Ascites, will it ever go away?

[Dewgirl]

Hi, I have just started my 4th month treatment of Harvoni. I still have a pregnant looking belly. I am taking 2 diuretics and vitamins, folic acid, fish oil and drinking plenty of water. I eat apples, plenty of veggies, fiber, protein and no salt, very little sugar. Trying to get my liver healthy again by eating right. Still so very tired and just aggravated with the darn fat belly. Makes me feel like I am not helping myself by not seeing or feeling any good results! I have been a HEAVY drinker for 30 years and quit cold turkey, because if I didn't, I knew I was just going to keep killing myself. I have been sober since August 1st!!! But this ascites is getting me very down and depressed. Not enough fluid to have it removed, but enough to make me look very pregnant! Don't know what else to do....
Thanks for reading,
Dewgirl

[gnatcatcher]

Welcome, Dewgirl! Congratulations on almost five months of sobriety and all the other good things you are doing for yourself. Are you including exercise? When you're very tired, it's hard to get that going, but start small and, if you keep a log, the on-paper proof will help motivate you to do more and you'll probably find your energy increasing.

I can sympathize about the darn fat belly, although mine is due to a different medical issue than ascites, so I don't have an answer for you. Someone else probably will.

Keep up the good work!

Gnatty

[Lynn K]

Hi Dewgirl and welcome,

So sorry to hear about what is going on with your ascities. I asume you have been diagnosed with liver cirrhosis which unfortunately is the cause of your ascities.

Liver cirrhosis is as you probably know is a serious medical condition where health liver tissue is replaced by scar tissue until the liver becomes damaged to the point it has a hard time performing its normal functions.

You have done a great thing by quitting drinking that is awesome. Eating healthy and especially staying away from salt and watching out for sodium content in food is what is recommended for the ascities along with taking diuretics.

You need to be seeing a hepatologist who works with a liver transplant center so they will know you and your case and also because they are best equipped to follow patients like you and me who have very advanced liver disease.

I was taking spironolactone for lower leg edema and also a small amount of ascities. My ascities was only detectable by ultrasound and was not as pronounced as yours.

Have you had an upper endoscopy to check for esophageal varicies? I had one the year I was diagnosed with cirrhosis which showed grade 1 varicies. The test was repeated 2 years later where I had grade 2 varicies. Then the next year I was found to have grade 3 varicies that needed to be banded to get rid to them to prevent a dangerous bleeding event. Many people have to take a Beta blocker for varicies but I could not because my heart rate is too slow.

Do you know your MELD score? It is based on some of your blood test results as is the Child Pugh score but based on a couple of different tests. Both those scores are used to determine the severity of your liver disease. The MELD score is used to determine your place on the liver transplant list. The MELD score scale is from 6 to 40. Your score has to be at least 15 to be in the list with most patients who are able to receive a transplant have a score in the 30’s. The Child-Pugh score is a simple A, B or C. My MELD is 7 and I am a Child A.

As far as with cure of hep c will your liver recover is new territory for doctors. Previously they said there is no coming back from cirrhosis. But now they are finding that people with cirrhosis caused by hep c have about a 50-50 chance of seeing signifigant liver improvement. We had several people here see their Fibroscan scores come down from the F4 range (cirrhosis) to F3. For myself I have not seen any improvement but I was diagnosed with cirrhosis 10 years ago so I guess it is a long way back.

There have also been studies where patients with alcohol caused cirrhosis were also able to see great improvements. But the more damage the longer it will take.

So bottom line from here on out you will have to be kind to your liver. Quitting alcohol and curing your hep c is a great start. Working with your hepatologist and getting your blood testing done as required and having an abdominal ultra sound or similar imaging done at least at 6 month intervals to monitor for early signs of liver cancer as because we have cirrhosis we are at increased risk. But again with cure of hep c or risk of HCC is also greatly reduced.

Something you also want to watch out for is signs of hepatic encepalopathy as this is also a serious symptom of advanced cirrhosis.

I got this below from WebMd:

There's a lot of variety in the way HE affects people. Not everyone has the same symptoms. For some folks, they may be very slight or come and go.

In some cases, the effects of hepatic encephalopathy start slowly and then get worse bit by bit. But sometimes they hit you hard all at once.

There are some mental signs to watch out for. For instance, you may:

Get confused
Forget things
Feel nervous or excited
Notice a sudden change in your personality or behavior
Speak or act inappropriately to others
Not feel interested in things
Get cranky

Of course, when it comes to changes in behavior, sometimes you're the last one to realize that something is off. So if you've got a long-term liver disease, ask your family and friends to be on the lookout for shifts in your personality. Tell them to be honest with you if they see your mood has changed or you're just not acting like your old self.

