Scared to death

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jpmjr1020
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Date Joined Apr 2017
Total Posts : 16
   Posted 7/5/2017 11:49 PM (GMT -6)   
So as of 3 months ago my legs started to swell up amd gums bled as teeth went to crap quickly, and mild jaundice . So I begged my dr for some tests. Drink 3-5 beers on a typical day also take pain meds for my many herniated discs. But other than the legs had been feeling great. The tests the ensued have been awful and each new test leaves my dr with more questions than answers. Currently seeing my long time GP, a gastro, a hematologist/oncologist. Then monday had a fibroscan at the hepatologist who I see on the 14th. I also was supposed to have teeth extractions today but because I had platelet count under 100 which went from 100 t0 56 after a night of heavy depression drinking which I also worry ruined altered my fibroscan results. Which from what I saw were cap of 180 elasticity of 32 or 3.2 if I missed the . But I doubt it.(but i did read recent drinking and high AST could both cause false elasticity) Previous doc put me on spironolactin (sp?) Which abstaining from alcohol for 30 days and the med my swelling dropped and jaundice went away. However in the last month I began drinking again. My fiance and my mom who are heavy drinkers also just quit where last time they didnt so I think ill do much better this time around especially with my kids to worry about.

Just wanted to see what you guys thought and how these results compared to yours or others.

30 yr old male
Below are only the results that were off.

My ast/alt were 98/20 respectively. (Which once before both were in the 200s when I drank heavy)
Blood urea nitrogen was 5 (normal 7-15)
Calcium 8.1 (normal 8.5 as a low)
Albumin 2.3 (normal 3.4-5)
Bilirubin 4.6 (normal .02-1.0)
Vitamin d 25 hydroxy 28 (30-80)
WBC 4.1 (4.8-10.8)
Rbc 3.3 (4.0-6.0)
Hemoglobin 13.5 (15.5-18)
Hematocrit 34.1 (40-50)
Mcv 103 (80-94)
Platelet count 100 (130-460) since moved down to 56
Mean platelet volume 12.5 (7.4-10.4)
Total iron binding 128 (250-450) yet iron is 86 (65-175)
Prothrombin time 24 (12.5-15.1)
INR 2.2 (1.0-1.2)

Ultrasound showed normal liver size etc was a tiny spot of darkness they said could be a tiny pooling of ascites bc of my #s but so small it could be artifact.
Yet my GP nurse said I had portal hypertension yet no one told me that and I get most of my paperwork and didnt see that on any report nor heard it from my gastro etc.

And again fibroscan CAP 180 (which I hear means no fatty liver) Elasticity I believe was like 32 (if American machines use same kpa value thats a bad sign unless it was due to my drinking/AST being over 4x. Typically means f4 cirrhosis)


Hopefully someone has a clue and if it is liver failure a realistic MELD or CP number if you have been more versed in it. Mean time Im planning on calling it quits bc my 2 boys mean too much. Just hope it isnt too late.

Also I showed positive for 1 gene of hemacromotosis and celiac disease which is weird bc as a long term GERD suffered Ive been tested for celiac 5-6x always negative.

Thanks so much in advance and sorry for long article. But ive followed this form for years and I always see people not give enough info.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/5/2017 11:52 PM (GMT -6)   
Also I forgot to note they may have found "sludge" im my gallbladder. And the guy who did my fibroscan was new (first week) and the nurse who was" teaching him" was busy doing paperwork.

ppm guy
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Date Joined Apr 2010
Total Posts : 1081
   Posted 7/6/2017 11:44 AM (GMT -6)   
hi jpmjr1020 and welcome,
Your numbers show many signs of cirrhosis. Glad to see you've been referred to a hepatologist. You will get the answers and some stabilizing procedures if necessary. You must stop drinking NOW, or no dr will be able to help you. YOU have seen the difference, that abstaining from alcohol, will do for your numbers.

You can figure your meld score, using online meld calculators. You will need your bilirubin, creatinine, and pt/inr numbers. some calculators ask for your sodium level also. just google meld calculator, and you will get many, to choose from. Liver failure is always a concern, with late stage cirrhosis.

