Whomever drew this is a minor diety…
I know this is old news, but whenever I trip over the fact that in America pharmaceutical companies are legally allowed to jack up prices on medications that keep people alive by over 5,500 percent without warning… It kinda torques me off a bit.
Martin Shkreli is still an immoral, unethical, pathetic excuse for an American in my opinion.
So many times, so much illness, so much pain…
When my Viennese snickerdoodle Dagmar and I got married way back before digital cameras, life was a whirlwind, mostly undocumented. Of course we spent a lot of time and energy at our respective jobs, but also with our new household, riding the motorcycle, going to parks, traveling the area as much as time and money would allow, me playing in the band, she helping with equipment. We kept busy! In our early 30’s, life was pretty full, and we were happy — even if Fruitloop-kitty had a tendency to pee on her foot every now and then.
One day, “I’m tired,” she said. “I don’t tink I can go mit you to vatch you play in the band tonight. Maybe you can go by yourself?”
That’s okay, no problem. But a week later, “I still don’t feel vell,” she said.
Life for me became a series of medical vignettes. I remember little snapshots of life. Milestones of a sort. No, not milestones — mileposts. That’s a better word. Not a goal, but rather a spot to pause and remember.
I remember one day playing with the band at an outdoor concert. We were playing the “Beer Stage” at Rivercade, an annual festival in Sioux City. George Thorogood and the Destroyers had just finished playing on the main stage, and people were headed to the beer tent. Our job was to keep ’em there long enough for management to sell enough beer to afford to pay us, basically. The good part is that it was a built-in crowd — we didn’t have to work to get the customers IN the door as they were all ready for a beer, we just had to keep their attention long enough that they’d hopefully buy another… We had a couple hundred people in the beer tent, dancing and having a good time, when out of the corner of my eye I saw our singer drop the microphone and jump off stage. My eye followed the motion, and in an instant I realized Dagmar had passed out — she was on the ground, slumped in a heap, just to the side of the dance area. She was in danger of getting tromped on by about fifteen half-drunk concert-goers who were oblivious to the unconscious lady in the shadow… By the time I got there, seconds after the singer got to her, she was sitting up, blinking. “I didn’t feel so good,” she said.
I remember a neurologist looking at the results of an MRI, asking Dagmar, “Do you often have migraines?” Dagmar shook her head and replied, “No, I just get a little headache every vunce in a while, but I don’t have major pain.” The neurologist gaped at her. “No,” he said, “you have migraines. You have migraines so bad they’ve scarred part of your brain…” Dagmar looked at me, “Vell, these headaches, they don’t hurt as bad as my tummy,” she said.
Vignettes. Little snapshots.
I remember the story she told coming out of anesthesia, half in English and half in German, about a princess taking a red rose to a castle. I remember a few days after she told me the story about the princess she collapsed while being discharged from the hospital.
I remember spending our first anniversary in the hospital as she recovered from cellulitis in her face, most likely caused from an infection from the surgery. I sat up for 22 hours straight, watching her. I remember waking up in the middle of the night on a chair in the hospital, wondering what all the noise was. “I can’t believe you slept through that,” the nurse told me. “Your wife nearly died. It’s a good thing she pushed the ‘call’ button or her blood pressure would have kept dropping… It took us five minutes to pull her back. And you slept through it all…”
I remember how happy she was when she found out she was carrying, and how utterly crushed she was when the miscarriage happened. Horrible, wracking sobs… This happened four more times in the coming years. Sobs each time.
Vignettes. Little snapshots of life.
“You go ahead,” she told me. “I’m not feeling very well again.”
I remember when they removed her first ovary (you can read that story HERE). By that time she’d had so many surgeries that the scar tissue in her abdomen was pulling her internal organs out of place. They were supposed to take a cyst from her right ovary, but when they got in there, her right ovary was fine. “We started looking around,” the surgeon told me later, “and it turned out that the cyst was on her left ovary the whole time. But we thought it was on her right ovary because both ovaries were on the same side — the left was behind the right one.”
I remember when they had to go in to remove a blood clot.
I remember when she started bleeding from her navel one day. Oddly, it didn’t surprise me.
I remember being terrified that they’d have to remove her remaining ovary. “I can’t have kids,” Dagmar said, “but vhat scares me is dat the doctor told me if I had one more operation they’d have to remove my bowel. I don’t vant a colostomy bag…” When they did do the hysterectomy they had a special surgeon there whose main job was to pull out her intestines and cut off the adhesions and scar tissue. I remember being very relieved when they said they got her all put back together with no colostomy bag problems…
It all blurs together after a while. Which hospital were we in for what operation? Which illness happened when? Does it really matter? Just keep putting one foot in front of the other and carry on… Dagmar smiled and took food to other people in the hospital on her way home from work, refusing to show her own illness. I worked as hard as I could, constantly afraid of not being able to make the bills.