You may also notice some changes in your sleep patterns. You could feel sleepy during the day or stay up late at night.

Some physical changes can start creeping in, too. You may notice that:

Your breath smells sweet or musty.
It's hard to move or use your hands.
When you hold out your arms or hands, they shake or flap.
Your speech sounds slurred.
You feel slow or sluggish when you move your body.

Anyway let me know if you have any questions I know I put a lot out there.

Good luck with your treatment and wishing you better health

[Dewgirl]

Hi Gnatty. Thanks for replying. Also, thanks for the congrats. I hope I am doing this correctly. This is the first time I have posted anything. Wasn't sure if it was going to show up. Also, I hope I am replying the right way.
 Yes, I have been thinking about exercise and keep saying...I gotta do it, do something. I did walk on my tread mill last month a few times, tried doing some sit-ups, but just kept thinking..."Well what good is this going to do? Not going to make my ascites go away, why bother?" So I just stopped. I know it would make me feel better to exercise, to make me feel like I am doing something. Before I was diagnosed with Hep C and cirrhosis I did exercise and it did feel good to notice just my muscles feel sore the next day. I just can't seem to make myself do it. I am not lazy and do not sit around all day. I am constantly on my feet, which then causes my legs and ankles to swell. Just always feeling so tired and drained. Drinking lemon water in the morning doesn't seem to help. I love to write things down..like my meds log and keeping track of the juices and veggies I consume. I will give exercise another try again. I just don't know where to start. I guess I will look on Google and find exercises to do for a 50yr old.  I will keep a written log of what I do. Thanks again for your response. Much appreciated! Take Care.... Dewgirl.

[gnatcatcher]

Dewgirl, you're doing great posting and replying.

Glad to hear you like to log stuff. If I knew of a particular exercise that would trim the tummy, I'd tell you. I'm quite a bit older than you, so my exercise goals are keeping my energy level up and my fingers, arms, and legs strong plus staying flexible and balanced. Lots of brisk walking is what gives me the energy, and if I can do it outside in nature, that does wonders for my mood. But if the weather's not good, I'll "go in circles" around the dining room table if I have to. I have a tune going inside my head that is about 1 beat per second and groups into 16 beats total for once through the melody, which makes it really easy to count steps, with 32 rounds of 16 steps being a little over 1/4 mile. (It's amazing how fast I can rack up the 16's in a big box store or supermarket, and the counting gets even easier once I know how many steps it is down a whole aisle or from the front to the back of the store.) You can give yourself credit for the walking you already do, now that you have a way to estimate the distances!

At some point, I established daily minimums that I have to be really ill or in severe pain not to meet (another disease gives me joint, muscle, and nerve pain). I do two exercises at once where I can (like brushing my hair or teeth while standing on one foot for balance, or squeezing the hand gripper while walking briskly). The log makes it easy to fit in an exercise or two or three whenever I have a little time (I've done subtle flexibility exercises while standing in a checkout line).

I also get leg swelling. To minimize that, I prop up my legs whenever I'm sitting, including at my desk, under which I keep a comfy, padded stool.

This is an opportunity to use your creativity and build in as much fun as you can. (The brisk walking seems to go faster when I have someone to walk and talk with.) What better time to start than around New Year's?

Best o' luck to you,

Gnatty

[Lynn K]

Hi dewgirl

Are you seeing a hepatologist who works with a transplant center? Not to say you need a transplant but they know how to follow us better than other doctors.

Have they recommended you to a dietician that has knowledge of best diet practices for people with liver cirrhosis?

Do you know your MELD or Child-Pugh score?

Any idea how long you have had cirrhosis?

Best wishes
Lynn

[Dewgirl]

Hi Lynn, Thanks so much for your replies. I have  just been trying to figure this forum out of how to respond to posts. I really appreciate all the information you have given to me. I feel lost when it comes to my liver doctor, because I do not know anything about any of my blood work. I called him today to see if I can get copies of my tests. I know no numbers, nothing about MELD or Child-Pugh. I have never heard of any of these things from my doctor. He seems to just not care. I am going to post this to make sure I did it correctly before I go into anything further. Talk to you soon.

Dewgirl.

