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Posted 6/6/2013 2:29 AM (GMT 0)
Hi:

I was diagnosed with congenital hepatic fibrosis (cirrhosis of the liver) Nov., 2012. I have been taking my meds as they were prescribed to me. The last couple of weeks my left foot and leg have been starting to swell again. The right one is normal size, and wonder if I should see the doctor again or increase my lactulose from twice a day to 3 times. Why is only one leg swelling?

Thanks!

Bebo
Posted 6/6/2013 2:43 AM (GMT 0)
Hi, Bebo. Thanks for posting in your own thread. The swelling in your left leg sounds like more of a fluid retention problem. Why one leg, I don't know, but I've experienced the same thing with one foot and ankle being
swollen. Do you take diuretics/Lasix (furosemide?) As far as I know, Lactulose does not work on fluid retention, except maybe through loose stools...but it would be better to watch your sodium intake (no canned food or cured meats) and elevate your leg.

Can you speak to your doctor about this, without having to go into his office? I hope you are seeing a hepatologist.

Hugs,
Connie
Posted 6/6/2013 2:46 AM (GMT 0)
See doctor so they can rule out a blood clots in the one leg.
Posted 6/6/2013 7:37 AM (GMT 0)
Thank you for your quick response.

I have gone ahead and made an appt with my internist and will be asking her for a referral to a hepatologist in San Diego. I have been seeing a gastroenterologist and know that I need to see a specialist, at this point. I am on Lasix but was told to take only half a pill a day. He told me that he is concerned about my kidneys and is trying to keep them as healthy as possible. I took another Lasix pill this evening (not half) and am releasing a ton of water. Hopefully, the swelling will go down by morning.

Thank you, again, for your help! I truly appreciate it.

Bebo
Posted 6/6/2013 7:09 PM (GMT 0)
Bebo, it's very true that diuretics can cause kidney problems, but at times you need to take a little extra. I am taking 20 mg once a day, but the other day had to take 40 mg. I am going to try to reduce it to 20 mg every other day soon, in the interest of keeping my creatinine and INR in the normal range. (That's the dosage I was taking until about a month ago when I had pleural effusion (fluid in lung) and the pulmonologist changed the dose to a daily one. It did no good, so I may as well switch back.

By all means, request a referral to a hepatologist. You may get some resistance from your GI doc, but be persistent.

Hugs,
Connie
Posted 6/6/2013 9:43 PM (GMT 0)
The swelling in my feet and abdomen have gone down and I thank you! Thank you, also, for explaining how I should not be afraid to take extra Lasix if I have to. I am always learning and so glad that I found you!

I am sure you will be hearing from me again. Have a wonderful day and God bless!!

Bebo
Posted 6/6/2013 10:24 PM (GMT 0)
When my hubby's legs would swell, we would up the lasix (double it) for a few days, until swelling went back down. Balancing kidneys vs swelling.

We found that if he slept on his left side, his left leg and foot swelled more, so took to laying on his back. We also found that when he was up and about more, rather than resting, he swelled more. Hope you are doing better.
Angie1953
Posted 6/7/2013 1:08 AM (GMT 0)
Keep your feet elevated as much as possible. My left leg and foot swelled up more than my right ones. My docs said it was probably because as a teenager I had gangrene in my left calf. During the operation to open up the infection, I had a transfusion that is what gave me Hep C. That was in 1964.
Posted 6/7/2013 2:16 AM (GMT 0)
Yes, elevation also helps.

Hugs,
Connie
Posted 6/7/2013 2:18 PM (GMT 0)
Hi:

Thank you all so much for your input. I tend to sleep on my left side as well, so I will start sleeping on my back. I am constantly elevating my legs and don't cross them as that cuts off circulation. I have also noticed that the more that I am up and around, my feet have swelled by the end of the day, so I knew that was a problem. Thank you for your input. i needed it! I just feel so guilty sitting all the time and fear i have become a couch potato. I will start using the Lasix as needed, increasing the dose when swelling starts. Your comments were all very helpful, and I truly appreciate it, from the bottom of my heart!!
Posted 6/8/2013 2:15 AM (GMT 0)
Bebo,
I know my hubby felt guilty about sitting alot...actually laying down a lot, but was the best way to deal with the swelling.

Thinking of you, take care of yourself. It is a constant balancing act...up and about...swelling...sit back down...swelling goes down some....swelling for no reason that you can tell (my hubby ate a jar of pickles...that will do it.) Anyway...lots of knowledgeable people here that have been through a lot and will share info with you.
Angie1953
Posted 6/14/2013 12:07 AM (GMT 0)
Thank you so much for your input Angie. I need it! :)

I have been having some sleepiness nights these last couple of days and don't fall asleep until 5:00 am!!

I know that there isn't much that the doctors can do for me, but I have made an appointment for a second opinion with a hepatologist in San Diego. The first doctor that I saw was not very informative and neglected to tell me things like the importance of a special diet, at which stage I am, etc.

Wish me luck.

Bebo
Posted 6/14/2013 3:51 AM (GMT 0)
Bebo, I know Mike felt the same way. He hated sitting and raising his legs. He used to get angry and say I'm not a baby. It's not easy but if it helps.. then it's worth it. One day at a time is all we can do.

Sandia
Posted 6/14/2013 2:19 PM (GMT 0)
We got a reclining chair for Mike so when he was "resting" he was in the chair with legs elevated or on the bed. I found a large triangle pillow with about a 3 inch rise.  It is big....from his knees to his feet, so we can elevate his legs above his heart both in the chair and on the bed.

Even post transplant he has days that he uses the pillow.

Best,

Mama Lama

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