Sunday, May 20, 2007

how i learned to love a dog, part I

May 19, 2002, my husband tells me he has a terrible pain in his chest, right side. Feels like a muscle pull, maybe, but he spends the night sleeping upright. It feels better that way. The next day it's worse and the next night he sleeps leaning forward over a pillow so he can breathe.

Mike is really sick, has been for two years, but so much worse since October. His weight has dropped to 124 pounds; he's skeletal. His blood sugar's completely out of control and the pain from chronic pancreatitis is constant. Despite all of this, his gastroenterologist started him on Interferon and Ribavirin for Hepatitis C. It's the Hep C that's killing him, making a ruin of every organ in his belly, working out from the liver so scarred from cirrhosis that it's hard and barely working.

His pancreas is nearly calcified, the veins leading into the liver are enlarged and he has portal hypertension, a dangerous complication of cirrhosis. He's swollen with ascites, fluid building up in his abdomen. The spleen is huge and tender and he has gastric varices that are leaking slowly, keeping him anemic and weak and very tired. His platelets are extremely low, making the treatment for hepatitis a great risk. He sees his doc twice a week and has his blood checked weekly. He gets transfusions regularly, but they never help for long.

I mix his Interferon shots every Tuesday, following the instructions precisely, allowing the medication to settle and all of the bubbles to fade away. The drug makes him feel horrible, but he feels horrible anyway. He sleeps for days after the shot, but he sleeps all the time anyway. He can't eat, he's miserable, he's dying. I'm sure of it, that he's dying. I mix his drug every Tuesday. I give him the Ribavirin every day. I check his blood, give him his insulin. Sometimes I knock him out with Ambien if he's in terrible pain and nothing's working. I put him to sleep, I don't know what to do to help so I put him to sleep.

I try to put him to sleep when this pain won't go away, the one in his chest. It grows worse. He sleeps most of the day Tuesday after a terrible night, but wakes up around 6 pm and he can barely breathe. I want him to go to the hospital, he doesn't want to. He's been there a couple of weeks already this year, but the pain's worse, he can't breathe, and he relents.

I give him the shot first, though. The 12th shot of Interferon in this six month course he has to take for Hepatitis C, the result of a surgery in 1982 or maybe the result of snorting coke through a rolled up $20 passed around the table, who knows and what does it matter in the end? One method of acquiring this nightmare of a disease makes him an innocent victim and thus more worthy of sympathy. The other makes him a participant in his own destruction and makes his disease a shameful thing. Innocent or not innocent, he never signed on for this slow death, who would ever sign up for this, this horror?

We're at the hospital and the pain is excruciating. He has a high tolerance for pain, this man of mine. He's already on meds for chronic pancreatitis, now shots of morphine in the ER but they're not working, the pain just gets worse. X-rays, a CT, and a worried doc telling us there's a big shadowy thing on the right side of his chest. He's admitted by 3 a.m. and we spend the next 10 hours in a room with no information, with him fading in and out, he's out of his head, struggling for breath even on oxygen.

He's whisked away to the pulmonary lab at 2 p.m. and more tests. My childhood friend, now one half of Mike's ace medical team, holds his hand through the procedure of having his chest punctured to draw out the fluid from a pleural effusion. Suddenly he's back, he's coherent, alert. Still in pain, but he's back as the result of finally being able to breathe. He looks at me and I can see him. He sees me and knows me and I feel a rush of relief.

Brad tells me what's going on and says that this should help as long as it's not an empyema. Empyema, what the hell is that? It's a big clotted solid mass of infectious crap accumulating in the chest. Not to worry, though, it's something we rarely see and usually just in street people and folks without medical care. We haven't had one in the hospital in over a year. We'll do a chest tube to drain and he'll be fine, he's already better.

Children in white coats come to his room to puncture his chest and attach a pump to drain his chest of fluid. All is well, everyone's cheerful, his daughter stays for a bit while I run home to feed the cat, shower, change clothes. We have had angels from AA at the hospital all day, just there, praying, letting me know they care. At home I find a cooler with food and cards stuck in the door and flowers. It's a comfort to be loved when I'm scared out of my mind.

I'm back at the hospital in an hour, encouraged, hopeful. Mike's smiling, says the chest tube hurts, but he feels a lot better. There haven't been any nurses come by in hours. He needs a pain pill and is worried about sleeping. No nurse. Where are the nurses?

Another 90 minutes and still no nurse, though plenty of promises. He's seeming more agitated and restless. I give him his regular pain pill from the bottle in my purse and he asks for an Ambien so he can sleep. I go to look for a nurse because he doesn't look good. Nothing's coming out of the chest tube and he's not looking good. When I try to talk to him, he's not making any sense. The nurses promises to come. I go back to the room and wait.

This goes on and on and on. Two techs come and check his vital signs. I am watching him, knowing something's wrong. I ring for the nurse and an aide comes, looks at him, says he's just agitated because of the pain and it's almost time for more pain meds, don't worry. It goes on and on and on. I don't know what to do and I don't know if I am crazy, but he looks wrong, he's mumbling and moving around on the bed, when he opens his eyes he has this crazy unfocused look. I try to get him to hear me, to see me, and he doesn't. Something is wrong. Where is the fucking nurse?

Again I go to the desk, now I am agitated and crazy because no one is listening to me. I find the nurse in a side room bent over a chart. It's 2 a.m. and I finally convince her to come look at him. Just look at him. I run back to his room and stand in the door to be sure she's coming. She's dawdling along, it feels like a fuck you to my concern.

She walks in and I'm telling her again this is wrong, there's something wrong and she lifts his eyelid and whirls around and runs to the nurse's station. She runs back. Runs. This bitch I couldn't get to come to the room for hours is running. She has a pulse oximeter and she snaps it on his finger and it reads 50. Fifty. His blood oxygen level is 50.

