Recovering from Open Liver Resection Surgery

They say those who have good health or have never needed to go in the hospital are lucky, but after my surgery and recovery experience (previous post mentioning it) and the rallying from my friends, family and colleagues, I’m the one who feels lucky.

It all started when I was pregnant with my son and my morning sickness subsided but I felt full and sick (and still hungry) after just a few bites of rich food, like dairy, bread, or meat. But I could eat a pound of watermelon without pause. An ultrasound of my abdomen showed a growth in my liver. With precious cargo for a neighbor, nothing could be done to further examine or hinder the growth while I was pregnant so it was tracked with regular scans. Each one showing a larger growth than the last.

Around 30 weeks along with my pregnancy (aka, the home stretch), I saw another liver specialist who said it was being evaluated with a panel of liver and gastroenterology specialists in Ireland since it was the largest suspected hepatic hemangioma they’d ever seen in a pregnant person. Tests to fully confirm what the growth was couldn’t be done while I was carrying a baby so they just hoped and guesstimated. All my other bloodwork was ok so they had faith it was a hemangioma.

It was in an awkward location because after baby turned, he’d kick it. It was well cushioned by the healthy part of my liver and other gooey abdominal parts so no risk. But it was odd not being able to stomach so many foods. I got horrible indigestion from bread, butter, dairy, and pasta, but was absolutely fine eating Bombay mix and Buffalo sauce (on salad or as a dip for steamed broccoli).

The doctors believed the liver growth would stop growing and possibly reduce in size after I gave birth, with the reduction of hormones and blood flow that sometimes fuel growths in pregnant women. Five months after they discovered the growth, and only a few days earlier than his due date, I gave birth to my tiny HEALTHY little bundle (5.5lb/2.5kg). The liver growth continued to progress at the same rate (about a centimeter a month). Within a year of giving birth, the growth was now classified as “giant” (10cm x 12cm) and we met with a surgeon who felt it should be removed. We discussed it and decided to wait a few months until LB was walking so my recovery would be a little easier (and I was still hoping it would get smaller). This is the size:

When we returned after a new scan showed it had grown even larger, we knew surgery was necessary. But I was disappointed to find out an open liver resection was essential. This would be a much longer recovery time and a very large scar. Had it been removed immediately after I gave birth this could have been avoided, but that would have been a very traumatic start to motherhood.

It took a few weeks to process this but by the time the surgery date arrived, I was emotionally and logistically prepared. Childcare for LB was organised by way of my American father flying over for the duration of my surgery and recovery to make sure there was one single person with him to manage his meals, snuggles, and needs. Many friends volunteered as well. Knowing I’d be in bed and not very energetic for a few weeks, I got several inches of my hair trimmed off so caring for it would be easier.

Before

After

All Done (I love it!)

While at the salon for the haircut, I received a call that they wanted me to be admitted to the hospital four days early so I could receive antibiotics, IV fluids, and rest to better prepare me for the surgery. There was also a preliminary procedure they hoped to perform, but in the end couldn’t. Not having those last days to prepare rattled me and made me feel like I still had so much to do. My Dad was to arrive the following day from the States so that meant I needed to arrange childcare for LB for the rest of that day. I’m so lucky for good friends!

Everything I read about the surgery was intimidating but reassuring as well because I knew my surgeon was skilled. When people found out who my surgeon was, they said “he’s a genius”. That was all well and good but the real reassurance that he knew how to perform a liver resection was when I received a four-page glossy brochure about liver resection surgery…and his photo was printed on the back. Silly, I know, but it was comforting.

The surgery itself was expected to take several hours, but only took two and no blood transfusion was necessary. This was a pleasant surprise for everyone. The surgical team removed the hockey puck-sized growth, 20% of the surrounding liver, and my gallbladder. I couldn’t move and had more than eight tubes and lines running into or from my body. The morphine and epidural kept it from being agonizing. The tube down my nose was the most uncomfortable, you know, aside from the huge surgery that was healing in my abdomen.

The incision (and subsequent scar) runs from between my breasts down and around the bottom of the right side of my ribcage and to my right hip. If you ever see me in person and ask, I’m willing to show it to you. When I first learned of the open surgery, I was worried I would be disfigured or ugly afterward, but now I see the scar as a sign I am a survivor.

One day later, I had my first thing to drink…a couple sips of water.

Another day passed and I was treated to a cup of tea! Though I couldn’t stomach hot liquids for a while, it was still comforting to have someone make me a cuppa. Almost like my Mom was there with me.

Removing most of the tubes and lines was fairly painless except the drainage tube that was in my side. Oh, now that one hurt as you’d expect since it was an actual firm plastic tube stitched into my abdomen. Don’t worry, I won’t share a photo of that. During that time, I also needed to do breathing exercises to make sure my lungs inflated properly after the surgery. My appetite was barely existent. A rarity for me. The first attempt to stand and walk after the surgery was so difficult and tiring. My roommate Liam was in the same boat though so we encouraged each other with friendly banter. But most of my time was spent in bed, resting.

I was fortunate to receive care packages from a few knitter friends and local foodies. Soup, a salad and magazines from Kate of Fenn’s Quay. Macarons and magazines from Mairead of Idaho Cafe. Fresh oranges and skin creams from Dee of Dee’s Wholefoods. Which kept coming when I got home and Avril of Rosscarbery Recipes provided black and white pudding for the lads’ dinner. Michael of Bradley’s Off-License gave me two bottles of ginger beer for the nausea. Deirdre of Arbutus Bread (with Michael’s help) gave us a loaf of their amazing sourdough bread. I was spoiled!!! And my friend Bonny in Canada mailed me a huge care package. And many many cards from my knitting friends.

