British Liver Trust

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Sick and tired of waiting

I was diagnosed with cirrhosis and enlarged spleen with varices and portal hypertension in june this year...long boring story but I still haven't seen my gastroenterologist yet but as I'd seen one privately he put me on his nhs list and arranged for a CT scan and capsule endoscopy. I had the capsule endoscopy 2 weeks ago and the specialist nurse told me she would ring me 5 days later to give me a preliminary diagnosis. Needless to say she didn't ring. I rang her several times leaving messages for a call back but never got one. I finally got her last week and she told me that there was bleeding in my small bowel and what looks like ulcers. She would discuss it with the gastroenterologist and call me back. Surprise, surprise no call. I rang this morning and she said that it looked like someone was reading my report and she'd go and speak to them and call me back. I've still not heard from her and I could cry with frustration. I know that they're busy and I'm just one of the many patients waiting for answers but I'm feeling very selfish and want some answers. I feel that my health is deteriorating but I still don't know the cause of my cirrhosis and wonder if I should be on medication or need further tests.

My 85 year old mother is driving me round the bend. She's constantly seeking attention. I feel like I can't cope with her demands at the moment.

Take care all. Deb

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Endoscopy

37 Replies

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Hi GrandmaDylan,

You have a lot going on. I have the same as you cirrhosis, enlarged liver, enlarged spleen, varices etc but I have PBC and was dx 12 years ago. What was the endoscopy capsule experience like? I have not heard of that, I had endoscopy last week and started propranolol yesterday.

Are you at least managing to sleep?

The capsule endoscopy is literally that. You swollow a large capsule which contains a camera and wear a monitor which captures all the images taken by the camera as it travels through the bowel. It's used when they think something is amiss in the small bowel as a colonoscopy can't get that far up and the CT wasn't clear enough for a diagnosis although it showed a resolving blockage. I can sleep when I'm watching tv but can't fall asleep once I'm in bed. How did they dx PBC? I don't drink but I'm type 2 diabetic and have previously had an autoimmune disease so they are thinking possibly AIH. I just want to know which kind it is and start on the appropriate treatment. My palms are getting redder and I'm developing even more spider naevie which worries me that it's progressing quickly.

Take care. Deb

Debs Debs Debs this isn’t like you, please don’t get down about it, even though I, And I suspect all of us, can understand your frustrations.

On the bright side, I wrote you a long reply but fell asleep before I hit the Reply button and now its gone. So that ‘s one big plus for you today already 😁

I’m sure it’ll sort itself out soon....

Al the best Debs

Miles

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Thanks Miles. I've deleted some of my long boring post. No wonder you fell asleep 😴 I just needed to vent! Have a good day. Deb

Lol Debs it wasn’t your post that sent me to sleep it was my verbal diarrhoea 😁

Miles

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You need to be under the care of a consultant hepatologist from one of the transplant centres ASAP! My gastroenterologist from the local hospital was pretty useless but at least she referred me to an amazing consultant at King's. Once under their care, everything was taken care of swiftly.

I've spoken to the hospital this morning. I have an appointment on 14th Nov with another gastroenterologist ( this is from my original referral in june. I think the gastro who I saw privately and who consequently arranged a CT scan and capsule endoscopy is more concerned with the cause of my anaemia than my cirrhosis. When I see the new gastro I'm going to insist on having the appropriate specialist either at the local hospital or Manchester Royal where there is a highly regarded heptologist Dr. Prince. I originally asked to be referred to him but was told that I had to stay with the gastro team at my local hospital. I am determined not to be fobbed off again. Hope you are as well as possible. Deb

Ring pals Deb if they still try and say the same, you're entitled to seek the care you need even if it's 200 miles away. I know the waiting is a nightmare, but in my experience once you get that initial appointment through, things move faster. Wishing you all the best for the 14th. Stacie. Xxx

I really feel for you. You could phone consultant's secretary. I've done that a few times, she'd been very good . Love and hugs Lynne xxxx

I was diagnosed with anaemia in February this year and was referred to a haematologist ( it was a 14 week wait to see her) who recognised some of my symptoms were liver related and contacted my gp to arrange a liver scan on the 3 week cancer pathway. I was then referred to a general medical and colorectal surgeon. He then arranged the gastroscopy and colonoscopy which both came back normal apart from some gastritis and a hiatus hernia. He then discharged me as they were okay. He didn't bother with investigating the small bowel even though it's about 15 metres long and it's turned out that that's where the bleeding is coming from. I never even saw him to discuss the problem. This is why they insisted on my staying with stepping hill hospital rather than referring me to a hepatologist at Manchester Royal. I have no confidence in stepping hill and feel that they've let me down and caused delays with my getting the appropriate treatment.

Thankyou all for listening to my woes, I'd be lost without you. Deb

On another note

If your mum has a social worker, you can say that you’re now too poorly to care for mum and ask for a live in carer. It’s cheaper for Social services than a care home. Elder care and Agin care are the most popular providers. All you need is a spare room. It may not suit you but SWs don’t tell you about it, so I thought I would.

