11 of the Toughest Liver Failure Symptoms
Being told that my liver is failing and that I would need yet another liver transplant at the age of 22 years was definitely not what I had in mind for my future. In two years I would finally get the infamous call for what turned out to be a successful liver transplant. Here are 11 of the worst symptoms I experienced while waiting.
The jaundice is the very first symptom that I experienced in the early summer of 2013. Growing up, I was always told by both of my parents to regularly check the whites of my eyes for the obvious signs of jaundice, as that’s the easiest thing for me to spot since I have olive skin. The day I realized that the whites of my eyes were yellow I was applying eye shadow in preparation to go to a job interview that morning. This was the most obvious feature about my appearance, and I hated it. I was already self-conscious of my failing liver and to be stared at by strangers like some sort of carnival novelty didn’t help my self-esteem at all.
2. Pale Stools
This symptom was more of a surprise than the jaundice, given that the last time I experienced symptoms of liver failure was when I was a few weeks old and was spotted during a regular nappy change by my already anxious mother. This symptom didn’t necessarily hurt me, but it didn’t mean that it didn’t worry me. And for a 22-year-old, I found it embarrassing having to tell my dad and doctor about it whenever it happened.
Everybody gets a little tired every now and then. It’s a normal human feeling after a hard days work or a bad nights sleep. But in my case, the tiredness was as if I had worked a whole month of night shifts — with a hangover in tow.
Everything tired me out with little or no effort whatsoever. Climbing up stairs felt like I was carrying a leaded jacket up Mount Everest, and I’d have to sit down before I’d pass out. I was told regularly by friends who didn’t know any better to have a better sleep schedule, eat more fruit and vegetables, and even to do gentle exercise. This annoyed me more than anything because I felt as though I was being stigmatized as just a “lazy” person who was making excuses.
Puritus (or more commonly known as “constant itch”) was the bane of my life. At first I thought that I just had a particularly bad flare-up of eczema, but I realized it was getting worse and worse. I just couldn’t stop myself from scratching, not even when I was asleep. Most mornings I would wake up in my bed and I’d have to physically peel my bed sheets off my feet, which caused them to blister and bleed.
I stopped using all of my usual bubble baths, body butters, perfumes, etc., and I even switched my washing detergent — but to no avail. The only thing that I found helpful was to completely soak both of my hands and feet in freezing cold ice water, but even that wouldn’t help after I took them back out and patted them dry. My hands and feet became chapped, red. and raw because of this method. Tubbing eczema cream helped with the chapping, but within a few minutes I would find myself itching profusely once again. A normal day for me was me trying to stop the itching and eventually crying hysterically.
Out of all of my horrible symptoms of my liver failure, menorrhagia was just the worst of all.
Menorrhagia is another term for “uncontrollable menstrual bleeding” whenever my period came around, and I was always left feeling degraded and hugely embarrassed as a result.
I would go through two whole packs of heavy flow sanitary pads within hours of putting on a fresh pad. I couldn’t move without a red waterfall happening, and it ruined a lot of my pants and underwear.
Each time my period came around, it would always mean that I’d end up in the emergency room that same day. At one point I thought that I was actually having a miscarriage (I wasn’t).
Thankfully, I had a team of nurses, both male and female, who understood my medical background, and they always talked to me if I had any concerns or worries. My menorrhagia meant that I was passing a huge amount of blood, and I was also passing blood clots. Some were small, but some came out as big a 50 pence coin and this made me severely anaemic. I remember looking into a bathroom mirror in my bathroom and thinking, “Is that really me?” because I was so so pale.
Headaches I’m used to. I can usually just drink a lot of water, sleep a lot, and my headache would be gone. But I had never experienced migraine attacks — until my liver began to fail… and they were the worst.
One migraine episode that I remember was the day before the anniversary of my mother’s passing, and I was looking forward to spending some time with my sisters and going out for a lunch in our mother’s memory. But when the day came to her anniversary, I thought I had a serious illness because my migraine was so strong that I couldn’t lift my head up. I had to actually crawl to my bathroom because it hurt to lift my head up without having the urge to vomit. Crying hurt and breathing hurt. My eyes being open hurt, and two small spoonfuls of headache medicine didn’t help too much either — so I ended up missing the anniversary and spent a full 23 hours asleep instead.
Ascites is a condition that a lot of pre-liver transplant patients get. This condition is an abnormal accumulation of fluid in the stomach area, and it’s very uncomfortable and painful. There were times that my ascites would leave me crying into my pillow because it felt as though somebody had stuck a white hot iron rod inside my stomach. Usually there are two types of treatment: draining of the fluid using something called a stent (like they do for brain surgery and other operations) or a low sodium diet. In my case, my body was too small to undergo a stent and chances were that I wouldn’t be able to lie still because of the pain — and I didn’t eat much salt to began with, so it always ended up with me being taken down to the emergency room and a two weeks stay.
Now, I’m not too sure about other pre-transplant patients and if they have experienced a seizure or two whilst waiting for a liver transplant, but in my case I experienced from two grand mal seizures. Fortunately for me, I was in a safe place. I was at my partner’s house and I was asleep during my episodes. I was completely unaware that I’d had them until I woke up feeling very sore, had a bitten tongue, and generally felt like I had been hit by Mike Tyson in boxing match.
My partner witnessed both of theses episodes as I woke him up and he (thankfully) waited with me until my seizures stopped, dressed me, carried me downstairs, and gently woke me up. He took me to hospital and stayed with me before I was taken to a specialist ward. I’m not epileptic, so these two episodes were my first two ones in my whole life. We have no family history of them so the hospital thought that this was strange, and I was asked both times if my drink had been spiked (it hadn’t). After these seizures, and after I was discharged from hospital, I was understandably very anxious to be alone and I was scared to go to sleep — but thankfully it hasn’t happened since.
You’re already at risk of catching infections and illnesses easily if you’re a transplant patient because of our compromised immune system due to our anti-rejection medications. Because my already failing liver was slowly dying, this meant that every infection, I would catch it within 24 hours. I would often be left with body aches, migraine attacks, a boiling hot temperature, and freezing cold to the point I was shaking. On one occasion I was waiting in a doctor’s office for an appointment for said infection, but I was shaking and aching so much that my dad had to carry me into our doctor’s office. She immediately sent us to the emergency room, which would then mean I would be put into a side room (a room to myself). That room would then be covered in isolation stickers and everyone who visited me had to be dressed head to toe in a yellow hazard apron, gloves, and a face mask.
With everything else that I struggled with from while I was waiting for a new, healthy liver, I was also struggling with frequent nosebleeds. My nosebleeds weren’t ever as serious as my menorrhagia, but that didn’t mean that they were any less scary. Sometimes I would wake up in the morning and find that my nose had bled during the night as my fingers, hands and pillow were spotted, or had left a small puddle of dark, red blood. Other than taking medication for the blood clotting, there wasn’t much else we could do for my nosebleeds except to keep an eye on them — which again meant that I would be scared to go to sleep in case I choked on my blood in the middle of the night.
The other symptom I struggled with was depression. Depression does run in my family, but I hadn’t experienced it up until then. My depression was mostly to do with my worries for myself and my close family. It got to the point where I actually thought that I wouldn’t make it to get the call from my hospital and I started to make plans that no 22-year-old should ever have to do. Thankfully I was referred to a social worker at my hospital who listened to me and made me feel like I wasn’t going “insane,” but explained to me very carefully that how I felt was a normal, human response given the awful situation I was in. I was then given various relaxation techniques to help me along with the fantastic support of my father and my partner.
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