Having spent almost 2 years going backwards and forwards to my doc, telling him I don't feel at all well, I finally threw up blood.
I took myself off to hospital and have been told i have scarring on my liver.
I'm a bit at a loss as to what happens next, as i seem to have been given this info and cast adrift.
I phoned my gp, who helpfully said there was nothing on my notes about scarring, and after much sighing and tutting and puffing referred me for a liver scan.
I recieved a refferal letter by lunchtime the next day, and am awaiting a call from the hospital with an appointment.
In the meantime i have had an appointment come through for the liver clinic (probably made after my hospital visit) , but its not until next february!
I feel absolutely rotten... so poorly.
I'm off work, but even getting a sick note is a battle, and I'm really not good at being pushy.
I'm not sure what I'm hoping for in posting this, but I really would appreciate a little reassurance or advice.
I feel so ill, but almost embarrassed, as if I should be just getting on with life.
Thanks for reading if you've got this far!
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MissThing
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What tests did they do in hospital and did you have an endoscopy to check where the bleeding was coming from after you'd thrown up blood.
Throwing up blood after a ghastly period of just not feeling right is what led my hubby to A&E and a subsequent diagnosis of bleeding from varices due to cirrhosis of the liver (he had to have an endoscopy and banding). He went on to the books of the local gastroenterologist and later to the liver unit in Edinburgh.
Did you not get a copy of your hospital discharge paperwork? It should have outline what findings they made. In future if you don't get this either ask for it or if you get an envelope for your GP feel free to open it and take a photocopy - it's your health, your notes and you should be 100% included in your care. You also need to start sticking up for yourself, you need to be your own advocate and ASK, ASK, ASK. The squeaky wheel gets the most attention - you don't need to be rude but be empowered.
The BLT has a page all about the patient charter which outlines the level of care and such like you should have and good Q&A's to ask doctor. britishlivertrust.org.uk/li...
If you are feeling grim then you must seek a sick note and get signed off, sadly my hubby hasn't been able to resume work due to his condition since before his diagnosis in April 2012.
You do have to get on with life but it's difficult without knowing exactly what's going on with your health.
If you have further instances of bleeding - blood in stool, black tarry stool or fresh blood in vomit take yourself immediately back to hospital.
You shouldn't be left waiting for an appointment in February without any guidance until then, you need to get your GP to clarify what they have been told.
If you have someone to support you at appointments it sounds like you need a wee additional support, someone else to listen and clarify points, it can be difficult when the 'white coat syndrome' kicks in an you forget your chain of thought.
Start a notebook now detailing your journey - before any appointment list any medications you are on, any symptoms you've been having and most importantly a list of all the questions you want to ask - work your way though those and jot the answers down. That way you don't leave with the "Oh, I wish i'd asked that!".
Seek clarification of your diagnosis, is there an obvious cause that you can perhaps cut out and look after yourself better to prevent worsening.
See if your GP can speed up your hospital appointment - at least the liver scan will hopefully reveal more.
I'll sign off now, seem to have made quite a long winded reply.
It's a beautifully long winded reply, Katie! Exactly what I needed.
The cause of my bleeding was because I have 2 varices. One tiny, one bigger, apparently.
I also have a list of other issues, such as itchy skin, hairloss, swollen legs, to name a few.
The gastroscopy report says my co morbidity is "liver disease" and that I have portal hypertension.
These words are totally alien to me (or were, until I consulted google!) as is the notion that I have liver problems. I had never given it a single thought and was floored to be told.
Anyway, thank you so much for your input, it us greatly appreciated.
Now for the pesky sick note conversation with my doc, who just seems to be affronted at my cheek!
Unfortunately sounding like you are towards the cirrhosis end of things, my hubby had to keep going for repeat endoscopies and banding for two years until they were fully eradicated.I think February is too long a wait with such a new diagnosis, my hubby didn't have an appointment scheduled when he was discharged from hospital (hadn't even had biopsy result) so I chased it up with consultants secretary and he was fitted into a clinic for us to find out more.
Hubbies condition is due to (what they've now deemed) auto immune hepatitis so there was little that we could do to stop progression of his illness BUT over the years we've managed to make huge improvements to hubbies health with good nutrition and exercise etc.
Your GP has no business treating you as though you are cheeky for asking stuff, it's your health. GP's often have no clue about liver disease so that's why you need a proper consultation with liver doctor. You need to find out about appropriate diet for your stage of illness.
If you find you really can't function well enough for work then with a long term diagnosis you are covered under the equalities act for reasonable adjustments in the work place or worst case scenario you can apply for benefits - my hubby is on ESA (Support Group), PIP (Enhanced Daily Living and Basic Mobility) and I am able to claim Carer's Allowance to help him with all the stuff I do.