Julie - who pays for live in carer, please. My MiL is in hospital at the moment with cancer and other issues. They are arranging twice a day care but she is so frail and keeps falling down 🙁 A 24 care scheme (live in) sounds just the job.

Miles

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It would be Sicial care, ask your sicial worker. The cheapest care homes are about £800 elder care is £795, agin care £800 per week. So it makes sense. They will try to get you to care but you can insist. My 88 year old dad was looking after my mum with dementia and had a break down bless him. I said I couldn’t do it because of my liver diagnosis, so this is what they came up with. Irene is lovely she cleans cooks and cares for mum. Dad has a companion when mum can’t hold an in the now conversation.

Thx Julie!

Are you saying live in care is £800 a week. If so I’ve wasted my life as a professional engineer. (Little stress, good and lodgings). Omg!

Miles

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The live in carer gets about £550 and the agency get the rest. She hates weeks off every 6 weeks and 2 hours a day off. Another carer is sent to cover the two weeks. They have to pay their own tax and n ins. Why they haven’t told more people I don’t know and they call it domicilliary care as opposed to residential in a care home, so the home is not considered an asset, so it’s not paid back by selling the house.

Presume they get bed & food?

Miles

Oh yes they live as part of the household.

Debs - I forgot to ask...does Stepping Hill have any joint clinics with a specialist from one of the renowned liver hospitals?

Derby hepatology clinic have a joint surgery every 3 or 6 months with the GOD of liver experts (well that’s how revered he seemed to be 😁) from Birmingham hospital, Professor Mutimer! I was s*** scared well very scared 😁 when I got “invited” to one of these joint clinics. I had no need as he is the most genteel, knowledgeable and caring man you could wish to meet. Derby weren’t keen on me having a tp, but he said in different words (cos he would never say this!) - get your arse down to Birmingham and we’ll sort you out - and they did!

So it’s worth seeing what links, if any , Stepping Hill have. If not ...well I don’t know what to say, but if I hadn’t had that opportunity I’m not sure I would be around still 😐

Sorry - but I didn’t fall asleep before sending this time 😁

Miles

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I see a general medicine doctor next week. I'm going with my sister who works at the hospital and I'm not leaving till I get the appropriate treatment sorted out. There is a very well respected liver consultant at Manchester Royal who I'd like to see....watch this space.

Good job Debs - go for it 👍

Miles

I think you need to make a formal complaint on the basis of not being informed of your results. It should not be down to a nurse. Your go is where I would start. Good luck

Hi Deb, I too have pbc I was transplanted in 2010. I had simular symptoms to you. I had varical bleeding, enlarged spleen, portal hypertension, no sleep virtually everything you mention. I too strongly feel you should be under a heptologist. Could you get some information from the PALS team I think all NHS hospitals have them. Patient advice and Liaison team. You do need to make some serious noise. Sometimes it’s called for, I don’t think gastrology have the expertise for you. Please try stay calm but stand up for your rights. Very best with it all. Lorna.

Hi Deb. I'm very sorry for your suffering.

You are in such distress and pain and your mother asking constantly for your help..

My son working for the Council and I 've heard him talk about people in your situation which they are sick themselves but must carrying for somebody. You should call your Council and ask for help, and they will send you someone to help you with your mother. Or, you can ask your Gp to call in your behalf.

I hope that you will find soon the answers that you need.

Take care

Hi GrandmaDylan,

It seems you have received some very good advice from people who are better able to give you advice than I can.

Hope things go better from here on.

Best wishes,

Mary

Under chose and book you have a right to chose who you are referred to see. You can ask fo a second opinion and insist you see a liver consultant not a gastro consultant.! Its all about money. If you are not in the catchment area you could be being fobbed off for this very reason. I have now got my referral for Royal Liverpool Liver Centre. If you are finding your Mum a great strain on you, which is totally understandable, Social Services have respite care which is free of charge and will be a change of scenery for your Mum too. You can visit her and and it is a always a tough decision but if you are ever to improve you need to concentrate on your own health. Keep on fighting them and mention 'solicitor'. Its a magic word in the NHS .Its not an ingrowing toe nail you have! Go and get them told!

I asked to be referred to Manchester royal hospital but was told I wasn't in the catchment and to continue with my local hospital which is about 10 minutes away. Strangely I have been referred to Salford Royal for laser treatment for my spider naevie. Manchester Royal and Salford Royal are both about a 40 minute drive away. After ringing pals several times and leaving 2 messages I finally got a call back yesterday. I explained my situation and she is going to look into it for me.

I dont live in Merseyside, I also go to Salford Royal, I had the treatment your having. They are a centre of excellence but their gastro guy was useless. My GP accepted I wanted to go to a Liver Centre no argument. Get your boxing gloves on and refuse to take no for an answer. Like all walks of life there are god and bad . If your GP refuses remind him of chose and book. When I have been an in patient at Salford, 30 plus years of psoriasis there were people in the ward from all over England. PALS are also intermittent. All from mine and others experience. Its a sad state for people who are suffering and worried, but I still have a brain that works. I don't want to be a crock, you sound the same. If need be write to your MP. You cannot be refused a second opinion or choice of hospital. A liver specialist is who you need to see. Stay strong and determined. You can get 30 minutes free with a lot of solicitors, as I said just the mention of this often gets results. God luck and dont be fobbed off.

