Hello everyone. This is my first post and it is regarding my father. He is a wonderful 74 year old vegetarian who has cirrhosis caused by an auto immune condition (they think!) It's a long post but I've tried to keep it succinct.
His downhill journey began 8 years ago with abnormal LFT's. After being told that they thought he has bile duct cancer, he had his first op which lasted 13 hours. 40 % of his liver removed as it was damaged along with his gall bladder.
Following the op he was told by the consultant surgeon that there was no cancer, and that had he been able to perform a biopsy in the area of the damaged liver he would not have opted to remove that area! We were told that the liver would regenerate and to eat steak....great news for a veggie! Lots of soya protein shakes later and my dad recovered slowly despite having the drain out too soon and getting septicemia in the process. He had to remain on antibiotics as he often had episodes of rigours,fever and light stools, dark urine. His LFT's remained abnormal. He remained under 2 teams at Derriford hospital in Plymouth....medical and surgical and continued to have check ups with both ( that alone can be very confusing - the number of times there was crossed wires and non communication between the 2 was frustrating.) I can't even tell you how many times my dad was told that he was a mystery. They knew something was wrong but didn't know what! All the while my dad had good days and bad days and got older.
Fast forward to November last year and my dad became jaundiced and started to lose weight. Bilirubin of around 300. Low albumin. Went in to hospital in January by which point he had lost 3 stone....he was still a mystery. Scans showed nothing, had every blood investigation going, biopsies....nothing. Then in march they announced that they would do another op as they believed that it was the roux loup that was the problem. He agreed to the op but had lost confidence in the team really. After the op his jaundice kept rising but his bowels seemed to be normal. They sent him home. He was very weak. No appetite, fatigue, no muscles left in his legs and now very wobbly.
A month later we go back for the consultant surgeon appointment and he stopped the antibiotics. 1 week later my dad nearly went into a coma with HE. We called for an ambulance only to be told that my dad was dehydrated and to drink more. The paramedic left him at home! My sister had to fight to get him admitted. He was discharged after a week and back on antibiotics. My sister and I discussed getting a second opinion and my dad agreed so we wrote a letter asking for a referral.
Whilst waiting for that my dad developed ascites and the fluid reached the lungs. He was again rushed in. Fluid drained. Further weight lost. Jaundice continued. My dad can now hardly walk but has his pride and refuses mobility aids. He has lost his independence and has to be cared for by my sister who lives close by.
In August we have an appointment at Derriford with a lovely consultant who informs us that dads fibroscan shows a score of 75 and there's nothing that can be done now. No option for transplant - he is too old. They think what caused it is similar to PBS but the markers are slightly different. Oh and by the way your liver never regenerated because of this problem so this is why you have felt so bad. WOW. His cirrhosis had been apparent since January but no one had told him! No point being referred now...there's nothing anyone can do at this stage. That appointment lasted over a hour. There were lots of tears from me and my sister. My dad was very brave. The consultant listened to us and apologised for the poor communication that had taken place and said he would feedback our concerns to the team. I feel like suing them. But I guess I just want someone to blame. How can the liver and bile ducts be such mysterious organs in this day and age?
So here we are. We hope he will make it to Christmas but have no idea how long really. They don't say do they? There's very little support and the information is found by your own research really. We don't know what will be next apart from the fact that he doesn't want to go into hospital anymore. He's had enough. Bless him.
Today he watches sport. Has protein yogurt and drinks. He doesn't really leave the house although he can walk to the back garden and sit for a while. I can't believe that his life is this now. He used to run marathons. It's so sad.
So thank you if you have read this and please comment if you have any tips or ideas that may help. If you are reading this and find yourself or a family member in a similar situation, my advice would be: get a second opinion asap. Don't wait. Do as much as possible to learn about the liver so you can ask the right questions.
With love
Helen
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Helenleeson
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Hi Helen, I'm so sorry to hear what your dad has been through, you all must feel so let down by his care team, I suggest you ask for copies of all his medical notes, ie tests, results, treatments, advice, ops etc and all the correspondence that the hospital was & is sending to his gp...these things have a habit of 'going missing' so it's always good to get copies and request to be cc'd in correspondence so you can know exactly whats going on.
