Sudden edema to bibbit

Hi,
I am week 7 on solvaldi and olysio. In week 6 I suddenly developed edema in my feet, and ankles. It does not look extreme but I have not ever had edema in my ankles and feet, I have twice healed myself from ascites, I am a cyclst and hula hoop dancer, I spend 5 to 7 hours a week exercising. I have no more than 400 mg. of sodium a day. I have had hep c for 42 years, trated 9 years ago with ribavarin and interferon for a year to no avail, this is my second treatment. A little over a year ago, I was able to be engaged in endurance exercise 10 to 14 hours a week, that suddenly changed and on TX I am pushing to get in 5 hours. I have f2 scarring of the liver, I have a lot of cirrhosis. I am curious to know if anyone else is experiencing a sudden decline, also if anyone on this particular TX is experiencing edema. I fear I will be taken off TX. I had a major bleed out in April, I has developed varacies of the ephsogphaus. I had two blood transfusions then began this new TX.

Post Edited (Turns) : 6/22/2014 4:27:57 AM (GMT-6)

To bbibt

There is a new machine they used on me. Sorry when I am distraught, I am mentally confused so forget that, I will try to recall how that went exactly, but yes, I have major cirrhosis, I am end stage. My meld score before treatment began was 11, here in Hawaii, you need an 8 to be on the transplant list. My varacies have been banded. I should be ok there my doctor feels, it looks good from the two endoscopies, I have had the last ten weeks. My platelet level before the bleed out was 18, since the six weeks of treatment, my platelet level rose to 84. I have new labs Monday, I think whatever is happening with this sudden edema in my feet, ankles, legs will be revealed. My viral load will be measured for the first time since I started treatment. I hope this helps. I could sure use some feedback. Thank you, Aloha

Post Edited (Turns) : 6/22/2014 5:10:57 AM (GMT-6)

I accidentally ignored someone that went by bblt, i think it was. I did not know that icon did that, i am sorry, i will try to fix the issue.

Turns, welcome to the forum. You certainly have all the side effects of End Stage Liver Disease...textbook case. Hyponatremia (low sodium) is, indeed, very serious. My partner had some eposides with this before transplant. They treat it with limited fluids. Edema with the low sodium is not unusual because the cells hold on to the fluid in there because new fluids are not moving across the cell walls to bring new nutrients to your cells.

Your MELD of 8 to 11 is very low for someone with so many symptoms. In many mainland centers they do not transplant until the MELD is in the 30s. In Florida, where we are Mike was transplanted in the mid 20s.

Are you taking Lactulose and Xifaxan? Most with ESLD take these to keep their Hepatic Encephalopaty--confusion--in check.

I am so sorry that this has become so difficult for your. I am hoping you are working with a hepatology department at a major medical center. And that you have a loved one there with you. Battling ESLD, treatment, etc alone can be very difficult.

Hugs,
Mama Lama

Turns, welcome to the forum. You certainly have all the side effects of End Stage Liver Disease...textbook case. Hyponatremia (low sodium) is, indeed, very serious. My partner had some eposides with this before transplant. They treat it with limited fluids. Edema with the low sodium is not unusual because the cells hold on to the fluid in there because new fluids are not moving across the cell walls to bring new nutrients to your cells.

Your MELD of 8 to 11 is very low for someone with so many symptoms. In many mainland centers they do not transplant until the MELD is in the 30s. In Florida, where we are Mike was transplanted in the mid 20s.

Are you taking Lactulose and Xifaxan? Most with ESLD take these to keep their Hepatic Encephalopaty--confusion--in check.

I am so sorry that this has become so difficult for your. I am hoping you are working with a hepatology department at a major medical center. And that you have a loved one there with you. Battling ESLD, treatment, etc alone can be very difficult.

Hugs,
Mama Lama

Hi Turns -

Sounds like you're "balanced on a knife edge" as one of my doctors put it. I'm in the same boat as you with the same low MELD scores but with major ESLD issues going on. Even have HRS type-2 right now with creatinine levels between 1.6 and 1.8, BP down to 70/40 on occasion.

Your first note seemed to indicate fairly well-controlled ascites with minimal intervention. That's why I was interested in your recent blood numbers - especially the kidney related ones. Sounds like you'll get those tomorrow. Strangely enough, it's good that you are still able to have edema. Hopefully it's moderate and hasn't gone up past your knees.

I'm impressed that you're able to handle the crazy low fluid intake regimen. I whined like a little kid when I couldn't have more. My sodium was dropping too which it drove my doctor nuts and then he finally had me start drinking more water (only when thirsty), all while taking fairly low diuretic dosages. Somehow I managed to achieve some sort of new balance where my sodium is still bouncing around 130 to 135 but the ascites is now maintained with minimal diuretics and drink when thristy policy. Hopefully your doctors will get the numbers they need and you can be re-adjusted. Good luck and do keep in touch with this site. Wonderful group here.