My Thoracotomy: The Week-by-Week Details I Wish I Had
This post is a bit of a departure from my usual theme. If the details of my post-op recovery don't interest you, feel free to skip this post and come back for my next one.
After my thoracotomy, I went looking for real-life details of what was ahead for me in my recovery. I wanted to know if what I was experiencing was anywhere near "normal" for thoracotomy recovery. I wanted the nitty gritty, the week-by-week details. But I didn’t find that kind of help anywhere on the internet. So, I wrote out my experience in hopes that it will help someone like me, someone looking for a reality check. May it be a help.
Day 1
Background: I had a Posterolateral Thoracotomy to remove a portion of my right lung. It was done on a Saturday so that the surgical team could focus on the various risks in my body with the least amount of distraction. It was done in an almost emergent situation. I was bleeding in my lungs. I did not have lung cancer, the most typical reason for lobectomy.The surgery took about 6 hours. I bled a lot and needed 4 units of blood. The surgeon had told us that, normally, he doesn't need to use blood, or if he does, it's very little.I came out of anesthesia with a very sore throat due to a double-lumen endotrachial tube used for anesthesia. This tube is used in thoracotomies because it isolates one lung from the other, reducing some risk factors.I am not large breasted so I did not need any type of post-surgical bra. It wasn't even mentioned. I now know that it is common post-surgical equipment because I went searching for tips on finding bras that don't hurt after a thoracotomy. (More on that later.)I went to the ICU after my surgery but that was not planned. In fact, my surgeon had specifically told me that he almost never sends patients there after surgery and didn't expect to send me there. Unfortunately, I continued to bleed in my lungs after the surgery, so I was sent to ICU for closer monitoring. I did not have a catheter so I was able to pee on my own.The nurses regularly checked my chest tube to make sure it was draining properly. It was draining a pinkish fluid, which is normal. The tube came out of my skin just below the bottom of my rib cage. Internally, it was resting on my diaphragm which meant it constantly moved a little bit. It was uncomfortable but not painful. However, when the nurses or doctors checked the drainage, they would manipulate the tube and I could feel that internally, like a bubbling sensation. It wasn't pleasant. This also happened when I moved from the bed to the toilet or chair.
Day 2-3
Physical Ability:
began sitting up in a chair and walking to the bathroom by myself
slept a lot, mostly on my back, slightly elevated.
started eating a regular diet.
Emotions:
had nightmares and odd dreams that were upsetting (caused by the narcs)
Pain:
downgraded to a room on the Telemetry Floor.
pain was managed with regular doses of IV Tylenol, oral Oxycontin, and when the pain was too much, Dilaudid. I felt pretty well maintained with just the IV Tylenol and the Oxy.
constipated and no BM's. This is the negative side of pain medications.
I began using the Incentive Spirometer. Ideally, I was supposed to use it at the top of every hour. Realistically, I used it about 8 times a day. To give you an idea of my progress: before surgery, I could get to 2000, which isn't great but it is what it is. After surgery, my first reading was 500. Why do they instruct you to use an Incentive Spirometer after surgery? Well, the biggest risk after a thoracotomy is pneumonia because when everything in your chest hurts, it's tempting to take small shallow breaths. Those hurt less. But those don't move air and junk from the bottom of your lungs. So, the risk is that fluid will build up down there and create an infection. The more often you take a deep breath, even a small deep breath, the less risk you have of building up fluid and getting an infection. So, it's important. I took it seriously and made myself a personal goal of getting back to my pre-surgery mark within a few weeks.
Day 4-5
(The original plan was for me to head home on Day 5, but because I had another procedure, I did not go home until Day 6.)
Physical Ability:
no change
Emotions:
no change
Pain:
still no BM. So, now, the medical team started giving me laxatives, Colace, and prune juice.
pain medications stayed the same.
The most intense pain was around the rib that was broken during the thoracotomy. We used ice packs on that area and kept the ice going around the clock. I also used a small rectangular pillow that the hospital volunteers gave me. It protected that tender rib area from being bumped by my right arm and from the weight of the sheets.
continued using the Incentive Spirometer and felt like I was making progress. I couldn't take big breaths but I was trying to.