Hi Tess, thank you - that's good advice. We started to request this but only recently. X
Has your dad been prescribed lactulose and rifaximin to help manage the HE? If that can be managed he will have a better quality of life . Kind regards x
So sorry to hear this...your Dad has great support from his family but you need as mentioned ALL the letters and then proceed on his behalf..all the best
HI Helenleeson
Sorry to hear about this, I was reading it and it bothered me a great deal that they removed 40% of his Liver, when it turned out that it was probably better the leave it in.
Then I started to think about when I was ill 2 years ago, I started looking into Liver issues because I felt so sick, I was a regular binge drinker and convinced I had done my Liver in.
Anyway, the more I read, the more I come to the conclusion that the human body is greatly flawed in millions and millions of people. I have read about people have Liver failure in a couple of weeks and the doctors didn't know why, they call it "Cryptogenic" another word for "we dont know why" This happens to all kinds of organs in many many people, reading some health boards has opened my eyes. Another guy one day brushed up against plant in an exotic garden, some kind of toxin on the plant went through his skin and caused a reaction in his Liver, he died a few weeks later. The point im trying to make is that we think modern medicine can solve everything and find anything wrong, the truth is that we arent as good as we think we are, Doctors arent gods. Blood tests are never 100% accurate and neither are scans, there will be some poor individuals who fall through the net with testing and treating.
What ever issue has afflicted your poor dad it doesn't sound like its well known and will likely fall into the "Cryptogenic" bracket. The "bad call" was operating on what they thought was cancer, but this call was made because they could not perform a biopsy to be sure? There are questions that need answering, but Liver cancer is a problem that needs a quick call to action and re-section is a common route. For now, try not to be too angry, atleast until you understand the situation better, Liver disease is very complex and remember Doctors are not perfect and neither is modern medicine, its highly unusual for a 74 year old to get a cryptogenic Liver issue, at that age it usually is Cancer or Cirrhosis from booze.
Thanks for your reply, yes you are right...the liver itself is very complex. The biopsies are almost like trying to find a needle in a haystack so to speak. I think that we have all accepted where he is at now but it is just so incredibly sad.
My dad was incredibly fit and healthy until 10 years ago, vegetarian for more than half his life, marathon runner well into his 50's and non drinker. He could turn his hand to anything and was always helping others. I guess if anything I am hoping that my post might push others to look for a second opinion or try other options before it's too late.
I worked in the NHS as a midwife and my frustrations are also about the fragmented care, the mistakes, drug errors, the lack of communication that my father has experienced...I would have been put on supervision if I had done some of those things! When he had his consultant surgeon appointment 7 years ago, he went on his own and was asked if he had made his decision about the operation... he asked what op and was told bluntly about the letter explaining the cancer - but he never even received a letter and had to process that information and agree in the space of 10 minutes. Hardly informed consent.
This experience certainly makes me want to get private health insurance. I'm pretty sure that if my sister and I had not been as vigilant that my father would already be dead. It makes me wonder about the poor souls who have no one to fight their corner. I must sound bitter and I try so hard to be positive around my dad but I'm just devastated.
I no exactly what you mean about the lack of communication, admin issues and drug errors. I'm so paranoid about the meds he's given in hospital I have to Check them before he takes them. He was given a tablet to lower blood pressure instead of a diuretic. Then they wondered why his blood pressure was low it was me who caught on to this and they still deny it.I could go in for ages about my frustrations with his medical care and other things I've witnessed.
I'm so sorry that you have to go through this and he's so lucky to have you to fight for him. If I could give a by advice to anyone just diagnosed it would be. Always challenge what you don't feel is right and get a second opinion earlier.
Try to do things as a family that make you happy and don't let what happened consume you. Enjoy the time he has left and make good memories.
The stories I hear about liver disease break my heart daily. I wish medical staff including GPs took it more seriously.
