Hi, it's more than 3 months since I started having symptoms & things seem to be getting worse. I've had a uti for months which isn't responding to antibiotics, I'm having constant jerks/involuntary movements which I'm treating with lactulose, and my gums are starting to recede & I'm afraid my teeth will fall out.
I'm assuming if my condition was going to stabilise it would have done by now?
I have no partner or kids & a very small family, but I'm very close to my parents who are in their mid 70s. I have two close friends, one of them is a devout Muslim so I think I will lose the friendship due to this being alcohol related.
I'm consumed with guilt for what I've done & am really questioning whether I want to put myself & my parents through this. I will never have a normal life again & can't see a way forward.
Sorry for the tone of this post but I'm in despair.
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nerd1
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I am sorry to hear that you are feeling so desperate at the moment. Depending on how sick your liver was when you were first diagnosed it can take a while for things to improve.
Have you been able to speak to your medical team about how you are feeling? I don't just mean from the physical side of things but also from the emotional point of view. It is really, really important that your team/GP aware of your feelings as soon as possible.
Try and speak to your friend - a true friend will not judge you no matter what their religion.
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It is such a difficult situation for you to be in. It's scary going for tests such as fibroscans but on balance it is better to know what is going on. At least then you will know what you are dealing with and further investigations can be organised if necessary eg blood tests. Without a diagnosis it is hard for any medical team to work out how to help. You should not have to be dealing with constant UTI's, they make quality of life miserable ! If the antibiotics havent worked then Woodi is right. Speak to your GP about this.
Hard as it is, try and steal yourself to have the fibroscan, you may well find that you have been worrying unnecessarily and if it does show an issue then you and the doctors have something to work with and improve.
Please do not give up. You need to speak to your GP to get you referred to a urologist to solve the UTI issue. You need to really press for this.Best wishes and stay safe
I feel for you I really do, I’m in exactly the same boat in almost the same circumstances and age. Pretty much 3 months till the day I started getting the fatigue and all the other lovely symptoms. My gums have also started to recede and I’ve already been to the dentist twice already who have confirmed they are. I had jerks before i got the fatigue and it was mainly at night, my arms and legs but that stopped a while ago now.
Like you, I cannot get a diagnosis, I spoke to my GP this morning and he again said my LFT all came back fine (but he didn’t test for AST or GGT - i keep asking!) in the last lot of 4 blood tests, and I’ve had an ultrasound and CT scan. My gastro hasn’t responded in a month and I think pretty much washed his hands of me after the clear scans. In fact all my blood tests for whatever they are testing have come back fine since Feb.
Please don’t give up, what really helped me is reading peoples stories on here from the past, people have bounced back amazingly, transplant or not, it does take time however.
I thought i'd share my situation above as I know exactly how you must feel. I’m hoping symptoms will get better, I look physically exhausted and am most of the time but I’m trying to be upbeat and carry on life as close to normal as I can achieve.
Did you ever get your Fibroscan booked? If you want to chat or vent feel free to PM.
You are anxious, and are feeling poorly--you need to get to the bottom of it and that will be frustrating if docs just write everything off as anxiety. Many of us have been there, it's a bad place to be.
Keep an open mind about your symptoms-they may not be caused any liver disease. While everyone goes through liver disease differently, if you had HE, you would almost certainly have other symptoms of it (forgetting words? inability to concentrate? dropping things? walking into rooms often and forgeting why you're there?) and of a failing liver -- rapid weight/muscle loss, red palms, insomnia (not restlessness, but the most jarring insomnia you could imagine), tremendous fatigue, and probably others. You mentioned jaundice before--that would have been confirmed by high bilirubin on your blood test--jaundice doesn't come and go by the day--was your bili high? Are you able to walk 20 minutes without feeling completely exhausted? Are you bed-ridden for 80%+ of the day? A failing liver, that is one beyond a well-compensated cirrhotic liver, is not subtle.
A fibroscan was mentioned--that's a great idea, you should get one as soon as possible to get more knowledge. If it's bad, docs will start you on treatment and you'll feel better. If it's good, you may have some peace of mind.
I just started 3.5 months ago on the liver journey no one wants to be on. My track involved normal blood work, unclear scans, and HE. And you're right, if your liver decompensates, normal life is done (I'm there--38--life was on a great track, alcohol too was my downfall). Despite it, and between moments of despair and regret, there are moments where life is still clearly worth living. If you're a nerd like me, listening to podcasts of how other young adults have dealt with terminal diagnoses may help (though you might not be terminal, don't forget!). But it's too soon for you to go there yet. If your diagnosis ends up being bad, I hope you will continue to find the good moments in life.
Though I won't lie, if death with dignity was an option where I live, I would have much less anxiety about the coming days/months/years.
Hey Nerd1, just wanted to see how you are today? I know others have given you excellent advice and I hope you’re feeling better. As a parent I’d say please, please talk to your parents about how you’re feeling. I’d go through anything with my kids without a second thought and I’m sure yours would too. Some of us are privalledged to be able to pay back our parents love and care when they get old and poorly. I hope you’ll feel better soon.
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