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Yes, this is still Jemima’s blog where I talk about nails and nail polishes… well mostly! If you’ve been following me on Instagram, you probably remember that last year, I had a lobectomy, a surgery to remove a part of my lung. It was the last resort to possibly end my fight against a lung disease called Bronchiectasis, which I’ve been suffering from for years. The day before yesterday (4/22) marks the one year anniversary of the surgery, and I’d like to put my experience into words. It’s mostly for myself, to see how much I’ve been through. Now that I’m at the end of the tunnel, I want to be able to remember the whole journey and be thankful for my current healthy self. Another humble wish is, maybe this would help someone who is in a similar situation, to know that they are not alone, to know what to expect, and to not lose faith in recovering. So if you’re only here for pretty polishes, feel free to skip this post. No hard feelings! But if you want to hear my story, you’re welcome to read on!
Before we start, rest assure that there will be no jump scare of graphic images in this post. I don’t even think I kept any except for the pictures of my severed lung, which I won’t be showing. Picture of my wound will only be shown after a warning. So you can safely scroll through this post without seeing anything gory. Also, a disclaimer, I’m not a medical professional, I’m just sharing my own experiences. Some medical terminologies I use may not be 100% accurate, nor should you take this article as a medical advice. This will be a long article. If you’re ready, let’s take a time machine back to 2017.
How It All Started
Back in 2017, I can’t remember which month it was, when I was working for a PR agency, I got a total health check as a company’s welfare. The results came back saying that I have “pulmonary fibrosis”, which, simply put, is when the soft tissues of the lung are replaced by hard scar tissues, resulting in the lung losing its proper function to expand. Thinking back now, I think that the problem has already been there long before the health check. I’ve been coughing a lot, often with phlegm, since as early as 2013-14. For the longest time, I’ve attributed it to having a sensitive windpipe. Plus, I’ve been having chronic nasal sinusitis since I was young, so those phlegms are no strangers to me, and I didn’t take it too seriously. That health check report was the first thing that alert me to a lung problem.
After following up with a chest doctor, I found out that I have Bronchiectasis, which means that my airways are permanently damaged, widen and scarred, making the lung more susceptible to infections, leading to a buildup of excess mucus. Since the airways cannot function very well, that means those mucus will very likely get stuck in the lung, causing even more infections. 🫁 Although the exact cause remains unknown, like 40% of the cases are, my longterm respiratory disease certainly didn’t help.
So it begins, my life living with Bronchiectasis.
🫁
– what I would say when people ask me what happened with my lung
“Imagine the lung as a sponge, when we inhale, the sponge will expand, letting the air in. But now instead of a soft sponge, part of my lung became more like a scouring pad, that’s rougher and full of larger holes. The bacterias can come in easily, but my lung can’t squeeze them out because it is not soft and expandable anymore.
First Time Hospitalized
Pulmonary fibrosis is irreversible, so my treatment plan has always focused on getting the mucus out while killing all bacteria in my lungs to prevent more infections. In the first few years after my diagnose, I’ve been on and off antibiotics. During that time, chronic nasal sinusitis is still a big problem in my life; I’ve had to get nasal polypectomy twice, once in 2019 and once in 2021.👃 That’s a story for another time, but since the whole respiratory system is interconnected, it has become one of the reasons why the lung infection never seems to be resolved.
In March 2018, I’ve been hospitalized twice in a month for pneumonia, for a total of 10 days. I remember asking my doctor, as a joke, if the hospital has a stay-10-get-1-night-free policy. I even started a packing list on my phone for everything that will make living in the hospital bed as comfortable as possible. In between the two hospitalizations, my doctor ran a pulmonary function test on me, and literally told me that my pulmonary function was equivalent to an 80 year old. Little did I know, this was far from the worst I can get.
👃
Chronic nasal sinusitis is hereditary in my family. Sinus is a (4 pairs of to be exact) small compartment around the nose area that will warm up the air as it flows through our nostrils. When we’re sick, the opening of the sinus tend to swell, blocking the mucus inside. For people with Chronic Sinusitis, the swelling would be hard to subside, and may even turn into nasal polyp (extra tissue in the nose) that would require surgical removal.
When Coughing Out Blood Became “Normal”
Some time in 2021, I accidentally discovered that I may have a rare autoimmune disease. The treatment involves taking some immunosuppressive medications for a long period of time. After a while, the medications started to take a toll on my lung health, as my suppressed immune system can no longer keep the lung infections contained.
