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A Post-Op, a Follow-Up, an Infection–Isn’t Summer Fun?

Thursday June 15th: 2 Weeks Post-Op

Today I had my post-op appointment for my gallbladder surgery. Dr. Jones said I’m healing great. He took off the last of my steri-strips and checked to make sure the muscles underneath the incisions are coming together. I’m still not allowed to lift anything over 20 lbs or do strenuous exercise for another two weeks (which includes body weight stuff like yoga- I asked), but after that I’m clear to do as I please. I think that includes life in general–so if you see me robbing a chocolate store on TV or something, don’t worry–Dr. Jones said it’s ok.

I’m hardly in any pain any more unless I try to use or stretch my ab muscles too much. The most residual soreness is in the area where Mr. Gallbladder used to live–it feels like I’ve got a stitch/cramp there underneath my ribcage.

My digestion is also still adjusting to  the vacancy, but is doing quite well over all. After all the horror stories I read about crazy bad diarrhea post-gb removal, I had a very slight case of the runs for less than a week. I have been able to eat cheese, yogurt, lactose-free ice cream, burgers, potato chips, brownies, whip cream, avacado, and lots of other yummylicious foods that caused gb attacks before the op. I am SO happy I got the surgery. I don’t miss the little green fella one bit!

Monday June 19th:

I had a follow-up with my neurologist today. My migraines have improved from daily to 2-3 times per week–much better, but still pretty out of control. Doc L is an awesome neurologist; he listens, talks to me like an equal, and most importantly- hasn’t tried to hold my hand, not even once (my neurologist in HS always held my hand, no matter what diversionary tactics I employed to avoid it). But even he admits that total control–zero headaches for months–is likely out of reach in my case. So for now we are shooting for better control, and we’ll go from there.

Since my body seems to handle the Prozac well, we are doubling the dose (to a normal adult dose) and hoping it will get me down to 1 or so migraines a week. Unfortunately the jump in dose has brought back my favorite of Prozac’s side effects: I can’t sleep! Not a wink. Luckily it should pass in a couple weeks. It did the first time.

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Until then this is me

Thursday June 22nd: 

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I have finally accepted it. I have a sinus infection, for the second month in a row. I am frustrated because it’s been just over a year since I had sinus and turbinate surgery and I’m wondering if I’m going to need another soon. With my Ig infusions I shouldn’t be getting infections this much, but they just keep coming one after another.

My immunologist doesn’t have answers for me, but he is trying. When I get an infection I don’t even have to go in, I just message him and he sends the antibiotic script to my pharmacy. This time I’m on Amox-Clav for ten days,which is an optimistically short course, but hopefully it’ll do the trick.

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I know it’s silly but every time I have to go on antibioticsI feel like a bit of a failure. Every time I go over things in my head– maybe if I had done A, B, or C differently I wouldn’t have gotten an infection. Maybe if I ate better, slept more, got more or less exercise, didn’t do this and did do that…

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I’ll see Doc C for a follow-up in a couple weeks and we’ll talk it over, see what more can be done. It’s a constant climb and I’m always just hoping to find a good foot hold or a little ledge where I can catch my breath. But even though it’s hard–it’s so, so hard sometimes–when I stop to look around, man it’s still a beautiful view.

Go Straight to the ER, Don’t Stop for Cupcakes

Saturday was something else. On the one hand, I might have a life-threatening blood clot in my chest; on the other–which I thought far more likely–I might die of old age forgotten in a quiet corner of the ER… One day nurse Brittney would walk into the hospital with that nagging feeling in the back of her head that she had forgotten something and then it would hit her– she’d run to my room and find the bones of me and my mother still patiently waiting for a CT scan. Then she’d shrug and call the janitor, “we forgot a patient again…”

At least that’s the scenario my imagination concocted as I sat in ER purgatory–waiting three hours for a fifteen minute scan, and then two more for results and ultimate discharge. Add to that the fact that we had already started the day off with three hours at the minor emergency clinic and you might understand why I was, at one point, considering just taking my chances with the blood clot.