Thanks Radnor. My appointment for my local hospital is on the 14th Nov. I live in stockport. I was referred in June! My sister works there and is coming with me to ask the questions I forget. If it turns out tjat he's not a liver specialist I will insist on seeing one. I wasn't offered choose and book, I could kick myself now for waiting so long but I thought the gastroenterologist I saw privately was on the case. To be fair he has arranged the CT scan and capsule endoscopy but I think he's not really interested in the cirrhosis and is more focused on the possible inflamatory bowel disease. When I initially saw him he said I would have regular blood tests and liver scans and every three years I would have an endoscopy to check for varices. He said I'd also be checked for AIH as I have previously had an autoimmune condition. But this hasn't happened yet and I saw him in july so it's been several months. Doctors might consider that a reasonable wait time but when you're the patient it really takes a toll on your mental and physical health.

Deb

Poor you Debs 😢. Haven’t you got any relatives that can help you “argue the case” to see a truly appropriate consultant. You shouldn’t have to carry all these problems on your own.....

Miles

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I must have written this before your post above, Debs, because your sister sounds just the right person!

Miles

Taking your sister with you is great. Before I was retired on health grounds I had a weird and wonderful job. I worked with people who had addiction problems and were issued with ASBO's. I regularly advocated for those who did want to avoid prison. I learned that they had no chance of accessing services without someone to assist them, or get housing or counselling. This is why I am am probably so direct about the NHS. I I regularly spoke to Drs, on their behalf. It was a pilot scheme and if it had been rolled out nationally it would have kept jails clear for the real criminals. It taught me that Dr's are not God's. I had regular contact with solicitors and barristers too, which also was very enlightening. Be direct and insist on being referred. I appreciate the toll it takes on mental health too, I have avoided this by being pro active. You may still need this gastro consultant re your bowel , but liver disease is a specialist area and you are not being disrespectful, you want answers. Good luck on the 14th , Im sure your sister will help you to convey what you want. I am under 4 consultants, I have asked for the referrals and they have been justified I hate being dependent on others and I am sure your the same. I am the worlds worst typist btw, so anyone thinking Im illiterate needs to know. Keep us informed , this forum is the best I have ever been on. Wishing you success in getting listened to. Hazelxx

My mother doesn't need a carer or social services. She is able to do all her own cooking, cleaning and shopping. Her husband has been diagnosed with Alzheimer's but isn't too badly affected at the moment and he shop's with her. It's more his short term memory at the moment. She is a bit unsteady on her feet and uses a stick outside the house but refuses point blank to have any other walking aid. Her main issue is she is a cantankerous old bat 😂 she resents her husband and speaks to him like dirt. I'm ashamed by her when they're out in public, she seems to relish humiliating him. Many years ago she stabbed him in temper. Luckily he was fine but he should have left her then. She hit me and my sister most days until I told her at 18 I would hit her back if she did it again. It was always her short temper that made her lash out because I was never a naughty child...I was too scared of her to be.

Sorry, just seen that I have replied to a post that you put on here a couple of weeks ago. That's what happens when you've just had a snooze! Will pull my brain cells back together now!! lol. Alf

Hi Deb, I hope that you get some replies and information really soon. There is nothing more frustrating when all you require is a phone call and two minutes of someones time and it's not forthcoming. Medical staff seem to forget on some occasions that when you are waiting for information your mind goes into overtime mulling everything over time and time again. The things that you normally deal with in life can become too much when you are worried and under stress. I would say to you keep ringing them and asking and don't feel embarrassed or feel that you are being a nuisance because it's your life and your health after all and that's the the important issue here. Keep your chin up. Alf

Thanks Alfred. I finally see someone tomorrow but I'm just hoping that they can start investigations into my cirrhosis at last.

I've just had a call from the endoscopy suite to arrange a gastroscopy which the doctor I saw privately has referred me for. Apparently it has to be done by a consultant this time. This is to further investigate how to treat my bleeding duodenal ulcer. Hope your recovery is going well. Deb

Hi Deb, I hope that you get things sorted quickly now after all the waiting that you've had to do. I'm doing well now thanks. Had an x ray on my back today ready for transplant team to look at results next Tues at clinic. Hopefully my back problem will be something short lived. I did have a huge haematoma from transplant op so it's maybe connected to that. I have a scan tomorrow on upper left arm as I have rotator cuff syndrome. This actually is not causing me pain anymore just impeding me getting my arm any higher than my shoulder. As I don't intend to be sitting in class any more and desperate to ask to go to the little boys room, I can't see that it will cause me huge problems, lol. My problems are now nothing at the side of yours. Sometimes anti biotics can heal duodenal ulcers, I hope that's so in your case and hope also that things start to move forward for you. Stay positive and count to 100 when dealing with your mother. Alf

I've previously had Hpylori twice and had the antribiotics which worked really quickly but I've been told that this is much worse abd will need further treatment. Good luck with your scan tomorrow. Deb

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