“I’ve never seen such a bad sinus infection,” the doctor said. “There must be some reason she keeps getting these.”
A few months later, “this is the third time she’s had pneumonia,” the doctor said. “There must be some reason for this.”
Through it all, Dagmar would do her level best not to show any pain. “Vhy should I moan about it?” she asked. “Udder people die. Me? I’m just sick all the time.” We’d go out and see friends and she’d be as bubbly and happy as she was in 2000 when we met, flitting around the room, beaming her smile at whomever was lucky enough to be there. Then when we’d get in the car, “I don’t feel so good.” The smile would still be there, but it would be strained, her green eyes a little unfocused. The next day she’d stay in bed.
I remember coming home from work and finding her on the floor, writhing in pain. “It’s just a kidney stone,” she said through clenched teeth. “I get these every once in a while.” A pause while she gasped for breath. “A couple more hours and it’ll be over.”
We took her to the emergency room for kidney stones once. She spent seven hours curled up in the fetal position on a cot while we waited for a doctor. Not only would the nurses not give her any aspirin, but they wouldn’t let Dagmar take the aspirin she brought herself. She finally went to the restroom and passed the stone on her own. A week later the hospital sent us a bill.
So we didn’t go to the hospital for kidney stones any more.
I remember. I remember hearing her crying quietly into her pillow at night, trying not to wake me. “Vhat can you do?” she asked. “Why should I wake you. It’s just pain. I vish it would go away, but there’s nothing you can do. Now you go back to bed. It’s just those cramps again.” She held her side and rolled over, a small trail of blood coming from her belly-button.
I remember the doctor saying, after looking at Dagmar for five minutes, “Really, she’s in good shape. We don’t know why she’s having all these problems.”
One doctor said it was her gall bladder after looking at Dagmar for five minutes, so that came out. (That was in 2002, the surgery that caused the cellulitis in her face — we think that operation is the one that led to the current problem.)
One doctor diagnosed her as having polycystic ovarian syndrome after looking at her for five minutes and said that was causing all the problems. Once she had no ovaries, well…
Celiac’s Disease. Crohn’s. Massive sinus infection. Let’s do more tests… Are you SURE these are your symptoms? What’s with the rash?
The last year has been difficult. Dagmar was ill more and more often, and more severe cramping. “I have pains in my arms und legs now,” she told me a few months ago. “I feel like someone punched me in the gut.” Oddly, the dark circles under her eyes accented the green, making her Gypsy visage the more mysterious. “It feels like I have weights on my arms und legs.” All I could do was bring her tea, tuck the blanket around her, and make sure the ever-present barf bucket was close at hand.
“Does she have Celiac’s Disease?” I asked the doctor during the five minutes we were allowed to see him. He shook his head. “No, that’s not it,” he said. A week later we were back in his office again for another five-minute visit. “I think she might have Celiac’s Disease,” the doctor told us. We went shopping and spent most of our remaining moolah on gluten-free food, a requirement for Celiac sufferers. A week later, “It’s not Celiac’s Disease,” the doctor told me on the phone.
A few days later, “I don’t think I can go to verk today,” she said. “I’m really feeling pretty bad.” We went to the doctor for more tests later that day. I cornered the head nurse. “Look,” I said, “something’s gotta happen. We can’t live like this. She’s been sick for EIGHT YEARS, dammit! You’ve been treating her for two years. If you guys can’t find the problem in two years, send us to someone who can!” That’s when we got the referral to go to the Mayo Clinic. To be honest, I think the doctor had already come to that conclusion anyway, but it made me feel better to harangue the nurse…
So we took Fruitloop the Diabetic Cat to my more-or-less-brother-in-law and sister’s house and taught them how to give a cat a shot, packed up the dog, and headed to Minnesota.
Rochester, Minnesota, home of the Mayo Clinic, looked startlingly like… Well, like a town. We pulled into the Super 8. Dagmar checked in while I started loading our stuff on the rickety little cart they provided, Zoey-dog looking on in dogged amusement. I was just adjusting the last bag on the cart when Dagmar came back out with two little key-cards. “Ve haf a room on the third floor, but we have to be out by noon Thursday.”
A walkway between two of the Mayo’s buildings
“That’s not gonna work,” I said. “On the phone they said we could reserve the room for two days, then extend the reservation as much as we need.”
“I know, but they say there’s an antique convention in town this veekend and all the hotel rooms in town are all full.”
I started to get angry. We went up to our room. I got more angry. “This doesn’t look anything like the picture they showed on the Internet,” I hollered. “This is NOT going to work!” I’d brought pretty much my entire office with me, under the impression that the hotel room would have a desk upon which to put my computer and two monitors. “Where’s the desk?” I demanded. I looked out the window. A fine view of a parking lot under construction backed by a factory of some sort. The only thing that made the jackhammering bearable was that it was being drowned out by the factory noise. “I need a desk, dammit. Their website clearly indicated a desk!”