My fun Saturday started with waking up in the middle of the night to a collection of uncomfortable and confusing symptoms: sweats, chills, lightheadedness, nausea and chest pain. In my world the first four mean I have an infection of some sort. But the chest pain, in absence of a cough, was totally new. Plus it was only on the left side, which is also weird. I tried unsuccessfully to get back to sleep until about 8:30am, when I sighed, sat up and accepted that a trip to the doc’s was unavoidable. I talked to my mom, and she generously offered to accompany me. We decided to try the minor emergency place first, as we were not ready to resign ourselves to a day in the full-on ER just yet.

At 9:30 we walked into the Urgent Care, just as we had about a hundred times before–in high school, before I was diagnosed with PI, this place was my life–and were dismayed to find it unusually full for a Saturday morning in June. A sinking feeling settled in next to my throbbing chest, a grim foreshadowing of the day ahead.

It is certainly a rarity for me to go in to someplace like MD Express and not know already what is wrong with me, but Saturday was an unusual day all around. The PA I saw was very kind and tried to help me out, but he was also perplexed. They stole my blood and pee for science (Andy Dwyer quote people) and did a chest x-ray. Everything looked pretty good except one blood test, perhaps the only one in existence that I haven’t had before, the D-dimer. Apparently it is used to check for the possibility of a blood clot. Normal level is below 600, mine was 2,160–so not normal. When the doc told us he explained our sentence–we were condemned to a day in the depths of the ER. He said he wouldn’t make us ride in an ambulance as long as we promised to go straight there and not stop for a box of cupcakes–if I did have a blood clot it could be very dangerous.

Well we didn’t stop for cupcakes, but we did stop by the house to refuel and stock up on supplies for the day ahead. Technically I guess I should have been scared I might drop dead at any moment, but being cold, hungry and thirsty overrules fear of death any day. We got to the ER and were taken back to a nice quiet corner room pretty quickly, which filled us with false optimism. They stole seven more vials of my blood via the largest IV needle and catheter I have ever seen and hooked me up to all the heart monitor stuff. The doc also came by the first time pretty quickly; she said she’d order a CT scan, etc. Then we watched the grass grow faster than the CT machine became available. Eventually I did get wheeled back to get my scan and was unhappy to learn that it was with contrast–the IV contrast stuff they use makes you feel really weirdly hot and gross and like you’re peeing your pants. Back to the room. Look at that grass grow.

After another good stretch the doc came back with the good news–no blood clot! And then the bad news–that means we have no idea what is wrong with you. And then the medium news–I’m prescribing you an anti-inflammatory to help the chest pain and prevent clots. And then the best news–the nurse will be by soon to discharge you and then you can get outta here! When we left at six, poor nurse Brittney still had nine hours left in her shift. I felt bad leaving a man behind, but we had to make our escape while we could. I’m sure she understands.

 

This Won’t Hurt [Me] A Bit

Says every surgeon ever. I’ve had three surgeries now and while they happily describe cauterizing the bed of my liver or cutting bones from my nose there is one word they noticeably avoid in connection with cutting me up: pain. They speak of “discomfort” and “soreness,” and somehow always manage to skirt the “p” word. I guess they’re afraid that ms-8GQ8rTif they’re honest about how surgery makes you feel they’ll be out of a job–as if the general population isn’t intelligent enough to realize that being cut and cauterized and debrided and stitched and stapled is going to cause pain. Of course once they’ve actually had the surgery the patient will be very aware of just how far the term “soreness” is stretching it, but that’s not really the surgeon’s problem anymore right?

