[headline_arial_small_centered color=”#000000″]There Is No Bad Day[/headline_arial_small_centered]
[headline_tahoma_medium_centered color=”#000000″]Chapter 5 – Desperation, Confusion, Insanity, Cookies[/headline_tahoma_medium_centered]
[headline_tahoma_small_left color=”#000000″]Emergency Room 2.0[/headline_tahoma_small_left]
Facing reality head on can be hard. But my body’s self-destruction had to be faced. I was losing an average of one pound every single day. I knew I couldn’t sustain that rate for long. Already feeble, it required all my mental and physical strength just to lift myself out of bed and onto my feet.
The morning of the crazy blood clot explosion Nan and I held each other and cried for quite a while after she got the kids off to school. At a loss, we called the only other place we could think of to get additional help, the University Hospital. My GI Doc assured me they would say the same thing he was saying, but I saw no other option than to try. Their soonest opening was nearly three weeks out. The only way to jump the line was the Emergency Room. In desperation we packed up and made the 40 minute drive. I’m pretty sure fist sized blood clots and severe weight loss daily constitutes an emergency.
Nan pushed me into the ER in a wheel chair and we joined over 40 other people waiting to get in. Since I did’t ‘appear’ to be imminently dying, we waited…and waited…and waited. We sat for hours in the ER lobby as I shifted constantly in discomfort in my chair. Once they finally gave me a room in the ER, we had the agonizing experience of a new ER Doctor who knew nothing of my condition and who had no idea what to do with me. After he heard my story and took an X-ray of my bowels, he recommended I go home!
WHY DO ALL THESE DOCTORS SAY THE SAME THING!! Why are they actually here if they can do nothing to help someone who is dying?! Furiously I flipped out at the Doctor: “I’m not going anywhere! My wife cannot take care of me. She’s not capable of handling my needs and giving me medical attention. We have four young kids at home who are freaked out by watching me die. And my wife is freaked out watching me withering away. I am not going home until someone figures out how to help me! I can’t continue to survive losing a pound every single day. If you send me home you’re sending me off to die! What do you expect me to do? Are you telling me there’s nothing you can do and I should just go home and die? Sorry, that’s just not an acceptable answer to me.”
I demanded to speak with the gastroenterology specialists, refusing to go anywhere until I saw the specialists for my disease. When the Doctors were gone deliberating, Nan and I just cried, and prayed, and pleaded with God that somehow they would admit me, and get the specialists to treat me.
Over an hour later a nurse finally came in and informed us they decided to admit me and give me a room. THANK YOU!!
I could almost see the weight lifted from Nan’s shoulders as relief flowed into her face. She desperately needed a break from caring for me at home.
[headline_tahoma_small_left color=”#000000″]Trust Me![/headline_tahoma_small_left]
Hospitals are wonderful. But you can get too much of a good thing.
What a huge relief to have nurses waiting on me at all times! Nan desperately needed a reprieve from that burden. I stayed in the ER cubicle overnight, and the next day got moved to a nice suite with a view of the mountains and my own bathroom! Living the high life now! It’s the little things in life right? They had me on constant IV hydration which restored my energy fairly quickly. And I also had IV steroids, as well as IV pain drugs, all of which significantly improved how I felt. But the hospital brought its own new challenges:
– Day and night prodding with needles
– The frustration of no good answers
– Arguments with Doctors about diet.
– Loneliness creeping deeper daily.
– Agonizingly repetitive and undesirable food choices.
I began updating my family and friends daily on facebook and email from the hospital, here’s how the week went down:
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October 16, 2012
WOW! Perspective changes everything. I’m starting prep for a CT scan in 1 hour and the nurses braced me for this nasty contrast fluid I need to get down. I was in HEAVEN sipping the whole thing down slowly! I slurped every bit out. It seriously tasted like an amazing new Slurpee flavor to me and brought me a huge grin and laughs with my CNA. After 24 hours of ice chips…barium sulfate is great it turns out! I can’t wait to start the next bottle in 5 min. Life is good;). (we’ll see if I’m still raving after 3 of these bottles)
October 17, 2012
I get to keep my colon which I’m thankful for. No surgery urgent at the moment.
But I still don’t have a solution to the piercing, consistent pain. Probably need to try a different drug approach, should get recommendations later.
40 hours on ice chips so far minus the little barium sulfate binge last night. Good times!
October 18, 2012
I was feeling good enough to sit up to eat today…pretty nice to be out of the bed for a change. And the view is a lot better from over here. They need to see how I’m progressing tomorrow and then we’ll know how well the approach is working.
So all the doctors I have spoken to are ADAMANTLY telling me to trust them that it makes no difference what I eat. That I can eat anything on the menu and it will not possibly hinder my progress in any way. The drugs, they say, will remove the inflammation, and the food is inconsequential.
But I can’t bring myself to believe it for some reason. Part of me wants to believe them because it would be so much easier. But how is it possible that what I put into my colon has no effect on it?
Note: You can follow me on Facebook by clicking here http://Facebook.com/TrulyAmazingLife and clicking ‘like’
An Email later to Nan:
From: Aaron Kennard
Sent: Thursday, October 18, 2012 10:16 PM
To: Nan Kennard
Subject: Re: Food log
I want to talk to more doctors. I want to know what is going on. I’m concerned because my internal hemorrhoids are bulging out more and more with each BM and they hurt. I’m getting pretty frustrated by Doctors. Tonight I asked the nurse what it would take for me to be able to talk to one of the two specialists in IBD here. I want to speak to someone else, just to at least see how they respond to my questions. My current doc seems so confident in himself. And he looks me straight in the eye over and over and says ‘trust me, it doesn’t matter at all what you eat’.
What am I supposed to think about that? Do I just get over it and realize that’s what all these doctors think? I feel like I need to at least talk to some more doctors. I feel like I need a doctor I can relate to and understand. If it doesn’t matter what I eat, then why is all this pain when I have Bowel Movements happening now that I’m eating again? I can accept that perhaps regardless of what I eat right now I will have this pain with the movements. But then how am I supposed to heal while also eating when I have all this pain, diarrhea, and bulging innards?
I didn’t take any pain meds during the day and I felt fine. Tonight I’m going to take as much I can in order to hopefully sleep.
I love you. I miss you. I hope you are OK.[/content_box_light_blue]
I actually had a 30 minute argument with my GI Doctor and four of his fellows and students one afternoon. I hardly believed he could look at me with a straight face and tell me that food had zero effect on my condition. How could anyone say that? Food has no effect on my digestive system? Really? You’re joking right?
Nope. They weren’t joking. And it took a 30 minute argument for me to finally be worn down enough to just accept what he was saying.
“So you’re saying I can eat anything I want…burgers, brownies, ice cream…anything! And it won’t have any negative effect on my progress!?”
“Yes! Trust me. Just trust me!”
That’s what he left me with. Trust me. And believe me… I really wanted to trust him. I was in a super vulnerable state. Clearly the diets I had tried didn’t work. And the GI Doctor used that to prove his point. I had a hard time arguing with that because I knew that none of the dietary changes made me any better.
So I trusted him…kind of. I could never fully trust him though, because what he was saying was too far removed from logic and common sense for me to fully believe it, even in my weakened and vulnerable state. But I did decide to take him up on it, and enjoy the food while I was there as best I could.