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Primary biliary cirrhosis. YIKES!!

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Posted 7/16/2010 4:10 PM (GMT 0)
Hi there! I haven't been on the site in a long time...I also have PBC (diagnosed last year @ 36yrs old). What a frustrating problem to have for a guy - but I would love to have that side affect as a small-chested female! Guys get all the good side affects! turn

To answer the question about sleeplessness - it sounds to me like your problem is more about your crazy schedule. Liver disease (I can really only speak about PBC) causes fatigue and there are drugs out there to help during the daytime to increase your energy but working those hours and not getting consistent sleep sounds like the big problem. Any chance you can stabilize your hours to be a bit more normal?
Posted 7/16/2010 4:54 PM (GMT 0)
Hi David.
My doctor gave me ZALEPLON (generic for Sonata) Maybe I will give them a try. With my work schedule I need as much sleep as I can get. It would also be nice to have some normal days off so I can enjoy them.
Thanks..
Marc
Posted 7/16/2010 5:05 PM (GMT 0)
Hi FinnstersMom
I was diagnosed a year or so ago also with PBC. I guess your right the boob thing could be cool for woman. It's funny really I just kinda noticed them one day. They would be easier to hide if I had a weight problem, just that I could say they are Man boobs caused from my fat, but these suckers I hate to say are shaped like normal womans boobs. I would love to know what simptoms you have? I would assume they are the same for a Man (minus the boob thing). Do you have any itching?
Marco
Posted 7/16/2010 5:08 PM (GMT 0)

I agree that your schedule isn't helping matters any.  However, getting days and nights mixed up is something we hear over and over again in here, which leads me to believe it's a common problem with liver disease.  I suffer from it, too.  My PMD won't prescribe sleeping meds because of my problem with illicit drugs--though that was 40 yrs. ago and I've been clean ever since.  She did recommend OTC melatonin.  It does make me sleepy, although if I take more than 1 1/2 mg., I have really disturbing dreams.

Hugs,

Connie

Posted 7/16/2010 5:53 PM (GMT 0)
Hi hep93.
I have a few family members that have/had the Illicit-drugs problem. They all seam to be doing just fine. When I told one of my Brothers about this PBC thing I remember him saying "Dude, If you jjust would of got high when you were younger you would probably be ok". I guess the point is I never did drugs or drank for that matter. Oh well life drags on. Most of the stuff that comes with PBC I can deal with. The "Boob" thing kinda bugs me most. Not to be able to run around with out my shirt on is starting to suck and forget about working out... I have stopped using my BowFlex until I can find some exercises that stay away from building chest muscles.
Posted 7/16/2010 6:05 PM (GMT 0)

I think your brother is very lucky and also misinformed.  I have hep C because of IV drugs in the 60s--which has led to cirrhosis and liver cancer. 

Hugs,

Connie

Posted 7/16/2010 6:29 PM (GMT 0)
Hi Connie..
I have a Sister with Hep-C I do believe she acquired hers the same way. It's strange that sometimes no matter what kind of life a person lived, how we could end up with the same problems later on in life. Life is like the game CRAPS just when you think you got it figured out it can all go sideways real fast. I just take my pills and forget about it. Well.. It's kinda hard to forget the "Boob" thing when they just stare back you in the mirror.
Posted 7/16/2010 6:44 PM (GMT 0)

Marco, so true.  I thought I'd put all that behind me and had given up alcohol, too, 7 yrs. prior to being diagnosed with hep C.  Just when I thought I was fine and doing well--I got a big surprise.

Maybe you should consider a breast reduction.  turn

Hugs,

Connie

Posted 7/16/2010 11:52 PM (GMT 0)
Marco - yes and no to the itching. Initially it's what got me into the doctor (I was CRAZY with itch while I was pregnant, they thought it was a rare liver condition associated with pregnancy and it would go away as soon as I gave birth). The itching went away for a short while, then returned when I stopped nursing (weird coincidence?). I thought it was an allergic reaction to something. Luckily my family doc put 2 & 2 together and got me to a liver specialist right away. They said that I would have probably gone undiagnosed until late stages had I not gotten pregnant and itchy.

