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Still Life With Claims

1 Jul



18 May

“You’ve got to work though, right? Or else the disease wins.”

I can’t find the words to express the rage, indignation, frustration, and helplessness I felt when my beloved doctor said those words to me about a year ago. I went into his office that day begging, pleading to write me off for disability. I was just sure I’d never feel well enough to work again. I was still working full-time, limping-along, really. As far as I was concerned, the disease had already won. I was so incredibly angry with him. I thought bitterly of the summer house I was sure he was paying for with my repeated visits and unrelenting suffering. Fuck him, I thought.

I found myself having to make the choices that are common for people with chronic disease. Do I make dinner or bathe the baby? Do I fold towels, or do I wash my hair? Do I play with the baby and hold off on taking the drugs that will alleviate the pain but leave me an unsafe solo caretaker, or do I get relief and hand her off to her dad for the night? My dressing is leaking, how do I take care of it at work? Where is that extra pair of pants I tote around?

Most of last year seems locked away in a very fuzzy place. Most of the time I’m still surprised it’s 2011.

You know what, though? He was right. He’s always been right.

Soon after that desperate visit, one of many I had between October and July, my second surgery was scheduled to close the fistula that had formed at the incision site. They would also go in and remove the ovary that had gone AWOL and “clean up.” At the time, it was an incredible relief, and I didn’t really appreciate the gravity of what exactly would be going on. Having to coordinate between several doctors, I should have. That was not a routine operation.

I was in so much pain by surgery day that I was taking the maximum possible doses of prescription painkillers, and they still barely touched it. I was seeing ostomy nurses at the hospital a few times a week to get the skin breakdown under control so that the surgeon could get a good closure. I think that was a low point, I would cry at the pain and the humiliation of having to drop trou in front of them without even the benefit of a gown and the pain of dressing and washing, because everyone has a breaking point. They chided me, telling me that people lived with ostomies their entire lives. I didn’t have an ostomy, I reminded them. It’s different when the body creates one on it’s own. In an incision. That sort of folded in on itself. In an awkward place to dress.

I was happy when surgery day came, and didn’t have the sense to be too scared. It took them around six hours to fix me. The ovary, fistula tract mess, and sigmoid colon had all stuck to my duodenum. If my abdomen was a map of the United States, Florida Nebraska, and Arizona were stuck to Oregon. I lost the ovary, of course. I also lost another six inches of small bowel, along with my sigmoid colon (I was told I wouldn’t even miss it – LIES). I got lucky he was able to keep the duodenum intact. He stitched in the staples on my intestine. My skin was closed with countless internal stitches and fifty-four staples.

Another nine days in the hospital. Better pain management, and when I went home, I felt better in those nine days than I had felt in the nine previous months. Not to say the road wasn’t hard, it was. Not to say I don’t have lasting daily inconveniences, I do. Not to say I don’t have periods where it becomes REALLY inconvenient and hopeless, I do. Not to say I’m not in remission in spite of all of that, I am.

After nine months at home with the baby, recovering fully, I went back to work. Petit Four and I were both pretty ready. It was to a point where I was no longer enough stimulation or entertainment enough for her during the day. I was starting to go nuts.

So with fresh terror and enthusiasm, I’m back in the work force. I do what I did before, for another great organization exactly aligned with my beliefs and interests, only on a larger scale. The adjustment has been rough, but I once again feel human and whole. The disease part is what it is.

I can’t wait to go back to my doctor that wouldn’t let me quit and tell him he was absolutely right. As long as I’m working, there is no way for the disease to win.

And to tell him to enjoy that summer house, because he’s earned it.

The aftermath of that whole mess (part one)

8 Nov

Grizzly medical detail ahead, guys. We’re dealing with intestines and infected tissues, it’ll get gross. You’ve been warned.

We left off with me at home with the baby and being a happy family after we left the hospital, after nine days of being there.

My memories are fuzzy. We came home and ordered a pizza, which was way better than the hospital food. I tried to keep up with the triple feeds to keep Petit Four nursing and to bump up my milk supply. This involved having the baby on the boob with a tube taped to it that fed in formula at the same time, and then after that I would pump. It was exhausting.