Dagmar pointed to the little end table next to the bed. “Vell, if you push that little bitty table over by the tiny refrigerator and put the two of them together…” her voice trailed off as she looked at my face. “Maybe I should go downstairs und see if they have a different room.”
By the time she got back, I’d calmed down. But she was successful, and we moved across the hall to a different room — one with a slightly larger table. “It’ll work,” I said sheepishly. Dagmar had ridden the entire way from Sioux City to Rochester unable to lay her car seat back because I’d insisted on taking my computer and hadn’t complained. Here I am, stomping and fuming about minor annoyances when she’s in pain… A look at her face confirmed that she was, indeed, hurting. “Why don’t you lay down, Schnook?” But she wouldn’t — not until the clothes were unpacked and put away, the dog walked, and the mini-fridge stocked.
Up at 5:30 the next morning, showered, and off to the clinic… We left the room early as we weren’t real sure where we were going — only to find that the hotel had an hourly shuttle bus to and from the Mayo. Convenient! We boarded the 6:35 bus and were dropped off at the Clinic about ten minutes later.
The Mayo Clinic’s main entrance
The Mayo is not one building. We were supposed to check in at the Gonda Building, then use the “subway,” a series of tunnels, to walk from Gonda through the Mayo, under the street through the Hilton, through the Guggenheim, past Harwick to the Baldwin Building. The check-in process took, literally, thirty seconds. We walked up to a desk that looked like the front desk at a classy hotel, or maybe a fancy airport, Dagmar showed her ID, the lady handed her a packet and said, “Here’s your schedule of tests. You meet with the doctor at 8:30, then you’ll go to…”
The foyer of the Gonda Building
The whole time the lady was talking, I was gawking. I’ve never seen so much marble. We went down the steps to the subway and found ourselves in a three-story lobby complete with a grand piano… That’s the way the whole clinic was — at one time I found myself complaining about how the artwork hanging in the hallway looked like a cheap Warhol ripoff, only to peek at the sign and learn that it WAS a Warhol…
We made our way through the maze with a minimum of woes and found ourselves on the fifth floor of the Baldwin Building. We sat in the waiting room until the pager they gave us started buzzing, at which time we were ushered into an examination room.
You know how the little exam rooms are… One, maybe two chairs, a table for the patient to be undignified upon, a sink and a small desk with a box of Kleenex where the doctor writes his prescriptions… This room was not like that at all. There was a couch (or loveseat), a couple nice chairs, a computer…
The doctor came in, dressed in suit and tie, and shook our hands. He went through Dagmar’s history, bit by bit, gave her an examination, and after TWO HOURS started to methodically order tests and appointments. Two hours with a doctor! I’ve always considered myself lucky if I could get ten minutes’ time. It turns out that the standard is for doctors to get paid according to how many patients they see in a day, which means that they try to rush through as many people as possible. At the Mayo Clinic, however, they pay the doctors a salary — thus encouraging them to actually spend time with the patients.
Bible
A novel approach indeed!
The next days were a bit of a blur. Back and forth from hotel to Clinic, seeing various doctors, getting assorted tests… On Friday Dagmar had a series of biopsies. A gastrointernetologist had narrowed most of Dagmar’s symptoms down to problems in four categories. The biopsy would give us the final answer.
We were in the 9th floor of the Gonda Building, I think. Dagmar’s little pager buzzed, I gave her a quick kiss and watched her follow the nurse back into the “procedure rooms” for the biopsy, holding her belly where the cramps were. Three or four hours later, my Alpine Snowflake was back, getting out of a wheelchair, smiling at me. “Ve can go home now,” she said. “Back to the hotel, ve take a nap, und in the morning we go home. They’ll call us Monday with the results.”
The trip home went quickly. We’ve lived here for nearly ten years, and have never been gone for five days before, except for one vacation we were gone six days. It felt strange, coming home. We unpacked, Dagmar put on her comfy jammies and went to bed. “I hate to say it,” she said, “but it still really hurts where they took the biopsy.” They’d put her under, then went down her throat, snipping bits of her esophagus, stomach, and small intestine for testing. Those tests would tell us if it was Celiac’s Disease or some other problem.
Today the results came in.
Dagmar at the Mayo
Dagmar has had West Nile disease for the last few months, but that’s not the main issue. The muscle aches are caused by a Vitamin D deficiency, which can be remedied with a simple dietary supplement. But the BIG thing is the abdominal distress she’s been suffering for eight years… The biopsy showed that she has a bacterial infection with severe and prolonged bacterial overgrowth. There’s a fancy word for it that escapes me at the moment, but basically she’s had an infection in her small intestine for the last decade. It’s been getting progressively worse and worse, making her sicker and sicker until the past few months when she started having problems digesting food — thus leading to fatigue and various vitamin deficiencies. A month, maybe six weeks on a couple antibiotics and an illness that’s been plaguing her for a decade will be over, and I’ll have my happy wife back! (They say this is a very aggressive bacteria, but I’m optimistic that the antibiotics will work.)