Your hemochromatosis and celiac, will also be checked out.

Get back to me after your dr visit.. hopefully some of our ALD patients will chime in here.
stopping drinking is the KEY to your recovery. let me know if you have any questions or fears.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/6/2017 3:46 PM (GMT -6)   
Thanks, and Im afraid Im already there myself. Wish my hepatologist appt wasnt so far out. It was made a month or so ago. Im hoping I dont end up having my liver fail. Cant die at 30 and hoping it was just the heavier drinking that made them go nuts for the time being. Wishful thinking I know. Ill def let you know what happens after the appt. Im also starting DDP yoga when it comes in the mail tomorrow. My creatine, sodium, potassium are all perfect not borderline.

I just find it weird besides my legs and anxiety from the tests Ive felt good. I wouldnt have even gone to the Dr if it wasnt for my legs. Just going to start the DDP Yoga, exercise, start the DDP yoga diet. It seems to match up with every liver diet Ive seen. And do a whole lot of praying.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/6/2017 4:33 PM (GMT -6)   
Looks like my meld is a 21 and class C CP. Thats when Im drinking and take the test. My numbers told a different story after 30 days of drinking. Thats the only hope I have. A good portion of those numbers went to the normal or close to normal range. My legs stopped swelling, my color was normal (even though a lot of people think my colors normal vs some think i had mild jaundice. Drs included so who knows. Its summer I thought more tan than yellow). My INR and platelets etc. Seemed to stay off and bilirubin was still high just not 4.6 high and that was only 3 weeks into my month sober. My next blood test didnt come until my month or two of back to drinking. Have tons of excuses why but excuses just dont cut it anymore. Is that a good sign that my numbers started to normalize more and more after each test 2 and 3 weeks in? Wish I had a blood test at the 30th day. Or does that tend to happen? Sorry for all the questions. I just cant wait to see my hepatologist and discuss all of this. I know my fiances levels were out of whack for a bit (not like mine) but now 90 days sober everything is perfect. Also is there any emergency situations I should look for? Like I said Ive felt goof besides my legs. Also would theu give me my meld and CP score based on my tests while drinking or not drinking or both?

Post Edited (jpmjr1020) : 7/6/2017 4:36:04 PM (GMT-6)


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1081
   Posted 7/6/2017 5:47 PM (GMT -6)   
Everything liver related is made much worse by drinking.

if you have bleeding from mouth or nose, or black bloody stools, get to a dr or ER.. since your taking pain meds, stay away from anti coagulants(aspirin, ibuprophen, aleeve)..

for leg swelling, cut your salt intake. no table salt, no processed food. get used to cutting red meats and start eating more fresh fruits and veggies.

Your meld of 21 is high. class C Child pugh(cp) is ESLD. You are right, when you stay sober the numbers improve.

my twin brother has alcohol and hep c hepatitis. he cured his hep c, but continued with drinking binges. He was not so lucky. He now has liver cancer, and been denied a transplant. you mentioned your fiancé. I hope that you both push each other to stay clean.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/6/2017 6:03 PM (GMT -6)   
Thanks for all the info. And if those numbers drop now that im done drinking and stay there do they still say meld 21 and cp of C or go on recent numbers. Because like I said based on last numbers with 3 weeks no alcohol I was like an 8 meld and A CP if I (and i likely do) have corrhosis? Or do they go based over a certain period of time. Because class A and C seems like a big deal.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/6/2017 7:07 PM (GMT -6)   
Also how much blood are we talking? I wake up and spit out blood every morning but its from my gums bc I grind my teeth bad at night. Always have which is why I need teeth extractions. So my teeth, some jagged grind against bare gums, and some have gums growing over broken teeth so they break through while I sleep. I assume by bleeding from the mouth you meant like esophogeal varicies level of bleeding? I used to be a medic, so we focused on emergency care not disease. Also very sorry to hear about your twin. No one deserves this awful almost irreversable disease, and then to be denied a transplant sucks.

