Primary biliary cirrhosis. YIKES!!

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Marco D
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Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 12:39 AM (GMT -7)   
Well..
I got this PBC thing, bummer! I guess it mostly affects women but I happen to be a guy. Another bummer is Breasts!!! I can't think of anything sexier than a guy with a C cup  smhair   I can deal with everything else the itching, the dry mouth and eyes and even getting a camera shoved down my throat every 6 months or so but the breast thing kinda sucks. I don't think there are many women out there who would want a guy with bigger better shaped breasts than they have, oh well. If I was over weight it could just blame it my fat but there is no way to hide these suckers. I wonder where I will end up?? a D cup DD maybe?? The doc gave me Ursodiol he says it will make my body produce more bile and extend my life a bit longer. Does anybody know if the breast thing will go back to normal? I'm a T-shirt and jeans kinda guy and to tell ya truth they are starting to show under my T-shirt. I found a bra size calculator online and after I entered my measurements it said I was a C cup... darn! I guess the one good thing is that they don't look deformed or anything like that. I think most women would not mind having these. I guess you could say I'm a guy with a nice rack. I just really want them to go away..

**David**
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Date Joined Nov 2009
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   Posted 7/2/2010 4:24 AM (GMT -7)   
I know the feeling. Before my transplant, there were a couple of meds that contributed to mine growing larger. What are you taking, other than ursodiol? As I recall, the spironalactone was the main culprit, though there was something else. It might have been ribavirin.
"No good deed goes unpunished."


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2010 11:30 AM (GMT -7)   

Hey, Marco!  I remember you mentioned this problem back in Feb., but it sounds like it is getting worse.  I definitely think it is caused by one of the meds you are taking.  It probably will not go away until the med is stopped.  Ask your doctor which med is causing this and if there is a substitute you can take that would not have this effect.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Marco D
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Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 11:36 AM (GMT -7)   
Ursodiol is the only thing and something to prevent bone loss I can't remember the name of that but I think he said it was a common vitamin. Funny thing is when I saw a specialist they kept asking about my breast. Questions like have you noticed them getting bigger and I told them no, but that was 7 months ago. It's strange how these things grew so fast and I'm kinda hoping to find out where the cut off point is? I mean when do they stop growing?

Marco D
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Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 11:40 AM (GMT -7)   
Hi HEP93
I remember bringing it up as a question but at that time I had not noticed anything, more of inquiry as to if this really happens and I guess I found the answer. When I looked online it said that this a side effect of PBC in men and did not mention anything about medicine just a side effect of the disease it self.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2010 12:50 PM (GMT -7)   

Well, that could well be, Marco, especially since your doc asked you about it some months ago.  I think you need to direct your questions to him.  Do let us know what you find out!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Marco D
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Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 1:25 PM (GMT -7)   
Hey David..
A silly qustion really but how big did yours get?

**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 7/2/2010 3:10 PM (GMT -7)   
Not as large as yours. I'd say, skinny thirteen year old girl. I was getting to the point where they were almost visible under a t-shirt. I'm also at jeans and t-shirt guy. I had a friend that had one breast grow and the other stay normal. Unfortunately, he developed liver cancer and eventually died.
"No good deed goes unpunished."


Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 3:39 PM (GMT -7)   
Hi David.
Thanks for the info. Next time I'm at my doc's office I will ask him what I can expect. The bummer is my Doc of many years is leaving town. I live in California and the gang problem here is awful and his kids are at the age of starting school, he says there is no way he's sending his kids to these gang infested schools. Bummer. I have to start all over with a new doctor.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2010 5:39 PM (GMT -7)   
You would think a doctor would be able to send his kids to private school.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 7/2/2010 6:19 PM (GMT -7)   
well my guy had man boobs... and he thought the same way... but I loved him no matter what he looked like... self esteem is one of the hardest things to deal with ... with this disease... cling to life... don't worry about the rest... do what you have to... and during a moment of confusion... which you can read in my thread life after no treatment... Mike put on my bra and panties... while it was funny later... I was pretty stern with him at the time.. but since have had many chuckles to myself.. focus on living... the rest falls in places.. u r a hunk inside and out... yellow and whatever you look like... ur beautiful.. land sexy...
There is no pit so deep that He is not deeper still... Corrie Ten Boom


Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 6:43 PM (GMT -7)   
Hi Hep93..
Private school... Not in this town. That's why he's moving his practice away so he has that as an option. To bad really, he's a good guy and one of those no nonsense kinda doctors. I told him once a hate taking pills and normally don't, he was writing something at the time and said with out even looking up "Well, go ahead and die then" he then told me I had an appointment next week and left the room. I just laughed. He emails sometimes and reminds me to take my pills. He's a good guy I will miss him.

Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 7:05 PM (GMT -7)   
Hi arneeb...
That's funny...
I don't think I've reached the panty and bra stage yet but who knows... As far as self-esteem.. Well, I'm a guy we don't have any :) We just exist to try and populate the earth, eat steak and go fishing.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/2/2010 8:01 PM (GMT -7)   
First thing, Connie's going to tell you to stop eating steak. My PCP is like yours. His nurse was freezing a spot off my head one time and she said, "I think David's in pain. Should I give him a shot to numb it." His reply, "It isn't hurting me." He has done an amazing job, from diagnosing my Hep C, through the transplant and beyond. No hand holding, just great medical work. I'm hoping he'll outlive me.
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2010 8:20 PM (GMT -7)   
Marco, he sounds like a down-to-earth guy. Sorry you are losing him. And go ahead and eat steak if you want to--but you'll feel better if you don't.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 8:21 PM (GMT -7)   
Hi David.
Yea my doctor told me to cut back on the beef, something about protein, ammonia, coma and dying. I can't remember exactly but I remember it was a big deal to him so I don't eat much beef any more. It's a bummer because there is nothin like a big, thick, juicy, Rare Top Sirloin.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/2/2010 9:21 PM (GMT -7)   
I hate that coma and dying stuff. The dietitian said once every other week was OK, if the piece was the size of a deck of cards and it's a low fat cut and trimmed, such as round, flank, or skirt (my favorite).
"No good deed goes unpunished."


Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/2/2010 9:31 PM (GMT -7)   
Hi again David..

If and when I eat a steak it has to be huge! like thick and 2 lbs. of glimmering red rare wonderment. With a monster baked potato that looks as if it was grown in a garden at a nuclear energy plant. Yummy.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 7/3/2010 2:29 PM (GMT -7)   
what I learned through this process "real men" may turn yellow... may have big bellies... have "man boobs" that'as all on the outside... but on the inside...... with a wink of his eye.. and a squeeze of his hand... my guy was all man... he took my breath away with just a word... and nothing ever did or ever will take that feeling away.. no matter what... and yes... a real man is the best... fishing.. steak... all of that... so u go guy.. be real..
There is no pit so deep that He is not deeper still... Corrie Ten Boom


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/3/2010 3:43 PM (GMT -7)   
I usually eat more steak than I'm supposed to. If you're going to be bad, why not go all the way. Most of the time I'm good, though I was better, when my liver was failing. At that time, I was almost exclusively vegetarian and it helped. With a new one, things are a little looser. My surgeon told me to not go crazy, but it was all right to splurge occasionally. I didn't go through all of this, to become a monk.
"No good deed goes unpunished."


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 7/3/2010 4:21 PM (GMT -7)   
Marco, hate to tell you but it is common for men to get breasts when they have  any type of liver failure! So sorry to tell you that, Doug did have a testosterone cream to try but it didnt really help.... you could try wearing a snug sleevless t under your regular t, ahh give them a little support and maybe they wont be as noticable.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/3/2010 4:46 PM (GMT -7)   
There are also some elastic garments for the torso that are out now, some shaped like tank tops and some like tee shirts.  Look for Spanx and Slimpressions brands.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/4/2010 6:46 AM (GMT -7)   
Yikes...
So I guess I'm stuck with these things, Oh well. I just wonder when they are going to stop growing? I hope this is it. My gosh the last thing I want is a D cup. It's funny really because I've always been a boob man I just never thought in a million years that I would have a pair. Life is funny sometimes. I will look into all the sugestions that you have all given and a big THANKS!!! to everybody for their help.
Marco...

Marco D
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 7/16/2010 12:04 AM (GMT -7)   
Kinda off topic, I mean the BOOB topic but, Any of you out there with primary biliary cirrhosis (PBC) find away to deal with sleep problems? I read online that sleep pattern reversal is a symptom. It's like I'm wiped out in the day time and wide awake at night. My doctor asked me if I wanted a Scrip for sleeping pills but I don't know if I want to take them. I work 3 days a week 16 hours, 16 hours and then an 8 hour shift not much sleep in-between those days. I think I get about 8 hours sleep in three days. My problem is when I'm off I find it very difficult to fall asleep at night and usually end up taking a nap in the day time, which in turn screws up any chance of getting to bed at a normal hour. Just thought I would ask.
Thanks.
Marco

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/16/2010 7:07 AM (GMT -7)   
I had the same problem. My doctor prescribed Ambien and it worked well for me. Just make sure that you have at least 7 hours to sleep, ahead of you. I found that 5 mg. was perfect, but got 10 mg. pills and split them. My insurance paid for a certain number of pills per month and getting the larger dose, meant I had more than enough, even in a bad month. I rarely took them 2 nights in a row, but sometimes had to. They gave me a great sleep, with no dreams and no hangover.
"No good deed goes unpunished."

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