almost didnt make it

[jeffnet]

i vomited 2 buckets of brown and bloody vomit. rushed to the hospital. i was banded x7 2 units blood. i woke up in cvicu. month later renal failure. diagnosed with advanced stage fibrosis with he , thrombocytopenia , spleneomagoly ,chronic low plt ,second fibro test scored severe fibrosis. not a drinker, no hep c, no surgery because thin blood low platelet counts.

[AyrshireK]

Could almost be reading my hubbies story there, apart from the kidney issues most of the same symptoms - even the same number of burst varices. Non-Drinker, negative for all viral causes, no fatty liver. They finally plumped for a diagnosis of cirrhosis due to Auto-Immune Hepatitis following anti-body tests and biopsy. 5 years later, doing not too badly 'stable' & compensated.

How are you doing now? Are they investigating further as to the cause of your advanced liver disease? Are they referring you to the transplant unit even to 'touch base'?

Wishing you the very best of luck.

Katie

[jeffnet in reply to AyrshireK]

well all of them are clueless.. they said i hit the lotto. remains uncontrolled. no surgery because of extremely low plt .

[AyrshireK in reply to jeffnet]

Are you seeing a hepatologist? They need to identify (or at least try to identify) the cause so that you can either receive treatment or amend lifestyle to prevent a worsening or even reverse some of the damage. Even with low platelets (my hubby was reading 22 at one point) he received a liver biopsy (via the safer transjugular route) - you would just need a platelet transfusion first.

You need to push to see a proper liver specialist so that they can treat you appropriately.

Have you had an ultrasound scan? or any other type of imaging?

It's no good you displaying these advanced stage symptoms but receiving no appropriate treatment.

My hubby sees both a local gastroenterologist and a liver specialist in Edinburgh.

If you get no joy verbally requesting the above, then put it in writing. A written letter in your notes means they'd be held to account if you didn't receive the proper care and something worse happened. You don't need to be rude just be assertive and ask for the proper care you need.

All the best, Katie x

[jeffnet in reply to AyrshireK]

thanks for the concern. i do have , names a little different, infectous disease dr and a

Gastroenterologist, and 25 more. every one is stumped. low pllt plus 14sec clotting time and thin blood at 1.1 plus thrombocytopenia. i take over 30 pills a day. its severe fibrosis stage four. they say im a one and only.everyone i see looks heartbroken when they look at me. what are they hiding this time

[RodeoJoe]

I've had a transplant and the cause of my cirrhosis is still unknown. Although speculation is a genetic disease.

[angel195t9]

Thank God You are still here & able to share! So Why did this happen?