I can’t imagine having an infection for more than a few months, but the doctor said that with the amount of infection she’s got, it’s been going on for years, possibly decades, wearing her out, making her sick, making her more prone to catch other illnesses (the pneumonia, for example).
But this is it. It’s over. I truly believe this is the end. The illness is done. My wife is back!
Edit, 8 May 2016 – Nearly eight years later I’m re-reading this post. It’s hard to believe how optimistic we were back then… Since this post was written so much more has happened; Dagmar is now disabled, needs oxygen, can only walk a few yards even with her walker, has seizures, and is still very ill nearly one-hundred percent of the time. It’s hard to imagine now that there was a time she was healthy enough to travel so far as the Mayo, then be able to actually walk through the halls. The bacterial overgrowth has been taken care of, but the disease that caused it remains – Common Variable ImmunoDeficiency – and is causing so many more problems…
Why they want you there so early is beyond me. If you’re gonna have an operation, wouldn’t it be better for you to have a full night’s sleep the night before? I guess not… Dagmar had to be there at 5:30 a.m. (For you military types, that’s 0530 oo-RAH, prime @ss-kickin’ time. For Republicans it’s time to get to work repressing the working class. For Democrats its, like, man, that’s like really early and stuff. For Libertarians, that’s when Mickey’s big hand is on the five and his little hand is on the six… In any case, it’s like, man, really early and stuff…)
“Vhat time is it?” she asked me blearily, one eye open. “Vhat are you doing up?” (Her Austrian accent is always stronger when she’s sleepy. Sometimes she mixes German and English together, which is always kinda funny sounding. Germish.)
“It’s four in the morning,” I answered, rubbing my eyes. “If we’re gonna get you to the hospital in time I’d better get in the shower and start packing.”
“You shower. I schlaf.” With that she rolled over and started snoring.
By quarter after five everything was packed and in the car, and off we went to the St. Luke’s, the smaller of the two hospitals in Sioux City. “Why did you pick St. Luke’s, anyway?” I asked Dagmar. “I thought after that time you sat in the emergency room for eight hours before anyone saw you that we decided we were going to go to the other hospital.” Dagmar had a kidney stone a few years ago. I ran her to the emergency room, where she sat curled up on the floor for over eight hours before she passed the stone on her own without any medication. Yes, they sent us a bill, even though she didn’t get so much as an aspirin.
“Yeah,” she said. “I know. But my mama used to work at St. Luke’s, und I know people there. Dey have nicer rooms.”
We pulled into the parking lot. I dropped her off at the door, parked the car, and met her at the front desk. The lady at the front desk was really nice and ushered us into a “prep room” or some such thing where Dagmar had to put on the little half robe. A nurse came in and very nicely explained what was going to happen. Another came in a few minutes later and poked Dagmar’s arm with an IV. Shortly after that yet another nurse came in and asked a bunch of questions.
“Boy, it’s sure going quick,” Dagmar said to me after the third nurse left. “I can’t believe they got the IV in so easy — usually dey have to poke around for a long time.” Dagmar has notoriously small veins in her arms. Last time they had to give her an IV they were eying her ankles… “Everyting’s going so vell!”
About that time the anesthesi… anisthes… drug doctor came in. “Hello, how are we doing today?”
Dagmar has adverse reactions to almost every painkiller known to science, so she learned long ago it’s best to simply hand the anesthesiologist the form the LAST anesthesiologist used. That way she knows it’s gonna work. “Here,” Dagmar said. “This is vhat verks for me. Und can I maybe have an epidural?” The doctor was agreeable to that. “Sure,” he said. “We’ll give you an epidural, then we’ll give you a real light dose of the general anesthetic. You won’t feel a thing.” He patted Dagmar paternally on the head and left.
“Gosh, I hope I don’t feel anyting,” Dagmar said, laying in the little bed. “I don’t vant to remember the pain.” Dagmar’s mother, Kriemhild (or Mama K), came in. “Hello, Mama! The nurses and doctors here sure are nice!”
They chatted a few minutes, Dagmar and Mama K. Then a nurse came in. “It’s time to go,” she said, grabbing Dagmar’s little trolley-bed and dragging it out the door. “Everything will be okay.” Mama K and I followed into the hall and watched our beloved get wheeled towards the operating room. I could hear Dagmar’s voice as she rode her little bed-trolley through the doors at the end of the hall, “You’re a nice nurse. I’ve never had an epidural. Vill I remember de operation? I don’t vant to remember… What pretty blue outfits you all have! Vhat’s dat machine for?”
Mama K and I stood there for a moment, then went back to the waiting room to start The Wait.