The BLT has good pages on Cirrhosis and living with a liver condition. I found the website an absolute gold mine of information when hubby was first diagnosed. (9 years on he's fairly stable now, doing lots of walking and even mountain biking, fatigue is a problem for him and cognitive difficulties and other bits and bobs but generally he make the most of every good day).
This is really simple, you have to see the liver clinic as soon as possible. Period, end of story. Do whatever you can to make it happen through your gp or another mechanism.
The only bit of good news is that the fact that you were put off might mean that they don't think you are in imminent danger. My best friend had a Liver emergency/episode but then was told the earliest the Hepatologist could see him was in six weeks. He was furious but this was months back when Covid in his area was very bad so he just "behaved" for six weeks. Then when he ended up seeing the Hep his numbers before that he was told to do a blood test and guess what - his numbers had already started to go in the right direction.
Instead of immediately thinking about a transplant in his first meeting with the Hep doc, they were talking about how he can live for 20 years without one.
Point being sometime docs want to see how well you stabilize.
So try to get in sooner, really try, but if you cannot live the best and most healthy life you can until then and you might be happy that it works out quite well for you.
Please note I do not know anything about your condition and I am NOT a doctor nor do I know much about medicine, so feel free to completely ignore me and do something else.
Hi, you do not indicate much about your lifestyle, albeit that these results are a shock, so i presume taking that in context that you are unaware of the things that may have caused this ie abuse of drink, drugs, obesity, autoimmune hepatitis etc. If it is infact a liver disease that has gone through the early stages ie AFL/ NAFLD- NASH- Cirrosis etc then you, as the others have said here, need to get some sort of scan quickly. There are alternate routes if you can pay, and a fibro-scan can be done by a good nurse/Dr in a private clinic, so that maybe, you could have those results, along with bloods, and more specific Liver bloods, when you get to see your consultant. Ie do the leg work for them. Here's the arguments re needle biopsy, some professionals state that the needle biopsy is the best/Gold standard/ for knowing what state your liver is in, and yes it still remains the only way to check actual cell damage. Others say that it only let's the Drs know what is happening in that tiny part of the liver that the needle actually penetrates, also the invasive procedure also carrie risks, albeit minimal. The fibro-scan works by bouncing back signals that try to work out how stiff your liver is in general. It has a fairly high accuracy rate and that combined with more specific bloods, ie ELF, can you give you a good idea of what is going on. Those things you can do sooner than later, before you maybe get an appointment. The bleeding is a concern as are the other symptoms, which do indicate liver damage, but could still be other things. I have had bleeding, where that was in the differential but coming from ulcers, I also have a liver disease, and like you have felt unwell for about the same period, and I am being closely monitored. But again you have to self advocate, you have to try and do as much leg work as you can before you get to a consultant, where you can say, here are my bloods, he is my scan, what now? Could you go to ER and demand they check you that way, ie bloods, CT etc. Are you jaundiced at all, ie colour of your eyes, fluid retention in your stomach. Your liver can repair itself, but it will mean getting to the bottom of what is causing the problem and that you need to find out NOW. I have had to self advocate too, and have been dismissed so many times, it was actually me getting bloods every month that went back to my Dr and put them under his nose and said there, I have stomach pain, bleeding, fatigue and my liver bloods are all elevated. Oh better get you a consultant, that was going to take a few months, so step 2, had more specific bloods and a fibro-scan, and went to the consultant with all the info, and even he was surprised, at the moment I am being monitored to see if diet, exercise, bringing down my BMI, no drink, fried foods etc etc can put a halt on things..
I suppose I'm around 2 stones overweight, but I am not a drinker at all, and never have been, and don't take drugs.
I did smoke, but gave up around 4 years ago.
I do like my food, but am almost veggie, and have been for a good few years.
So the only thing really, is that I love snacks, savoury things, and can be a real binger on those things.
Whilst I've known it's not very healthy, its come as a terrible shock to think I've done this to myself.
Yes, my eyes have a yellow hue to them, and I have a few small areas of blood underneath my (itchy!) skin.
The main thing is fatigue, which is what I first went to my doc with a couple of years ago.
Fatigue and a general feeling of heaviness in my arms and legs.
I have no idea if I have ascites - have always had a pot belly, and nobody has said anything about it when I was scanned (not to me, anyway)
I do have red outer edges of my palms, and some of the spider veins I have seen mentioned.
I'm just trying to gather info, as I'm pretty shell shocked and finding it confusing.
Not really any chance I can pay for treatment or investigations as i am just on statutory sick pay at the moment and spend most of that on cabs to get where i need to go when it's absolutely necessary.
Thanks so much for responding, it is so helpful to have real humans talk to me about these things, rather than trying to understand google results.
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