Friday, January 4, 2019

How to Prepare for Major Surgery

This list is a work-in-progress and will be updated as I go. This is everything I've learned from my liver resection for a hemorrhaging adenoma.

1. Fill all  prescription meds you usually take and stock your medicine cabinet with the over-the-counter meds you rely on. Have everything you can think of on hand for your recovery. For example, I have asthma and I filled every prescription I could before my surgery date. I also made sure to have over-the-counter meds on hand for different GI issues that often come up for me. Plus, I stocked up on vitamins. You'll also need stool softeners and a mild laxative (which some hospitals will prescribe for you, but others may not so have it ready just in case).

Also if you find you're energy is really low, try sublingual B12 and a really good multivitamin. Sometimes bodies need a boost.

2. Set up a recovery station at home.  Sheldon has his spot, you have your recovery station where you'll be spending most of your time until you're back to normal. Set it up before you're in pain and high on meds.

I use a nebulizer for asthma and neglected to have it all set up and ready to go when I came home from the hospital. The problem with that was I felt like death and was pretty drugged up and unfit to be doing much of anything. It wasn't the best time to crawl on the floor to reach the outlet so I could plug in the nebulizer. I should have done all that prior to my surgery date.

Aside from meds and medical equipment, your 'recovery station' will need Kleenex, hand lotion, chapstick, lozenges, remotes phone charger, blankets, pillows etc... Think about the things you want within arm's reach and put them there.

3. Prepare for anemia. There's some level of blood loss in every surgery and that can leave you anemic. My body trends toward anemia and isn't great about self correcting, so I have to actively manage any anemia. Other people might have different experiences.

As per #1, if you end up with anemia, some vitamins and supplements might be in order. The big caveat here is that iron supplements are hard on the system, so trying things for the first time after surgery could be dodgy. If you have time, try some iron supplements before surgery and see how they impact your body. Iron supplements can either constipate you or cause diarrhea. These extremes aren't helpful when you are recovering from major surgery.

In my experience, the best iron supplement is a German product called Floradix (which was recommended to me by one of my nurse friends). It's very gentle and easily absorbed. I've used it off and on for several years now without issue. I order it on Amazon.

4. Stock your freezer and pantry for the initial recovery period. You're not likely to be too hungry right after surgery and will not be able to handle a lot of food. Stock up on jello, broth, bread, crackers, sorbets etc... for the first week+ after surgery. Think stomach flu foods.

5. Fill your freezer and pantry with nutritious food for ongoing recovery. Once you're past the jello stage, you'll need something more substantive to eat, but you still won't be ready for heavy meals. At a minimum you'll want some kind of light soup with protein (I prefer chicken, but whatever works for you).

It's also a good idea to make some high fiber cakes or bars. I made pumpkin cranberry bars with almond flour and ground flax seed. Fiber helps keep your bowels moving and counters the constipating effects of pain meds.

I also juiced greens, apples, carrots and celery to try and give my body as much easy-to-absorb nutrition as possible. However, I did find that I wasn't able to eat much, so don't be surprised if you're struggling to eat anything. In my experience, you won't be eating normal amounts of food for a while.

6. For major surgery, pain meds are an incomplete solution to pain in my experience. Be ready to sit through a lot of pain with no end in sight. Ice packs and hot packs are useful. You may want to stock up on those instant cold packs.

I used the lunch box pack in my freezer, but they were thick and lumpy and uncomfortable. The instant ones at the hospital were more flexible and might want to have a few on hand and you can send someone to buy more if they end up being something you rely on.

For hot packs, I used my usual microwaveable hot packs.

A key point to keep in mind...some pain needs one temperature over the other at first and then it switches as healing occurs. So try both and see which one you find the most relief with, then flip it as time goes on.

As an example, I had a bad pain spot in my back that needed ice for the first week and then resolved with the hot pack the next week.

Quick pain tip: Plan any postoperative walking or activity around your pain medication. Walk right after you've taken pain meds or right before you're due for the next dose. Activity early on can make pain worse so mitigate it.

7. Prepare for sponge baths. The first week or so after major surgery you might not be able to handle a shower. You also may not be allowed to shower for a certain amount of time due to your incisions. Enter the sponge bath.

I washed my hair in the sink for a while after I came home from the hospital and wiped down with a hot wash cloth. I was so weak and light headed, a shower or bath would not have been safe.

