Hi everyone, I've been a bit quiet lately but have been reading all the posts it's just that I've had a few problems, not liver related. Family and personal stuff. I last posted that I was due to see hepatologist and went last Monday. Got told I'm being closely monitored for liver cancer - doppler scan appointment arrived few days after. I asked about biopsy and was told not yet it's just that my liver is very cirrotic and has nodules and lesions so just more regular scans. Also, at long last once the hepatologist has received written confirmation that I do not have asthma from my GP he will put me on a drug to lower portal pressure. The clinic was very busy and I went on my own so didn't get chance to ask anything much. So, as it stands I have a grossly disstended bladder, acute bladder retention and cirhossis which is progressing it seems at a speedy rate considering I only had a scan 2 months ago and have to go already for another. I'm posting as so many of you have been so kind asking me to let you know how I got on. I've taken great comfort from the recent posts of such bravery from so many of you who are much worse than me and I am grateful for the amount of liver I still have working. The kindness and sound advice on here is remarkable.
Thanks all of you
best wishes
julie x
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jules45
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Hi, yes, I do care about others suffering when I read some posts on here and feel quite helpless - I think we all do. Gave up smoking today as under the circumstances thought it was about time. Not finding it hard (yet).....
Thanks for posting. A bit of good news about the asthma. Personal family related problems are probably not welcome right now. Obviously I don't know whats going on in your life, but now is the time to be selfish, your health is top priority, try to not let other personal matters affect that.
When I read your diagnosis I knew I was not alone, I was given exactly the same diagnosis as you three weeks ago, I also having bladder problems, I've had this cystitis feeling for the last three weeis, my mouth has been so sore since my operations in June, I have had nystatin x6 bottles up to date, but I'm using the iglu pastilles , my gp has taken me off my bladder pills as he thinks it has made my mouth sore, I have to buy the salivary stimulant pastilles and spray to keep my mouth moist. I now have some incontince and bladder spasms. but you are brave too Julie, how long have you been diagnosed with Pbc? I'm in my 15 th year, I take x2 Urso am and pm (4) total. I'm also type to Diabetic x10 years type 2 ,
Sorry replied before I had said I hope all the family and personal stuff settles down . You don't need stress it makes us ill. Take care hope things improve for you, and I hope the sun shines more xx
Hi, thanks for your kind words, family stuff has been going on for all of my 45 years but have learned to deal with it now. The sun is shining in wales today which makes a change. Hope you are ok.
At the Age of 50 after a life time of family issues( I was adopted) your not one of us you have different blood all so horrible it was making me ill. My solisotor sent letter to say not to contact me or our daughter direct ,so I devorsed them, and I felt so much better no more crap. That was 8 years ago. You stay well try not to let the bad stuff worry you, keep well, x
Hi Jules. The Doppler scan is most likely to look at the portal venous system, the hepatic artery and the hepatic veins. Assuming you do have portal hypertension then the docs may put you on something like propranolol.
Im not sure how much use a biopsy would be? Its used mainly for diagnosis or then sometimes if a treatment doesnt seem to be working.
To check on whether the liver damage is progressing something like a Fibroscan is good and also less invasive. If it was me i would not be volunteering for a biopsy! WHo wants a giant needle when a Fibroscan probe might do
Hi Bolly, long time since we messaged. How are you, still giving sound advice which is reassuring. Funnily enough I did ask about a Fibroscan and was abruptly told "we know your liver is very cirrotic so you don't need one!".
Never pointless asking. Those who dont ask dont get the chance to have what they are asking for.
As you know Jules, there are some liver diseases where the treatment is medication. And there are some liver diseases where the treatment is lifestyle changes.
Where the treatment is medication i guess it makes sense for the medics to routinely check the medication is working - via blood tests, scans, biopsies or whatever. Some medication can actually cause further harm to the liver, so has to be monitored carefully.
When the treatment is lifestyle, as in the case of alcohol or diet i guess, the improvement to the liver health is in the patients hands, not the doctors. So i suppose that may be why your doctors dont see the need for frequent monitoring via imaging or biopsy - your diagnosis isnt going to change, and probably your cirrhosis at this stage (with the symptoms of advanced cirrhosis that you already have) is not going to massively improve.
The best they can do is treat any side effects or symptoms that come along at this stage. They cant 'treat' the cirrhosis itself, only you can do that.
Hi Bolly, I agree with your comments and I often feel like the docs are just making me as comfortable as possible enabling me to live with cirhossis. They do however want me to go for regular imaging. Scan every 3 months - used to be once a year so that has changed. My lifestyle is good, teetotal, don't carry excess weight and gave up smoking on Monday and so far haven't craved one. I am giving myself optimum chances. I drink lots of water (sometimes too much). I can't think of much else I can change. At least if a transplant is mentioned again I will have given up smoking, something I never thought I would ever achieve. I take a fair amount of meds and soon one to lower portal pressure hopefully reducing more varicies to be banded.
Thanks for your info and advice and I will accept whatever treatment hepatologist advises. Must admit, feel already better through quitting ciggies
Hi Julie, have you been sent to a transplant centre even to 'touch base'?
Edinburgh's site states that they would rather see patients too early rather than too late. With the symptoms you are displaying perhaps you should be pushing for a referral to nearest TP centre so that they can assess your case. No good waiting and watching until your cirrhosis becomes decompensated for this - you need to be going as soon as possible.
Even if all they do is say your hep is doing all the right things or stay under your hep with guidance from TP centre. At least you'll be on their radar.
My hubby went to Edinburgh in June 2013 and they took over his care and we then started to go regularly to TP clinic until they felt it was time they assessed him (cut a long story short - Listed July 2014 - delisted again May 2015) but still being closely monitored by Edinburgh incase he deteriorates again.
Great news on the smoking front, if transplant becomes a possibilty then your lung health is a deciding factor on whether its a yes or no to list.
Hi Katie, thanks for reply. Have read a lot of your posts regarding your highs and lows (listed then unlisted). I think, unless anyone else disagrees with me, that living in Wales we are just behind the times. You ask about a transplant centre, it took me 6 years to get to see a hepatologist and at least things are moving on a bit more than they did under gastroenterologist. Used to see him once a year for about 10 mins, took very little interest in my case, bloods now and again, the odd scan here and there depending on his mood. At least under hepatology it's every 3 months, it will be the second one a few weeks ago, lots more get up and go with him. 1st appointment bloods and scan asap and a drug for bowels (not lactulose) which didn't work. Second appointment, more bloods and another scan and hopefully drug - he did mention 2, one was propanol and there was another one I can't remember to lower portal pressure as they realise I would not make it to hospital due to distance if a varicies bled. Air ambulance only works daytime. 2 hours to hospital, take half an hour off for blue lights. I gave up smoking for the reason you gave about lung health and transplant and also wound healing is tricky when you smoke. So, all in all, I'm getting more attention than ever before but feel I'm a bit fobbed off sometimes as I suspect I'm not told the whole story about how poorly I am and they just do the bare minimum. I may be wrong. Thanks again katie, words of wisdom from you as always
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