Thanks for your reply, yes you are right...the liver itself is very complex. The biopsies are almost like trying to find a needle in a haystack so to speak. I think that we have all accepted where he is at now but it is just so incredibly sad.
My dad was incredibly fit and healthy until 10 years ago, vegetarian for more than half his life, marathon runner well into his 50's and non drinker. He could turn his hand to anything and was always helping others. I guess if anything I am hoping that my post might push others to look for a second opinion or try other options before it's too late.
I worked in the NHS as a midwife and my frustrations are also about the fragmented care, the mistakes, drug errors, the lack of communication that my father has experienced...I would have been put on supervision if I had done some of those things! When he had his consultant surgeon appointment 7 years ago, he went on his own and was asked if he had made his decision about the operation... he asked what op and was told bluntly about the letter explaining the cancer - but he never even received a letter and had to process that information and agree in the space of 10 minutes. Hardly informed consent.
This experience certainly makes me want to get private health insurance. I'm pretty sure that if my sister and I had not been as vigilant that my father would already be dead. It makes me wonder about the poor souls who have no one to fight their corner. I must sound bitter and I try so hard to be positive around my dad but I'm just devastated.
hi helen i dont know what to say other than i am sorry your dad has been treated this way.its not easy watchign a loved one go through so much pain and sickness.sending hugs to you and your sister and one for your dad too..how is he doing?
Hi Lyn66, thank you for your lovely message. My Dad is still at home but very weak. He takes an incredible amount of meds these days to manage the ascites, varices, portal hypertension and infections. His jaundice continues and he has no appetite. I talk to him every day on the phone and luckily my sister lives close by. Im in the process of selling up so I can help care for him. He went downhill so fast and we really don't know how long he has bless him. He is coping well I guess, quite content as long as there is football or cricket on the TV! It was very kind of you to ask. Thank you again x
awe helen, bless you all...love the end part about the cricket and football, reminds me of my husband.:)...Keep in contact please.:0 would love to know how your all getting on...;0..
Hi Lyn, there really are no words to say how sincerely badly I feel for you and of course your poor Dad. Keep posting whenever you need support. The trouble with private health insurance as I,m sure you know is that apart from being seen quicker, it is usually the same doctors that you would get under the N.H.S. Having said that in certain circumstances being seen quicker would have saved a persons life I guess. I totally understand your frustration, we hear some right horror stories on this forum. If you have ruled out suing I would seriously suggest that yourself and your sister consider taking the matter further and at least complain about your Dads treatment to an independent authority. Maybe the hospital themselves ( the hosp can tell you how to do this ) but also and more importantly to an independent (patients advocate group can tell you the hows and the to whoms ). It,s so important for the sake of other families as well as your own. Things wont change otherwise, so many people say something must be done and then let it go. From your first post it,s clear you are articulate and passionate about your Dads care, you would be a great advocate. As you pointed out many people are unable to fight their own corners and medical people who mess up need holding to account. Thank heaven for Dad he at least has the both of you bless him. He sounds like a fascinating character!. sorry to go on. I helped care for a family member with dementia and the battles that were fought with incompetent doctors!. You may actually find it helps to get pro.active. and channel that anger to the good. Please let us know how things are going. Wishing you the best. Oh, and don,t forget to look after yourself! Yours, anne
Hi everyone, Thanks for all your supportive messages. Just an update...my dad just had a 36 hr hospital appointment to drain the fluid again. 7ltrs this time and a bleed following removal of the drain. They have stopped the spirolactone completely as his sodium levels bottomed out. He is skin and bone now. Not good on his feet at all and had a fall last week. Occy health and district nurses are now supporting as well. We have another appointment for 2 weeks when they will put in a rocket drain that will stay in. I am trained in Reiki healing so do some of that when I see him. It helps him to relax and sleep better. I wish I could do more. Will keep updating. Thank you all again for your kind words...I showed my sister and she was so grateful too. X
Thanks for the update I,ve been wondering how your father was getting on. Please keep us posted when you have the chance. My best wishes to the three of you. Yours anne xx
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