I wrote a long while back about the struggle I'm having trying to get some actual medical care for my poor old liver.
I've now had 3 scans, a couple of tantrums at my doctors, and am waiting for an appointment at the liver clinic. Sigh...
I'm still housebound- can barely shuffle around my flat, and have a list of problems.
I really am getting fed up now, considering I first went to my gp almost 2 years ago because I felt very unwell.
I'm still not at work (it's been around 6 months, now) and I'm wondering if I'll ever be well enough again.
I now have a big swollen lymph gland in my neck which is going to be scanned next month, but only because I insisted, as I was told it's probably just reacting to me being unwell.
I feel very let down and alone in my struggles (and it really is a struggle to even function)
So, I just needed to get that all off my chest. Ha!
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MissThing
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Oh, and furthermore..... when I read about peoples scores and results, I'm totally clueless, as i havent even got to the stage of discussing any of thos with a doctor.
My ct scan showed 'cirrhotic changes' (whatever that means!) and a swollen spleen.
Hi MissThing, do you know what scans you have had so far and what the results were? If not, you should be able to ask for a copy of the results from your GP?
Mine is the same, I got no results at first just 'some fibrosis, lose weight'. Then when I asked for my results she told me they were available online (I told her they weren't) so she included them with my letter and all I got was my kPa and 'F3 significant fibrosis', none of these others scores everyone talks about.So, I went from some to significant.
I know they're all covering for the covid, but they could at least be nice!
Hi, Here is our information on how to complain about the NHS;
Your experience sounds horrific, it does seem that embarking on a process of complaint against your Doctor/GP has an impact. It sounds wrong and almost like the act of complaining is borne from a sense of 'entitlement' but medical professionals seem to really fear litigation/sanction and pull their finger out.
I see the Liver trust have helpfully provided a link for how to complain.
Yes I know what I have above typed sounds awful but deal with the world as it is, not as we would wish it to be!
The key to the sudden improvement in my care I believe was asking the Doctor (Partner of the practice)
Are you sure your GPs are following at least minimum NICE guidelines?
Not following clear, well disseminated NICE guidelines as a professionally qualified GP being a possible cause of claims of 'malpractice' I suppose,
Saw the GP wednesday, blood tests scan all done within 48 hours, I am now just waiting to hear from my liver consultant's secretary about the questioned I asked. This is how it must be if you go private!
Whether in fact I should be going away for three years or whether I should be having precautionary 6 month scans
HiThe fact that your Doctor incorrectly referred you to the Surgical Department rather than the Hepatology Department is exactly what happened to me. Thank you for sharing that information.
Is it possible for the Liver Trust to raise this specific issue with the Royal College directly?
Not only does this error cause a greater time lag in being treated but it is also a spectacular waste of time and money that the NHS can ill afford.
Any unnecessary period of waiting can have serious consequences for the patient as I well know!
Boody hell it sounds like my local hospital (jeez aloo). Sorry hello missThing, I was sent home so many times before finally getting proper diagnosis. I just kept going back to A&E with abdominal pain (mainly ascites fluid crushing my organs) the first few times they just drained the fluid and sent me home with painkillers. I had to make a right stink up, finally I was in hospital for a month (stroke until, no other beds) had scan after scan and all 3 camera procedures. (Brutal the third one) After months of not knowing I found out that my liver was cuput (as the consultant said). That was just my experience... I hope you can get some answers because I know the not knowing is terrible if fact it's worse than the outcome. Try to be a little more pushy and demand results in hospital (they cannot refuse) also tell them you are part of the British liver trust (they seem to change their attitude when you know the information provided) and been given so much advice and possible conclusions. (That worked for me, I saw the consultants face change). I mean it, all the best.....
Gosh, that sounds awful. I think your GP practice should at least have done a full liver screen blood test & complete blood count to see how your liver is functioning, and possibly an autoimmune screen if the cause is not known? For me, they started taking me more seriously when I spoke to the practice manager & explained the situation & how it was affecting me.
Don't know if you could do the same, and take someone with you to back you up?
I am seeing a rheumatologist.The nurse at my gp practice suggested that route because I kept insisting I didnt feel well, and doc kept insisting bloods were fine.