On one winter night, I was lying in bed ready to sleep. Coughing has been a part of my life for so long, and the day was no different from the others. All of a sudden, in the dark, I saw myself coughing out sputum that has stained my duvet cover black. It was blood. At that time, I didn’t put two and two together, and thought it was my stomach bleeding. I was terrified, thinking that I might be dying, because how can you not go there when you’re spitting out blood? So my dad rushed me to the ER, and it turned out that it was my lungs bleeding due to severe coughing. The ER doctor said that this was a common symptom of Bronchiectasis. With the lung damaged, the capillaries are more exposed, sitting side-by-side the airways, making them more likely to burst when hit with pressure caused by coughing or even strenuous exercise. From then on, I was not allowed to lift any heavy objects. Hemostatic drug has since became a staple in my drug cabinet.
On a lighter note, I wore this polish to the doctor’s appointment one day and got sort of a compliment! This is “Mahalo!”, EDK Nail Polish’s offering in PPU February 2021. My doctor saw my nails and gasped “It’s purple!”. Something random I remember for some reason.
Those two years before getting the lobectomy has been very difficult for me both physically and mentally, even spiritually at times. I know that I’ll have to live with this condition for the rest of my life, but I hate the thought of having to compromise things in my life because of it. There are so many things I wanted to do, like getting more involved in swatching and content creating, taking French lessons, going out with friends. But I only have so much time, and my body needs me to exercise, rest, and spend 10-15 minutes every day before bed doing percussion to help coughing out the mucus. So for the longest time, I’ve been having this resentment, thinking about what I’ve already had to do to keep this illness under control, and wondering how much more I’ll have to sacrifice for it. I’m not even doing a good job controlling it, why can’t I just give up? Sometimes I resent God (I’m a christian) for making me go through this, asking Him if he doesn’t love me enough to heal me. Is there anything I did wrong? Did I not have enough faith in Him when I pray? I was also disappointed in myself, for not being tough and strong enough to pull through. I would blame myself for still not making peace with the illness after all the years of having it.
But Wait! It Gets Progressively Worse!
At the end of July 2022, I woke up one day with minor chest pain. It was no news to me. I knew it was pleurisy, which is the inflammation of the mucosa around the lung and in between the ribs. There are a lot of nerves in the area so it could hurt badly with every breath. I’ve had Pleurisy before, causing by pneumonia, so I thought I’ll just continue to take antibiotics and wait until my next scheduled appointment in two days. But I was wrong. The pain got so much worse the next two days. It turns out that the pneumonia became too serious for the oral antibiotics to work in time. I was once again admitted to the hospital in order to get antibiotics through IV drip.
Life in the ward was bleak and boring. Every time I was admitted, I had to stay for at least a week; that’s how long a session of antibiotic takes. It’s a 3 hours per round, 4 rounds per day cycle. So I had to spend 12 hours a day hooked on a machine. All of the plans in my life had to be put on hold, including some of my swatching gigs. I missed the chance to swatch this polish (Shine Bright Like a Seashell) for DRK Nails before August 2022 PPU because the package arrived when I was in the hospital. In the grand scheme of things, this seems nothing. But having to pause my life with little to no warning ahead was still very annoying.
In less than 6 months, I was hospitalized again. This time, it happened right before the end of Lunar New Year holiday. I knew something was wrong when I couldn’t stop coughing out blood, and the hemostatic drugs didn’t help. I was struggling to breathe that night, because my lung was filled with fluid, to a point that I can barely finish a sentence without catching my breath. My blood oxygen level dropped to 86% (a normal person should be at least 98%), and I was given oxygen immediately in the ER. During the first few days in the hospital, even with antibiotic IV, I was still coughing out blood. It was the most blood I’ve seen in my life, I had to cough them into a plastic bag because paper towels can no longer absorb everything. I couldn’t sleep lying down, for the blood will flow out of the airways, making me want to cough again. It was one of if not the most scary nights of my life. My sister held my hand and prayed for me in the middle of the night, while we were both crying out of fear.
At this point, I was nearly unable to get off oral antibiotics. Every time I finished a session, mucus started to build up after a week. The doctor tried several times to switch my meds from oral to inhaled with no luck. In those years, the germ living in my lung has always been Pseudomonas aeruginosa. It’s a bacteria known to produce lots of thick and green mucus, and there are only a handful of antibiotics that would work against it. The silver lining in all of this is that, despite continuously taking so many antibiotics, the germs in my body never actually developed resistance. However, it is unrealistic to take antibiotics for the rest of my life. Not only would it affect other aspect of my health, but we will also risk creating a superbug when it eventually developed resistance. That’s when my doctor and I had the talk of going through surgery.
