Kirsty's story: Staying positive
The most important thing I would say that has helped me is to remain positive and not think too far into the future. I’ve been very grateful that I’ve been able to work from home so I have a full-time job, keep my income. I also live close to my family so have been able to rely on them to get my shopping and medication.
Sophie's story: At home with a three-month-old baby
I have autoimmune hepatitis and have done for the last eight years. I am on immunosuppressants so decided to start self-isolating since before the Government suggested.
I have been self-isolating since 14th March with my three month old baby.
It has been very difficult as since he’s been born I’ve tried to get out with him to see family, shopping, or to baby groups once a day but now we have to entertain ourselves!
Lots of sensory play, online baby groups, time in the garden and singing.
Even though I miss the outside world, I know that mine, and especially my baby’s health, are more important.
I’m making sure I’m cooking lots of healthy meals and resting lots to help with my condition. It has been nice being able to spend lots of quality time with my baby but very difficult not being able to see family and friends, especially when they are trying to get to know him.
Even though I miss the outside world I know that mine and especially my baby’s health are more important. I am a member of a Facebook group for autoimmune hepatitis and the support from the members has really helped me get through this tough time.
Adam's Story: I'm starting to worry about the 'what ifs'
I was coping quite well at first keeping myself well but now the worry and anxiety have crept in and I’m worried about the ‘what ifs’.
I’m lucky I have a partner who is on top of things like shopping and picking up meds. But it’s when she comes in from outside, I start to worry most about catching the virus. It scares me more than I can say.
People where I live just are acting like it’s a holiday and mixing with each other, not thinking of the bigger picture.
Fingers crossed that the COVID-19 virus goes sooner rather than later.
I bought an album by a band called James – it’s called Living in extraordinary times and it could not be truer than that ‘the sooner this is over the better’ as this isn’t doing my mental health any good at all.
I feel for others in the same predicament as myself. I was lucky that I had a hospital appointment in March at Queen Elizabeth Hospital for my bloods done and my blood count is going up and my tac result was 4.6 which is good for me so I know they’re alright.
Fingers crossed that the COVID-19 virus goes sooner rather than later.
Diana's story: GB Transplant Team cyclist
My care is mostly stable so I am lucky, but my consultant is on hand by phone and email if needed – I have the most amazing care team. The first week at home I found really hard. I cried most of it at the thought of not being able to go out or see my family.
I am part of the GB Transplant Cycling team and have traveled all over the world winning loads of medals.
Before lockdown I used to ride my bike about three or four times a week. As you can imagine, I’m finding it really hard not to be doing that now as I find it’s really good for my mental well being.
I have now set up a turbo trainer in my kitchen with my bike on which I am doing most days. I have also started doing yoga via YouTube which I am also finding really good.
We will get through this and come out stronger, I’m sure. You are not alone. Stay well, stay safe.
Staying away from my family is so hard as I have just had my first grandchild who I miss so much. I am sticking to a healthy diet and my usual three meals a day. I’ve been doing my hair and makeup a few times a week which also makes me feel so much better. I need to stay positive and look after my gift of life for my donor.
I have been through much harder stuff my transplant for a start so I will come out of this as long as I stay safe and do as I have been advised. I don’t listen to endless news just the once daily update again staying away from too much negativity. So after two weeks of isolation I’m feeling ok.
Stay positive and smile, keep in touch with friends if you can via FaceTime. We will get through this and come out stronger, I’m sure. You are not alone. Stay well, stay safe.
Adam's story: Keep clapping our NHS
Life in lockdown for me is one of mixed feelings. I had a liver transplant in August 2019 and so I am no stranger to spending time on my own, after the week of recovery at home. This however, is a little different.
My own space has been invaded! Not by the cat, but by the wife and the children. Thankfully we have plenty of things these days to entertain us.
Millions of hours of stuff to watch on Netflix, iPlayer, Amazon Prime. Boxsets to binge on, or my favourite, watching endless episodes of 24 Hours in A&E (You would think I’d be sick of hospitals by now!).
