Fed up and don't know we're to turn

[Brightstar15]

Hello everyone! I have not been on here for such a very long time, I was diagnosed with NAFLD in November 2017, it quickly progressed to cirrhosis within a year,

My consultant did not openly tell me I just thought I had a fatty liver with slight scarring and diet change ect was the way forward

I later heard my consultant speaking on his dictaphone to his secretary that I had cirrhosis, I said nothing my husband was with me and I asked him if he had heard him say cirrhosis after we left the hospital, I said to my husband it was fibrosis surely that's what they call slight scarring, anyway I went again to see my consultant 6 months later and I asked him if I had cirrhosis and he said let me check on the screen taking in mind he had seen me a few times and his answer was yes I was so shocked I did not even question why he had not told me himself 6 months before, since then I have had numerous health problems in one particular consultation I had become a little more poorly and my consultant looked at my hepertolgist nurse and said to here why have you not sent (myself) to Birmingham for them to see me and speak with the liver transplant surgeon, taking in mind he had never asked and she also was shocked by his request first time she had even heard of his request. I had just found out that I had portal hypertension and varices and my platelet count was very low and still very low to this present day. I went to Birmingham 2 months before covid and he requested for me to come of some of meds eg antidepressants sleeping tablets, I have done what he asked and no longer on them, he said he thought I would see me coming back to be listed within the next 2/ 5!years.

Anyway I have become more poorly I am in lots of pain,

Feeling nauseated a lot don't feel hungry bowel issues, I am on lactalouse.

I am feeling tired constantly mobility is an issue shoulder pain and wind all the time, feeling hot and cold never the right body temp, I have pain on my spleen has it's enlarged.

I am well over due an endoscopy they are not doing routine ones at present in Wales only urgent ones I have been telling them for months I have pain in my stomach by my navel it hurts so deep down they said they would find out what's wrong when they they look with the endoscope and I have vomited a few times to lately but they still won't let me have the endoscopy only urgent patients I don't mind waiting at all , but ever so worried it could be something else and could be urgent.

I have just had an ultrasound but I can't have my results till sept.

Also forgot I have muscle wastage now and on fortisips

Anyone been through the same with there care any advice how to get them to understand my concerns because they keep brushing me off and making me think I am making to much of a fuss and being a pain in the bottom I now feel like I should just not say anything and there are people who are worse off then me and to be grateful I am alive sorry for the moan.

Hugs to you all Brightstar 🤗

[Glenfaba123]

My husband hasn't been seen for over a year by his liver specialist, it is very frustrating, he's had blood tests but thats it, no scans or US nothing. We live in wales too and everything is so slow, my hubby is deteriorating but nothing seems to be getting done here either! Julie xx

[Brightstar15 in reply to Glenfaba123]

Thank you so much for your reply I am so sorry to hear of the treatment that your husband is not receiving, it's just so sad that we know that we don't feel right and we don't get heard I had my ultrasound 3 weeks ago, have not heard anything I asked about any changes to my liver ect in a message to the hepatoligist nurse, she did telephone back left no message, I then returned her call but went to answer phone asked if she could phone back, but nothing, I know of someone else who sees the same consultant and she messaged them and a quick reply and gets much better treatment than myself. Maybe i should just not bother anymore with my health so very down xxx

[Hidden]

HiYou are having a rotten time aren't you? We have talked many times on the telephone , it's just not fair.Its a pity there isn't someone else you can see who would take you seriously. I have a friend who lives in Chorley, Lancashire who has appalling treatment just like you.

I thought my consultant was blazé but I now know he isn't. I received a letter after I'd had my telephone consultation with him. He said I'd need to have an ultrasound every 6 months, bloods done at least every 6 months including an AFP which is to check for cancer of the liver and also to test for pancreatic cancer. I am very relieved about this as my Mum sadly passed away from pancreatic, lung and liver cancer. He said if I felt symptoms that weren't right for me , I was to contact his secretary myself or ask my GP to do so which I've had to do this week. I did ask him about another fibroscan and he said he would need to see my ultrasound results first. I'm very lucky to have a great support network of family and friends and also many people on here too. I would like to thank you and many others on here for all your love and support . You know you can contact me anytime of day or night and that goes for everyone else on here too.

Lots of love and hugs to you and everyone else Lynne xxxx ❤️🤗🙏💜🤗🙏

[Owlie in reply to Hidden]

Lynne you are a star honey! Xx

[Hidden in reply to Owlie]

Aww, bless you. Thank you . How's you? xxxx ❤️💜

[Owlie in reply to Hidden]

Good thanks! FB locked me out and having problems getting back in so if you’ve messaged me that’s why I haven’t replied! X

[Hidden in reply to Owlie]

Okie dokie xxxx

[Hidden]

Hi Brightstar15, I can see that you are getting support from other forum members but I'll add a link to support groups at the British Liver Trust which may of use to you.

britishlivertrust.org.uk/in...

Take care,

Trust10

[Hidden]

Hi,

Why don't you call our nurse led helpline for a chat about this? Its open Mon to Fri 10am to 3pm on 0800 652 7330

[sophiaS1980]

All you can do is shake your head at some healthcare given. When I don't feel that I am getting the care I deserved and should receive, I always find another doctor and make sure I let the Medical Board Know about the doctor lack of care. Many people use the medical site to find good doctors, therefore, many doctors don't want a low score from patients on the Medical Board site. I hope you find some help.

[Hidden]

As for the US results...I am in Canada, and we can sign up for the service- Pockethealth- where you can see your results very quickly- scans and reports. Reports give you explanation in people's language so to speak. So you can have an idea. The same with blood tests. I get blood tests results through Lifelabs before even doctors see them.

[utep99]

By all means, get to a GI Specialist! He can begin testing immediately. Give up smoking, Alcohol as well as fast foods. The third one fast food will make your condition worse. Giving up smoking and drinking will usually be a requirement by a transplant Doctor as they want to make sure your new liver does not get ruined again. There are tons of tests! be patient and maintain a good attitude! It is at times hard but if you believe in God your attitude will stay up. Talking even to God helps a lot. Keep your blood sugars and walk a lot. It will help with recovery. A wait on a transplant list is taxing but be ready for the call and a new life,

[idyllic420]

I'm very sorry for your poor experience with the healthcare providers. I wish you a very speedy recovery so that you can enjoy what life has to offer. May I please ask you what kind of sleeping pills were you taking and the dosage? I take Melatonin..my family doctor tells me that it is safe for the liver...I can easily stop taking it but since he said it;s safe then I keep procrastinating and have why not mentality

[Hidden in reply to idyllic420]

Hi

Melatonin sounds good but it's pain from my many conditions that keeps we awake at night. My liver dust was caused by meds from my drs over the years, I now have compensated cirrhosis.

How are you feeling tonight? xxxx ❤️💜

[Brightstar15]

Thank you all for your reply's xxxxx

[Onesmallstep1969]

Hi Brightstar, How are you doing? Any improvement in your healthcare? I don't know if it will help in your case but some people have found that drinking coffee helps to regress their fibrosis somewhat. Keep your head up!