My first time writing here. Day 71 of my daughter being on the liver transplant list. A number of years ago my daughter was diagnosed with NAFLD and was very overweight. 2 years ago aged 32 she started to have a fear of chocking on food so really struggled to eat - continued to ask for help but roll on November last year she had lost 6 stone - still overweight but very malnourished and yellow. Bloods showed very high bilirubin and was immediately referred to liver clinic in Dundee. A number of scan and tests showing liver cirrhosis probably de compensated at that time. They did not understand how someone so young could have this so continued to pressure her to accuse her of being an alcoholic- she very rarely drinks. She was to,d she had 2 years to live and needed to get food into her body. Was promised scans every 6 weeks bloods every week a dietician and a psychologist - didn't happen. She saw different consultants each time annd telling the story over annd over annd not being believed regarding alcohol and in February one consultant said your progressing well see you in 6 months! In March she started to gain fluid around her waist, legs and feet. Was told nothing to do with the liver - back and forward until may and no help with fluid. She became immobile having gained 7 stone in fluid - so distressing. They eventually took is serious and organised a CT scan and biopsy and was admitted in June to get biopsy. Once admitted they we saw an amazing consultant who quickly realised how seriously ill she was - her kidneys were going into failure and ended up in HDU and then transferred to HDU in Edinburgh. Consultant had serious words with her to confess about her alcohol intake ! Roll on 3 weeks in Edinburgh and she completed her assessment and attitude changed - she had decompensated liver disease and only hope was a transplant and they knew that this was not alcohol related and was probably the malnutrition as there was no reason, they had tested for all other conditions. Started on nasal feeding tube which is a challenge for her but is getting nutrients into her. Start of July she was transferred back to Ninewells and immediately wanted back to Edinburgh as the care there was amazing ! But glad to be back in Dundee to see her children. 7th July day 16 being on the list she was told she had contracted C Difficele at 7pm and at 7.45pm got a call from transplant coordinator to say they had a possible liver for her but couldn't be considered because of the c dif. To say we were gutted was an understatement as she was so poorly and desperate to start the road to recovery. The hospital sent her home so she could stay infection free but they all said he will get a liver in the coming days as you are so poorly. Day 71 and still no call, my daughter is staying with myself and my husband so we can care for her. This week has been hard as she has been unable to get out of bed much as she is just sleeping and in pain. Still has 5 stone of fluid which makes mobility a challenge still. It's just heartbreaking seeing the life draining from her and we can't do anything but wait. Mentally she just doesn't want the rest of her life to be bed bound, she has no quality of life and struggling to be positive. Thanks for listening to our story and journey so far
Hard journey to waiting list - British Liver Trust
Hard journey to waiting list
Keep the faith, that call will come.
When is she next in clinic at Edinburgh? Has she had a drain for her fluid build up - I hope one is on the cards for her soon.
My hubby was listed at Edinburgh on 26th January this year and transplanted on 24th June. It's a hard journey when feeding becomes the big issue - had that with hubby. Got n/g tube at assessment and sadly it came out 3 times, in the end I couldn't get any food into him at all and he survived on 7 supplement drinks a day till his eventual transplant.
Best wishes, Katie x
Hi Katie. Thanks for your response. She is back at Edinburgh on the 19th September. She doesn't have a drain as there is very little fluid in her stomach it's all in her skin around her waist, legs and feet. We have had a few incidents with the n/g tube but it's saving her life at the moment and she knows that. Her muscle mass has increased over the weeks which is progress. I have read your story which is so heartening. Thanks Donna x
I see you've had difficulties with benefits - my hubby was on PIP at the start of his transplant listing (enhanced daily living and basic mobility) being on the t/p list the hospital social worker at Edinburgh phoned me and she put in a change of circumstances notification to DWP under the Special Rules for Terminal Illness and hubby was immediately moved to the Scottish Adult Disability Payment and was upgraded to enhanced for both - no reviews ever unless you notify a further change in circumstances. It did end up c*cking up my Carers Allowance as DWP mistakenly said he was no longer on an eligible benefit and I was no longer allowed CA but this week i've managed to rectify it and get it moved to the Scottish Carers payment.
Get a blue badge if your daughter is on PIP or ADP as it is really handy when you need to open your car doors wider to get easier access to vehicle.
Katie
Hi Katie thank you for your advice. We did eventually get her enhanced to both due to the terminal illness diagnosis but it was so difficult. Things shouldn't be so hard to fight for. The social work department at Edinburgh have been very helpful too. So glad you have got sorted. Nothing worse than stressing about money and sorting it out on hold all the time on the phone when you are very ill. We have applied for a blue badge so fingers crossed we get that soon. Up at Ninewells hospital today to see liver consultant so see what they say today about her deterioration. I hope your husband is continuing to progress Best wishes. Donna
Hi fishwife, that's a harrowing journey for you all to be on. Hopefully, she'll get that call soon.
There isn't much I can really add in the way of advice or experience, but the following did come to mind:
1. With regard to the fluid, have you had any advice about getting it drained? Is she on diuretics at all? If the fluid has built up to a degree where it is affecting mobility or discomfort so much, there should be some sort of trigger to enable a drain to be done. Unfortunately, I don't really have much experience of that issue to be able to advise, the majority of my fluid build-up was in the legs, lol, so see my 3rd point below for a possibility.