I'm never sure whether the whole rheumatologist part is "barking up the wrong tree", in light of the liver issues that have come to light?
It's all so complicated, and I feel so tired and unwell. (Sorry, I'm in full blown moan mode!) 😙
The main thing MissThing is do not despair and keep in touch on here. Many of us can understand how you feel and how desperate it can make you feel
Speak to the Practice Manager of the GP at the earliest chance, do not bother just filling in the form (of course you can fill the form in as well), phone the surgery and ask to speak to her/him directly and ask her/him to arrange an appointment with one of the partner GPs.
Take a friend along if you can (if I knew you and lived near you I would be happy to come along myself), go through your medical history line by line at the meeting and ask the Partner GP to justify the treatment you have received so far, then ask him/her to form an action plan for your future treatment.
Having suffered serious mental health issues I know that there is an advocate service for mental patients, is there such a thing for liver patients?
If there is not one I would be happy to volunteer my services in help create one.
Get ready for a huge list... I also need to say these are not minor niggles, but severely impacting my life.
Ready? Top to toe;
Hairloss. It was painless, but now my scalp feels burnt and has painful whiteheads on it.
Sore eyes. One of my first symptoms, but they are now permanently red and feel as if they have fluid in the surrounding areas.
Teeth. Crumbling, with bleeding gums.
Tongue. Feels as if it has fluid around the base, and makes my mouth unable to clearly form words at times. Sometimes my mouth drops on one side.
Neck. Swollen at times, hard, awful whiteheads around my collarbone, and now a swollen lymph gland.
Body. Painless but horrible looking rash, which is spreading from my shoulders, downwards and is all over my back.
Belly. Swollen, more at times than others.
Legs. Shiny looking and swollen. Originally was my ankles, but now my shins. They don't look too bad, but feel as if they weigh a ton!
Yellowish skin.
Dark wee.
Light poo.
Fingers are almost unable to do things like spreading butter, writing, etc.
Breathless almost all of the time.
Pain in shoulders, one elbow, hips, ribs..
Itching..
I'm not sure how much of this is liver related, or possibly autoimmune, or whether an autoimmune problem has affected my liver.
Low platelets (am as white as a ghost, but sometimes blue or yellow) Heart scan showed nothing when a murmur was investigated.
Low vitamin D.
So yes, there are some of my symptoms, along with dizziness - literally like a snow storm in my head when I exert myself by standing up or shuffling a few steps.
MissThing, have you considered going to A&E? From what you've said I think your GP and the hospital may not have understood the extent of your symptoms. Can you get someone to take you to the GP first thing on Monday?
Other commenters - am I right in thinking that hepatology & the GP practice need to urgently try to establish the cause of MissThing's liver issue as it's currently unknown?
Miss go to A&E please hair loss and abdomen swelling, swollen ankles, yellow skin is a sign of decompensated cirrhosis (you never know for sure). I went to A&E everytime I was in pain also with symptoms and kept being admitted. I couldn't get an appointment with the consultants and the GP appointments were only available for 2 weeks time. I started to ring the liver nurses and they advised me to go straight to A&E as it's the only way to be seen by someone. (They knew about my liver problems) I always had a stomach full of ascites fluid and was in pain.Only thing is you have to go through COVID testing and bloods, ECG and explain to the A&E GP what's wrong before being admitted.
After a couple of times going, I treated it as a day out, I'd take a bag and put some sandwiches and drinks in and a film on my phone to watch.
Might sound extreme but I finally got a diagnosis and I'm still here now because my transplant was done in time.
To be honest I find most of the doctors very flippant. They have no comprehension or understanding what it is like to live with debilitating symptoms...I would like them to live in our bodies for one day to see how horrendous it is. I doubt they would be so flippant then!
I agree there seems to be zero empathy or sympathy perhaps it is considered so often to be a 'lifestyle' disease, although in many cases it is pure bad luck of course.
Hope things are ok with you, it is 4:15 pm UK time here and I was thinking about you and how difficult it can be when all the helplines and agencies are shut. Particularly when you are suffering with anxiety. In one of your replies you talked about going 'silent', do not go silent please, follow my example and keep posting!
Hopefully we will hear something from you today, if not take care of yourself!
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