We knew before I left the hospital that my incision had started to go sideways. I was sent home with oral antibiotics and pain meds since they cultured it and knew what the infection was (e coli). There was a problem with this, because almost nothing stayed in my system long enough to be absorbed. I would go to the bathroom and see whole pills. Over the course of the next three months I lost sixty pounds, if that tells you anything.  

Fortunately, my mom was well equipped to do wound care and would pack and unpack the dressing as it drained while we were home. I then went to the surgeon for a follow up. I had a fever and my abdomen was tender and he could feel abcesses so I went to get a CT scan. Abcesses were found and I went marching back to the hospital.

They drained the three largest abcesses with a CT guided drain, where they put you in the CT and then use a needle to drain the abcess, and they also left a couple of JP Drains and I spent the rest of my five day visit draining and with IV antibiotics. Fever went away, I got better, and back home I went.

It was clear the wound wasn’t going to heal up on its own, so I was set up with a home health nurse and a wound vac. A wound vac is pretty much what it sounds like, a hoover attached to your wound to pull tissue together and wick away drainage, so I had a not-optional shoulder bag and a tether of about 8′. Just enough to give you the illusion that maybe you can make it across the room without carrying the bag (spoiler alert: you can’t). I had that gottdamn thing for three months.

I was sick sick sick, but I went back to work anyway, vac and all. I walked around like a high-tech zombie and did as best I could. One day, I had a constant fever, was weak and in more pain than I should have been, so my surgeon sent me for another CT. MORE abcesses. Awesome. I went pretty much straight from work to the hospital, where I walked in and asked for a wheelchair in the ER to get up to the surgical floor. Once they did my bloodwork, they were shocked I walked anywhere, that I was even conscious. My potassium had bottomed out and my red blood cell count was scary low. 12 is normal, I was at about a 6. I won’t even give my WBC count. I was given three more units of blood and some plasma.

During this trip, I started getting strange looking drainage through the VAC, not the blood-tinged fluid but more tan. I started having the same drainage flowing heavily vaginally, as well. They tried the CT guided drain again to no avail, I had formed a phlegmon, which is like a giant ball of silly putty, and can only be removed through surgery or antibiotics. This was the darkest hospital visit. The surgeon was worried, and when I asked him what the worst case scenario was, he lied and said a small bowel transplant, because if he went in surgically now, he wasn’t sure he could save much. He told my mom what the real worst case was. I typically don’t ask a question without an idea of the answer. I knew that death was a real option.  

If you’re wondering where the baby was, she was at home with whoever came to help from far away. We were fortunate to have near-constant coverage of my mom and in-laws so that Horrible didn’t have to go it alone. She would come visit me in the hospital and we would half-ass breastfeeding. My mother-in-law joked about Petit Four having conversations with “Aunt Eyevee”, because honest to god she would stare at the IV stand and coo at it.

At this point, we knew that the connection of the pieces of bowel had failed somewhat. The drainage was either intestinal contents from a fistula or fluid from the infection from the phlegmon finding escape routes through surgical sites (the incision in my belly and the incision in my uterus). Fortunately, after another week on IV antibiotics through a PICC line (a central line that is inserted in your arm instead of your chest), everything seemed to clear up enough for me to go home, but this time I was sent home with antibiotics through the IV four times a day, spaced EXACTLY six hours apart. This was about as fun as it sounds, particularly with the VAC to contend with, too.

I went back to work again. I looked RIDICULOUS. It seems absurd to me now that I went back to work, but really, I didn’t have a choice.

I can’t accurately describe the irony of what I was feeling. I spent three months, essentially, with a constant high fever, well over 101. The peritonitis hadn’t gone away. The irony comes into play that I was super pregnant during the hottest summer on record in Austin where my office A/C didn’t quite work (daily highs of 105, people), and it just started to cool off when I had Petit Four. Then I come home and have a constant fever and radical weight loss and I’m freezing to death all the time. It was an awful and unfunny cosmic joke.