[Lynn K]

Many of us have access to our records online. I get mine from MyChart which several of my doctors use. I can see my lab results any time going back many years. But if your doctor does not use this or any similar service you still have a right to copies of your lab tests. Just ask at the fron desk. Also if you go to other places like where you have your abdominal ultrasounds they will also provide copies. This will include the report of what the doctor who examined your report finds.

The MELD is a score based on several of your blood tests

https://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease

“Model for End-Stage Liver Disease (MELD)
The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease.”

Here is a calculator so all you need is your results for bilirubin, sodium, Serum Creatinine, and your INR which is related to blood clotting times.

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

These tests results would be found on your hepatic function panel test, metabolic panel and prothrombin time tests.

Another good test result you would want to look at is found on your CBC test (complete blood count) this is your platelet count. Very often the platelet count is one of the first to go out of normal for people with cirrhosis. Min normal is 150 mine was about 80 to 90 before treatment but has risen to about 110 since I was cured.

Is your doctor working in a liver transplant center? Do you have blood testing at least every 6 months along with an abdominal ultrasound or similar test? Have you had an upper endoscopy to check for esophageal varicies? Have you been vaccinated against Hep A and hep B?

You have ascities and edema do you have any other symptoms of cirrhosis?

Sorry your doctor hasn’t been helpful is it possible to see a different doctor especially if your doctor is not associated with a liver transplant clinic. My doctor is affiliated with the University of Washington Liver Department in Seattle about a 40 mile drive for me but for only once a year well worth the drive. I have my blood testing done in my town through LabCorp they sent the results to my specialist.

[Dewgirl]

Hi again Lynn.
  Okay, I was diagnosed with Hep C and liver cirrhosis almost 5 months ago. I went to doctors because of enormous swelling of belly. Admitted me to hospital, found out I have extremely low platelet count, Hep C and cirrhosis. From then on was referred to liver doctor (which is a gastroenterologist - not a hepatologist). He put me on Harvoni for 6 months and doesn't want to see me again until 6-8 weeks AFTER treatment.  Doesn't seem like he cares. So, I know nothing about my bloodwork. That is why I called him, after reading your first message, to have my tests mailed to me. They have not recommended any dietician, don't even call to see how I am doing.
  The doctor in the hospital was the one who put me on Spirinolactone 100mg, Furosemide 80mg, Folic acid 1mg, Vitamin B complex and Multivitamin. When I got out of hospital my ascites was just about gone! from just taking the medications and what they fed me there I guess. Since I have been home, ascites came back and is still present. Everything I am doing as far as diet and no salt, no sugar, I have learned from good caring people like yourself and whatever I find on Google. I just don't understand why it is back and won't go away. I understand that it took many years for my liver to get this way and will probably take as long if not much longer for it to heal. I was never told anything about a liver transplant so I guess my numbers weren't too bad. I don't know? I had an ultrasound and an endoscopy done in the hospital and no varicies were found.
  I am not sure how long I have had these diseases, but probably since I was least 20yrs old? I am 50yrs now. I just thought it is strange for my "liver doctor" not to want to see me or test me at all until after treatment. So I have been going to my family practitioner and having her run blood tests as far as checking liver, kidneys, cholesterol, albumin, CBC with platelet count, etc.... Other then that she just tells me to follow what my liver doctor recommends, which is pretty much.. Nothing!
  So, the next thing I am going to look up is this hepatic encephalopathy, that you mentioned because I do seem to have several of those symptoms.

  I thank you and Gnatty for caring and your concern and even just talking with me which is more then I can say for others. (I must mention that the Walgreens Specialty Pharmacy staff gets a 100% in my book for caring!!! Get this, I got my 1st bottle of Harvoni from them, then I had to switch to my Insurance pharmacy so they will cover the cost of the prescription. So I have not used Walgreens since September, and you know what? They call me EVERY month to see how I am doing, how I am feeling being on the meds and if I have any questions!! Go figure... my thumbs up to that pharmacy (am so impressed!) They are in Nashville, Tennessee.
  Okay, sorry to have bent your ear and who ever else's ears or eyes that have been reading this. I feel much better getting this all out. Whew! Thank you all and I hope for the best to everyone that has certain ailments going on in their lives. Bless you all...Take care...
   Dewgirl. 

