Non alcoholic cirrhosis

Hello all. Im new here. I had to reach out to others going through what I am! Im so down & so scared!!!!! My abdominal veins have been bulging through the years but the last 2 theyve surfaced & are huge. Last 4 mos have had severe pitting edema head to toe. My Dr's here arent much help. One passes the buck to the next. I keep getting more & more feverish & lethargic & my pcp wont listen. I have Leiden factor 5 & Lupus like Inhibitor, Morphea Scleroderma & history of multiple blood clots(12). Fibromyalgia, arthritis, back degenitive disc disease. My pain is unbearable & now a month ago ct #22 over the years, shows my liver is massive & spleen too. I also have very high liver enzymes in a cbc, very anemic. i can access my chart thru my hospital but dont understand all the cbc readings. Some things show high, some low on cbc. My own pcp never told me how huge my liver was on ct scan, my hematologist did.My pcp told me my liver readings were very high & she was sending me to a liver specialist but that was almost 3 weeks ago now & still no word. my hematologist sent me to a gastro. i feel time may be of the essence & theyre not helping me fast enough. My fevers are as high as 101 at times & I am becoming more lethargic & feel something wrong (scarily) with my brain. Docs said they only go by what an oral thermometer reading & when they take my temp with that its only 98-99. So no fever according to them but the pre surgery nurse did it with the forehead scan & it read 100.4. I had a lymph node biopsy of my inigual nodes last week as all my glands are now painful & swollen. More pain! It came back benign, which is good but no answers there. My gastro Doc believes I have non alcoholic cirrhosis & is ordering a liver biopsy & endoscopy/colonoscopy soon. Have to use Lovenox to bridge my inr/coumadin. I am very scared, im 46 & have no clue why I can have cirrhosis. i never drank heavily- stopped entirely in my 20's. i have been on Dilaudids for my chronic pain for almost 2 yrs now. i never take more than prescribed. My breathing is also getting worse along with mental confusion (mild). It scares me how sick I feel & my Docs all want me to come in 2 weeks from my last appts, meanwhile I know I am getting worse & feel so feverish & no appetite. I take my temp with my forehead thermometer & fevers are never below 99.7 & go up to 101 now. im on lasiks but hate them due to getting leg & hip/foot cramps even with the extra potassium paks. The mental confusion & lethargy is terrifying! Any advice or kind words greatly appreciated! Thanks!

Post Edited (RainiePie) : 3/4/2014 12:50:54 AM (GMT-7)

Rainie,

Welcome to the forum. As David said, you will soon have a better picture of what's going on.

Sounds like you need a new PCP that will "listen". Your other doctors would be fired if they were mine and "passing the buck" with regards to MY health. I recently fired my new PCP because she was NOT listening to me. I told her that this isn't going to work out, she had way too much attitude and tunnel vision.

Don't let them drop the ball on your testing, the sooner the better, enlarged spleen/liver, not good. Be your own best advocate and stay on top of this. If your gastro drags his feet, make an appointment with a hepatologist who specializes in these things.

Others will chime in with their personal advice, good luck to you and please keep us updated on your condition.

Thank you all. I forgot to add, I dont have any hepatitis, not a b or c. I was told by gastro, that its my scleroderma attacking my liver. They also think I have Lupus but have a negative ana. Ive got an appointment to see my gastro sooner than when they wanted.
I want the endoscopy asap. I just want to know if it is in fact non-alcoholic cirrhosis.

I sure will. Thank you all for the advice & support. I have no support & I need it. Its awful being so sick & not knowing why.

Thank you. No, I dont have much support at home. My ex husband & my 17 yr old daughter are all I have. There arent any support groups because Ive looked. Its hard going through it all alone. Ive been through a lot, but we all have right? I am very strong & I always feel stronger after a good cry. Thank you all again. I love this site! Its very supportive & informative & helpful. Love it!