8. You're just not going to care. If you've ever wondered what it's like to give zero fucks, major surgery will show you. You're exhausted and cut up like Frankenstein. You're just not going to care about the little things, or the medium things, or even some of the big things.  You're going to be out of bandwidth.

Identify important things that will hit during your recovery and work ahead. Pay bills and tie up loose ends before surgery. Say no to people, places and things. The recovery period is not the time to do anything big.

9. Pace yourself. Early on, if you take a shower, plan to rest afterward. If you go for a walk, plan to rest afterward. If you vacuum, plan to rest afterward. For a while, it'll be do one thing, rest and then do the other thing followed by another rest period.

10. Get your laundry done. Have a week or more of clothing lined up for after you come home from the hospital. You're not going to be up to doing a lot of laundry. Thankfully, my hubby kept up with the laundry, but if I'd been on my own, I would've been wearing the same underwear for a week without some advance prep.

In addition, if you don't have soft, loose clothing, stock up before surgery. You want pants with very soft, stretchy waistbands (depending on your surgery) and baggy shirts. If the surgery is anywhere on your stomach, you'll likely be bloated a size or two higher than your usual size.

A warm sweater or fleece jacket and slipper socks are good ideas as well.

If you care about how you look, now's the time to figure out 'recovery outfits' that will make you happy. My soft stretchy clothes were pretty old and unfit for public viewing, so I got a few basics that could be seen outside of the house.

11. Prepare for hair loss. Major surgery causes the body to route all resources to healing, which means hair is abandoned as a non-essential. It might not fall out right away, but at some point you're probably going to be losing hair for a while. This is normal and it should grow back as you recover.

Give some thought on how you want to handle your 'do while you're recovering. I went with a short cut before surgery as short hair hides thinning better than long hair and is easier to care for.

12. Protect yourself from pets. I've known many people who've been nailed right in their incisions by over enthusiastic pets. My 80lb rescue lab almost got me and I knew enough to try and prevent exactly what happened! Pets are sneaky that way.

Some pets may need to be boarded for a while. Other pets can be managed by simply shutting them out of the room you're in. The main thing is to protect your incisions from your pets and prevent falls. You don't want to end up in the ER because the dog cannonballed your stomach.

13. Sleep as much as possible. Anesthesia and other meds can mess with your sleep. Not to mention pain can keep you up. Basically, you're a newborn again. Time doesn't matter. Sleep when you can and don't worry about being up at night...when pain is often at its worst. Just sleep whenever possible because that fosters healing.

14. Walk as much as possible. Exercise also fosters healing. Every time I made an effort to walk, my pain improved the next day. So keep walking. Even if it's miserable (and it will be miserable in the beginning). Ignore how you feel and just do it, but don't over do it. We're talking short walks. Nothing heavy.

If you're feeling ambitious, take your short walk as usual, then rest and do another short walk later. That way you don't get stuck in a long walk with no way out.

You can hurt yourself by doing too much, so if your energy is surging, don't trust it. Go slow.

Wednesday, January 2, 2019

Finally A Break

I finally caught a good wind in my sail. The panting, which I assume was caused by the anemia, responded like a miracle to iron supplements. Once I wasn't panting like a dog, my lungs were able to clear out and calm down.

The asthma broke and crawled back into its hidey hole.

So that was good news.

I've started to feel like I'm actually recovering this week.

The first two weeks after the liver resection (aka hepatectomy) for adenomatosis were a mess of 'I think these people are going to kill me' and 'If these people don't kill me, the pain will.'  The third week has been 'I think I'll live.'

The initial stages of recovery were not pretty. It was brutal. Way more brutal than I imagined.


I got through it.

My dermabond is off and the incision sites should heal into teeny scars...except for my belly button which was somehow butchered and left with a thick ridge of tissue instead of a thin seam. Something went wrong with the dermabond there. The one side of the incision was pulled up and over the other and the tissue pokes out. Maybe they can revise that with the next surgery.

But I feel almost normal.

I still have pain and a bunch of other tumors. I will be curious to see what things are like in another month. For the most part, this surgery was preventative and not curative, so I don't expect any huge change.

For the moment, I'm working on getting back in shape, making doctor appointments for the next surgery and trying to figure out a work schedule. Time to prep for instant menopause.

Saturday, December 29, 2018

Pale and Waiting

Had pale yellow, clay-like stool.

Called surgeon and asked 'is this a thing that matters?'

They ordered STAT blood work.

But then weekend started so nothing will be done.

I did finally realize I had access to a bunch of lab results in the online portal. I reviewed them all aaaaaand...I'm anemic.