We had planned on travelling the 9 hours home for Petit Four’s first Christmas. This, it goes without saying, was inadvisable. We stayed home and had our first Christmas as a family with just the three of us. It was bittersweet.

I had another fever and went straight back to the hospital for another week. The wound was making progress. I could stand to look at the naked wound without the fear of seeing my abdominal wall. It turned out to be a PICC line infection so they switched sides and I went home for several more weeks of IV antibiotics at home. Finally, FINALLY, just before New Year’s, my blood was clean. The infection was GONE. The PICC line came out and stayed out.

I was still my wound’s little bitch, however.

How giving birth was secondary to the real issue. (part two)

19 Oct

(fair warning, there is gross medical detail ahead)

I remember waking up. Sort of. I remember waking up to someone trying to put an IV into my foot. I tried to see what time it was, it was either 8 or 10. I passed out again.

The next time I woke up, I was told I was being wheeled to the ICU, shocked, I asked why. “For observation” I was angry, I thought they were overreacting.

A nurse said, “You’re never wearing a bikini again!” The incision was from pubic bone to belly button. I asked if the baby was ok. “Oh, yeah, baby’s fine!” Good. At some point Horrible came along and said, “she’s got your hands and feet!” DAMNIT IS SHE OKAY?! WHAT THE HELL HAPPENED?!

Princess Petit Four. Born 10/19/09, 5:34pm. 6lbs, 2oz. She was sent up to the NICU and was put on precautionary antibiotics. She caught none of my sepsis, thank God.

As for what happened, I only know what I was told. My surgeon hung out for the c-section part, though he didn’t need to be there, yet. He doesn’t get to see babies born that often. He told me later that when they cut into me, my uterus was basically floating in a sea of puss. My bowel had ruptured in a bad, bad way. He said once you got the uterus out of the way, it looked like a grenade had gone off. Petit Four was born with an APGAR of 2, and then 8. When she came out, she was knocked out by the anesthesia as well, she didn’t breathe on her own for 4 minutes. They got her to the isolette, gave her oxygen, reversed the effects of the narcotics, and wheeled her up for the NICU to take care of and Horrible got to see her fairly soon after.  Thank God, she was ok.

As for me, I had severe peritonitis (a very dangerous infection of the abdominal wall) and had around three-and-a-half feet of small bowel removed, the ileocecal valve that connects the small and large intestine, and a few inches of large intestine.

Back in the ICU, Horrible brought down some pictures of Petit Four that a helpful nurse had taken and printed out, with “Get well soon, Mommy!” across the bottom. They put her stats on the white board in my room so I’d see them, along with the pictures. I noted my much-deflated belly, and the wrongness of not having the baby with me. At some point my in-laws got there, and my mom. I didn’t realize, at the time, what bad shape I was in. My kidney function sucked, I had a constant fever, an NG tube, several IVs, my heart was racing out of control. It went on like that for four days.

And the pain. My god. I had a morphine pump and it still barely dulled the pain.

I didn’t meet Petit Four until Wednesday. They wheeled me up to the NICU, into a vacant room, bed and all, two nurses with me, and handed her to me. I wish someone would have gotten a picture of the audience I had for this intimate moment. Looking at the video, I’m almost angry. Aside from my husband, there was my mom, his parents, two ICU nurses, two NICU nurses, a couple of curious wandering medical personel, and I don’t know who else. I didn’t cry. I took the binky from her mouth so I could hear her cry, and know that she was real. The nurses, bless them, had put her into a little dress with cartoon snails on it. She was so small, and they policed my efforts while I gave her a tiny bottle, I think it was only her second or third feeding, she wasn’t very good at it. That’s what eventually bought her a feeding tube and kept her in the NICU nine days. I couldn’t bend enough or lift her up or move my NG tube out of the way to be able to kiss her.

All my vital alarms were going off. I was given maybe 45 minutes with my daughter, and then they wheeled me back down where I could be stabilized again. I clutched the blanket they swaddled her in so that I could smell her. At this point they gave me a breast pump, too. They told me not to be a hero. Breastfeeding was a totally shit idea, by the way, in this case.