Thank you Keith. , yeah the Providence hospital I see my pcp & specialists at is in a small suburb. My pcp flat out lied to me today in an email. She now denies my liver is enlarged via my ct scan but my Hematologist told me that same day it was "massive" & asked if my pcp had told me yet? My pcp only said my liver enzymes were very high & didnt mention its size. A week ago my Gastro said he could feel how big it was in my exam. So yeah my pcp has got to go. Now since she backed out also on my pain med refill, Ill be out for 3 weeks until my new pain Doc appt so Im trying to get my records from NM pain clinic up here asap. Im scared & worried that Ill suffer all that time. Im on a pain contract from NM and may have to visit them 1 more time for my 3 month refill. I lived in Albuquerque & I sure miss my care there. Now today I noticed a hard mass under where last weeks inigual node biopsy site was & it is now the size of a baseball maybe bigger & red. Im trying so hard not to go to an ER since the nearest one to me is 30 miles 1 way & its storming out & dark right now here- 55 mph wind gusts & pouring rain. If it isnt 1 thing, its another. Im trying not to be down but its hard sometimes. I just tell myself well, I could be in N Korea or the Ukraine right ? Coming here is so nice to interact w people who know what its like to live with this. I see my Gastro friday & am going as a walk in tomorrow morn for my now hugely swollen abdomen & this huge red lump under my surgical site.

No Providence that I go to is small & its in Newberg Oregon.

Hey there OR Rainie Pie... like the name... ML is right!! Go to a university. Your life is worth it!

@ML that was funny... and makes sense.. we should put that piece of advice at the top of the forum with a special tab.. Do go to a place that makes money doing a zillion colonoscopies a day... that made me smile but it is oh so true!!

Hang in there Rainie and yes we are glad to have you here also!!

Sandia

Thank goodness someone is finally listening and taking you seriously. That infection explains your high fever complaint. Glad the antibiotic is via IV, so much better and faster.

Now I hope they get to the bottom of all your symptoms, good luck RP :)

Mae

They rarely use needles to drain an abscess now. I had one on my scrotum and they cut it open with a 1 inch incision. That way they can drain and look for dead tissues which can become infected. In my case it was infected and had a ton of dead tissues

Hi Rainie,
Sorry to hear all that is going on. Since you have autoimmune issues already, it is possible one of those is affecting your liver as both sclero and Lupus can...but it ispossible you have an autoimmune liver disease. There are a couple and a biopsy will confirm what's going on. Aside from pain meds, what meds are you on?

RP,
Sometimes, doctors have to hurt you, in order to fix you. There may be an occasional sadist doc, but most of them are trying to do what's necessary, as expeditiously as is possible. I find procedures are better done quickly. It's like the difference between peeling off a band aid slowly, or ripping it off in an instant. Better to get it over with in a trice.

As far as cutting open an abscess, that's the right thing to do. Draining it with a needle often results in an infection later on. Better to get it done right the first time.

I dont know what to do now but give up & cry. My pcp is no help, Hematologist is no help & by no help, I mean theyre not testing me or advising me what to do & all I see is them expecting me to return for office visit after pointless office visit even though its a 85 mile RT for me & the only ones benefitting from these visits are them making $ off my insurance. I just found out my NP is leaving. She is the only person that cares for her patients, the whole community knows it & the worthless other Dr's and NP's are staying & she told me theyve made her life hell. I now have no one decent to go to. My wound is now soaking through a towel an hour. Yet my surgeon expects me to wait 3 days to see her at my follow up. I asked her why a drain tube wasnt placed in the first place & she wouldnt give me a straight answer. She tried to say we discussed it before & thats a lie. So now I have this 3 inch gaping, draining hole that is just leaking fluid like crazy & no one to help me with it. So Im going to just keep putting sterile gauze into it & tape that & hold towels against it until someday it stops, because Im not going near that surgeon & no other surgeon will probably help me because they always want u to go back to the surgeon that did that to u in the first place. So Im screwed, Im sad, and the lymph nodes in my arm pits now hurt more on top of all this. I have no hope here in Oregon. All Docs stick together & they dont care about the oathe they took, they care about the title & the $, period. My Docs in NM cared. In Oregon its the opposite. Im going to cry this out & see if I cant get my NP to refer me to a new pcp before she leaves. Another caring NP chased off by horrible non caring ones. How sad! She will be missed by many. No Im not being treated for my Lupus or Sclero, my new rheumatologist said I didnt need anything at this time & ordered no tests nor added or changed any meds nor asked for my NM records. He couldnt wait to get me out of his office fast enough. What else am I to do?