I remember as a kid everyone saying we would have bionic livers by the time it mattered and it was better to be a good liver than to have one. Id like to go back and slap us all.

Post Edited (jpmjr1020) : 7/6/2017 7:11:17 PM (GMT-6)


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1081
   Posted 7/6/2017 8:34 PM (GMT -6)   
Yes!!! You're already familiar with varices.Your platelet and Pt/inr
Are quite low.

Your meld score at each blood draw, will be charted, with your liver function tests, and circumstances. Your liver can also improve somewhat when the alcohol is removed.

I had class A cirrhosis in 2013, I quit drinking a while back, and cured my hep c in 2012. My liver regenerated and is somewhat normal again..

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/6/2017 8:50 PM (GMT -6)   
Thats excellent to hear. Hoping I can do the same since it seems to do well when alcohol is removed. Wish drs appointments were so far apart but at least it allows some time to heal as long as nothing bad happens.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/14/2017 5:07 PM (GMT -6)   
Well it's a good news bad news situation. I do have cirrhosis of the liver. However the score was so low that it could have been off by my drinking heavily before my fibroscan so I may just have fibrosis and not cirrhosis. The doctor (hepatologists who graduated first from princeton) says he believes that if I quit drinking that it is 110% reversible that cirrhosis is not the death sentence that it used to be. He also said even though he knows it is caused by alcohol if I agree not to drink anymore he will put down on the chart as he did today that it is due to an iron overload that way if I ever need a transplant in the future they will not require that I do six months of One A Day AA meetings but I have to promise him that I will not drink anymore. He wants me off the Norco he will be calling dr. Detwiler on Monday to inform him I need to be on an extended release OC for my pain management and if dr. denies it he said we will discuss it on my next visit. But if he prescribed me narcotic pain relievers I will have to follow a strict regimen and the blood work in Albany. He also scheduled an upper endoscopy for September 25th to check for portal hypertension, and to have a liver biopsy. Also when I abstained from alcohol for 60 days and had blood work my meld score went from a 22 to a 6 that is why he thinks if I abstain from alcohol that it will reverse because cirrhosis is now reversible in early stages according to him.

Sorry for the long msg but wanted to give you as much information as I could while it was fresh in my head. But everything normalized including my bilirubin etc except for my INR. My platelet level was still a little bit low. So it feels like pretty good news. I read so much doom and gloom online I thought cirrhosis was it.

Also my fibroscan wasnt as bad as I thought. My kpa was 21 so alcohol could have made it worse and I could just have fibrosis since the company claims it can go as high as 29 error if you drink heavy. And i have 0 fat on my liver at 180.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/14/2017 5:19 PM (GMT -6)   
Also scheduled an upper endoscopy for 9/25 to check for esophogeal varices. If its present than a liver biopsy

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1081
   Posted 7/14/2017 7:34 PM (GMT -6)   
I would say that's good news. Your dr sounds great. I hope your endoscopy goes well.

keep in touch, and let us know how your progressing..

Also, congrats on your sobriety, it is the key to your recovery. Keep it up

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/14/2017 10:52 PM (GMT -6)   
Thank you very much. Yours and others stories have helped me down this journey. I havent liked my other doctors but this guy today was amazing. Made me feel confident, like its all in my hand, that hes still going to work on me and not just assume its just alcohol bc I really wasnt a huge drinker. So he is still working to see if he can find an underlying cause and he just recently recertified and knew his 1500 page liver bible front to back. First Dr I havent felt like I knew more than and thats great! Also him playing football and graduating with Jason Garrett and me being a Cowboys fan was also really cool. Will stay in touch and continue praying for you guys and wishing you all the best. I may be new to this forum but ive followed the posts for years so I feel I know a lot of you already.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 7/17/2017 10:10 PM (GMT -6)   
jr...

i have been reading your posts, but don't post so often any more. my partner, mike, is 6 years post transplant now and he has had every symptom in the book.

i am so encouraged to hear that you have become so informed about liver disease and really have taken it very seriously. my partner, mike, was (blessed) with multiple diagnoses: alcoholic cirrhosis, hep c, and heptocellular carcinoma.

as I was reading your posts I figured your MELD had gotten up to the 20 somethings...which can be really really bad.