8.0 hemoglobin
22% hematocrit

So that explains why I've been panting like a fucking dog for the last 15 days.

I didn't think I'd bled enough to be anemic. They touted how little bleeding I'd had, so I didn't even think about anemia (although I should've known better, especially with this surgical team).

At least I anticipated this a bit and had stocked up on the iron supplements I like.

I've started slamming back iron like it's candy and am anxiously awaiting for the 5-7 day mark when it will finally start to have an impact.

Meanwhile, the 5 day steroid burst ended, buuuuuut the asthma flare didn't break. My lungs are stuck. I hope improvements in the anemia will correspond to improvements in the asthma, but we'll see.  I don't know what else to do. :(

Friday, December 28, 2018

Going Backwards

Lungs got worse. Developed a cough. Had a low grade fever here and there for a bit.

I fought back hard with the nebulizer and all my inhalers, but when the hubby lit some matches it was instant Game Over for me.

It was either steroids or the ER where they would go 'huh, what do you mean you're not supposed to take steroids?' I did not have the breath to deal with that.

So here I am on a 5 day burst.

Good thing I did it, as after the matches, I got hit with diesel fumes from the tree trimming crew. (We have a massive, ancient oak tree that needed exactly the wrong time for my lungs).

I called the pulmo, who as per usual, has no time to see me, but did eventually relay that they didn't want me on steroids either due to their impact on wound healing.

But then had nothing to offer to help.

I've done what research I can. My sense is steroids can end well, they don't always fubar wounds up. I'm navigating my risks as best I can with a surgeon who does not give one shit and a pulmo who can never absorb emergencies and any ER visits would be a hot mess of WTF.

The scary part is tomorrow is day 5, but my lungs are still crap so...then what?

Thursday, December 27, 2018

In Which I Try to Explain Asthma to Liver Surgeons

I've had something like 12+ doctors appointments since landing in the ER this past October. Each time, I disclosed my medications and health history.

Same for the presurgical consult.

I thought when I said things like, "I have asthma. I'm on Symbicort daily and pulmicort, pro air, albuterol solution and prednisone as needed' that they understood I had asthma.

Not Kim Kardashian asthma that expresses as a cute little cough and comes with a custom inhaler cover to match your purse and shoes.

No, I don't have that asthma. I have jihadist, kamikaze asthma that has declared me an enemy who must die.

My asthma, when activated, does not play.

The blessing and the curse is that moooost of the time, the asthma is controlled. So everyone gets complacent and tends to dismiss my intense interest in staying on top of it.  (Except my pulmo because she's seen it in action.)

But you don't get a never ending prescription for prednisone 5 day bursts because you can breathe just fine, you know?

So after the liver resection, my lung partially collapsed and the asthma came out to play and I didn't see good O2 sats for days. Unfortunately, no one really noticed. On Day 2 I woke up enough to go 'gee, I'm undermedicated for this' and started demanding meds in an effort to find relief.

(They were treating me with oxygen and one puff of Advair and nothing else.)

The 'we are bros, bro' residents told me they were going to discharge me with shit breathing and that I couldn't take any steroids for my lungs.

And I freaked.

Seriously? You are going to discharge me with O2 in the 80s and tell me I can't use my 'asthma action plan'?


I kept asking them about it. Trying to get them to make the connection that maaaaaybe it's not the smartest thing to ditch a patient at home when they aren't breathing so great. Maaaaybe the bro code could include figuring something out so I don't bounce right back into the hospital.

However, I was in a lot of pain, my O2 was not great and talking was very difficult. Meaning, my ability to express myself was not at 100%. I don't think I was very effective and the bro residents really were not interested.

FINALLY, my family got one of the halfway decent residents in my room and I tried to explain again.

"If I can't breathe now, what do I do if it gets worse when I go home?"

They had no answer. I brought up prednisone.

"No. No. No prednisone. We're not giving you any steroids."

"I don't need you to give me steroids. I have prednisone at home."

You should have seen the look on the resident's face. Like, he was shocked. Utterly shocked to learn I had steroids to use at my discretion.

Somehow that translated. The light bulb went off. "Ooooh you have asthma." I don't get why this was such a shock to any of them, but there it is.

I then pushed for a pulmo consult, which was too late in the game to help me much. I'd already gotten the meds they could have prescribed and lined up the RTs for nebulizer treatments.

I resent that I had to work that hard on my care. I was exhausted, in pain, and struggling to breathe, and I had to argue and argue and OMG argue for care. I can't believe they didn't pull in pulmo when the lung collapsed, but apparently that is just not done. It was very disappointing.

