Hi Guy’s
So I’m 2 years and 4 months on from cirrhosis diagnosis along with portal hypertension and baratts syndrome.
I’m none the wiser now than when I was back then, still terrified, still clueless, still not being told anything about my illness or what stage I’m at ( they said at the beginning I had 2 years to live so I stopped drinking there and then and have not touched a drop since)
I was sent for a transplant assessment but was refused on the grounds I have no social support, no family around me or anyone to help after surgery.
Since then I have improved a lot but I am extraordinarily tired and have put on 2 stone in weight.
I hardly ever see a doctor, never my gp, a local specialist maybe twice a year and kings college 2-3 times a year, this scares me massively as I don’t feel like I am being monitored correctly or enough, I’m afraid of slipping through the net and it becoming too late for me to be reconsidered for transplant.
I hate taking all these pills constantly
I’m on this list of pills plus lactol ode which I cannot bare so I don’t take it.
I stopped my medication about a month ago, all of it because I’m sick of seeing all the bad things that can happen. I have not told the doctor.
I have a set of bloods taken a month after I stopped and nobody as usual has explained them to me.
If Anyone knows how to read them could I please send them to you ?
Also if there is any reason I should definitely take one or all of the meds?
Thanks in advance x please let me know if I can post you my results
The situation you are in is an awful one to be in when you have no support or family. By stopping taking the things listed in the photo you posted without telling your doctor you are likely making things worse. You should be being regularly monitored by a specialist given how serious your condition is.
The photo you posted lists two vitamin B supplements—thiamine and a vitamin B compound tablet. These would have been prescribed because a deficiency of B vitamins is common in people with cirrhosis.
There is also a drug spironolactone which helps remove excess fluid from the body. It would have been prescribed because fluid accumulation is a common side effect of cirrhosis. The two stone in weight you've put on is likely to be fluid accumulation because you stopped taking the spironolactone. If I were you I'd start taking it again immediately to see if your weight drops as a result.
There is also a drug lansoprazole which reduces the amount of acid produced in the stomach so it's probably been prescribed to help prevent or heal stomach ulcers and/or reduce inflammation in your stomach.
The lactulose (which you wrote that you can't bear to take) is prescribed to help prevent mental confusion (encephalopathy) common in people with decompensated cirrhosis. You should at least take it if you are experiencing even mild mental confusion. By not taking it you are increasing the chances of toxins building up in your brain and winding up too confused to help yourself by taking the lactulose.
Well said Edward.