In 2003, Mike was diagnosed with hep c, did the old treatment (yuk, interferon and ribaviron) which didn't work. His hepatologist told him sober he could have 15 good years, even with the hep c. IF IF IF, he stayed sober. he did not. so in less than half that time his meld score was 26 and he was one sick man.

he needed a transplant right away, or else. BUT, as your doc has explained, he needed the 6 months of AA documented sobriety, and was almost too sick to go to meetings. i took him every day and sat in the car as he could not drive, barely could walk. he was his hospital a week a month for those 6 months. they also made him have a blood ethanol test once a week. to be really sure he was serious about wanting to live.

he got his transplant at 6 months, almost exactly,may 1st, 2011. his meld had gone down a bit but once his tumor was identified, it went up again. unfortunately he still had hep c and the new meds were not available yet. so, his new liver started to get infected. in 2014 he successfully was cured of hep c.

and now his liver has been regenerating we think as his fibroscans are really really good and he feels quite well.

mike is 67 years old...you are half that. you have a whole life to live, a lady who loves you, a career and family to have. it would be so wonderful if you could stay on this good path and cure yourself.

i wonder sometimes if I could have made a difference, helped him cut out the booze earlier. neither of drink any more...well, sometimes i have a glass of wine, but not often maybe 1 glass every month...in a social setting. but he doesn't even do that. he was so sick.

good luck.

mama lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

jpmjr1020
New Member


Date Joined Apr 2017
Total Posts : 16
   Posted 7/17/2017 10:50 PM (GMT -6)   
Thanks for the reply mama. I have been reading yours and Mikes story for years. I feel you have been an amazing partner and did a lot. Trying to get someone not to drink doesnt usually work so you cant blame yourself. My mom is a bad alcoholic but always quits for a few months out of the year which is why I think she avoifdd liver disease. Then again she doesnt go to the Dr. So who knows. Then again she didnt get yellow eyes etc like I did. But anyways when shes asked to quit drinking she drinks heavier and hits liquor instead of beer. Shes a total Jekyl and Hyde person. Sober she makes me proud to have her as a mom. The other 6-9 drunken months my sibling and I could care less if we had to bury her. Ive never seen anyone like her. The second alcohol touched her lips she looks disgustingly ugly, get depressed, stupid, cant stand up and seems like how most people describe H.E. That may seem cold but thats how crazy it is.

I had a single beer in the fridge and Saturday had a bad day so figured Id open it and have some. Well my soon tk be 8 year old walked in and saw it. He knows whats going on his level of intelligence it far higher than 8. And he started screaming "DADDY NO, NO DADDY YOU CANT HAVE THAT!" tears flying down his fake. "DADDY I need you to live! I cant lose you! Ill be a better boy if it was my fault stop it dad!" And I started to cry and handed him the beer and he dumped it, saved the tab for donating at his school came in and kissed me and then hugged me and thanked me and begged me to never do that again.

I explained to him its not like a gun that 1 beer wont kill me but he is right and I didnt need it. But to be honest anyone but my sons I would have told to screw off. So the moral of the story is I dont think you could have done anything. Seeing him like that was not worth it and makes me realize what me dying would do to him. So zi kept on with my not drinkkng, no more beers leftover from months ago. I am nervous though bc I do have a lump behind my nipple and am concerned I may have cancer. And if it spread there id be worried my bumps on liver and pancreas being cancerous. My tumor marker was a 15 last time so he is retesting that. So Im praying I dont have a spreading cancer on top of cirrhosis. After seeing Paul cry like that I would kill me for dying :-p. But thanks again for the reply and sorry for the long stories. Just wanted you to know you did all you could and went through hell and back and I wish Amy was as understanding and helpful as you seem to be.
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