Day 6
Today, things changed.
Physical Ability:
could not tolerate siting up
could walk but with great pain
went home
Emotions:
more agitation and fear...probably caused by increased pain
Pain:
pain increased. It was causing nausea.
It turns out that during the thoracotomy, the doctor broke a rib to get better access to the thoracic area. That broken rib would have sent my pain off the charts so they treated the broken edges with a special non-opioid, long-lasting anesthetic called Exparel before they closed my incision. They gave me a special bracelet that said the Exparel would be effective for 96 hours. (Note: 96 hours = 4 days) But no one told me what that bracelet meant and why I was wearing it. So, Day 6 arrived, and very suddenly, my pain went from well managed to, "Oh No! Why aren't the pain meds working? I want to die!" The effect of the Exparel had finally worn off. I started to feel the real pain.Despite this, the nurse and my husband began making plans to send me home.The surgeon removed the chest tube. That required a dose of Dilaudid. The procedure was quick. The entire procedure, including adding the stitch to close the wound, was done while I held one long breath.Then, my sister and husband changed my clothes and a nurse rushed me to the entrance to the hospital where my husband had the car waiting. We took a pillow and ice pack with us and I just gritted my teeth the whole way. My husband drove QUICKLY and we made it home alive. Finally, we moved me upstairs to my bed before the best effects of the Dilaudid wore off. IV Dilaudid gives immediately pain relief and for me, it lasted about an hour.
Before leaving the hospital, the nurse gave one last try at breaking the constipation. She gave me another huge dose of Colace. Nothing. So, once we were home, I took Senna and drank lots of prune juice.
Once I was home, we managed my pain with oral Extra Strength Tylenol, Ibuprofen, Oxycodone, and ice packs. I took them around the clock. In order to not miss a dose during the night, we used an app called "Medisafe."
In order to keep ice packs going through the night, we used these moldable ice packs and kept several in an ice chest near my bed. We changed them out in the morning for several more that we kept in the freezer. Note: we tried bags of frozen peas but they just got soggy and made my clothes wet. We also tried the generic version of these ice packs but they didn't stay cold for as long.
Day 7
Physical Ability:
could walk to the bathroom from my bed, with help.
could sit up
noticed an odd burp when I swallowed pills or drank water, little tiny burps
noticed little sounds in my chest: ticking, wheezing/whistles. The surgeon said that's normal as my body adjusts to the changes inside my chest after the thoracotomy.
Emotions:
easily started crying or getting upset (emotional)
loud noises agitated me
still having nightmares
Pain:
constipation finally ended.
new symptom: nauseous. It turns out that the lining of my stomach had been damaged from all the meds I had been on for over a month. The Ibuprofen was very harsh on my stomach and took my nausea to a whole new level.
meds stayed the same
cold, swollen feet. not too painful. We treated by using a heating pad on my feet, kept them elevated even during sleep, and I wore fuzzy socks.
Week 2
Physical Ability:
sleeping/napping between pain medication doses and ice pack swaps
walking to the bathroom with assistance
walking downstairs with assistance
showering with assistance. I also used a shower seat... I couldn't stand by myself safely.... very wobbly... my legs had lost strength and stability.
sitting in a chair as much as possible
increased Incentive Spirometer reading to 1000
still burping
still hearing ticking and whistles in my lungs
Emotions:
no change
Pain:
no change to meds
breath with the incentive spirometer hourly
Week 3
This week, I had my post-op appointment with the surgeon. I had a CT of my lungs first, then we met with him in his office.
He removed the one stitch from the chest tube incision.
He checked the thoracotomy incision which still had all the steri-strips attached.
He encouraged me to walk more. This was to help build my endurance, move my circulation, and increase my lung capacity.
Physical Ability:
progressed from walking downstairs (with help), to walking out the front door, to walking to the end of the driveway.
could walk to bathroom by myself
could shower mostly by myself. I needed assistance with drying my back, around the incision.
still burping
still hearing ticking and whistles in my lungs
Emotions:
experienced grief. Started processing the stress of the past month. Cried a lot.
nightmares
hard to focus. Watched a lot of TV between naps.