Bye Bye Lower Left Lung
Do you know that each person has 5 lobes of lung? Three on the right side, two on the left. I’ve only learned about this because of my illness, and am pleasantly surprised by how accurate the lung emojis are. Most of my lower left lung (the circled part) has fibrosis; it has became a permanent housing area for them bacterias. At this stage, taking antibiotics is only a reactive approach, keeping the infection manageable, but there’s no hope for the condition to actually improve. Cutting the whole part out of my body is the next proactive approach to fix the problem once and for all.
Good news is that the fibrosis is almost all located in my lower left lung, so by removing the part, there is a very good chance of putting an end to my pneumonia. However, the bad news is, since the whole lobe is comprised, the surgeon will likely have to make a large incision and cut one or two ribs to get the lung out. Nowadays, Video-Assisted Thoracoscopic Surgery (VATS) are used to perform most lobectomy. It only requires 1-3 small (1 cm) incisions to operate. But because the lobe with fibrosis are hard and inflexible, we will still need a big enough incision to take the whole thing out. That could make the recovery more painful and long. I was a little bit nervous when talking to the surgeon for the first time, but he was very kind, patient, and professional. He mentioned that in cases of Bronchiectasis, a lobectomy is not often considered because they want to avoid invasive approach as much as possible. But in my case, the lower left lung is basically useless at this point, the surgery will not have much negative effect on my pulmonary function (it couldn’t get any worse). Keeping the lung will cause more harm than good. Since I was still young, I will be able to recover from the surgery quickly. He explained the procedure to us clearly; that gave us a lot of reassurance. So we’ve decided to go for it.
It was winter time when I first talked to the surgeon. My chest doctor suggested that I wait until spring or summer to do the surgery, because winter is the peak for several epidemic diseases, the ward will be more chaotic. In hope of easing my discomfort before the surgery, we tried using bronchoscopy to flush out the mucus. My first experience with bronchoscopy was… eye-opening, for lack of a better term. The doctors put a tube through my nose, down my throat, into my lungs. Then they push several rounds of saline into the lungs to flush out the mucus. Saying it’s uncomfortable is an understatement. Although we have a machine that was sucking out the fluids as they’re being flushed out, there’s just too much too quick, I had to spit a lot of them out because my mouth couldn’t contain them anymore. So there I was, lying in the examine table, with saline and mucus pouring out of my mouth onto my neck and hair. (💡Pro Tip: Bring a shower cap! So you won’t need to wash your hair in the hospital sink. That’s what I did the second time around.) I can’t imagine how horrifying the scene must be. All the fluids and the tube down my throat makes me want to cough, but I had to hold it to best of my ability so the doctors can work. The whole procedure took maybe less than 15 minutes, but it felt like a century. Fortunately, after that, I felt my breathing improved significantly. It feels good being able to take a deep breath in, even for just a few weeks. In about a month, I had to go through it again. The second time did not bring as much of a relief as the first time. That’s when I knew it’s time for the surgery.
The Big Day
April 21st, 2024, I packed my essentials and checked into the hospital, prepping for surgery. The surgery was quick, quicker than I expected. April 22nd, I went in at 7:20 in the morning, and came out into the recovery room at around 10:50. It wasn’t my first experience with OR, so I wasn’t extremely nervous. The OR was very cold, that’s why I paid extra ahead of time for heating pads. Highly recommended if you have health insurance to cover them. The surgeon went in from the left side of my chest, making a 5-cm incision right below my left armpit. As expected, the surgeon did have to cut my rib, so we anticipated a lot of pain during recovery. Therefore we opted in for extra pain meds on demand after the surgery. However, I think the pain meds made me nauseous for some reasons, so I didn’t use it as much. Luckily, the pain was still bearable with the help of oral pain killers.