And friends like Arlene, Margaret, and Cian came over either with fully prepared meals or cooked something up in our kitchen.

I won’t sugar-coat it, there were times when I cried from the pain and even standing up would bring me to tears. One evening in particular a nurse popped in to say hi and I was trying to stand up from the bed to go to the loo. I had such trouble and burst into tears. Even though she was just leaving at the end of her shift, she stayed to help me up and to shuffle down the hall.

Within a week, I had all the tubes removed and was going home. My surgeon came to my hospital room and reached out his hand to shake it. He said with such joy in his tone, “There was nothing sinister in what we removed.” No Cancer! Best news. An amazing recovery credited to the fact that I eat healthy, walk everywhere and truly rested after my operation. I hadn’t even been worrying about the pathology outcome, oddly enough, and I feel like that must have been the work of Jen.

The stitches were all inside and little sticky pieces of tape held the skin together to promote healing. The stickers stayed on for a almost three weeks. They were supposed to just fall off but they didn’t so one of the doctors peeled them off then I used Azulene oil on cotton balls to gently moisten and remove the goo. It worked perfectly (great tip if you’re in the same situation).

A week after that, I ended up back in on emergency with a scarily high fever and severe pain. I was taken off all pain meds as it was suspected, and later determined, to be a drug reaction but the uncertainty and agony was worse than anything I had felt before. I had pain with each breath (so bad I couldn’t cough or sneeze because I couldn’t intake enough air to complete the function). The pain was caused by 100cc of fluid in my right lung so they used a very long needle (longer than the height of an iPhone 4) and they tapped that. It was a difficult procedure to undergo while experiencing a high fever. The night after that procedure, my fever reached 104F (40C) with hard chills and everything was blurry. A priest stood by my bed that night to make sure I was ok and to call a nurse since I was curled up in pain and couldn’t reach the button. I remember nothing from that night except telling the doctor that I couldn’t die because my husband was out of town for work and he’d kill me if I wasn’t here when he got home. That night, ice chips tasted like heaven. Seriously, I’ve eaten some amazing foods but for that moment ice chips eclipsed it all. My liver functions took a dive that night about when my fever seemed to break. For a week, I was jaundiced and resembled a member of the cartoon Simpsons family. I had countless tests done, including having a scope put down into my stomach while again under strong sedation. The entire time, I was being given strong IV antibiotics to ward off any infection that my body might have been battling. I lost 17 pounds.

Through it all, I remembered what my friend and colleague Kyle advised me. He essentially said to picture myself better and doing happy normal things in a few months when I’ve recovered more. But that wasn’t all my colleagues did to encourage me during my recovery. The company I work for set up a web page to accept donations to help us pay for the childcare, pre-made dinners and medical costs we incurred during the six weeks when I was fairly useless. The total raised was a sizeble sum and every penny was used for the right reasons and completely put to good use. Having that financial cushion meant we could focus on my healing in a positive way instead of being stressed about when I’d be able to cook, take care of our son and do grocery shopping again.

I learned a lot from the experience too. Like what is truly essential in the hospital. My hospital essentials include my favorite kitschy gnome zip-pouch with Bia Beauty lip balm, face wash towelettes, eye mask, ear plugs, hair clip. Bia Beauty doesn’t test on animals and is made in Ireland. The pouch is from a shop called Kitsch Kitchen in Amsterdam. The nurses and doctors would come on their rounds to check on me and I was almost always asleep. I never watched TV, I just slept. They asked what sedatives I was being given to which I reminded them that I was just on antibiotics and anti nausea meds. I would also remind them that I had an 18-month at home and wad long overdue to catch up on some sleep.

I tried to stay positive with every fibre of my being. That positivity helped but it really had to because one month of my life was spent either in the hospital or in my bed at home. It was the same month in which my son Liam mastered walking and my Dad took on my role as primary caregiver and head chef. I missed all that. After a month of optimism, can-do cheerfulness, aches and jaundice, I just wanted to be home hugging Liam. By then, my Dad had returned to the States to my wheelchair-bound Mom and his day job so that brought on a whole different set of tears.

Even after I got to return home, I felt out of sorts. It was required that I go to the GP every week for bloodwork to monitor my liver functions. It took ten weeks after the surgery for them to be normal again. Meanwhile, those first days back home were challenging. I couldn’t lift anything heavy, especially LB. Had I forgotten how to be the Mom that does it all? Did LB forget about me? He only visited me in the hospital once or twice a week because I do not want him exposed to the floating germs, chemicals and radiation hospitals inherently have. At one point, I had a radioactive test done so I could only wave at him from six feet away when he visited. That broke my heart and made me feel more alone than if he hadn’t come at all. Six weeks after the surgery, I could lift LB a little but without bending. Ten weeks after the surgery, I could lift him fully but got tired from it quickly. I’m still building my Mommy stamina back up, but he is being patient with me and giving me extra hugs to keep me motivated.

But this post isn’t about the hardship, it’s not even about the feeling that Spring happened without me, this post is about how some days are answers and others are questions. My Mom once told me that when I was unemployed and single and feeling a bit confused how I fit into the world. Well, the first half of 2013 has certainly been more of a question, but I am hopeful (ahem, determined) that the latter half of this year will be an answer! So, let the days roll on and may I be able to enjoy them more fully now.

If you’ve read this far, thank you. It was a difficult and deeply personal post to write, but I hope to help inform others about to undergo this surgery.