Pain:
increased my Incentive Spirometer reading to 1300.
Some time this week, I went to the ER for the nausea. They got it under control enough to send me home. From then on, we stopped using the Ibuprofen entirely and depend on the Tylenol and Oxygen for pain management. By then, I had lost 10 pounds from my pre-surgery weight and would continue to lose weight for another week.
started tapering the Oxy and it was easy. The Tylenol was very effective.
started taking Carafate to coat my stomach to keep the nausea at bay.
Week 4
Physical Ability:
I increased my walking to the end of the driveway and across the street.
I started having an appetite and eating just a little bit more at each meal.
I tried standing up in the shower but still used the shower seat too.
still burping
still hearing ticking and whistles in my lungs
Emotions:
still crying easily
still having nightmares, but less often
could focus on a magazine article or book for short periods
Pain:
I decreased my use of the ice packs.
I stopped using the Incentive Spirometer regularly.
I continued decreasing the pain meds and starting to space them out longer and longer.
At this point, I was still wearing sweats and tank tops, nothing with sleeves. I couldn't wear a bra because the incision line was located right where it would cross a bra strap and because the pressure of the elastic around my rib cage would be excruciating. So, I wore camisoles that did not have a shelf bra. I could wear a shirt over the cami but I preferred not to.
This is the point at which the doctor predicted I would feel 80% better. I did not. Not even close.
Week 5
This week, I began to feel some momentum:
Physical Ability:
We sent my mom home. She'd been staying with me from the first day in the hospital. She slept in my room in the hospital and at home in order to give me meds, ice packs, and anything else I needed at any hour. She helped me shower, helped me walk, and checked on my incision since I couldn't see it because of it's location on my back.
I walked to the end of the street.
The steri-strips started falling off.
I stopped using the shower seat.
I stopped using the ice packs. Still used the small pillow at night to protect the rib from the weight of my blankets.
I could take deeper breaths because the rubber-band feeling around my rib cage was lessening.
My hair stopped falling out. This was a side-effect of the anesthesia.
Still only wearing camisoles. No bra. Started wearing jeans and other regular clothes.
I made a new goal to try to get out of the house. So, I had one lunch date and it exhausted me. I came home and took a long nap.
I was still burping, often with a cough.
I heard less ticks/whistle sounds in my lungs
Emotions:
fragile but not crying as much
still foggy brain
Pain:
I started sleeping through the night, stretching out the time between pain meds in the middle of the night.
I quit the Oxy. My husband called it "rage-quitting" because I was sick and tired of the slightly upset tummy, slightly constipated bowels, and the overly-sensitive emotions that the Oxy was causing. So I just stopped taking it. The Tylenol did a surprisingly good job of managing the pain.
Week 6
Physical Ability:
I felt like trying to walk farther and do some normal things, but everything made me run out of breath. My hear rate was spiking. The doctor's view on the stamina and heart rate issues was that my body was still overwhelmed by the amount of trauma I had undergone. They told me to keep resting for another 6 weeks.
I was still napping daily.
I was joining the family at the table for dinner by this week but even the conversation was exhausting.
I was still burping.
I heard less ticking/whistle sounds in my lungs
Emotions:
frustrated with slow progress
Pain:
Continued to increase time between pain med doses.
Still no bra.
started using a blend of essential oils along my scar line, hoping for a nicer scar and quicker healing of muscular pain in that area at the same time.
Week 7
Physical Ability:
I went to church for the first time since surgery. Hard to sing or talk for long with friends. I would get winded.
I walked to the end of the street daily.
I attempted grocery shopping with my husband. I couldn't finish and ended up sitting in the car until he was done.
I still burped, often with a cough.
Emotions:
feeling better. Happy to be out of the house a bit. Happy to be moving around better.
Pain:
Tylenol
Still no bra.
Weel 8
Physical Ability:
I had a pedicure with a friend.
I sat in the sun and moved around in the backyard.
I tried driving with my husband in the passenger seat. It didn't hurt to drive but the muscles along my ribs and under my arm were sore. I also noticed that things seemed to be coming at me fast. It was a lot of sensory input to process. But I did it and did it safely.