On the next day, I was able to get the urine catheter off the next day. However, that night, I started to feel a lot of pain around the area of the wound. It’s not the pain from the wound itself, but more like a muscle strain. It hurt with every movement and breath. The doctor said that it was subcutaneous emphysema, where there’s some air buildup under the skin. They told me that the pain will resolve when my body absorbed the air bubbles, and it did eventually got better in the next two days. At the time, there was a catheter coming out from the wound, draining excess fluid from the cavity. The surgeon took it out so I can feel more comfortable. He put some gels on my wound, which felt warm at first. After cooling down, they solidified into a dried glue texture that became water-proof. It will later peel-off naturally after a month or so. During the days in the hospital, I was given oxygen because my breath was still shallow due to the pain. So when I was discharged on the 4th day, we rented an oxygen generator to use at home, which I didn’t eventually need. The first two weeks after the surgery, I’ve recovering much netter than expected. I was already back to work the second week. The only thing that reminds me I’ve just had a surgery was the pain from the wound. The surgeon taught me to hold a pillow or a stuff animal when I cough to stabilize the wound, so that I wouldn’t feel so much pain. With the help of oral pain killers, I was feeling much better every day than the day before. Everything seems to be doing well. Just when I thought I can finally put everything behind me, my body decided to give me one last kick in the butt.
It’s Always Darkest Before Dawn
Two weeks after discharged, I started suffering from urticaria. It’s like my immune system was asleep for the past two weeks, and only suddenly felt the absence of part of my organ then started freaking out. Every inch of my skin, from the scalp to the bottom of my feet, would burst out itching from time to time, and swelled when scratched. Although it got much better after some antihistamine, I still need to take the meds to this day, until there’s no outburst for at least 6 months.
That’s only the tip of the iceberg. On May 11th, I was admitted to the hospital again for having fever for two days. The chest doctor suspected an infection, so she put me on antibiotic while performing a lot of exams trying to figure out what happened. I was experiencing extreme fatigue, with little appetite for a week. At one point, they had to give me blood transfusion because my hemoglobin level is dropping. It wasn’t until the 19th when the doctor was able to confirm through cardio echo that I had pericardial effusion (fluid accumulation between the heart and the film around it called the pericardium). It was rare complication, but the antibiotic is working. This time I stayed in the hospital for a whole two weeks, the longest I’ve ever stayed, to a point that I almost started getting used to living in the ward.
The End of an Era That Will Not Be Missed
Fast forward to the present day. Earlier this month, I went to see my ENT doctor for a minor cold, and the bacterial culture shows that this time, it finally wasn’t Ps. aeruginosa, the bacteria that’s been haunting me for so long. This Monday, I went back into the chest department for another check up as I always do every other month post surgery. The chest doctor said that my chest x-ray looks even better than the last one from September last year. The upper left lung has since expanded more and more, in order to make up for the space of the lower left lung. (Isn’t it amazing how our body was built?) I left the hospital that day with no appointment scheduled for the chest department. It’s the first since 2021.
I feel very grateful for all the doctors I’ve had over the years: the ENT doctor who I’ve been seeing since I was a child, the chest doctor who has been tending to my lung with great care for 8 years, the thoracic surgeon who performed the surgery with proficiency, and all the other healthcare professionals I’ve encountered along the way. I’ve left out a lot of details, but they truly did so much for me. After all, I’ve been in treatment for 8 years. This would be a 10 hour read if I kept everything in. I’m also fortunate enough to be born in Taiwan, a place with good healthcare system and universal healthcare. I probably couldn’t afford all the treatment if it weren’t for the aid. But most of all, I’m grateful for my family, my dad and the numerous times he had to drove me to the hospital late at night, my mom and all the care she gave me trying to keep me healthy, and my sister and all the nights and days she spent in the hospital ward with me. Thank God I have them, or else I wouldn’t be alive to tell the tale.
I’d be lying if I said that I wouldn’t wish to not have had to live through all of this, and I still have no answer as to why God allows me to suffer. But the mere fact that I’ve pulled through, tells me how strong He has made me to be. Looking back at it now, all the suffering seems very far away. I even had to look through my medical records for some details. Instead, it was the funny moments that stuck out. Like the time I got recognized in the ER by a resident who was working in the ward the first time I was admitted for pneumonia. He said that the reason why he remembered me, even after two years, is because of my nails; he remembered that I do nail arts, and recognized me for my painted nails. And the time my sister and I had McDonalds for breakfast, and were blessed with 12 extra nuggets. Bronchiectasis is still with me; my remaining lungs are not 100% healthy. What I need to do now is to keep myself healthy and my body strong. I do hope that this is the closing chapter, and that I won’t need to update you for years to come.
Thank you for making it this far! If you have any questions, welcome to leave them in the comments. I will be happy to share my experiences with you. If you somehow stumble upon this post without following me, welcome! You’re free to stay, just know that I usually post things about nail polishes, and not… this. Also, if you’ve enjoyed my articles and want to support my writing, consider clicking the yellow button below to buy me a cup of coffee. That’s it for today! I’ll see you in the next post.
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