Until the Urso started working I was very itchy - my hands would bleed sometimes because I'd go at my palms so badly. But with the Urso and diet controls, along with getting sun, the itch is under control. If I have a steak, fatty meat of any type or alcohol, I feel it the next day.

What are your symptoms? How did they find it? I don't know many (or any) others with PBC, I'd like to hear your story.
Posted 7/17/2010 2:25 AM (GMT 0)
Hi FinnstersMom.

Well..
I guess you can say it started about 15 years ago. I went to get some life insurance and I was denied based on the insurance companies blood tests. I called them and asked why and they said they could not tell me. After badgering them and my insurance agent my agent told me that they said I might have hep-c. So off to the doctor I went and got tested and I was negative for hep-c or any Hep for that matter. The doctor I had at the time said there was nothing wrong with me so I forgot all about it.

Then about 5 years later while I was in for a physical at a different doctor and she noticed that my urine was dark and ordered some blood tests. Those tests came back with some funky liver level so she set me up with a specialist. After all kinds of test and lab work and about a inch away from a biopsy the specialist changed his mind. You see my lab work would come back from what he would say "horrible" and then it would come back fine, they seamed perplexed that I always had an enzime that was floating around in me that is common to pregnant Women.. I showed no outwardly symptoms and ultrasounds of my liver looked ok. He said he didn't want to go in take a chunk of what he thought was a perfectly healthy liver and stopped everything right there.

10 years later and a new doctor.
I went in complaining of itching and being tired all the time. He ran some lab work on me (liver lab's) and said hey!! You got something going on here. He diagnosed me then with possible liver disease and sent me to the Liver center in San Francisco for a checkup with a specialist. After getting seen by the specialist and got all his lab work back he suspected PBC or some autoimmune type of Hep. He set me up for my first liver biopsy and when the result came back I was officially diagnosed with stage 2 PBC. All the Doc's think it's kinda strange that I have roamed around for 15 years with untreated PBC and am not in worse shape. They say left untreated you have a life expectancy of about ten years.

I could get pissed off at that doctor 10 years ago that let the PBC diagnosis slip by but hey.. What can you do. People make mistakes and besides If you put aside the itching, sleepless nights and of course the "Boob" thing I'm really not that bad off.

Marco
Posted 7/17/2010 3:31 AM (GMT 0)

Hey, Rick!  Good to see you here!  Was it Bag Balm or Udder Cream?  No joke...these are real things and I know they've been mentioned in posts for itching.  Not to be used on your man-boobs, Marco.

Marco, was the "enzyme" AFP or alpha-fetoprotein?  It is seen in pregnant women, but when seen in men or non-pregnant females, is an indicator of liver cancer.  I have it, but it was never especially elevated when I had liver cancer, although it is always present and around 8.5 to 11.

It seems that docs have a difficult time diagnosing autoimmune diseases.  I think one of the reasons is that they mimic other diseases, but aren't textbook....so that stymies them.

Hugs,

Connie

Posted 7/17/2010 4:25 AM (GMT 0)
Hi Connie.
I can't remember the name of the enzyme but my present doctor would have noticed something like liver cancer.. I told him about it when he first found this PBC thing so he has been on the look out for just about anything wrong with me. He makes me get blood tests ever 3 or so months so I'm pretty sure if I had that it would have popped up some place along the road. Oh... and they are not "Man Boobs" :) they are starting to look like regular old female boobs. I'ma guy with a nice rack! Go figure. :) Somebody please tell me when they STOP growing.

Marco

PS.. "Bag Balm or Udder Cream"???? What the heck. Where the heck would you buy something called "Bag Balm or Udder Cream"?
Posted 7/17/2010 4:30 AM (GMT 0)
Bag Balm is great stuff, though there's this stuff by the name of Lotil. Vermont country Store sells it.
Posted 7/17/2010 4:31 AM (GMT 0)
Hi timeless.
Cooties... To funny. How big did yours get and when did they stop grownig? This thing is funny it's like just one day I noticed it. Man I tell ya there is no way I want a D cup! Just imagine what some woman would think the first time she saw you with out your shirt off.. Yikes! And there you stand in all your D cup glory.

Marco
Posted 7/17/2010 4:32 AM (GMT 0)
I've actually seen it at Walgreen's. In fact, I've used Udder Cream for hand lotion.