“So far so good,” I said to Mama K as we sat down. “The nurses were nice, the doctor was nice, they got her IV in on the first try – this is going really well.”
“Ya, I haf a good feelink about dis,” answered my mother-in-law. “She’s in good hands. Did dey say how long this vill take?”
“Forty minutes is the guesstimate,” I said. Mama K pulled out her Bible, opened it to the bookmark and proceeded to stare at it. I could tell she wasn’t reading the passage, but it gave her something to look at. I sat with her for a few minutes, then said, “I have to go home to give our diabetic cat his shot. I’ll be back in fifteen minutes.” Mama K nodded and smiled.
I zipped home, shot the cat, and was indeed back in my Waiting Chair within fifteen minutes. I sat and stared at a magazine while Mama K sat and stared at her Bible. A few minutes later my mother arrived to help us wait. We talked.
The forty minute mark went by. We started to look at the door more and more often, hoping to see a nurse or doctor with news. We chatted.
After fifty minutes I was pacing back and forth between my chair and the door. We chatted.
After an hour we quit chatting and spent our time staring at the door, willing a nurse to come and tell us what’s going on.
I think it was around the eighty minute mark that the nurse finally came through the door. “Dagmar’s in recovery,” she said. “She’s doing fine. The doctor will meet with you in this tiny little room over here.” She led us to the tiny little room, where the three of us sat for another five minutes waiting for the doctor.
The funny things about small rooms is that they hold the tension in very well. There’s nowhere for it to go.
The doctor finally came in, a tall confident lady with black hair. “Hi, I’m the doctor,” she said. “Everything went well.” We all relaxed a bit. The doctor continued, “I made the incision here,” she traced an invisible line on her abdomen from hipbone to hipbone, “but as soon as I opened her up I could see things were out of place — nothing was where it was supposed to be. We were prepared for that.” (Dagmar’s last surgeon found her left ovary behind her right one.) “I had another surgeon in the room to handle that, and we did end up calling in a third surgeon as well to handle the bowel. He had to cut through a lot of scar tissue and adhesions from her other operations. We found Dagmar’s uterus tangled up in her intestines and removed that, and she had a cyst the size of an orange or small grapefruit on her ovary. We got that out. Dagmar also had endometriosis, an ovarian infection that causes a lot of, well, sticky stuff. We cleaned that up best we could, put her bowel back in, and stapled her all together.”
The doctor looked at us as we sat in the tiny room. “She must have been in a LOT of pain for a long time. She’ll feel a lot better now. Her ovary and uterus had to come out. It was time.” We asked a few questions, mostly out of nervous energy, then the doctor left.
“Vell, dat’s good news!” Mama K said, standing up.
“Yes, it sounds like everything’s going to be okay,” said my mother as we made our way into the hall.
“She’s getting such good care,” said Mama K, holding her Bible. “Everyone’s been so good here.”
“Where do we go now?” I asked, eager to see my little Austrian Snickerdoodle. No one knew. I went to the front desk. “Excuse me,” I said. “My wife just got out of surgery. Do you know what room she’s going to be in?”
The lady glanced up at me, seemingly annoyed. “Fourth floor.”
“Where on fourth floor?” I asked. “How do I get there?”
“Just go up to the fourth floor.” she said, eyes glued on her computer monitor. I had the feeling she was playing solitaire.
I shrugged, went back to my mother and mother-in-law, and we just sort of wandered through the hospital looking for an elevator. We eventually found one and got to the fourth floor. “Oncology,” read the sign on the wall on the fourth floor. The cancer ward. We three looked at the sign. “No one said anything about cancer,” I said. “Why is she in the cancer ward?” We stood there for a moment, looking down both halls for a nurse’s station, or even someone who looked like they knew where they were going. “Let’s go this way,” I said, wishing I had brought some bread crumbs along with which to leave a trail through the maze. “No one said anything about cancer…”
We found a nurse’s station about six miles down the hall. There was a big marker board on the wall with a lot of names on it and scary symbols. “Hi,” I said to the lady at the desk, leaving my mother and Mama K to chat. “My wife just had a hysterectomy. They told us she’d be up here…?”
“If she had a hysterectomy, why would she be up here?” the nurse asked. “This is oncology.”
“I know, I saw the sign. But the lady in the waiting room told us to come here.”
“This is oncology,” the nurse repeated. “Hysterectomies are on the second floor.” A movement over her shoulder caught my attention. It was another nurse writing something on the marker board — “Dagmar, rm 421, gyno rcvry.” I looked at the first nurse. “That’s my wife there on the board,” I said.
“Oh, yeah, sometimes they bring people up here to oncology from gynecology if we have extra room. They’ll bring her after she’s done in recovery.”
“If you knew that, why didn’t you believe me when I said my wife was here?”
“This is oncology,” she repeated. I started to get the impression that the lady just learned that word and was trying to show off. “We’re oncology.”
