Loredana’s story: “Liver disease can sometimes be overwhelming and you go through so many different emotions”

Loredana was shocked at how quickly her liver damage had progressed. Now, post transplant, her thoughts are with her donor's family and she urges people to always reach out to talk about their feelings. Thank you for sharing your story with us, Loredana

I discovered I had hepatitis B when I went to donate blood. I hadn’t had any symptoms, the only thing I’d felt was a bit tired, which I thought was because of my job. I was in hospitality and the schedule was quite mad and it was really hectic – I mostly worked till two or three in the morning.

I wasn’t given any treatment at first, I was told the viral load was so low that there was no need. But after a follow-up appointment around six months later I was also diagnosed with hepatitis D and cirrhosis. I was told the cirrhosis had mostly been caused by the hepatitis D, the hepatitis B probably wouldn’t have been able to make such a big impact on the liver. The cirrhosis was at an early stage so they would try to keep my liver for as long as possible and recommended that I take Interferon because that would stop the hepatitis B and D from continuing to attack the liver. At this stage my liver was still functioning.

This was a big shock because I’d been told people who have this infection with Hepatitis B, can have a normal life for a long time. They doctors had explained that the very worst-case scenario might be a liver transplant, but that I was very, very far away from that because the viral load was so low.

So I took the Interferon for about a year and a half. It was all right but there were side effects. Some people get depression, but for me it was mostly anxiety and mood changes. I was irritable – everything would annoy me and I had to try really hard not be rude to people, especially at work. The hair loss was the worst – I used to have beautiful hair and after the Interferon I felt like I only had a few hairs left. It’s been years since I stopped the treatment and my hair still hasn’t regenerated. Apart from that there was also some tiredness, but my doctor said that was most likely the cirrhosis.

The liver transplant was no longer a last resort and very far away

Then when I went back home to Romania on holiday I developed complications and ended up in the ER. I woke up one morning and had very big swelling around my eye lids, legs and abdomen. It was very painful. The doctor said I had ascites and needed to stop the Interferon because it wasn’t doing any good and was actually causing more damage. I was given some diuretics to get rid of the fluid and asked if I was on the liver transplant list because my liver was really damaged and the sooner I got a transplant the better. It was no longer a last resort and very far away as I had been told before.  They said I should speak to my doctor when I got back to London.

So I went back to the hospital where I was being treated with the Interferon. They looked at the blood test and agreed about the liver transplant and referred me to King’s College. I asked them if it was because of the Interferon and they said no. Maybe it was the Interferon though because after a couple of weeks without it, my liver was looking much better and regenerating a bit.

I remember crying when the doctor at King’s College spoke to me, but he explained everything very well which was really helpful. He managed to reassure me and told me that everything was going to be OK and that he would look after me. There would be a liver transplant, but the plan would be to delay it as much as possible maybe even for four years. I was on the list for a year and in 2022 I had the transplant. It was really hard because no matter how much you try to stay positive your mind still goes to the worst-case scenario.

I had the option to be matched with a living donor, so the plan was that if they couldn’t find a match for me they would have used my brother’s liver, but you never know what could have happened there. They said they didn’t want to do that unless it was really needed.

I tried to manage as much as possible so left my job in hospitality, got a day job and watched what I ate. I was told drinking alcohol wasn’t a problem because I’d only ever drunk socially, but I gave it up.

My health was all right while I was on the list, I was having blood tests and they were stable, so I just got on with life, but in the last two months before the transplant, my health got worse. King’s College called me to say there was a potential match, but unfortunately there was a problem with the donor liver and they couldn’t use it. While I was at the hospital, they did a blood test which showed that my sodium level was dangerously low so they kept me in. I was discharged after a couple of weeks, but two days later I got bad swelling in my legs and belly so had to go back to hospital and I stayed there for two weeks until I got the transplant.

I was scared, it’s hard for the patient when you have such a bad disease, and for the family too, they were more concerned than I was.

You know the donor liver isn't coming from God, but a person who won't be there any more for their family

When I was told there was a liver that was a match for me, on the one hand I was glad because my health was bad, but at the same time you know that the liver isn’t coming from God, or a living donor, it’s coming from a person who won’t be there any more for their family. It’s hard to be happy about it, it’s more survivor guilt.

The surgeon explained what was going to happen and all the things they needed to do before the surgery such as an X-ray, ECG and blood test and then the lead surgeon came and introduced himself and explained the surgery. He was very professional but also at the same time very helpful and explained it all very well, so when I went into surgery I wasn’t scared at all. He told me he’d been doing this surgery for many, many years and he’d always been successful and that, apart from my liver, I was comparatively healthy and didn’t have any other problems.

So I had the transplant on 7th August and thought I would wake up the same evening, but I woke up the next day around 2pm. They extubated me which was a bit uncomfortable and asked me how I was feeling. I was Ok, there was a bit of pain which I was expecting. I stayed in the ICU for a day and then they moved me to another ICU and then onto the ward. I didn’t have any complications from the surgery. All that I had was a bit of fever on the fourth or fifth day, so they did all the checks and put me on antibiotics and I was all right.

They discharged me on 20th August and at the moment I’m feeling OK. I’m able to walk but not exercise hard, so I go for a walk every evening and try to rest as much as possible.

I was working remotely as a customer service adviser on a three-month contact when I was on the transplant list. They were fairly ok about it, but I’d only been working there for three weeks before I went into hospital so they couldn’t extend my contract, but said I could come back when I was feeling better. I’m now self-employed as a Romanian/English interpreter.

Liver disease can take a toll on your physical and mental health

I would say to anyone in a similar situation to keep fighting, stay positive and always have something to focus on. That’s why I kept on working. I needed to but, on the other hand, if I’d stopped working it would have been even harder because everything would have been about the disease. It’s hard but you will get to the other side.

Also I would advise people to always reach out to someone and talk about the emotions and feelings that they have, it doesn’t have to be their spouse it can be a close friend or a college or even better a professional counsellor. I know it can sometimes be overwhelming and a person that fights a disease like this can go through many different emotions, from anger, to fear or other changes in mood.

This disease like any other can take a toll not only on your physical health but also on your mental health, so please discuss with your medical team ways to cope with it. This country’s health system has many options available, such as support groups or counselling services.

I want to write a letter to the family of the donor, but it’s so hard to find the words…

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