Friday, April 29, 2011

Cloud, Meet Silver Lining

Scene: Me, in my messy bedroom, attempting to clean up the chaos of six weeks inattention. Suddenly I spot my heretofore still-too-tight skinny jeans in a bag of clean laundry. I gasp. Against all my wishes, they've been washed!

These are the jeans that I wore over and over for the longest time (far too long to admit publicly) because I was scared they'd be incredibly tight once out of the dryer. But M, being the doll that he is, made sure I came home to clean clothes when I left the hospital.

Overcome by compulsion. Must. Try. On.

Fear holds me back.

Compulsion wins over fear.

Jeans slide on. Easily. I take them off, check label, make sure they're right pair.

Yup. Will the magic hold if I slide them on again? Yup.

It's not worth the pain and suffering I've been through these past weeks.... but hey, at least this damn gall bladder disaster got me something!

Now I just have to make sure I don't eat myself back out of them while I'm recuperating at home, banned from the gym by Dr. No.

Thursday, April 28, 2011

Dr. No

Here's the good news: the most irritating drain was removed on Tuesday. Yay!

That means I can bend over again and do all manner of things I couldn't do before because the nasty thing pinched so terribly.

The bad news: the other drain remains, and tests show that the hole in my bile duct does too. Drat the little bugger, it's being so stubborn about closing up.

After the procedures I went home and soon developed a nasty temperature that turned into a 101.5 degree fever. Very uncomfortable night. I gave myself a break the next day and just rested. I felt like a sloth, but I also felt like my body needed it. I was white as a sheet all day. Feeling better now.

The doctor who performed the drain analysis on Tuesday (not my surgeon) casually said that since the hole wasn't closing and the drain was still collecting a lot of loose bile, the next step would be to run a long needle through my liver and attach a new drain from a different angle.

I cannot believe how easily doctors throw out these things like it's no big deal. I know they do a million procedures a day and most go just fine, but as my present situation shows, things can go wrong at anytime.

When my surgeon called me that night to see how I was feeling, he told me that he was going to line up a liver catheter (what they call it) for this Monday if my situation doesn't improve.

I really couldn't believe he was signing off on another semi-invasive procedure for me. Not a week has gone by since the surgery that they haven't done something to me. I decided I had to put up a fight on this one.

It's not always easy for me to remember that I have some control over what goes on in this process. Although I've gotten wiser over the years, I'm still your classic "good girl," the one who does what she's told. It's not innate for me to challenge authority, especially the type that comes packaged in the (mostly) male world of medicine. For me, doctors have always been vaguely menacing, not to mention dispiriting and soul-sucking, with their constant emphasis on weight, weight, weight over all else.

But I pushed those old reactions aside, took a deep breath, and simply said "No." He was a bit taken aback, but he handled it well. I told him I wanted a break, and felt that I needed some time to rest.

He launched into a discussion about how they do that procedure all the time, it's really nothing to worry about, it sounds worse that it really is, nothing would go wrong, etc etc. When he was finished I very politely reminded him that he had told me the exact same thing about gall bladder surgery. That shut him right up -- but to be fair, he was very cool about it.

So, out of this has come some very interesting information. I think I mentioned earlier that the docs were worried about my protein levels, which they said were very low. Protein is essential for healing, and since I'm not healing as I should, this is a key element, I think.

Doc revealed that the lowest number on the protein scale that would be considered normal is 13. Anything under that suggests malnourishment or starvation. My number was .... a bloody 5. I couldn't believe it when he told me. I had no idea it was so low.

I'm now eating some protein every 3 hours, whether I'm hungry or not. Even if it's just a few bites of turkey, it's better than nothing. And I have more protein drinks to choke down.

I wonder if that lack of protein was part of the reason I hit a bit of a weight loss plateau...? It's true that I like to pretend I'm a vegan/vegetarian, because it helps me focus on fruits and veggies, and over the past few years I've stopped eating a lot of meat. But I do eat it sometimes, so I wouldn't think I am that deficient. It's a bit of a catch-22 for me, because I feel like when I eat a lot of meat, my cholesterol goes up. But it probably would help my weight loss if I added more lean protein to my diet.

So, live and learn, and consume protein. That's my lesson for the day. I hope to someday soon have good news to share, and be able to get off this broken record of gall bladder despair. I'd much rather be writing about running 5K races, gorgeous hikes and rocking it out in the gym. Some day soon, if my luck finally changes for the better!

Friday, April 22, 2011

Not Quite Drained ... Yet

My visit to the doc did not go as planned Thursday.

I had high hopes that both drains would be removed and I would be free of the little monsters clinging to my insides and banging their stupid bulbous heads against my legs when I walk.

Doc said no. Apparently I am not sufficiently drained. Funny. Doesn't feel that way to me -- I feel like an empty juice box that someone keeps sucking on.