I went back to Ma and Mama K. “This is oncology,” I said. “She’ll be in room 421. Don’t talk to that nurse.”
Room 421 ended up being another three miles down the hall on the left. But geeze, what a room! I’ve seen hotel rooms worse than this. A private bathroom with a shower, a place for Dagmar’s little trolley-bed to go when they brought her up, a desk, a couch with a hide-a-bed, a rocking chair, an easy-boy, and a TV with static. The view was great, too, overlooking a scenic park.
Classy Digs!
“Vow!” said Mama K.
“This is nice!” said my mother.
We all kinda stood there for a few seconds, wondering how long it would take Dagmar to get out of recovery. I mean, she had an epidural with just a light anesthetic, so it shouldn’t take too… “Here she is!” I said as the nurse wheeled the little bed-trolley into place. We all gathered around to peek at Dagmar. “Hi everbuddy,” she said, looking up at us. “Is it done?”
“It’s done!” I said. Mama K chimed in, “You’re avake! You look fantastic!”
You know, it always breaks your heart to see someone you love come out of surgery — no matter how good they look. Dagmar was a very small lump under the blanket. She was pale and shaky. She had an oxygen tube stuck in her nose. There were all sorts of tubes coming out from under the blankets. An IV stand with three bags. But she was smiling! She was smiling. Everything’s good when Dagmar smiles.
“It doesn’t hurt,” she said. “I’m awfully tired… Ich glaube I sleep. Schlaf.” Her voice trailed off as she fell asleep.
The doctor came in. Dagmar said she was feeling pretty weak. The doctor lady looked at Dagmar’s belly. “It all looks good,” she said, “but we did have to play with your intestines quite a bit. I want you to take it slow. Don’t move too much, just concentrate on healing. Take things slow. You’ll probably be here until Monday or Tuesday, and that’s fine. We don’t want to push things too quickly.” She smiled reassuringly and left.
Dagmar napped on and off throughout the morning. My mother went back home. Mama K and I would read quietly when Dagmar slept, and we’d chat with her when she was awake. Most of the time when you’re in the hospital there are always people coming and going, taking blood, checking things… But we were pretty much left alone until after lunch.
“Okay, I need you to sit up,” the nurse told Dagmar. “You need to start moving. The more you move, the quicker you heal.” The nurse started fumbling around with Dagmar’s bed.
“Are you sure about this?” I asked. “She just got out of surgery six hours ago.” Mama K looked on in concern.
“Yes, she needs to get up,” the nurse said without looking up.
“I get up,” said Dagmar. I held the IV cords out of the way as Mama K helped Dagmar struggled to sit up. The nurse watched. “Hoo boy,” said Dagmar, sitting on the edge of the bed, “I think I might need a bucket. The vorld is spinning.”
“Here’s a bag if you get sick,” the nurse said, handing Dagmar a baggie. “Now get up.”
“No, I need to sit here a minute. Dis is too fast.”
“We need to get you moving. Get up.”
“No. I’ll pass out. No.”
“Get up.”
“No.”
Mama K and I both took a step closer to the nurse. We want to follow authority. The nurse represents the medical community, after all. What she ways must be true. But there’s Dagmar in pain and misery. Do we defend our loved one? Do we defy authority? Or do we assume the nurse knows what she’s talking about? But the doctor said to take things slowly. In other words, do I punch the nurse or not?
Dagmar solved the dilemma for us by simply laying back down. “I’m not getting up yet. Give me a minute. I’ll try in a few minutes.” The nurse, sensing defeat, left without a word, her mouth set so tight I could swear her lips disappeared.
Dagmar and Mama K Walking the Halls
True to her word, Dagmar tried to sit up again just a few minutes later. After sitting for a bit, we untangled her IV and various other tubes and helped her stand up and walk around. Out the door and up the hall twenty feet, then back to the little trolley-bed. Dagmar was asleep again as soon as she was in bed.
The afternoon continued and drifted into evening. Dagmar snoozed and woke and snoozed again. I went home and gave the cat his evening shot and grabbed my iMac and went back to the hospital. Mama K went home to take a nap. I set my computer up on the desk and logged into the hospital’s complimentary wireless network and got caught up on some work in the minutes Dagmar snoozed. She was spending much more time awake than asleep now.
I learned that you can’t really sleep on a hide-a-bed.
“It hurts more today,” Dagmar said. She still had the needle in her back for the epidural, so the medication she was getting there was helping the pain in her abdomen, but you could tell she was hurting.
“Is it your incision that hurts?” I asked her.
“No, it’s my IV und my catheter. I vish I didn’t need them.” Unfortunately, though, if you have an epidural you need a catheter.
The morning and afternoon were spent with Dagmar taking small walks up and down the hallway and chatting with her mama. When she would nap I would get a few minutes work done on my computer — I had two newsletters from work to typeset and design somehow. Every time a nurse came in Dagmar would mention her IV and catheter, but all they said was, “you just keep walking as much as you can.” Once a specialist came in to look at the IV. She moved it to the other arm.