Ultimately, nothing was settled. I was sent home with no plan for my breathing and was left to manage it on my own. I don't know why a surgeon would bother to cut a patient if they weren't going to ensure something else didn't ruin their work down the line, but here we are.

Wednesday, December 26, 2018

Liver Resection Recovery 10 Days Out

1. Finally off narcotic pain meds and on Advil. I have pain but it's below a 5. When they sent me home I was still at an 8/9. My abdominal wall does not like to be cut. For some reason, the pain is always excruciating for me.

2.  I can poop! Woo! I took the Colace they prescribed, and as time went on (and on) I added in magnesium and then Senekot.

3. Lungs still dodgy. Since yesterday, I can't take deep breaths. I feel like I'm 'pinned down' on the right side. Asthma is mildly flared. I keep yawning and am still short of breath on activity and with talking.

4. Walked 22 minutes yesterday. A little over a mile. Am doing some stairs as well. With the lungs, I kind of walk a bit like the Hunchback of Notre Dame. Shoulders up to my ears and bent over. Sometimes I have to stop and put my hands on my knees to release the pressure on my lungs and abdomen and just catch my breath. Working on building up from here.

5. I can finally eat! But not a lot. I still have 29 other tumors, 28 of which are in my liver and they are not totally inert. My liver definitely has a hard line when it comes to food. So I'm still dancing around that.

6.  I have a divot on my back that is somehow related to all this. I don't know how though. It hurts and throbs and sometimes itches. I started with ice packs and have switched to hot packs trying to help it heal.

7.I am so sick of sleeping on the couch. Ugh. But our 80lb rescue dog--who is still fairly new to our family--doesn't understand he can't walk on my stomach. For the time being, I have to stay quarantined from his rather aggressive love bug tendencies. He snuggles like an anvil on the head!

Thursday, December 20, 2018

The Other Side

It's 2:51 am and I've just finished plucking my eyebrows. The things you do to distract yourself from pain.

Now I'm here typing, because I can't stand any more.

I had the liver resection surgery. It was a clusterfuck. My asthma did not behave, my lung partially collapsed and my body tried hard to never breathe again after anesthesia. It's been very painful...I continue to find opiates largely ineffective and doses were limited due to the 'bad reaction to anesthesia'. 

If I'd known how painful and how little anyone would care about the pain, I'm not sure I would have done it.

I had an incompetent resident, who forgot to BE a doctor and instead became upset and increasingly unprofessional in both technique and behavior. That genius trashed my hand and caused me to injure my abdominal wall in a near fall.

Other residents...I don't know quite how to describe it...kind of like they lost any reverence for what they do. I found them disrespectful, not to me per se, more to the heart and soul of medicine.  Like, are you here to be a cool 'bro or serve the greater good? A small herd of them showed up every day. There was a lot of ego posturing at the foot of my bed. It was weird and juvenile. They needed more supervision.

And yet other residents were fine. Unfortunately, I didn't get them very often.

Group think tried to ignore the asthma and tell me I had sleep apnea. Even though my O2 would drop to 80 during the day while I was awake. I had to fight like hell to get the asthma taken care of. I don't even know why. It's not rocket science.

As I became more with it, I demanded more meds and got pulmo involved...too late though to really help. However, pulmo and I were on the same page. I wasn't crazy, but after days of being left to fight for every breath, I was starting to think I was.

I haven't eaten for 7 days. I can't eat. I try and my body very clearly says NO. I feed a lot of people my Jello. lol Two bites and, "Here, you eat it. I'm done."  

But I'm hungry. I spend a lot of time noticing all the random food that pops up around me. I've watched every recipe that has come across my Facebook feed with an intensity normally only seen in dogs. 

I'm up most nights due to the pain. I just stare at the ceiling, breathe around the pain as best I can, and try to let the drone of the TV lull me to sleep, but it's a long slow process. Sometimes I don't have the patience for it.

At the moment, I've realized the nurse didn't remove the stitches for my arterial line (what is that? A Pic? A central line? I'm not sure of the term). Mostly the nurses were fantastic. One even gave me a big (and gentle!) hug and then came to say hi when she was on the floor but assigned elsewhere.

The reality was, I was in so much pain and struggling so hard to breathe, I was not a high maintenance patient. I chased sleep constantly, hoping to sleep my way through the worst of it and save up some energy to deal with the sleep apnea cult of bullshit.