Keep clapping everyone, and keep on making us safe, NHS!
The house has never been cleaner. Walls have been painted where we have the paint, as buying paint from DIY stores is not seen as essential – they must be kicking themselves in the money they are losing!
Staying at home is great. Time to reflect and watch others pass by the window on their daily exercise slot. But then the sadness as we watch this terrible virus sweep across our communities seemingly picking people off one by one.
The good side? Of course there is. People’s awareness of the absolute commitment, professionalism and care shown by our amazing NHS! Keep clapping everyone, and keep on making us safe, NHS!
Lani's story: A rollercoaster of emotions
My name is Lani and I’m 27. I was born with Biliary Atresia. Because of this (at 11 months old) I had a living related liver transplant (my dad was the first living related father donar in the UK.)
I have had some complications, but since having a splenorenal shunt in primary school I have been very well.
Because of Covid-19 I am shielding for 12 weeks (if not more). I have an eight-year-old son and he has had to go and live with his dad for the foreseeable, so as not to pass anything onto me.
This was an extremely difficult decision for me but to be around for him for the future I have to make this sacrifice now.
I do believe if we all stick together and support each other we will come through this stronger.
So far isolation on my own has been a roller coaster of emotions and I’m sure that’s only the beginning. This is the first time in as long as I can remember my health has really made me worry about my future and also made me feel vulnerable and “different” from my peers who are still out and about shopping etc.
This is a hugely worrying time for anyone with an underlying condition but I do believe if we all stick together and support each other we will come through this stronger and more appreciative than ever. Much love to everyone else out there who is worried at this uncertain time. Stay safe and be happy.
Cliff's story: The extra stress isn't helping but I'm in good spirits
I got a letter from the NHS saying I must stay at home for 12 weeks from 2nd April 2020 because I take azathioprine for my autoimmune hepatitis condition. I informed my employer and only get Statutory Sick Pay.
Today I’ve chopped up 10 bulbs of garlic and put in a jar in the fridge (in oil and with salt). Got a new deal on my mortgage. I registered with Gov.uk so hopefully get priority on home deliveries of shopping as I’m starting to run out of fruit, vegetables, milk and bread. I also registered with Boots but waiting for confirmation.
All the extra stress of no work, no income and the very real threat on Covid-19 isn’t helping but I am in good spirits for the time being.
I’ve been trying to buy a blood pressure monitor and an ear thermometer without luck. No one seems to have stock. AiH has caused me cirrhosis, atrophy of segment 4 plus portal hypertension. All the extra stress of no work, no income and the very real threat on Covid-19 isn’t helping but I am in good spirits for the time being.
Valerie's story: Staying active
It is five years now since I had two liver transplants within five days. This puts me in the ‘extremely vulnerable’ group if I were to catch Covid-19 and I have been advised to stay home.
This means I have had to stop working. I work on the checkouts in a busy supermarket, not an ideal place to be!
I usually live with my two daughters. Robyn is a hairdresser, her salon has closed so she is staying home. Leah works in a pharmacy and has gone to stay with her boyfriend to reduce the risk of bringing this illness home to me.
I have been lucky to get this extra time to spend and I still intend to make the most of it.
We do not like this situation! We have always got through everything together. I find it all very upsetting. So how am I coping with this very strange time?
I just keep myself extremely busy. You can mainly find me in the garden, raking and laying fresh gravel, jetwashing, weeding and eventually I will be sorting out all my lovely pots! I am also doing Joe Wicks’ PE lesson on YouTube every day and I’m lucky to have fields very near to the back of my house so I can get an isolated walk. That helps me a lot.
I am exhausted by the end of the day! Thanks to my two donors, I have been lucky to get this extra time to spend and I still intend to make the most of it, even if I am restricted in where I can go. My advice is to stay active.
I also continue to write my blog if you fancy a read – www.mylovelyliver.co.uk
Lou's story: Every issue feels like climbing a mountain
Social distancing is tough, isn’t it? My mental strength has evaporated and every issue feels like climbing a mountain, from the difficulty of getting a blood test to having to travel to London for my haematology medication.