I’m being passive aggressive. Maybe I should just tell you the specific reason I am annoyed at my surgeon, and surgeons in general, at the present moment. Of course having had two surgeries in the past I was already aware heading into this one of the surgeon’s code–I knew that “discomfort” meant I’d be in significant pain–but really I couldn’t have foreseen this particular scenario:  I’ve been having a reaction to the pain medicine my surgeon prescribed me. It makes me itch all over like crazy, even when I take Benadryl. Tuesday I called my surgeon’s office and told them this, hoping that I could get a different medicine to help with the pain, but not cause me to scratch myself to death. Their obnoxiously polite response was that I could try taking more Benadryl and if that didn’t control the itching I could try taking Ibuprofen instead of the narcotic pain killer. And let’s not forget the suggestion that I should really be tapering down my pain meds anyways because “most” people experience the worst pain in the first couple days–essentially “stop being a baby.” Needless to say I was unhappy with their insulting and useless advice. Especially when I did try just taking Ibuprofen and discovered that I had not turned the figurative corner I supposedly should have floated around by then–my abdomen still freakin hurt.

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So I was left to struggle on my own–attempting to find a balance between pain, itchiness
and drowsiness that I could handle. Yesterday I think I finally did drag myself around that magical corner and the pain poofed suddenly into soreness (actual soreness not a surgeon’s “soreness”) that can be mostly managed by Ibuprofen.

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Today is one week post-op and I feel a million times better than I did just a couple days ago. I’m eating a moderate amount, although I still feel overly full and a little sick every time I do eat. My stomach has deflated pretty much all the way and I just have a little residual swelling from my insides being poked and prodded. I’m still much more tired than normal, even without pain killers and Benadryl combining against me; if I make it, today will be my first full day without any prescription pain meds whatsoever.

Before the surgery I read accounts of people who said they only used narcotics the first day or never needed them at all–as Hagrid might say, that’s codswallop in my opinion. Or as I might say, that’s stupid. *Steps on soapbox* Everybody on the internet is trying to sound tough and it gives people unrealistic expectations. With my first two surgeries I tried to do the same thing–prove how tough I was by using as little pain killers as possible–but I learned that it just delays healing and makes you miserable. Being in a lot of pain puts extra, unnecessary stress on the body that makes it harder to heal. Plus when you’re in more pain you’re less likely to do things that are good for recovery like get up and walk around, get enough sleep and even eat. So take it from me and just take the meds. Ok rant over. *Steps down*

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Incisions Update:

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1 week post-op tummy–not too shabby eh?

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Close up on oblique incisions 

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Close up on belly button incision–can you believe they got my gallbladder out through that little thing?

A Lap Chol Tale–Nieces Make It Better

Ok so this post is going to be interesting. The plan is to write some today, some tomorrow before and after surgery. We’ll see how it goes. By the way Lap Chol stands for laparoscopic cholecystectomy- which I can neither say nor spell without help so I’ll stick to the abbreviation.

Thursday: Prepping for Surgery

I’ve had a running list this week of stuff I need to get done before tomorrow: laundry, change sheets, vacuum, charge electronics,  shave legs, acquire necessary post-surgery food and drink supplies, do as much yoga as possible (before I can’t for a while), try very hard not to have another bad gallbladder attack, do pre-op interview and blood work,  etc. I am also doing my IG infusion tonight as I doubt I’ll feel like doing it tomorrow.

I’m weirdly excited for tomorrow–the kind of excited I suppose a pregnant woman feels when she’s finally going into labor. No matter the pain ahead, I want this thing out of me! (Except it would be totally weird and gross if they handed it to me afterwards).
My family has joked that I should ask for my gb after the surgery–I could take it home and set it in a jar on my bookcase. They think they’re so funny. *Rolls eyes* Well I have always admired Severus Snape’s interior decorating skills. I guess now’s my chance to get
the authentic creepy-guy-in-a-dungeon look.