I try to eat, but very little appeals to me. I know, I know... six weeks ago I'd have been overjoyed by that. Now it feels strange and unhealthy. I eat one small yogurt and am stuffed for hours. I don't get hungry again after I have breakfast, but I know I need to eat regular meals. It's a chore to eat when you have zero desire for food.

Yet I am slowly getting stronger, I think. The stairs don't wipe me out as they did last week. I can walk a little longer, and I don't need to take a massive nap after every outside foray.

But I still sleep an incredible amount -- like 12 hours a night, with a few interruptions, and a good 2 hours again every mid-day.

Latest target for drain removal: Tuesday. But only one drain will come out, Doc says. The other will be "repositioned." At this point, it's been in my body over 2 weeks. I predict a lot of pain with this procedure. Ugh.

Happy Easter weekend everybody.

Tuesday, April 19, 2011

Just Call Me Homer

Because my hospital odyssey is finally over, and I'm back home.

Apologies for leaving you all hanging, but I just couldn't summon the energy to update from my hospital bed.

I was there for 10 nights and 11 days, and it was almost too much for me to handle. I think that was the loneliest experience I've ever had -- and it wasn't from lack of visitors. It's just hard to be far away from your family and be sick -- and I mean really, really sick. Like wake up at night and wonder if you're ever going to be yourself again sick. Wondering if you'll ever be able to eat again, or walk normally again, or have normal "plumbing" again. It was a very scary ordeal.

I'm not out of the woods yet. I am home with two disgusting and painful drains in my stomach. I hope they will come out soon, but don't know when it will happen.

The docs kept me in the hospital because I kept spiking huge temperatures overnight. I'd be up in the day and be fine, then as soon as I went to sleep -- zoom! My temperature would pop right up to 101 and higher. They finally decided -- even though I had two drains pulling old, leaked bile from my stomach -- that I needed more pumping, and various torture procedures involving sharp needles and tender parts of my belly followed. There's nothing grosser than watching a doctor pump nasty liquid from your stomach while you are (not sedated) under orders to hold completely still.

Finally they sucked enough of the old bile that was rife with bacteria from me, the temperatures stopped, and I was allowed to leave. I was sent home armed with yet another round of antibiotics -- I've been on them for the past two weeks -- but promptly broke out in a terrible itchy rash, so the doc said I could ditch them (thankfully!). The rash is awful; it mostly bothers me at night, of course.

I am so wiped out from three weeks of not being able to sleep or eat that all I do is snooze. If I walk 4 blocks, I will sleep two hours. I try to eat, but I can't get enough in me to get my protein levels back up to where they should be. Docs sent me home loaded with special nutrient drinks.

In between naps and snacks, I try to baby talk my damaged bile duct into healing so I don't need another surgery. I hope it's listening!

Somehow in all this I did gain weight -- but I still hope it's just weird hospital water weight. My legs are so wasted compared to how they were before I went into the hospital. I think I lost about two inches of muscle from my calves! I don't see how I can be heavier, but I am. It's the most bizarre thing.

Who knew such a simple surgery would come so close to killing me? Twix, I gather you had a rough time too. It's been awful. I just have to hope that now that I am home I can mend myself and gain back my strength. Otherwise, a very uncomfortable surgery looms in my future.

Saturday, April 9, 2011

Updating from the Hospital

The wall calendar across from my hospital bed says it's Saturday, April 9. I guess it must be, but how we got here from March 29, I don't remember at all.

You know that .00001 percent chance that a lapro gallbladder removal won't be successful?

Well, blog world, that's me. I'm your nearly zero percent chance of failure.

Before I start dishing out the drama, let me say I do believe I will be fine .... hopefully soon.

But yes, right now I am in the hospital, I have been for several days (this is also my second admission since the original surgery) and I'll be here for at least a couple of more days. If any of you have spent time in a hospital, you know it's just not fun. In some ways, I'm glad I've been too sick to notice anything for most of my stay. Now I'm finally getting more alert and .... well, it's not pretty.

So, to the good stuff! What happened, you ask? When last I left you I was on my way to the doctor's office Friday, March 25, a few days after what we all thought was a successful gallbladder removal and a fairly normal recovery. My biggest worry was how the gas they use in the procedure had bloated up my belly.

Doc said I was healing nicely, told me to keep moving, sent me home. I did as he said, didn't go to work Saturday, but felt like I would be ready by that coming Tuesday, the 29th.

Slowly, over the weekend, I noticed a gradual shift in my recovery. Things seemed to be headed in reverse, in a way. Where I'd had less and less bloating, I started noting more and more. By Monday, I was fighting intermittent but very definitive waves of nausea. I'd only barely started nibbling solid food Friday, and by Monday night I'd stopped eating again.