The hardest thing is the lack of physical contact, I like meeting the consultants to talk through my issues. Telephone appointments are quick and impersonal, so I forget to mention issues like my itchy skin and tiredness.
Even my new stay at home life can feel mentally challenging. Take food shopping. My husband shops for us and always has to queue to get into the supermarket, then can’t get everything we need. Being vegetarian can be tough as some fruit and veg will always be out of stock. And who is buying all the eggs?
Social media has opened up virtual doors to help me communicate and learn new skills.
But there are positives. Social media has opened up virtual doors to help me communicate and learn new skills. It has allowed me to:
- Engage with people on sites like HealthUnlocked and catch up with friends on WhatsApp. We have more time to chat.
- Use Pinterest and food websites to find meals I can make with the food available. Being stuck at home has given me the time to learn to cook more and I love it.
- Keep exercising. YouTube is crammed with free classes, on everything from ballet to yoga, which has let me have some ‘me time’ to exercise everyday.
- I have found that planning one or two achievable activities each day helps me stay positive.
Millie's story: Getting into a routine
Each day I’m setting myself little goals which are easily achievable. For example getting up dressed washed etc, keeping a routine really has helped me!
Gareth's story: I'm focussing on my achievements
As a liver transplant recipient since July 2019, the isolation lockdown is proving thought provoking, reflective, featuring flashes of fear, realism and high emotion.
Listening to the authorities, my coaches, my consultants – communicating with British Liver Trust and my “Liver friends!“ – I’m enjoying the chat, the union, the bonding, being there for each other!
I’ve had a rather rude awakening around the severity of my condition and situation, but am looking at the positive. Before the lockdown I engaged in several social activities… singing group, writing projects and I managed to get cast in an upcoming Production of Wizard Of Oz! All these having to be put on hold – but are furnishing me with hope, ambition and the sound knowledge that my dreams await.
My reflection allows me to look back at my achievements since transplant. The major one – marrying my wonderful husband in a festive wedding in December just days after being released from hospital with aggressive liver rejection. Surely a sign that us liver patients can achieve anything.
Communication is key right now, as is laughter.
I take comfort in my fantastic friends who consistently keep me on the up. I like to think I play a similar part for them too. There is much pleasure around. Teasing and giggling with my Mam remains priority! Communication is key right now, as is laughter…. coupled with the knowledge and trust that we can all get through this.
Attempting to take on board the sadness of all that is happening but at the same time thrive on survival, hope, love and the future that we have all worked so hard for. For those awaiting or received transplant or who are travelling through any liver disease at this extra-tricky time, never feel alone.
British Liver Trust is an excellent support – I’m never shy in heading there! Let’s all keep strong and keep smiling! We’ve got through so much, we can get through this ! My lifelines: share stories happy and sad, take time out, invent a routine no matter how off the wall or random it seems, observe others’ efforts and challenges and achievements, allow the reflective moments, reason with the fear and adapt the best way possible! And be safe!
Update 25th June 2020: While in lockdown, Gareth produced this short film, which he hopes will help to raise people’s spirits.
Chris' story: Anticipation pays off
Sometimes anticipation pays off and it certainly did in my case.
Being near to an anticipated lock down I moved from rural Stamford and my view of an historic graveyard to Thorpe Bay in Essex and the nearby seaside – not that it makes much real difference when you are in that high risk 1 per cent.
At least I have a garden to sit in, but forgot my sunglasses. No worries.
Eating well, exercising as much as possible. Just cannot get the sleep pattern right, maybe due to constant media. Turn it off from time to time – trust me it helps. Stay well.
Gill's story: I'm finding life exceedingly difficult
I have got Caroli’s Disease and had half of my liver removed in September 2017. I also have several other chronic illnesses including Type 2 diabetes.
I am also severely disabled so cannot get out of the house on my own and am recently widowed so finding life exceedingly difficult.
I am seriously concerned about my mental health.
