Sorry to pester everyone bit just wondered if anyone has experienced this. I'm on antibiotics for 6 weeks now as they can't drain it so close to the chirois and avms. It's so painful and one point my temperature reached 40.8?
My consultant has also changed is this common? One of the nurses said they swap so they learn more about different conditions but I don't feel very comforted by it.
What can't they drain Alicia? Do you mean you have bacterial peritonitis of your ascites. I sincerely hope you are in hospital.
I have fluid in the liver and I had pneumonia due to ecoli infection. The fluid is in a risky location to my avms so I could bleed to death same reason they can't do a biopsy. I was in hospital 2 half weeks on strong antibiotics but been discharged to take different ones for a month with weekly visits to consultant.
Apparently what I have is rare and a bit unique so they are unsure how to treat.
I wonder if there are any Facebook groups or support forums for HHT. This one is active avmsurvivors.org/group/hht
As it's such a rare condition it's not surprising not many docs have had previous patients the same as you Alicja. Not much help I know.
One website said it was radiographers/ radiologists who knew most about how to treat it.
My husband had several liver abscesses but without any of the other liver issues you have, his had no known cause.
They were only able to drain the biggest one, which was just under 5cm in diameter, they said that draining any more was too risky. He spent almost 3 weeks in hospital then came home and took antibiotics for several weeks, thankfully the abscesses have gone but he's still a long way from recovery, 6 months on. Sky high temperatures & overwhelming fatigue were the main symptoms, not so much pain.
Yes, liver abscesses are rare, no-one can give us any idea of recovery time, and the medical profession as a whole don't seem to know much about them.
Sorry to hear he went through that. I've been on antibiotics for over 5 weeks but still have intense pain, temperatures when I try to sleep, and little motivation.
I'm being accessed in Newcastle for transplant hopefully. But I'm worried they'll just send me home to take antibiotics for longer and hope for the best!
My lft have improved which has surprised me as it sure doesn't feel like it, although its done this on the past only to go up again.
Still have mild jaundice
Tremors in my hands legs and feet
Weakness & fatigue
Temperatures so high (particularly at night) i cant sleep.
Ankle edema that won't budge.
Intense stabbing pain on the right side
Lack of appetite and vomiting plus general issues with digestive system.
Generally bed bound
Keep getting dangerous infections that take ages to go
I have AVMs that simply can not be cured and although not as bad as I was in ICU I think the confusion HE made me unaware of the pain and I have terrible memory loss from the episode which probably isn't a bad thing.
I just hope they overlook the lfts to look at the bigger picture as liver avms plus abscess should equate to transplant anyway as the only successful treatment to improve quality of life for HHT sufferers.
I am so sorry, this would really absorb my thoughts if it were me. I am sure I would be putting castor oil presses on my liver to draw posion out of the abscess and body, it can do that externally. You rub it with organic castor oil, wrap a cloth around it then a piece of wool. I heat the whole thing with my hair dryer, it circulates blood and moves toxins out, relieves pain too. I can also nderstand if this is not something you want to try. I hope for the best and soon improvements...
Looks like they might drain some of the pus in the liver if got worse as they're doing another ultra sound. Although two days in a row they have messed up not booking my scan when they promised that day and making me go nil by mouth.
The doctor wants me to stay in hospital another month on iv fluid. Also on this admission they want to refer to leeds for accessing. X
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