very much at all; certainly never was an alcoholic.

For that reason, we have asked his physician to specify non-alcoholic cirrhosis in his diagnosis when being admitted to the hospital. How I wish we had that printed on a tee shirt he could wear when we go out! It would save so much explaining and so many misunderstandings. It might even save a few people from being guilty of judging their neighbor!

If we thought dealing with the diagnosis was going to be hard, we were simply naive about how hard dealing with the disease was going to be. It didn't take long to burst that bubble! He was so tired he thought it couldn't be any worse. He didn't have any real pain, except for that which he had dealt with since the accident. Nothing other than the fatigue really bothered him very much.

As the days passed, the fatigue continued to worsen. Trips to the gastroenterologist reassured us that his liver was still functioning fairly well. We were lulled into a sense of complacency and believed this would take years to make any real changes in him. Then, the inevitable happened.

Barely one year after his original diagnosis, he suddenly became very ill and had to be taken to the E.R. by ambulance. His blood sugar was 30 and falling fast. They immediately began to administer glucose to bring it up, but they couldn't get it to stay up. He was halucinating and talking completely out of his head. He didn't know where he was or even who he was. Tests revealed he was in acute renal failure and now liver failure.

After a week in the hospital, we were released and given a follow-up appointment with his GI doctor. That appointment was in October of 2007. At that appointment, we were told he was now in liver failure and that, if he was interested in having a transplant, this was the time to go for the evaluation. We were totally shocked and speechless. Neither of us could even think enough to know what questions to ask the doctor. He was gentle and kind and told us to think about and pray about it and get back with him within a week with a decision.

Ultimately, for many reasons, my husband decided not to try for a transplant. So, we began the journey of living with end stage liver failure, not just disease anymore, but liver failure. We were told he had maybe 6 months at the outside. We came home and told our families the news. Then, we just put it aside and decided to live our lives and let God handle everything.

The weeks passed and he didn't get any better, but he didn't get any worse either. The Christmas holidays came and went and he was doing amazingly well. Soon March, 2008 rolled in and we were at our 6 month window. Yet, he felt fine. Again, we were lulled into a place of complacency. Little did we know that safe place was soon to be invaded in a horrific way.

{Please come back for the next installment of "Roller Coasters"}

3 comments:

Raggedy Girl said...

Diane:
I am holding you both in my daily prayers and I stand amazed at the strength of your character.
Roberta Anne

bj said...

Di, I am so sorry for this...
I can't even begin to imagine losing a husband. Or to have one so sick as yours.
The sweetest sister*in*law in the world had this very same thing...she was more than my S.I.L...she was more like my sister and my best friend. She passed away last year and I will miss her until the day I die.
I pray for you and your husband and, right now, I am holding your hand with my heart.
bj

Felisol said...

Dear Diane,
Living side by side with death as your third partner for this long time must have been tearing you apart.
We all know that someday,..faraway in a remote future we may have to part from our spouses, if Jesus doesn't come to collect us all home for eternity.

But living there day by day, seeing your loved one deteriorate day by day; it's too gruesome. Having to handle people's prejudices along that road must have torn you apart.
Except, it didn't. Somehow you got through and found smart ways to fight back.
Like in Job's book, "Also when you say, you don't see Him, He sees your cause, and you must wait for him."
I thank the Lord for supporting you, even when you felt all alone, and for making you his masterpiece.
From felisol