2. The c-diff infection. Do the transplant coordinators know that infection has now cleared? It may be worth giving them a call just to be on the safe side so there aren't any adverse markers around that may prevent a call.
3. Give the liver trust nurse helpline a call. They may be able to offer some appropriate advice on both the above issues or at least who is best to call to get that advice. They are really helpful, and hopefully, someone from TrustAdmin will respond with the number.
Hope that's a little bit helpful. Good look with the rest of your journey, and I wish you both a positive outcome.
Kristian
Hi Kristian. Thanks for your response. There is very little fluid in her stomach it's all in her skin on her waist, legs and feet. They keep trying different diuretics but keeps playing havoc with her kidneys. She is away to try a different one again today. At least it is stopping more fluid gathering but she really needs to get more off as she cannot get off the chair without help which isn't ideal when I have a bad back.
The hospital let the coordinators know as soon as the infection was cleared up and she was put back on the list - she was only suspended for a few days thankfully. Wry few people visit now due to the concern of passing infections on. Thanks on the advice to contact the liver trust nurse helpline we will certainly contact them
Best wishes. Donna
Hi, I’m so sorry to hear what you’re going through. Are you getting any support with caring for your daughter? If you talk to your daughter’s GP or social services they may be able to arrange for a care needs assessment and get other services involved to support you all. There may also be disability related benefits you could all get which might help pay for the things you and she needs. Citizens Advice have lots of information online and Marie Curie also have excellent information and support.
You can get palliative care alongside being on the transplant list. I know a lot of people are uncomfortable with the idea of palliative care, it doesn’t mean you’re giving up on the hope of a transplant, but it can mean better pain relief, care and support for loved ones while you wait for that call. I hope it comes quickly.
Thank you Readlots that is helpful. We have eventually managed to sort out benefits as she has had to give up her job - took 5 months and having to go to MP to chase to get resolution. We have now got district nurses coming in to take bloods which is a help but may need to start looking at further help as we have seen a deterioration in her health this week. The community health team have been great getting all the equipment we need. Best wishes. Donna
Hello! We too had a long and bumpy ride to transplant - i won't bore you with detail of how my husband was on and off the list, false alarms etc but now on this side of it all I can see more clearly. The process of transplant and recovery is equally tough, and the hardships you go through whilst waiting prepare you for this. There were times when my husband was so poorly after surgery that i knew I wouldnt have been able to deal with it if we hadn't got to the point where there was no hope without it. The weeks leading up, i just felt like I was watching him die.He too had more fluid around his beltline and legs than stomach. He used to sleep with his legs raised all night which definately helped. They tried another drug called furosemide (i think) alongside spironolactine but he didnt tolerate it very well.
Don't be afraid to be her voice, keep banging the drum. These consultants are amazing, clever, kind but busy folk and occasionally the system lets things down a bit and they rely on carers like us to keep things moving and alert them if things deteriorate.
Wishing you all the best, hopefully it will come soon 🤗
Ewife
Thank you ewife- sounds like yourself and your husband have had a long hard journey to get to today. It's heartbreaking watching your loved one in pain and deteriorating and everything is a fight to get help and support. We just pray for the transplant to happen soon so we can start the road to recovery. We know recovery is going to be a difficult journey and will have challenges along the road but at least we have hope. She has been on so many different diuretics and they are either fantastic and cause kidney failure or just are ineffective. Trying different treatment again from today but at least she hasn't been putting anymore on 🤞 thanks for your advice. Donna
sorry to hear of the terrible time your all going through. I to have liver cirrhosis and have not been a drinker. It’s autoimmune . PBC. you want to rant swear have a really good vent then go ahead and do it., as this will be your release valve, which nis very important to you. You’re a mother wife grandma and carer. That’s a lot of people you probably put before m yourself. So take this advice please. Make time for you to cut off for at least one hour a day . You need to keep you healthy mentally and physically. Try to laugh as it’s a great stress buster. Remember many people love you . We are all strangers to you on this site but most of us will have empathy for you your family and the whole situation. Cry scream stamp your feet, but do not take on responsibility for every one or all that happens. It’s ok to be vulnerable and have a bad day. Many people are rooting for all of you. I am ready to listen to you. No judgement go for it. You must be very strong to get to the stage your all at. I envy your strength. Hope this helps.
Thank you for your response. Myself and my husband continue to work (I am able to work from home) though my job includes travel which I am unable to do at the moment. Work is a good distraction and they are very supportive and flexible. But it is still mentally unbearable at times seeing your child so ill and there is very little you can do and trying to keep her spirits up too. We do try and lighten the mood where we can. It is good to know there is a space here and on Facebook where I can vent a little with people who understand. Thank you
Your welcome. Any time.
Sorry to hear about your daughter, to give you something positive to focus on I'm 7 years post liver transplant and living a normal life, yes I've had ups and downs but on the whole it's been good. I was transplanted due to NASH cirrhosis and waited 8 months on the list.If you use Facebook please feel free to join our friendly and knowledgeable group called 'liver transplant support uk ' thousands of people that have been in your situation, many younger than your daughter, talk to people that have been there not just doctors, always someone ready to chat.
Hilary xx
Hi hilary thanks for your positive reply. I have now joined the Facebook page - thank you it's very informative. Donna x
My heartfelt sympathy.
Hello
We are sorry to hear of your situation.
In addition to replies from other forum members, if you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here
britishlivertrust.org.uk/vi...
Best wishes
British Liver Trust
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