Emotions:
feeling pretty positive now.
Pain:
I bought a sports bra that did not cross the incision. It also had a wide band that went around my ribs a little lower than the rib that was broken. I could only wear it for a few hours each day as my muscles adapted to the new pressure.
I think I felt 80% better at this point.
Week 9-12
Physical Ability:
Driving on my own
No matter what, by 3:00pm I needed a nap.
Doing more normal activities.
Emotions:
now that I'm off the Oxy, my emotions are back to normal.
the brain fog is gone. I CAN THINK!
Pain:
My ribs hurt like crazy when I sneeze.
My incision hurt when people hugged me tightly.
Reaching above my head with my right arm was hard. I didn't realize at first that this motion was bringing the old constant rib pain back. Once I stopped doing that motion and started getting a bit more rest, the pain subsided. This was an example of "too much, too soon."
I get little muscle twinges near the old broken rib that feel like a deep pinch. It takes my breath away. But it happens randomly.
Post-Three Month Mark
Here I am. It's been 3 months since surgery. I feel good but I still can't do everything I want to do. I need more rest than usual. The muscles around my incision are tender. There's some numbness around the incision. The pain I felt when reaching above my head with my right arm got worse. My “solution” of not moving that arm made things worse because the pain was caused by tightening of the muscles around my incision. They needed to be stretched but I had almost stopped using them at all because it hurt to use them. I needed physical therapy to heal that, but only 2-3 visits. Once I started intentionally using those muscles, the pain went away, slowly, but completely.
I feel 80-90% back to “normal.” The surgeon warned me that it could take 6-12 months to fully recover. That there would be days when the muscles would twinge or I would feel the old rib pain with certain movements. That is exactly what I am experiencing. I have adjusted my mental goals to not expect pain-free days. To take a longer view, expecting full recovery at a year from now. I feel that I have settled in to a new normal that I can be happy with. I wish my stamina was better but this is where I am. I am happy to be here, able to do most things, fully aware that life is a gift.
To make things easier for you, I put every resource from this post into one easy downloadable PDF. I also included ONE BONUS RESOURCE. Downloadable "Resources for Thoracotomy Patients"
Updated Feb 2021:
THREE YEARS POST-SURGERY
The numbness around my scar is still present but minimal. I no longer have pain around the incision or near the rib that was broken. Note: at about One Year post-surgery, I began having new intermittent pain near that broken rib. It was very uncomfortable. I asked a few professionals and the consensus was that the nerves surrounding that rib were healing. That was great news, but an uncomfortable process. Those intermittent pains lasted for nearly two years. I’m not having them currently, but I’m not confident they are gone for good.
My stamina is still not what I would like it to be but it is better. I huff and puff when walking up hills but I can walk up hills. Extreme elevations are difficult for me. For example, I visited a resort town in Colorado and went over a mountain pass at 11,000 feet elevation. Near 7,000ft, I began feeling tingly and my arms felt heavy. I was able to breathe and walk around in town, but we chose not to stay overnight. I can’t imagine hiking or skiing at that elevation.
A Pulmonary Function Test (PFT) at about the One Year Post-Surgery mark confirmed that I have reduced lung capacity. No surprise there. That doesn’t mean I can’t be active and travel. It means that when I huff and puff when no one else is huffing and puffing, it’s because they have more lung tissue than I do. Plain and simple.
For the women: After about a year, I tried to wear underwire bras again but they really hurt against my broken rib. I tried again and again but it never got better. I went on a search and found a bra that supports like an underwire without any wires. It’s called the Enbliss Wireless Bra, made by Soma. You’re welcome. :)
~ Nicole
PS. I created a basket of things that helped me feel joyful during my recovery, things that helped me “choose joy.” My Joy Basket held magazines, chocolate, fuzzy socks, and also the less fun stuff like the incentive spirometer. It started next to my bed and then relocated downstairs near my chair. Then it just moved around with me as I improved and became more mobile. I wrote a post about how to create your own Joy Basket. I hope it help you choose joy too.
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