I am very lonely and suffering from lack of fresh air and change of scene as I cannot even go into the garden. I would say that I was keeping safe and probably physically healthy but I am seriously concerned about my mental health which no government ministers seem to have talked about at all.
Sian's story: Exercising at home
Life in isolation has been challenging – not only on my mental health, but physically!
The feelings of loneliness and anxiety kick in straight away, this is followed by a sense of worry due to not knowing what the future holds.
I have always been a outdoors person, going out for walks have always been my method of exercise.
Due to being self-isolated, I have been pushing myself to work out at home.
Working out from home has helped my mental health.
This has been difficult as I suffer from chronic pain (due to lupus), I have found that working out from home has helped my mental health and helped me push myself through the pain while working out.
Michael and Carole's story: Shopping and cleaning
My hubby is high risk due to his liver transplant eight years ago. I am over 70.
We cannot get a home delivery anywhere.
We have had a couple of emails saying we have been identified as vulnerable but when I try to get home deliveries it says “not recognised as vulnerable”.
We cannot get a home delivery anywhere.
I am having to take the chance and go shopping. When I get back wipe everything with anti bac, take off all my clothes and wash them.
Now we have the cleanest, neatest, tidiest house and gardens in the world!
Olivia's story: Training to be a nurse
I’m a qualified nurse and I started a new job a few months ago but unfortunately I had to go home because of the the new Government guidelines.
Patricia's story: the guilty pleasure of securing a delivery slot
It wasn’t until the NHS letter arrived that it really hit me as to how seriously this virus could affect me. Reading the words in black and white made it a stark reality and I must admit I cried.
My whole life was on hold again and all the fears, anxiety and emotions felt whilst waiting for my transplant came flooding back. My transplant was in October 2019, so my respite seemed very short lived and all of the plans I had been making during my recovery, were once again a wish list for the future.
The first weeks of “Isolation” were full of anxiety, my husband and son were respectively still in work and college. Both frightened about bringing the virus home to me. I tried to portray a strong calm front for them both, guess I played that part well, as my teenage son thought I was not taking matters seriously enough!
I greatly appreciate the little gestures of thoughtfulness
Now they’re both home and their time outside limited. Which suddenly, makes a four bedroom house, seem very small. Time actually alone is difficult to achieve. Time spent in the garden whilst the sunshine is a God send. The days of the week are insignificant and drift by.
I try to avoid the news, particularly that on the internet as so much is false and scaremongering.
My daily routine is mainly filled by the domestic chores, a little gardening and lots of time on social media. Talking to friends and family, contacting people I haven’t heard of in a while to find out if their ok. I surprisingly find through doing this I worry less about myself and more of others.
I think my “routine” will change as the days pass by, some things will become more important than others. I greatly appreciate the little gestures of thoughtfulness I’m given; garden flowers left on my doorstep by a neighbour, a card left by a friend. The guilty pleasure of securing an online delivery slot!
But most of all ringing my “Cow Bell” loudly for the NHS on a Thursday evening.
Sue's story: Walking 125-miles around her house
I have autoimmune hepatitis so it came as no surprise to learn that I was one of the 1.5m “extremely clinically vulnerable” people.
My husband and I decided that to keep our fitness levels up during our 12-week-at-least lockdown, we would continue with gym exercises and pilates at home and also do a daily walk around the outside of our house … and that idea developed into something bigger!
We wanted to do something in whatever way we could for the Norfolk and Norwich Hospital and particularly for the Consultant Hepatologist and his team who’ve looked after me since 2011.
We set ourselves the challenge of each walking from Holt, Norfolk to Oxted, Surrey by walking around the outside of our house
We set ourselves the challenge of each walking the equivalent mileage of the journey from Holt, Norfolk to Oxted, Surrey for a virtual visit to Simon’s mother … by walking around the outside of our house, which we thought would be about 5,000 or more circuits.
We began walking on 17th April and completed our challenge on 24th May, completing the 125 miles in 48 days, and 330,582 steps.
Depending on when our lockdown ends or when the trainers wear out, we might even attempt the return trip or, at least, a virtual walk from Holt to the Hospital to hand over the money.