The next day or two in ICU is fuzzy. Horrible and my mom have both reported to me in that time that the fight went out of me. I had given up, and I have a vague recollection of that. I didn’t really want to go on. My mom forced me to move, to turn over, to look at pictures of Petit Four even when I refused. I asked the anesthesiologist how much time he thought I had when they went in and saw what they saw, before the sepsis would have been too bad to beat. He said probably a few hours. I asked the surgeon the same question and he simply said, “God is good”.

My OB saw my decline and promptly got my baby down to me. This time, she was brought down to the ICU in a covered isolette, and I only got to hold her for 15 or so minutes before she was gone again. I guess that would have been Thursday.

It should go without saying that my husband was incredible during this time and somehow managed to parent the hell out of that little baby and be with me a reasonable amount of time as well.

Later on Thursday, I was well enough to go to a step-down unit. By well enough, I mean they could almost bring the fever back to normal and I wasn’t quite so tachycardic. I didn’t need constant oxygen. I was standing here and there. By Friday I was in a regular room, and by Saturday I fully had my fight back and pointed out gently to the OB on call that I hadn’t seen my baby since, um, Thursday? And I was losing my mind? Within half an hour, she had me up in the NICU, though I could never stay long because of a strict regimen of IV antibiotics every couple of hours.

I breastfed. I held her, rocked her, changed a diaper or two in the next several days. We discussed rooming-in if she ended up having to stay longer than I did. See, letting me go home with her was a complicated request. I was on a surgical floor, needing the constant supervision, instead of on the mother-and-baby floor. The NICU and surgical staff nurses snuck Petit Four into my room so that Horrible and I could have a “trial run” at parenting her on our own. I got to eat that day for the first time in over a week AND have the baby with us. It was great, and we passed the test. Finally, we were ready to go home.

We had a lot of help. And it was a good thing, because the story doesn’t end there.

I actually don’t remember much of coming home, probably because of the raging infection I still had and all of the painkillers.

It was really only the beginning of the fight.

How giving birth was secondary to the real issue. (part one)

19 Oct

I feel like I can finally write out the story of my daughter’s birth.

I did everything right before deciding to get pregnant, I saw everyone and got them to all agree that it was a good time to get pregnant because my Crohn’s was in remission and the timing was right. Got pregnant right away.

It wasn’t what I would call an easy pregnancy, but it wasn’t awful, either. Between my OB/GYN, perinatologist and gastroenterologist, there were a lot of appointments to keep. I wasn’t even high-risk because of Crohn’s, but for a blood-clotting disorder (then diagnosed as APLS, but is really Lupus Anticoagulant). Crohn’s was the least of my concerns, the clotting thing being the Much Bigger Deal.

I was told to be prepared to go any time after 32 weeks, if the bio-physical profiles showed any distress. I scheduled my induction for 38 weeks and some change, so that I would be off the blood-thinners long enough to get an epidural. Toward the end, I complained that her kicking me really hurt. In retrospect, I should have recognized it as punches of flare pain, but I was otherwise symptom-free as far as Crohn’s was concerned, and the Humira appeared to be working. We all attributed it to the area being sensistive anyway from general inflammation and/or my pain tolerance was lower because of pregnancy.

At 32 weeks, I went to the hospital with a high, high fever at the height of the H1N1 epidemic. They found no cause for the fever and the baby wasn’t in distress so I was sent home, and it was attributed to a virus. I was told to take it easy for the duration and to stay out of crowds.

At 36 weeks, I was cocky. They had my shower at work on Friday and I assumed I would be there for the big annual gala the following Thursday, I was going to make it to my induction date! All of this panic and monitoring has been for naught! GOD WHY AM I SUCH A HYPOCHONDRIAC?!

Ha. Ha.