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Friday: Surgery Early this morning I woke up and the butterflies hit me hard. I finally gave up on sleeping and watched videos of my six-month-old niece on my phone. My older brother, sister-in-law​, younger sister and I all shared a house up at school this past year. Second semester (she was born in December) if I was really nervous or stressed about something it always helped to hold my little squishy for a bit. Since we’re separated for the summer, videos had to do today. I felt much better after watching her try to sit up and grinning as her parents squished her cheeks with kisses.

I didn’t actually get a chance to write before the surgery. I didn’t wait in pre-op very long before they brought mom back, which was totally not my experience with my other surgeries.

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Making important life decisions while waiting in pre-op

While we waited together my mom drilled me on what I want to get my masters and PhD in. I told her I figured it’d be ok if I didn’t figure that out before they took me back for surgery… We were waiting for a while.

Not long before they wheeled me back my sister sent me pics of her two little girls. My 20-months-old niece was trying to walk in her daddy’s shoes while her new little sister watched her with wide eyes from her swing. I was still smiling when they came to wheel me away.

My doc said the surgery went very smoothly. Unlike my previous surgeries, I didn’t even realize I was going under in the OR. I remember taking some deep breaths of oxygen on the operating table and then waking up to a recovery nurse telling me I needed to breathe slower. I also had a much harder time waking up from the anesthesia than I have from my previous two surgeries. I’m always very clear headed–no funny drugged stories from me sadly–but this time all my body wanted to do was go back to sleep. It was also the first surgery I’ve been in significant pain as soon as I woke up. My shoulder and back hurt really bad from the gas they had pumped into my abdomen so they could see what they were doing. I really wished I had thought to bring along some Gas-X or something. They gave me my first pain pill while I was in recovery but it didn’t do much for the gas pain. I took gas medicine as soon as I got home and within half an hour the pain was all but gone. So far the gas pain has been the only thing to come close to the pain of an attack.

I got home at about noon- having reported to the surgery center at 7:45 in the morning. I got situated in the recliner, and once the meds kicked in and my pain eased up I dozed off and on while Bones solved crimes in the background.

By this time my 20-months-old niece was up from her nap. She saw me sleeping in the recliner and thought I was playing one of her favorite games- “nigh nigh,” where you pretend to go to sleep and then pop up and squeal “wake up!” Everytime I closed my eyes I’d hear the rapid pitter patter of tiny feet come up to the side of the chair, followed by a careful pause as she stood and watched me with her big, brown eyes. Then she’d get her little curl-covered head as close to mine as she could and squeal loudly, signaling me to pop my eyes open and yell “wake up!” It hurt to laugh, but it still felt good, if that makes sense.

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I got holes in ma belly

Saturday: Day One of Recovery

Last night I didn’t get much sleep. It hurts a lot to lie my side, which is how I always sleep. When I finally did fall asleep I woke up a couple hours later because my body was complaining that it was overdue for another dose of pain medicine.

I haven’t been hungry at all. Yesterday I just drank Gatorade and ginger ale; today I forced myself to eat some Jell-O and Cheerios because I was getting a lack of food migraine, but I’m still not hungry.

I spent most of the day in the recliner watching Harry Potter and Bones and napping. My abs definitely hurt when I move, but it’s not agonizing. It feels a bit like when I put my IG needles in a bad spot on my tummy and they rub against the muscle– at least that’s how it feels as long as I keep up with the pain meds.

They put water proof bandages over the 4 incisions in my belly so I got to take a shower today. It especially felt good since I’ve been feeling itchy from the pain meds–apparently it’s a pretty common side effect of narcotics. Just another reason not to like them I guess.

Sunday: Day Two of Recovery

Last night I slept much better and today I finally felt a little hungry–so we’re making progress. Otherwise it was pretty much post-surgery business as usual: recliner, tv, naps; I was not surprised, but still a little bummed I didn’t feel like going to church.

My incision sites are more sore today and I’m beginning to see nice little bruises blooming under the edge of the bandages. So far I haven’t actually been feeling a ton of pain where my gallbladder used to be, which surprises me. But hey, I’m not complaining.