I went home to give the cat his shot that evening and lay down on the couch to get a nap. Dagmar and her mother both encouraged me to get some sleep, so I did. Much to my horrification I slept until five the next morning! I got up, sprinted through the shower, shot the cat again and ran to the hospital.
Miserably guilty that I’d fallen asleep at home whilst Mama K was watching Dagmar in the hospital, I ran down the fourth floor hall to get to her room as soon as I could. I knew I shouldn’t have tried to take a “two hour” nap! Dammit dammit dammit. I swooshed past the nurse’s station, thinking I was a failure for abandoning my wife for the night. I skidded to a stop in front of her hospital room door and peeked in. I could tell immediately that something was wrong . Dagmar’s face was pale. She had a self-absorbed, inward look, as if she was battling something inside. The IV was gone. Mama K was sitting on the edge of the chair by Dagmar’s bed. I could see she was on the verge of exhaustion; worry written on her face. It was five in the morning.
“What happened?” I asked. “What’s wrong?”
“It vas a rough night,” Mama K answered. “Dey took her IV und catheter out.”
“Why?” I asked, gazing at Dagmar, tugging a little on her toe. “They said they were going to leave that in until Monday. This is only Saturday morning!”
“It vas time,” Mama K said. “Daggie’s vein in her arm perforated. Dey never flushed the IV like they vere supposed to. So they had to take the IV out early.”
“What about the catheter?” I asked. “I know Dagmar was complaining about it hurting yesterday.”
Mama K looked at me. “Those nurses, they vere supposed to clean it every few hours, und they never vunce did. They never cleaned it! Now it has to come out, even though Dagmar’s not ready for that yet.”
“You’re kidding me!” I said.
“De grumpy night nurse said it vasn’t her job,” Mama K continued. “I asked her whose job it is, but she just left und said it vasn’t her fault.”
Just then Dagmar stirred, reaching over to hit the “call” button on her bed, sweat beaded on her forehead. “Yes?” came a voice from the speaker.
“I’m really in a lot of pain,” Dagmar said. “Can I have my ibuprofen, please?” The nurse on the other end never answered but rather just hung up. Click. That’s standard operating procedure at St. Luke’s, I guess — I never once heard them do anything but hang up on Dagmar when she hit the call button. Dagmar closed her eyes again.
“They took her epidural out vhen they took her IV,” said Mama K. “She hasn’t had any pain medication since before midnight. It’s been six hours. She’s been asking for ibuprofen or aspirin ever since und dey just ignore her.”
“You’re kidding me!” I said, sitting down. I started mulling through my options. My first instinct was to go to the nurse’s station and start choking people until someone got the hint and helped my wife. My second thought was to get her the hell out of this hospital and go to Mercy Medical across town. My third thought was that choking someone really sounded pretty good.
My ruminations were interrupted by the door opening. An elderly nurse walked in. No knock or anything… I say “elderly,” but she was probably only in her fifties — but she wore old-school hair, old-school clothes, and an old-school attitude. She looked like an unhappy prune. “What do you want now?” she asked Dagmar in a snitty tone.
“I vant some ibuprofen, please,” Dagmar said. “It’s been over six hours and I haven’t had any painkillers und it hurts.”
“I told you when I took the IV out that this would happen. You should have left the epidural in.”
“If you vood have taken care of her IV and catheter like you were supposed to, she’d still have the epidural,” said Mama K.
“I’ll go see if you’re allowed medication,” Nurse Prune said as she left. “Allowed medication?” I thought to myself. “It’s over-the-counter ibuprofen. Allowed?”
Dagmar sunk back into herself. I could see her utilizing her pain management techniques. At this point I should probably mention that Dagmar is NOT a wimp. A few years ago she had to have her head scanned for a different ailment. “How long have you had these migraines?” the doctor asked at that time. “Oh, I don’t have migraines. Vunce in a vhile I get a liddle headache, but nothing bad,” Dagmar told him. The doctor gaped at her. “No, you don’t understand. You have migraines so bad they’ve left scar tissue in your brain.” So when Dagmar says something hurts, most likely it really hurts…
Time passed. Dagmar covered in sweat, eyes clenched shut. Mama K reading, and me brooding. After a while Mama K said she had to go home to nap. Dagmar looked up long enough to say that was a good idea, so then it was just Dagmar and myself. Dagmar pushed the button again. “Yes,” said the voice from the speaker.
“I’d really like some ibuprofen, please,” Dagmar said. “It’s been seven hours now. Please. It really hurts.” The only response was “click.”
An hour later there was a tap at the door. I looked up and saw a head poke in the room. A male nurse. He looked at me. “Radloff?”
“Schroeder?” I asked.
