Fluid Retention

Good Afternoon,

I have not posted in awhile. Why? Because nothing has really changed. Still having fluid retention. Mostly in the stomach, below the belt and the chest area or from my neck to my scrotum. My legs are not that bad. Still have some scabbing from small ulcers and blisters on my lower legs.

I saw my liver doc in August and he more or less said I do not know what to do with the fluid problem. He said he cannot give me any more medication. I take 120 mg.'s of Furosemide (Lasix) and 300 mg.'s of Spirolactone and 3 or 4 tablespoons of Lactulose along with an over the counter drug Magnesium Oxide 400 mg.'s He referred me to a Nutritionist and she didn't tell me what I already know about a low sodium diet. My doc also said when I walk into his office that I do not look like I have any disease at all. Looking is one thing but feeling is another. I fluctuate in weight between 230 and 240 pounds. In January I was 210 to 215. I have been trying to walk lately to burn some calories but my right foot becomes numb and starts to throb. Both legs get week after awhile and I slow down to a crawl. I am just carrying around too much weight for my legs to take. Just cooking a meal and doing a few chores and I am wiped. Then I lie down and start cramping from over doing it.

I have a lot to be grateful for. I do not look sick and do not have many of the symptoms like Bleeding varices or Encephalopathy, jaundice, etc... It has been 5 years since I became asymptomatic or entered the decompensated stage. I do not know how to lose this weight and I dread the cold weather coming. Another thing is I am hungry all the time. I read that people with cirrhosis are always hungry and should eat 3 good meals and 4 snacks a day. I try but I need something like pasta or potatoes to fill me for a couple of hours. I eat salads 3 times a day and it does not cut it. I am ready to eat a half hour later. I thought of trying the Atkins diet after I eat all the carbs I have on hand and stop buying foods high in carbs and buy more protein food. Will this help? I do not know. The problem is and has been that the diuretics are not getting rid of the fluid as well as they used too. Any suggestions would be appreciated. Thanks.

Mike I just remembered....5 years ago at a Newport wedding, my sister talked me into taking two of her lasix pills because my dress was a bit tight, felt bloated. Knowing it was a bad idea, I did it and boy did I suffer!

I tried to leave after the reception, but I could barely walk. My toes on both feet were gnarled and I was in so much pain. I asked someone to go back in and ask the bartender for tonic water while I hopped around trying to work it out. Too painful to stand or sit.

The lasix knocked my potassium so low, I believe that was the reason. I didn't drink enough fluids either, who knew?
Anyway, the tonic water followed by plain water took it away in minutes.

There's something to add to your diet, bananas!

Thanks for the quick replies Mae Be Here & SyXx. I'm not sure what you mean by TP. Are you talking about the Tips procedure? My doc said maybe down the road in the future. We also talked about a paracentisis which he is totally against even though I had 3 of them done a few years ago. I tried to get him to O.K. a paracentisis before the summer.He set it up, only they would not do the procedure when I went to my appointment at the MGH because I didn't have enough fluid due to the results of the ultrasound they performed. Tonic water makes sense because it has a touch of quinine in it. My Potassium was within range on 08/13/2013. Sometimes it is not the potassium but it is the magnesium, calcium and zinc which the body needs. I was taking Quinnalon for a year or 2 but i still got cramps, sometimes. I guess it works a little. My insurance paid for it back then, but after they put me on Medicare, they stopped. First Health wants me to pay over $100 dollars a month for the prescription. I would pay if it worked like a charm but for me it doesn't. My PCP gives me ten 1 mg.'s of Ativan, 3 or 4 times a year. I cut them in half only if the cramps continue for over an hour.

Mike,

TP=transplant

Hi, Mike, and welcome back!! I know your main problem has always been fluid retention. I'm sorry you are still experiencing this. Do you have hep C? I've forgotten.

Diet: Really watch your sodium intake. YES, try eliminating simple carbs like refined sugar, pancake syrup, cookies and other desserts. Complex carbs like pasta and potaoes should be okay IN MODERATION. A cup of either should be sufficient, especially if you are eating it every day. Make pasta whole wheat. If rice, make it brown rice. Try a stir-fry on brown rice. Focus on protein. And elevate your legs as much as possible. Also, anything with fiber will help fill you up: Popcorn, as David mentioned, plus fruit (watermelon will fill you with very few calories), Fiber One bars, This should help with losing weight.

Just as you read labels for sodium content, read labels for CORN SYRUP. It's in almost everything. Those things, you want to steer clear of.

Also, the diuretics have a boomerang effect when the dose keeps being increased. It stops working. I'm very surprised that your kidney function is normal. Try DECREASING the Lasix to 100 mg/day and Spironolactone to 250 mg. for 2 weeks. If that goes well, try decreasing a little more. The result should be that you are peeing more and retaining less fluid than on such a high dose of these meds. Try it. Nothing to lose.

I take magnesium oxide 400 mg twice a day, ever since TP. And it still runs low. To add insult to injury, my insurance won't pay for it.

Hugs,
Connie

Hi Mike,
I'll be at MGH on October 9, mid morning, though I could stay into the afternoon. I know how you feel. I waited 4 years with a MELD score of 11 to 15, most of the time. The last year, it went all the way up to 18, dropped to 16, then in the last month got to 17, then 18 and the last few days before transplant went from 18 to 24. Never thought I'd get a transplant, just would be sick for the rest of my life. I never thought I was on the list, but was told I was "in the pipeline." You're on the list, just low, until your MELD starts rising above 16-18. Hit 18 and you'll be doing blood work weekly.

Pratt was a good guy, but his PA, Abigail was the one who got me through everything. She left MGH right after my transplant and then came back last year. Now, she's working on the transplant team. If you get a chance to get to the transplant clinic on the 9th, that would be great, but don't strain yourself.

Post Edited By Moderator (hep93) : 8/29/2013 8:21:02 PM (GMT-6)

Stay with it, Mike. If you ever need to talk, I'm around.

Hi, 209Daddy, and welcome to the Hep forum. I see that you normally post on the HIV/Aids forum. Do you have a liver condition? If so, please start your own thread. Thanks for the input on Mike's problem.

Hugs,
Connie