Monday: Day Three of Recovery

Last night I fell asleep about an hour before I was up for my next dose of pain meds and then I slept for a good twelve hours, so I was seriously feeling it this morning when I woke up.

Once the meds kicked in I had a small cup of cheerios with blueberries and I am seriously stuffed.

A nurse called to check on me this morning and told me I could take the water-proof bandages off. As you can see my tummy is still pretty swollen–I’m having a hard time getting all the gas out. I thought my belly button incision would hurt the most because it’s twice as large as the others, but actually the little ones on my right side have been the most painful so far. Yesterday I was also running a bit of a fever, but the doc said that’s normal as long as it’s below 101.

Ok who’s ready for a nap? I know I am.

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These holes are so much smaller than they feel

Infusion Friday

It’s Friday! That means later this evening I’ll be hauling out the medical supplies and chillin with some needles in my thighs–it’s IG infusion night!

First, to start with I’ll back track a little bit with an update on the whole gallbladder drama–because I know my dozen of blood-related readers world wide are simply on the edge of their seats. I met with the surgeon yesterday and he confirmed it–the gallbladder must go. He explained the operation very well, despite the fact he was obviously on auto-pilot. I’m pretty sure he was thinking more about what he was going to have for lunch than the explanation he was giving me; he says he does about 100 of these a year, so I can hardly blame him. This is my very first one and even I was thinking about lunch! Food-related day dreams aside though, we got through the appointment and I am officially scheduled to be separated from my gallbladder on June 2nd. Sorry to break it off gb, but if it’s any consolation–it’s definitely you, not me.

Now that I am done conversing with my own organ like a lunatic, we can talk about way cooler stuff–namely IG infusions! Seriously, no matter how much I dislike sticking myself with needles and having golf ball sized lumps on my person, the inherent coolness of what I’m doing never escapes me. Not to mention how much better these nifty weekly infusions make my life. Roughly 98.73% better. Roughly.

Obviously I love my infusions, and will therefore write about them repeatedly, so today we’ll stick to the basics: IG stands for immune globulin. Healthy people donate plasma and the immune globulins are separated out. Each time I infuse a dose of Gammagard, I receive antibodies pooled from about 10,000-50,000 plasma donors, so I can get the broadest range of coverage possible. See how neat this is?

I do my infusions subcutaneously, meaning the medicine is injected just under the skin and is slowly absorbed through the fat. My infusions are done weekly, though some forms of SCIG can be done every other week. IG infusions can also be done by IV–directly into the vein–once a month. I’ve tried them all, but the weekly SCIG infusions work best for me in terms of infection prevention and how I tolerate the infusions themselves; typically, SCIG infusions have much less severe side effects than IV infusions. Plus, I can do SCIG infusions by myself at home, while a nurse is required to administer the IV infusions. Some might not like doing it themselves, but I like getting to be the one in control and having greater flexibility in scheduling, etc. Not to mention sitting on my own couch, watching Harry Potter for the 100th time and snacking on something yummy is approximately way more fun than spendings hours in a hospital infusion center.

So enough words. Here are some pictures.

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After an infusion in my tummy–yes those are flying pig pjs. They are the coolest.

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Needle in my front thigh

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Everything prepped and ready to go

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Infusion set up at home

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Me pulling the Gammagard into the syringe

 

Mom and Me Freezing for a HIDA

Yesterday I had my HIDA Scan. Apparently Nuclear Imaging technology can only be operated at arctic temperatures. For someone who is constantly cold in anything less than eighty degree weather (me) this easily overlooked aspect of the test was by far the most trying. It took most of the car ride home in a sun-baked car for mother dear and me to thaw.