She yells something over the intercom and suddenly the room is full of people and someone puts a tube down his throat and someone's squeezing a bag and I hear heartrate 196 and someone's on the phone with the doctor and I am standing in the corner watching all of this and thinking even if he lives I have just lost my baby. He will never be the same because I've sat by his bed thinking something was wrong and not knowing and trying to get help but did I try hard enough? and his blood oxygen has been half of what it should be, half, and I have done nothing, I have let this happen. If he lives this has ruined his brain, it's been hours, he is gone and I love him and he's gone and I let it happen, I watched it happen, I sat right here and watched.

Something clenches up in my chest and I feel as if I can't breathe and they take him away to ICU and I ask one of the nurses if he will be okay and she looks away and says I don't know, there's no way to tell, I'm sorry. The clenched thing in my chest shatters and I can't quit crying now and it will never stop, these tears, because I let this happen. I watched.

More to come in "how i learned to love a dog, part 2."

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Blogger Red7Eric said...

OMG, this is heartbreaking and so, so scary. You and your guy are so brave, more courageous than I'm afraid I'd be in either of your shoes ...

May 20, 2007 9:35 PM  
Blogger CactusFreek said...

Please don't blame yourself! You are not a doctor, so how were you to know? When someone is that sick, nothing seems right.You did everything you had the power to do. It's the slackass nurses that have to answer to you if something has gone terribly wrong. Don't even think about blaming yourself! Seriously!

May 20, 2007 11:20 PM  
Blogger Andrea K said...

Powerfully written post. That had to be so traumatic for you. I have to admit I'm eager to read Part 2 now.

May 21, 2007 6:04 AM  
Anonymous Ms. Place said...

Darling, BAB. My heart aches for you and for Bill. I can only hope and pray that your second installment will give us good news.

No one should suffer so! Not you, or Bill. I hope you are not waiting in that hospital alone.

May 21, 2007 6:29 AM  
Blogger Willym said...

Oh Lady... what you guys have endured. Most of us wish we had half your strength and we have not seen half your pain.

May 21, 2007 7:02 AM  
Blogger p.alan said...

Thanks for sharing. I was in the room right there with you.

May 21, 2007 7:23 AM  
Anonymous Tater said...

Just checking in from a mini vacation. My God you two have been through the ringer. Perhaps it is this trauma that has forged the strong big hearted person you are today. I just had no idea how much you have been through. All that heartache and pain. I am just in awe of you. Your writing, your intelligence, your stamina, your ability to exude so much kindness and caring, and all of this after enduring a profession of horrors, and Mike's medical issues... Good Lord woman! You deserve no more drama in life for at least the next twenty some odd years or so. This piece is fantastic, and really heartbreaking. Can't wait for part two...

May 21, 2007 9:57 AM  
Blogger David said...

Something very fascinating in how you processed all this. If it were me, after the nurse finally checked and all the madness happened, I would have ripped her the newest, biggest asshole she had every experienced. It would never occur to me that I didn't try hard enough. I find that very interesting that the first person you seem to want to blame is you. Whereas I am the last person I usually want to blame. Something to think about.

May 21, 2007 12:05 PM  
Anonymous lynette said...

david, come back for part II, wherein i get pissed :-)

May 21, 2007 12:58 PM  
Anonymous lynette said...

but it is funny, isn't it? i share this trait with a lot of women i know, and we marvel at the ability of men to project responsibility to easily onto others, whether it belongs there or not. on the whole, i think the response is gender-based, but i'm talking in big generalities.

May 21, 2007 12:59 PM  
Blogger evilganome said...

Lynette, what an amazing piece of writing. I am left pretty speechless. Like David I would have climbed so far up the nurses ass that she would have seen my face when she tried to brush her teeth.

I am happy that I know the story has a happy ending, but Christ Almighty!

May 21, 2007 1:41 PM  
Blogger Beula said...

I almost couldn't read this for a whole host of reasons. My first question is why wasn't the pulse ox on him in this first place? Chest tube = pulse oxcimeter. Is pretty standard practise. God protect us all from ill health 'cause the traditional health care system can't. It is broken.

May 21, 2007 3:20 PM  
Anonymous lynette said...

no shit, beula. he was actually on a monitored floor and the techs had been writing down insane heart rates and BPs and no one paid attention. you'd think with his little heart pounding away at such a frightening pace the snoozers in the monitoring room would have done something.

it gets scarier and scarier over the next weeks in ICU. God help anyone who goes to the hospital alone.

May 21, 2007 3:25 PM  
Blogger rodger said...

That is some powerful writing Lynette, you put me right there with you. You two so deserve nothing less than a charmed life at this point.

Looking forward to the rest of the story.

May 22, 2007 3:00 PM  
Blogger more cowbell said...

HolyShit, Lynette -- I had no idea. How the hell does one come up with words of comfort or understanding around that? I certainly have none. Your writing is superb.

My mom was a psych nurse before she was diagnosed with Multiple Sclerosis. She went back to college when I graduated high school, worked her ass off, graduated at the top of her class, became charge nurse in no time. She loved her work. I was so proud of her. She probably didn't work for more than 5 years before MS slyly began to take over. She worked in a friggin' hospital, and could not get a diagnosis.

anyway. Now she's most thankful for her nursing background so she can check conditions for herself. She says she shudders to think of facing this without that inside scoop.

It's a shame. You'd think for as much we pay for medical care in this country, we'd earn the right to depend on that whole Blind Trust thing! Bastards.

And hey, it's so easy to beat up on ourselves, and I know this was some time and you've been over it in your head every which way, but ... you WERE THERE. What if you hadn't been. You were there. That made the difference.

Excellent writing.

May 23, 2007 1:00 PM  

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