My husband, 53 yr old, non-drinker, non-smoker was recently diagnosed with Cirrohis of the liver. But, nothing about this makes sense:
No history of alcohol use
No hep risk factors / No foreign travel
has had high blood pressure for 15 years, well controlled with meds.
has had uncontrolled diabetes for past two years. Has been on mulitple medications (oral and insulin) fasting numbers 190-200 (truthfully, not the best on the diet, but not really horrible, a few carbs/sweets and honestly what he eats does not seem to effect his blood sugar.
Saw a hemotologist because he has low platelet count. EXTENSIVE blood / metabolic workups done, found he has high (esinophils (sp?)) Determined to be an antibody that is causing the high esinophils and in turn low platelets. This was 1 year ago.
Primary care dr has referred to two different endocronologists, both have tried different diabetes drugs.
On three different occassions in the past two years he has had a high fever (103+) of unknown origins, once he was seen in the ER and extensive blood work / urine - no infections, assumed to br prostatitis. Was given Ciphro.
On Mar 20, he came home from work early very sick, chills, fever....had been complaining of a 'pinching' pain in upper right quad, near gallbladder. Has had similar pain that comes and goes occassionally (once a year / two years?) for the past 15 years. Was seen years ago, ultrasound done to look for gallstones - nothing.
Saw primary care physicial on Mar 21 because of fever and pain. Was sent to the hosp for ultrasound, again thought to be gallstones.
Ultrasound showed massive ascites and nodularity in the liver indicitive of cirrohsis. Was sent back to ER for CT Scan. CT showed ascites, portal vien hypertension, esphogeal vericies and enlarged spleen.
ER Doc was a real b!t__ (you know what I mean). Thought he was lying, assumed he was a drunk and basically said - 'Yep, real serious medical condition, you will want to follow up with a GI doc. Do you have internet access? You should go home and read about cirrohsis. This was at 7:00pm on Good Friday. We had no way to reach our family doctor (out of town for holiday) and spent the weekend reading VERY scary things on the internet. Saw family doc finally on Monday, who is a very wonderful, very smart doctor who went thru the results with us. (She also later got a hold of the ER doc and had a little 'TALK' with her - made her cry!!!)
Anyway, hubby has now had MRI, paracentsis and is scheduled for a liver biopsy, but what doesn't make sense and bless you for hanging in there so long :) is that NONE of his bloodwork shows ANYTHING that indicates problems with his liver. Liver enzymes - normal for the last two years, liver function tests normal, billiruben - normal, albumin - normal. THe only thing abnormal is the eos and platelets (and glucose)
Additionally - they have ran EVERY blood / urine / other body fluid test that one can think of and nothing indicates why he has this. No hepatitis....nothing. Additionally, the fluid they took during the paracentisis showed nothing in the fluid. No viral, bacteria....etc. Nothing
He saw a GI doc who put him on Nadalol for the portal vien hypertension and diuretics for the fluid. In two weeks he lost 20 pounds of fluid. Strange thing is that this must have been hanging around for a long time, because his weight has been the same for 4-5 years.
So during the two weeks between visits to the GI guy when the 20 pounds of fluid are coming off, he notices this 'lump' in his groin - there when he stands up, goes away when he lays down. Then develops a burning sensation there as well. On return visit to GI guys, mentions this, doc examines and yep - hernia (think it was because of the fluid....but???)
Goes to the surgoen, need to get the hernia fixed. Sure no prob, we will do it laproscopically and do the liver biopsy while we are in there (hey 2 for the price of 1)! Who is the Liver specialist we should talk to? Well, we dont know yet, still waiting on the referral from the GI doc to the Liver transplant group at Univ of North Carolina. Finally get appt there - Nice guy, seems to know his stuff. We talk about how we got here, what all has happened.....blah blah. Mention the hernia deal and the offer to do the biospy while he is fixing it.
Liver transplant guy says...not really sure we need to do a biospy. WHAT????? Is no one but hubby and I interested in what is causing this? Are we supposed to just say "Oh, cirrohsis, that sucks...hope we can get a transplant before you die." Doesnt is strike anyone but us (and our family doctor) very strange that you have this diagnosis and very little medical 'evidence' to support it? Nothing in the bloodwork, no cause.....?????
If I were a doctor and he was my patient, I think I would try to find out what has caused this. Is it something that is ongoing and will continue to get worse? Or was there a one time acute event (virus/drug reaction) that damanged the liver and yes there is damage, but it is not getting worse (lack of indication in the bloodwork...etc). Is there something going on (Autoimmune) that ties the cirrohsis / diabetes / low platelet wierd antibody thing together?
Wouldn't you need to know that before you thought about a transplant? If there is something autoimmune - could it be treated / would it effect a transplanted liver as well?
I'm sorry, I know this is VERY long and if you have made it this far.....I'm more interesting of a writer than I think or you enjoy babbling! I mostly needed to get this out there, just to see if anyone else thinks this seems odd.
Of course I love my husband and I want nothing more than for someone to say....not really cirrohsis or not that bad....we can treat this, fix you and you can live to raise your 7 year old son. BUt I am a reality based person. I know certian symptoms have cause and effect and I am not in denial - there is something wrong, I know that. I am just trying to figure out 'how' wrong.
Liver transplant guys says...."I would be surprised if you needed a liver in the next three years....I would also be surprised to see you alive in 7-10 years without a new liver". So if you know that liver failure is not imminent....isnt that even more motivation to find out what is causing this - maybe treat it / slow it down....???
Any thoughts / comments would be appreciated. I have read a lot of posts on here and I know that many people are dealing with loved ones in much more precarious situations and please understand that I mean no disrepect to you or where your loved ones are in this disease. I really am just reaching out here for any support.
Thank you so much for reading.