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When I scheduled my scan they emphasized that I had to have another person there to drive me home. I did not understand why until an hour into the scan. The timer on the machine went off and the nurse walked in announcing “no gallbladder.” She told me to get up and move around for a bit and we’d try again, but if that little bugger was still hiding she’d have to give me…morphine! Suddenly the necessity of a driver made complete sense. I guess the morphine makes it easier to see the gallbladder- I’m not sure how. Luckily I didn’t have to find out because after a few minutes of pacing back and forth and doing the well known gallbladder-get-your-crap-together dance-chant combo, the tiny organ finally deigned to make an appearance. So no morphine for me. The rational part of me was extremely grateful, but my curious side was a little disappointed. I doubt–or that is I hope–I will not have a reason to be administered morphine again in my lifetime. It would have been an interesting experience to say the least.

Other than that small hiccup, my scan was by and large uneventful. I got in at 7:30 am and I walked blinking, frozen and stiff, but otherwise unharmed, into the welcome sunlight just after 10:30 am. So yeah, it took forever. Or three hours. The two are basically the same when you’re starving, thirsty  (I had to fast for it) and freezing. Still, if you have to get a HIDA scan, don’t sweat. It’s not fun, but there are definitely worse things out there–like math. Math is the worst.

fyzODLrZORdUAPlus as it turns out, the scan, unlike math, can be very useful. Mine showed that my gallbladder is functioning at 25% where the low-normal is 35%. So now I get to go talk to a surgeon Thursday about cutting the sucker out! I know surgery is never fun, but when I’m in the middle of a gallbladder “attack” there is nothing in this world I wouldn’t do to ease the pain. So all in all, I’m thrilled. For once, my body is misbehaving in a straightforward manner. Way to go body. You finally did something wrong, right.

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How to Start?…Jump Right in I Guess

I have been trying to get this blog started all year, but a combination of school, sicknesses and just normal life stuff kept me struggling to stay afloat. Body, mind and grades having survived finals- just barely I might add- I am now ready to finally get to write something that is not a paper.

Perhaps the most challenging aspect of finals this semester surfaced in a trip to the ER one Sunday evening two weeks before they began. For the past year or so I’ve been experiencing weird “attacks” of severe abdominal pain that for the longest time I believed to be gas pain. Well naturally, my body decided to hop on the crazy train that is the final weeks of a semester and the attacks suddenly became much worse and much more frequent. This culminated in me laying on my bedroom floor, using my cell phone to call my brother- who was downstairs- to come help me after about an hour of some of the worst pain I have ever experienced in my life. Poor guy. Mysterious medical emergencies are not part of the typical brotherly responsibilities, but he handled it like a champ. To make matters worse, my blood pressure had gone all funky because of the pain–I almost passed out when I tried to sit up, so brother dear had to carry me to the car. I suppose it’s lucky for both of us that he is my bigger brother in more ways than age alone.

The ER, was just about as helpful as usual. That is to say they gave me some pain medicine and a saline IV for the bp, made sure I wasn’t dying right that second and sent me on my merry way. Pretty typical. I generally avoid the ER at all costs, but the look on my brothers face when he found me pale and sweaty on the floor encouraged me to accept his proposition of a trip to the hospital.

A follow up with a GI (gastroenterologist) and an abdominal ultrasound later the finish line on this one still looks to be in the distance. On the ultrasound they found gallstones in my gallbladder, but my doc is convinced that they are not the problem because I am a far cry from the typical gallstone patient (Fat, Forty, Female, Fertile). So now I am waiting to get scheduled for a HIDA scan, which looks at the functioning of the liver, gallbladder, etc. I’d like to say it’s the first time I’ve laid on a table for hours while a machine followed radioactive material through my body, but I cannot. While it’s not painful, it certainly is a pain- it takes forever, it’s boring, cold (but to be fair that is my usual state), and you have to fast for it, which is fun. Oh well, as the weird crab thing in Moana sings ,”c’est la vie, mon ami.” (That’s life my friend)

So there you go. I guess you could say I’m starting my blog En Medias Res, which as I recently learned and will soon forget, is a convention of epic literature, meaning they start in the middle. So I guess that automatically qualifies my life as epic. I knew it.