Sunday afternoon I was cleaning like a madwoman. The kicking that had stopped me in my tracks several times a day had subsided. We bought a new Dyson the day before and I was having the time of my life using it. I was making dinner, tortellini soup, and was buttering garlic bread when BAM! the mother of all kicks, and the pain wasn’t going away. I shouted, doubled over, and my husband (for blog purposes, let’s call him Dr. Horrible. He has a PhD in Horribleness) practically carried me to the couch. I couldn’t walk, couldn’t talk, couldn’t lay down, sit up, stand up, move, think. My husband called the nurse line, who told us the obvious: Get to the hospital pronto.

Knowing this was It, I had Horrible pack the rest of my bag, like my makeup and important things like that, and had him finish vacuuming the living room. Yes, really. I knew I wasn’t going to be the next one back here and BY GOD my house wasn’t going to look sloppy!

I hobbled out to the car while Horrible ran around me like Lassie with news of a barn fire. He deposited me in the car and I was in too much pain to even reach over to close the door, so he had to run back around and shut the door, spraining his ankle in the process. We’re a graceful lot.

The ride to the hospital hurt. A lot. Every bump and every turn sent a new stab of pain. I tried to keep my panic under contol because I couldn’t feel her moving through the pain and prayed to God and every saint I could think of that she would be ok.

We got to the hospital and waited no less than 15 minutes for a damned wheelchair, it took a few PA announcements to get some back down to the ER. Patients hoard wheelchairs since they’re so scarce. After that it gets fuzzy.

They started an IV, took blood work, checked me for labor (I wasn’t in labor, wasn’t even remotely dialated), and put a monitor on so that they could make sure the baby was ok. And she was. So was I, for that matter. Other than the excruciating pain that made me unable to move, my bloodwork was fine. I had no fever. I was urinating. I repeated a hundred times that the last thing I ate was teddy grahams and milk.  They gave me dilaudid and kept watch.

We didn’t really call anyone. At one point, Horrible called my mom and said I was in the hospital but we had no information. He ordered a pizza for himself and the nurse got him ice for his ankle. We both caught bits of sleep in the spacious labor and delivery room until the next morning. At that point, when it became clear that natural childbirth was likely not in the cards, I was moved to a different room so that someone having a normal pregnancy could use it. My belly started growing upwards, and I couldn’t be on one side at all. I was still in a lot of pain, even with the pain medication.

Around 5pm, a lot of things happened at once. The gastroenterologist came in to see me, someone I didn’t know but was in my doctor’s practice. My bloodwork started going weird, with my white blood cell count skyrocketing. My OB came in with a general surgeon and an anesthesiologist. They wanted to go in and take the baby out and do some exploratory surgery. They suspected my appendix, maybe a bowel perforation, though no one had ever seen that. They gave me the futile option of doing a CT scan or some other imaging before going in, but they warned they would probably not see anything and would need to go in anyway. It’s a good thing I agreed, there wasn’t time to waste.

My entire birth plan was exactly one request: That I was not put under general anesthesia when my baby was born.

Never make a birth plan of any kind.

We called everyone that would need to travel. My mom talked to the anesthesiologist on the phone. My OB stood at the back of the room, her face trying to conceal worry, as she apologized that she couldn’t be there. I understood, it was 5, she wasn’t on call, and she had kids at home. One of her partners breezed into this Situation Room and took my hands and shrieked “OK! Are we ready to have a BABY!” Her perkiness was comical, compared to the otherwise somber mood in the room.  It remains one of the most absurd moments of my life.

It didn’t occur to me until I was being wheeled out of the room and down to the OR that my life might be in danger. Suddenly the maternal mortality statistic popped into my head. It occured to me to pray, though it was hard through the fog and madness. I vaguely remember Dr. Horrible kissing me goodbye, looking more calm than necessary. I vaguely remember the elevator.

I remember being in too much pain to help with the transfer of my whale-like frame from the gurney to the operating table. I remember there being an isolette on the other end of the room, and men in brightly-colored scrub hats from the NICU introducing themselves. I remember making a Michael Jackson joke as the anesthesiologist announced that he was injecting the propofol.

I remember waking up.