[Lynn K]

Here is a Wikipedia article about the Child Pugh score it is also based on your blood work a couple of different tests than the MELD and an evaluation of symptoms if you have ascities and if you have hepatic encephalopathy

https://en.m.wikipedia.org/wiki/Child–Pugh_score

Here is a calculator for Child Pugh

https://www.hepatitisc.uw.edu/page/clinical-calculators/ctp

[Lynn K]

Did you know that Giliead the maker of Harvoni offers a copay coupon so all you have to pay is $5 per refill?

https://www.harvoni.com/support-and-savings/co-pay-coupon-registration?gclid=Cj0KCQiAyZLSBRDpARIsAH66VQI56SxhejU5jnj_LSzSI9LLvrHOXxrlo6wnN2nKGCoLq9iC7d941ZwaAq8GEALw_wcB

A gastroenterologist is a specialist in all things abdominal a hepatologist is a liver specialist (Hepatitis meaning liver) Hepatitis comes from Hepa=Liver and “-itis”=inflammation so Hepatitis means inflammation of the liver. A good gastro is fine but I would still hope they are associated with a liver clinic.

Another thing to be careful of is OTC pain meds with a low platelet count we are in danger of bleeding internally so meds in the NSAID Class like aspirin and aleve are to be avoided. Really we are only supposed to take Tylenol but be very careful with dosing Tylenol is mixed with many other meds in multi symptom medicines so very easy to accidently exceed the max daily dose. Tylenol is called acetaminophen so look for that on medicine labels. And again avoid other NSAIDS.

Also salt (sodium) can hide in processed foods so again read food labels. If your having trouble with your ascities and your old dose is not working you should contact your liver doctor they may need to adjust your dose.

I didn’t see my liver doctor during treatment just got testing done locally but could communicate via message through the MyChart web site. I have been on this road for a very long time knowing I have hep c and worsening liver disease time so I am informed patient and don’t require a lot of help. With you being new to all this I wish your doctor was more helpful. Specialists don’t have a lot of time for individual patients unfortunately and not all have the best bedside manner. I did most of my communication through my doctor’s nurse. They could answer sometimes and otherwise ask the doctor. Cuts down on too many questions going directly to the doctor that can be answered by the nurse.

I sincerely hope you do not have HE (hepatic encephalopathy) it is a horrible condition. If you are that far along that really would be very advanced liver disease.

Here is some good info about HE

http://he123.liverfoundation.org

and here is some good info about liver cirrhosis.

https://www.liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/cirrhosis/

[gnatcatcher]

If you'd like to see what hep C specialists may be located in your area, Harvoni offers a web page where you can enter your zip code and see a map and many listings:
http://www.harvoni.com/getting-started/find-a-specialist?utm_campaign=HARVONI2017&utm_source=HepMag&utm_medium=Display_Desktop&utm_content=91903638&utm_term=205169187
     Interestingly, two of the hepatology experts in my hospital system show up as gastroenterologists and another as an internist, so having the label hepatologist is not necessarily better than one of the other labels. What matters are whether the doctor (1) keeps up with current hep C best treatment practices and (2) cares about patients.

[Lynn K]

Good article about ascities

https://www.emedicinehealth.com/script/main/mobileart-emh.asp?articlekey=105600#medical_treatment_for_ascites

Thanks Gnatty for the hep c specialist information.

Also found this about how to find cirrhosis and liver disease experts in your area.

https://www.liverfoundation.org/for-patients/resources/locate-a-specialist/

[Gaj]

Hi Gnatty,

Good information there, but just to clarify your below comment....

Interestingly, two of the hepatology experts in my hospital system show up as gastroenterologists and another as an internist, so having the label hepatologist is not necessarily better than one of the other labels. What matters are whether the doctor (1) keeps up with current hep C best treatment practices and (2) cares about patients.

- All hepatologists are also gastroenterologists: Initially they will have studied and understand the full GI (gastro/intestinal) field, however they have then gone on to study further and specialise in the liver.

- Not all gastroentrologists are hepatologists: All will have studied and understand the liver but often in a more general way that looks at it as just one part of the GI area and they may even have gone on to specialise in another GI area.

- Some gastroenterologists may not have studied Hepatology as such but have a particular interest in that field.

Hepatologists are usually known as “Gastroenterologist (Hepatology)” but for the purposes of hospital listings, computer systems, etc. that may get abbreviated to just the first word. 

Hope that all makes sense.

[gnatcatcher]

Yes, very clearly expressed -- thanks, Gaj! Your final comment hadn't occurred to me as to why my area's Harvoni page might have the labels it has.

Dewgirl, as you are learning, it is often necessary for a hep C patient to advocate for herself. Some people luck into specialists who automatically want patients to have copies of their records, are good at explaining what test results mean, and make it easy to contact their offices with concerns. Others have had to engage in a lot of self-education and decide whether to switch providers. Knowledge is power!