Monday night, sitting on my bed reading with the cat beside me, I suddenly felt a small little furl of heat up my belly. That was my only warning, and then the flare was an inferno. A raging, searing pain hit me in my whole stomach, and I shot off the bed, eyes wild, and started pacing, figuring, wow, I must have the most awful post-surgery gas in the world.

Twenty minutes of that, with no abatement, and I thought, I'll take pain pills.

Promptly threw them up. OK, I figured, stomach can't handle those right now. Don't panic. Keep walking.

It finally eased after about an hour, and I collapsed, grateful, on the chair. Thank God it's over, I thought. Hah.

The same thing happened, again and again and again all night long, roughly every few hours, and the vomiting grew more severe, as did the pain. It was like someone was running a blowtorch over the inside of my stomach, burning me from the inside. I couldn't keep down any pain meds, and by morning I was a mess. M bundled me into a cab, and weeping and grimacing, we got to the doc's.

He said it would likely clear up, was some loose bile, gave me different pain pills I could keep down, and told me to drink gatorade and call him in the morning. The pain pills knocked me out, blisffully, and if I timed things right I could keep down about 1/2 of what I drank. But Wed the 30th, I was thinking I couldn't handle another day of this.

The doc thought so too. Come back in, he said. That meant I had to get myself back there again alone, since M had left for work already. Thankfully he'd laid out clothes for me, and what I couldn't get on (socks, bra), I left.

Back in his office, sweaty, stinky, numb from painkillers but with the agony clenching away at my gut, the doc sent me for a radiology exam. You know... the one where you have to drink six cups of disgusting barium.

Let's just say it was a terribly experience for everyone involved, me and the tech staff, who were incredibly helpful and understanding. Once they felt I'd kept enough down, they did the test quickly and as painlessly as possible, but I was still barely able to stay on my feet after all was over.

I'll fast forward here, there are so many terrible details to note -- some as commentary on our medical system --but this will take hours if I don't move along.

I was admitted to the hospital once the test showed a definitive leak of bile from the damaged duct. I spent a horrible night undergoing surgeries for another procedure, and the next day was under general anesthesia again for a stent placement. Another night to recover, then I was discharged Friday April 1. Yes, what a fool was I.

We all thought the problem was solved and things would resolve gradually. I did start to feel better as the weekend progressed. But by Sunday night, things were headed South again. I still couldn't eat anything, and then I got diarrhea, and more pain, and .... oh, just awful distress. I was exhausted, and still recovering from the last bout, so my body gave out very quickly. Also, my stomach seemed to be swelling -- it was so tender and distended. By Monday, my knees were buckling briefly before going steady everytime I got up from the chair or bed. I couldn't bear to have anyone touch my stomach. I called the doc, he said take Immodium AD, and call me in the morning.

I said ok, popped another pain pill, laid down to find a comfy position, and a few hours later (needing the bathroom), realized I couldn't get up from the bed on my own. I had to wait for M to get home from work to help me sit up.

Tuesday, I went into the doc's office. I don't know how I got there, I really don't. I hobbled like a 90 yr old. Octogenarians held doors for me when I tried to get into the facility I needed.

The doc looked at me, called for a wheel chair, and send me down for ANOTHER barium exam. The only way to know for sure what's going on, he said.

More torture later, and we had our answer: stent repair didn't stop leak, and the belly was dangerously full of fluid.

I was back in the hospital. This was April 5 (I think). But before I was even wheeled to my room, my doc sent me to an imaging center where two docs laid me out like a sixth-grade frog dissection project and implanted two drains -- one on other side of me. They're in there still, drawing and sucking.

Incredibly weird to be awake but numb (ish) while they push really, really, really long tubes into you. Weird and gross and kind of miraculous too.

Once that was down, without pause, I was wheeled into another room, put under general anesthesia, and a second stent repair attempt was made. We shall see if it holds.

So, while this went on the lab guys ran my blood and found elevated white count (sign of poss infection) and I came out with a temp/fever and a "tacky" heart rate, so I was stuck in special sort of recovery room. I vaguely recall young residents appearing in the wee hours, whispering and scribbling about peritoneal cavities and sepsis and fevers.

Two days later, I'm mobile but limited because of the drains, and the painful areas where they are still stuck in, but I'm a normal temp, a normal white count, and am moving on to more and more solid food. Only a few more days will tell if the second stent repair worked -- the drain closest to the damaged duct is still producing a lot of fluid every few hours. That's either a sign there was a huge build up there (likely) or that the leak is still a problem (time will verify).

I have to wait, relax, and be patient. Hopsitals are hard places to be when you no longer really feel sick. But I need to heal, so I'm holding on and trying to stay busy. I'm still very tired, not quite myself.

By the way, SOD says I gained 20 lbs in past week here -- that's from all the fluids they shoved into me. Slowly going down (I hope!).

More later -- must rest now.