I was so touched by all the supportive messages members of this group sent to me in response to my first post last week. You really helped me through a very difficult few days and I’m very grateful.
I thought I’d give a little update on my situation in case it helps anyone going through what I am. I seem to be quite rare!
So after a very poor liver biopsy result last week showing extensive damage to my liver bile ducts (Ductopenia), I was sure I would go on the transplant list at my hospital. My doctor wanted me (or my chart) to be seen by all the Liver Multidisciplinary Team (MDT) comprising Hepatologists, surgeons and anaesthetists. So in total, 6 specialists have reviewed me.
So the consensus is that, although my case is “one of the worst they’ve ever seen” of antibiotic- induced liver damage (sky high bilirubin etc) they are happy to adopt a wait-and-see approach. If I can at least maintain my weight (ideally gain) and keep infections at bay, they haven’t given up hope that my liver might start to recover.
The hardest bit for me is coping with the nausea, my diet is helping but there are some days I eat and feel fine and others where I eat the same stuff and feel dreadful. I’m on a nutrition supplement that’s juice based as I can’t do milky food at all and trying to eat protein+carbs at each meal as well as snacking between meals. My appetite has increased so that’s a good sign apparently 😃
The other challenge is that this recovery could be painstaking slow, over many months or even a year or more. Who knows? I’m sure you all feel this frustration. Until 1st December - 2 months ago - I was perfectly healthy with a busy job and busy life looking after my 3 kids. Now I’m stuck at home, eating to a plan, sleeping, and with no social life. When I can I get out for a walk but it does depend on my nausea.
Sorry for long message but I hope it will help somebody at some point. Staying mentally strong is going to be the hardest part and a transplant is still very much a possibility but I’m grateful for every day and trying to stay as positive as I can
Xx
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Dililiver
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Thank you so much Lynne, I’m sure I’m no better than what anyone else in from this group is going through or has gone through. I hope you are keeping as well as you can be in your situation x
I’m so sorry to read that, I really hope your doctors can get you right. Have you been sick for a long time? I’m feeling ok just now so sending some well vibes to you via cyberspace xx
Thank you so much for your kind words. I've not been right for at least the 6 years, it could be more. I have by fobbed off on occasion. When hubby comes with me they seem to listen more which is annoying.
How are you feeling tonight? Love and hugs Lynne xxxx
Ah no sorry to hear that. Frustrating, upsetting and more besides I’m sure. I’m ok the nausea thing is hard to deal with. I did well most of today but feeling queasy since about 5pm. Have to try to get my weight back up so I’m trying to eat but easier said than done (never had problem eating before this!). And itchy too!!!
No I must ask my consultant about that. He said I could take piriton but I’m scared to take anything in case it stops my liver from healing. Silly, I know.
Just read your message and thought blimey what a shock for you. Hey, they always say antibiotics aren’t that great in large doses!! 😝😝
It’s reassuring to hear that there is some positivity about your circumstances. It is weird that you’ve only been So poorly for a couple of months. Fingers crossed that your liver is able to recover. It is an amazing organ.
Yes, it’s hard work at the moment, but, you’ll get through it. Even if you do ultimately need a transplant, trust me it’s far from the end of the world!! We’d all
Much rather have never needed it, but life is so so different after......for the better.
That’s for such a lovely positive message, Andy! I know it’s so shocking that an antibiotic can cause such damage!!!
Yes the liver is amazing so I’m really hoping mine will remember that and get its butt in gear - anytime now would be good 😃
Although I’m hoping not to have one ig is SO reassuring to hear from you and others that life can be good again after a transplant. It’s just a very scary thought, I was handling it ok until one of the hepatologists started quoting survival statistics!
I’m sure most of you have been far sicker for far longer than I have, so should stop moaning! Still my husband is probably glad that I’ve people other than him to offload on!
I hope your health is good, Andy, and thanks again for the message.
It can be dreadful Lynne! Some days worse than others, I find. Last night was the first in a while where it woke me up and kept me awake. Sleepy today......
Night time is horrendous. I usually get an hour or less sleep per night due to pain. Last night I actually got some sleep!! If j ever get more than an hour, it's a miracle but I know I'm for it the following night!! Oh well, got to keep smiling 😊 love and hugs Lynne xxxx
That’s awful Lynne, how do you keep going during the day you must be exhausted! Do you nap or does that make you feel worse and disrupt your sleep more? I feel for you x
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