I didn't mean to imply that you had liver cancer. My point was that there is something called AFP, which is usually only seen in pregnant women. However, when seen in men or non-pregnant females, it can be a cancer marker. As I said, I still have it in my blood work, but I've been cancer free for 3 yrs. (as far as can be seen by MRIs and blood work.)

Hugs,
Connie
Posted 7/17/2010 4:46 AM (GMT 0)
Hi Connie..
No worries, In no way did I take it as you implied. In fact the concern was heart felt.

Marco
Posted 7/18/2010 4:32 AM (GMT 0)
Marco, Dont laugh but along with bag balm which Doug used....lol we bought it a peaceful meadows ice cream store. Burts Bees also has some awesome balm products, those you can find at Wal-mart and they are parafen free. Okay Peaceful Meadows is a dairy farm so they promote bag balm as it is used for rough hands caused by farming and milking( no pun intended regarding you large breasts). There is no time table for the growth to stop it is individual, If I had to guess Doug was a full D.... redface !

Sue

Posted 7/18/2010 5:09 AM (GMT 0)
Does anyone think we'd have this many replies if it was Marco's ankles that were swollen? Having gone through this, it was demeaning, on top of feeling generally lousy. Had I known about HW, at least there would have been some laughs involved. Then, there was no one to talk to about it. Your comments would have made me feel better. Even now, they do.
Posted 7/18/2010 2:05 PM (GMT 0)
shadowsghost....
A "D"???? OMG!!! I hope not.... I guess you have to laugh just to deal with it. I'm 5' 10" and a 170lbs and a "D" well, OMG!!! This is just to funny. I don't think with my build that if I were to get up to a "D" size I would be able to hide those suckers. darn! Um.... Well, Oh well... I would hate to be known as the guy with a nice rack. I guess you just deal with it. Funny thing is that I have always been a boob man, I just never thought in a million years that I might get a chance to admire my own. Oh well. I really don't think a woman would dig a guy with a D Cup, but then again..... Who knows. Life is funny sometimes ya know.. It twists and turns and edging towards the end it still has many surprises left in store for you. I think you just have to laugh sometimes.
Marco.
Posted 7/18/2010 4:17 PM (GMT 0)
Marco....Mike used the Bag Balm... he had horrible itching... and the Bag Balm turned it right around... one of the ladies that I work with at work uses this also for a similiar skin condition and it was prescribed by dr. honestly without giving details... when I met Mike he was 165 pounds working construction... and drop dead good looking... a hunk... we walked through this path together for 6 1/2 years... his weight went up to 250 at one point then dropped to 209 at the point of his death... but I never once saw him any differently than that first moment I met him on that construction site... and when those man boobs showed up... they just became part of this wonderful man.. and I loved them too... and we had jokes and fun... that are not appropriate to write here... but we were given the grace to pass through this.. one day at a time... you are a wonderful package even with your new addition...
Posted 7/19/2010 5:57 AM (GMT 0)
Marco and David, Humor is your best friend, laughter can make you feel better even if just for a moment. I know the breast thing isnt really funny but if you cant find a chuckle in the things life throws at us we would all have such a miserable existance. Doug and I would find humor in so many things, sometimes his hepatologist would look at us like we were crazy( till he got used to us ) it sure made all the hours in an ER , hospital room or Dr Appt go by alot quicker and easier! I can tell stories that would have you laughing to the point of tears..... and believe me he laughed his way through almost ten years beyond what DR's thought. He even had his stupid grin and chuckled his last day with us....... so Marco you have boobs and I bet a nice set too...... when you get up in the morning or evening depending on your new sleeping habits look at them and think......hhmmm I still have another day and chuckle they are temporary.......cause you will survive and they will be gone....... just stay out of Victorias Secret

Sue

PS swollen ankles..... not as funny you have to admit

Posted 7/19/2010 8:17 AM (GMT 0)
I was reading on Spironoladactone.. or Aldactone... one of the side effects is breast enlargment... and Mike was on this also... just a thought

Posted 7/19/2010 12:06 PM (GMT 0)
Spironalactone is exactly the cause, at least in my case. My doctor warned me, before I took my first dose, as did the drug literature. It also makes your breasts hurt at times.
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