Both of us at the same time: “Dude! How ya been?”
“Honey, this is Schroeder. I was in the Guard with him in the 80s.” Turns out my buddy Schroeder had moved to Houston and had lived there for the last 15 years or so, and had just moved back to Sioux City a few months ago. “Can my wife maybe have an Ibuprofen?”
Schroeder glanced at the passel of paperwork in his paw. “Oh, certainly,” he said. “She was due for some painkillers four hours ago.”
“She hasn’t had anything since before midnight,” I said.
“You’re kidding me! I’ll be right back.” He scampered out the door.
“Your friend seems nice,” Dagmar said. “I can’t believe I have to stay here for three more days.”
“I feel so bad for you,” I said. “All they can do is give you ibuprofen and they’re not even doing that.”
The door opened. It was Schroeder with a little sippy-cup with a couple pills in it. “Here’s your ibuprofen,” he said. Dagmar wasted no time getting the pills down her gullet. Schroeder started checking Dagmar’s blood pressure and stuff, chatting lightly with us.
When he was about halfway through, the door swung open and a tall man walked in, with Nurse Prune close behind. “Hello, your doctor is gone for the weekend. I’m the doctor on call. How are you?”
“I’m in a lot of pain,” Dagmar said. “But Mister Schroeder just brought me some ibuprofen.”
“He shouldn’t have done that,” hissed Nurse Prune quietly, seemingly doing a Gollum impersonation. “thiss is MY patient, my precioussss.”
The doctor grabbed Dagmar’s toe and wiggled it. “Well, you look okay to me. Pack up and go home if you want.” He whirled and was gone, taking Nurse Prune with him.
Schroeder, Dagmar and I all looked at each other, competing to see who could look more surprised. “Well, I’ll go get your discharge papers,” Schroeder said, breaking the stunned silence. “You still look a little shaky though,” he said, looking at Dagmar. “You can stay another couple days if you want. And you’ve paid for this room through midnight if you want to stay today.”
“Who’s going to be my nurse tonight?” Dagmar asked.
“You’ll have the same nurse as you had last night.”
“I’m going home. I’m not going to put up with that voman again.”
“I’ll finalize your paperwork for you,” Schroeder said, heading for the door. “You can go whenever you want.”
I helped Dagmar get on her feet and started packing. Within five minutes we were ready to go. A nice lady named Donna (she had been the consistent bright spot in our stay — a cheerful woman who popped her head in every couple hours to see if we needed food, blankets, water — she was a Godsend) helped me find a cart for all our luggage, flowers and assorted crud. “Vhat do we do now?” Dagmar asked Donna. “Do we just leave?”
“I guess so,” said the nice lady. Dagmar and I slowly made our way up the hall, Dagmar keeping one hand on the cart I was pushing. “I don’t know if I can valk all the way to the car,” she said to me. “Don’t they give you a vheelchair ride to the front door?” I shrugged. We walked past the nurse’s station. Schroeder glanced up as we walked past. “Oh, hey,” he said. “Leaving already?”
“Yeah,” I said. “She’ll be more comforable at home.”
“Yep. Well, have a good day. If you need anything, just call!”
“Can I have a vheelchair, maybe?” Dagmar said.
“Oh! Of course!” Thirty seconds later another nurse-type lady was pushing Dagmar up the hall whilst I followed pushing our cart ‘o crap.
“I can’t believe they’re letting you go home,” I said to Dagmar as we pulled into our driveway. “Didn’t your surgeon explicitly say you’d be there until Monday or Tuesday?”
“Yeah, dat’s vhat she said, but I’m NOT going to stay with dat nurse again. If the doctor on call said I go home, I go home.”
That was all a little more than a week ago now. Since Dagmar’s been home I haven’t seen that look of pain on her face, not even once. By the next afternoon she was up and valking half a block up the street and back. We’ve had lots of visitors and flowers — including a bunch of flowers from St. Luke’s with a note, “Sorry your visit wasn’t what you expected.” To me that translates into “Please don’t sue us.”
We’re sorely disappointed with St. Luke’s. The prep nurses and surgical team were fantastic, and the lady that took care of our room, Donna, was fantastic. But the nursing staff on that floor seemed, by and large, rude. Nurse Prune in particular seemed happy to let a patient suffer because it “wasn’t her job” to do anything but take notes and sniff unhappily. My buddy Schroeder was good, but we only saw him for ten minutes. We’re not going to go to St. Luke’s again if we have a choice in the matter.
Dagmar’s perforated vein (from the IV they failed to maintain) has healed, thankfully. She does have a bladder infection (caused, maybe, by a catheter left in for three days without any cleaning?) to deal with, but that’ll pass. For someone who had three surgeons stretching her intestines halfway across the operating room, Dagmar’s doing VERY well! She’s so much happier now. She’s still weak and has pain now and then, but another month at home and she should be back at work.
And that’s that!