Had bloods taken February and Ultrasound March and am awaiting results. I gave up alcohol in February which I haven't found too difficult. The sonographer told me quite a bit, apparently pancreas, kidneys, spleen and gall bladder seem to be okay. There is some scarring on my liver but he said he'd seen quite a bit worse. He also mentioned something about the Portal vein but I didn't quite get that.
I thought that I would lose some weight (consultant suggested that I would when I saw him in February) but I still seem to be increasing. Found the consultation quite odd. I was weighed and height measured, no blood pressure taken or examination.
My legs and feet are extremely swollen but I have suffered from water retention for about 10 years now, apparently related to my medication for COPD, have been taking 40mg furosemide daily ever since.
Suffering from lower back pain when upright so exercise is becoming more and more difficult but I'm still trying.
My next appointment with the consultant is on 3rd May (telephone). I find this strange and wonder how this works. I would have expected to receive results by now but they don't seem to be available.
Wonder if I'm right in assuming that if there really was a serious problem I would have been told by now.
Rightly or wrongly, I've been doing a lot of research on the internet and am wondering if my condition is terminal or if there is any chance of recovery.
Just off-loading some of my thoughts really. If you've read this far, thank you for your patience.
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eileenet49
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all of these thoughts are perfectly normal. as a nation we always seem to go to worst case scenario, bad headaches- probably brain tumour (I know this will be true for some, but not most), but usually there is a way to recover and for people like yourself, cutting out alcohol seems to be the first step on the road to recovery, so well done.
I have an autoimmune induced liver disease, so cannot remove the damage, but depending on the extent of damage for you, you may be able to reverse it, because you have removed the cause of the damage. The ultrasound is part of determining how much damage you have and usually if the Consultant was worried about you, you are right, they would see you sooner rather than later. All the measurements they have done are perfectly normal and I have never been examined by any of my Consultants- so again this is perfectly usual. Height and weight are usual, It will help them to determine if you are maintaining regular weight or losing muscle mass or gaining weight due to fluid gain etc,
The portal vein is the main vein feeding the liver and they are looking for two things. Is the flow of blood forward as it should be or has it reversed (not what you want). Also, how is the flow, sluggish or normal. This helps them to know if you have more advanced liver damage. As for getting the results- it is usual to find out these at the next meeting- they don't send them out to you. Some trusts give access to patients to look at their results online, but each Trust has their own system, so you will need to ask them. However, many people get access and Google them and read all sorts of garbage (it's on the internet, so must be true eh?) and then worry unnecessarily.
This site is written with specialists and they have a lot of information sheets available, so you should be able to find out what you need on here, or you could call the Helpline. Avoid dr Google, a lot of info out there is unreliable or confusing. You have every opportunity to recover and even if they said you had cirrhosis (I'm not saying they will), there are many people with cirrhosis who live for many years. It is not a death sentence.
Exercise is good, but mention that you would like advice on how to exercise with back pain and they might be able to recommend speaking to someone. Failing that, there are videos on YouTube that show you how to do Yoga for instance using a chair or wall for support.
You were lucky to get such an informative sonographer, most of them are, but occasionally some of them don't tell you anything. The fact that your next meeting is a telephone consultation suggests your Consultant doesn't see you as an urgent case, but don't be afraid to say you were hoping for F2F. I have never met my Haematologist for instance, but it doesn't worry me.
It sounds as if you are taking the right approach to everything (but stick to reputable sites for research!!) and doing well so far. Make sure you have any questions written down for the phone call, as it very easy for things to go out of your head otherwise .
I hope things continue to go well for you and all the very best
Thank you such much for you response. It certainly helps to hear another view on things. It's not too long to wait now for my consultation, time seems to be whizzing by.I certainly will prepare my questions. I think I saw a list of questions on here somewhere, I'll have a search.
It's a shame more people haven't replied, but from what you say, you have read other posts from others anyway. I did try to locate questions to ask, but had no luck, so I hope you get further than me (got totally distracted reading a rather long post). Glad the time is whizzing by and you are more than welcome for any "help" I can give.
A brief updateIt seems after checking with both GP and Consultants Secretary that both of them were waiting for the other to produce the ultrasound report. Fortunately the GP has now chased the Clinic that did the ultrasound and a copy of the report is now in the 'system'. Would have been a bit of a waste of time having the telephone conversation on the 3rd May without the results.
Anyway, not long to wait now.
Thanks again for the support and listening of members
How nice to hear an update and how frustrating that they were waiting for each other. Unfortunately my experience is that if you don't chase things up, you can soon fall off the radar. Thankfully it is now available to see, so at least you can get feedback on it with the Consultant. Once the ultrasound is done, they usually write them up straightaway, so if your Consultant couldn't "see" it, they should be able to make a quick phone call and request a copy to be sent over from wherever it was done. Unfortunately because each Trust has its own sytem, they can't all access each others' results online, but should be able to get a copy from whoever requested it.Wishing you a good outcome
The BLT has a page dedicated to questions to ask your doctor which might help you with jotting down what you want to ask. britishlivertrust.org.uk/in...
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