Ascites and weight gain

Hi.  I've been on here forever.  Over the last several months I have struggled to lose the weight that is causing my clothes to not fit.  Then I wondered if it was the HepC.  I asked both my doctors if the swelling was from HepC or from not sticking to my self-imposed diet, and he said it wasn't the HepC.  I've had my doubts about what he said.  If I've already got ascites, I may as well go all out and eat whatever I want, because I'm not going to get better.  I am 58 years old, infected March 1976, diagnosed 8/1994 with genotype 1b, failed all three treatments, no longer eligible for any clinical trials because retinal hemorrhaging was found in week 9 of my last treatment, and I had to quit.  Just for fun, I was also diagnosed with an umbilical hernia at my last appointment June 2012.  I may be able to get some kind of treatment through my doctor, who is head of the Liver Research and Treatment Center in a large teaching hospital (Harvard).  Why bother?  I have an appointment next month.  I'm sorry for my sarcasm and if I'm just feeling sorry for myself, but really, I am SO sick of this stupid disease.  Pf.

[Advocate1955]

You have to first find out why you're retaining fluid. There could be many possible explanations. If it were me, I would reduce sodium, drink water, and go back to the hepatologist. He/she should be able to determine if you have as cites or not, and if you do, symptoms can be managed with proper treatment to prevent portal hypertension and other problems. Since you have Hep C and have failed all currently approved treatments, like my husband, hopefully you are being monitored regularly for liver health, esophageal health, etc. My hubby is in the same situation as you, but he is a couple of years older. It is very important that you address all health concerns and manage any possible symptoms of decompensation effectively so that you can remain healthy enough to treat when a new trial or a new treatment becomes available. That is what my husband is doing. Do this for you and for your family.
Advocate1955

[ChrisDDD]

Thank you for responding and words of encouragement.  It just gets so hard sometimes.  I don't want to tell my kids about these problems.  They know I have HepC, but not the rest of it.  I hope your husband improves and that they will find a cure for this.

[frijole]

Chris, i am so sorry.  You sound terribly down on yourself right now.  You can live a good life with cirrhosis but it does take some discipline.  This is not my strong suit either.  I have gained weight after tx and need to get back to my "self imposed diet." Fatty liver is not good either.   If your doctor says it is not ascites, it probably isn't  so that is good.  It really is.  It is hard for the liver to process fats and other additives.  That old liver works so hard, we need to be kind to it.  

I understand your not wanting to tell the family about cirrhosis.  I don't either because it is a scary thing to others and sounds so dooming.  I suggest the book, Cirrhosis, the First Year.  I bought it through Amazon and it does have a lot of helpful information.

[HectorSF]

I understand who you feel. But please take control of your disease. Fighting cirrhosis is a pointless effort as cirrhosis will win every time.

Ascites is not the end of the world. Most patients can live with it for many years before getting a transplant. It is manageable. Ascites causes rapid weight gain (fluid buildup) become fluid flows sodium. You should be on a cirrhosis diet anyway not making up your own diet. All liver transplant center's have dietians that can help you manage your diet and exercise routine to stay as healthy for as long as possible with your liver disease.

Treatment for ascites consists of...

* Reduce sodium to less than 2,000 mg per day.

* Take Spironolactone 100 mg and Furosemide 40 mg per day and increase dose in the 100/40 percent up to 400 mg and 160 mg.

That works for 90% of us. I have has ascites for 3 1/2 years and must of the time watching my diet and taking my meds I have no fluid build up.

Talk to your hepatologist they will tell you how to manage your ascites and the weight changes.

Almost all of us on transplant lists have umbilical hernias caused by ascites. Most of us live with the hernia without any problems and then it will be repaired during transplant. It is a non issue unless your small intestine gets strangled in it as mine did a month ago and I almost died. But that is rare and I was lucky to survive it.

We all need time to feel sorry for ourselves. Nothing wrong with that but try to pull yourself up when you can. You have a long way to go to transplant and giving up now while you still have options, would not be a wise decision.

Your main goal should be staying alive. Hep C is NOT your main problem. Your liver has already been damaged so much even without hep C your will still need a liver transplant. Most patients with ascites can't treat their hepatitis C anyway. There are "decompensated" and too ill to treat there hep C. Hasn't anyone told you this basic fact? Current hep C treatments are NOT for patients with "decompensated cirrhosis". They all say so on the label. In fact treating a decompensated patient can cause further liver damage or complete liver failure.
---------------------------------------------------------------------------------------------------------
CONTRAINDICATIONS - Hepatic decompensation in patients with cirrhosis
"
Hepatic Impairment: Safety and efficacy have not been established in
patients with Child-Pugh score greater than or equal to 7 (class B and C)"
----------------------------------------------------------------------------------------------------------
None of us volunteered for this. I have meet probably 200 liver transplant patients, I can't remember anyone saying this is what they had in mind when they thought of their lives in their 50s and 60s.

Get into liver transplant center soon and start getting the ongoing care you need to manage your liver disease to you can live as long as you can in a healthy way. If your MELD score is high enough, get listed for a liver transplant. Boston has many excellent liver transplant programs there is no reason for you to be having problems managing ascites with such great medical care nearby.

Good luck.
Hector

[ChrisDDD]

You are the best!  Hector, yeah, my liver doc is Dr. Nezam Ahfdal, who runs the liver center at Beth Israel.  I have an appointment next month and I'm confronting this disease again.  I know he wanted to try a treatment specific to my particular condition and deal with not only the three failed treatments, but more particularly the retinal hemorrhaging at 9 weeks.  That was 2005.

I have a liver-healthy diet.  I quit smoking.  I don't drink.  I'm not overweight.  I have a beautiful grandson I'd love to see grow up.  It's just so discouraging.  When I failed the Infergen at week 9 after having retinal hemorrhaging, I just threw in the towel.  My local hepatologist has refused to treat me any further because he fears I could go blind.
When well-meaning friends tell me the problem is my attitude or go back to church, I already tried all of that.  It just doesn't work.  Wow, this has gotten way too long.  I'll be checking in more often as a possible treatment date gets closer.

Take care.
Eh, bien.  Tant pis.