I just found out I am SVR after S&O

[Dbzc2]

Now, I am totally clueless about hoe to take care of my damaged liver.  I have cirrhosis with portal hypertension...no hep c virus, yay! However, I do have a handful of symptoms from the cirrhosis. . .recent damages just before I started S&O.


ANY tips, info, suggestions would be so welcomed! I have fatigue, pain, some swelling, bruising, fuzzy thinking despite the no salt or meat diet . . .what do I need to do to make sure I do not need bands and how do I take care of my virus free liver?

Best, dbz

[Nenan3855]

Just wanted to add a couple more suggestions for pain I used castor oil to rub on sore muscles and I take Epsom salt baths to draw toxins out. Avoid perfumes and chemicals as much as possible. I use coconut oil for my face and body. I use natural soaps. No hairspray or deodorant . Peroxide deluded wipe under arms helps. You want your glans open to release any toxic buildup.I have gone to a massage therapy to loosen up clogged glans and nodes. I can get a bit light headed afterwards so take it easy for a bit.  My doctor is aware of every thing I do. Including tea,s to relax my aches and stresses. I do take some probiotics also. Metamucil for added fiber that I was low on.
You seem to be very active and healthy person but this cirrhosis changes your life style greatly. Keep up your research . Adjust your work load and continue to stay positive.
I trust that you will get better !!
Take care
Nena

[Dbzc2]

Thanks. I am now trying kefir, raw protein powder and sunflower seed butter. I had no clue peanut butter messed me up so bad!  What's hard is just plain not having an appetite. So far, since I dropped peanut butter and started the raw protein powder and kefir, I am noticing more energy! Wow. Walking and getting out has helped too!

I start Tibetan meditation and yoga in a week and this Friday I am seeing my doc with that PDFs Hector mentioned. OMG it defines and explains virtually everything.  I am also going to ask about the lactulouse(sp.?).

Even better, learning about what to do and not do is so helpful! I sent a copy of the cirrhosis PDFs to my family so they have a better idea of limitations and why I have to be so careful about what I eat.  All my labs were perfect, so I think 0% organic milk has helped keep my weight just so...fruit too!  At least I'll try the soups once the cold weather hits...or chill for drinks...at this point I don't care what it is as long as it helps!  

90% humidity with 90s weather is in itself a drain!  Thanks you guys!  Best, dbz

[nan535]

"Peanut butter sent me into severe symptoms. Any red meat or beans I reacted badly too."

The same thing happens to my husband. He can't eat peanut butter, red meat or beans. All are high protein.

Thank you for kind words. Happy to know sharing my experiences as the caregiver of a cirrhotic patient  has been helpful to others.

[Nenan3855]

I have cirrhosis , decompensated and have been eating homemade soups such as a green soup with broccoli , green beans, kale peas, celery , basil, parsley,okra , with garlic powder and onion powder both organic .grapeseed oil. Slightly bing to boil and blend. My family made many servings for me. This helped my energy and slowly gained strength in time. Along with doctors meds for ascites, lactulose for 3 regular bowls daily. I also take powdered calcium w/ magnesium and vitamin d,(liquid)  lots of water and juice smoothies. Peanut butter sent me into severe symptoms. Any red meat or beans I reacted badly too. Everyone is different but my nutritionist said it took a long time to get to this point and will take time to come out of it.  Hector and nan have a great deal of information for you. They helped me become an active advocate in researching cirrhosis.

Nena

[nan535]

That toolkit is a great resource for anyone dealing with cirrhosis whether as a patient or as the caregiver of a cirrhotic patient. Thank you for sharing the link.

As you said in your post, every patient is different and has their own unique circumstances. Just as an example, in the toolkit lists fresh beef and lamb under "good choices" for low salt food choices. My husband who has cirrhosis, portal hypertension, and episodes of hepatic encephalopathy, can not eat beef or lamb without triggering his HE. Yet another patient may be fine with it. So my point is exactly yours, every patient with cirrhosis has their own unique circumstances and should be monitored closely by their hepatologist.

As always, the sharing of your expertise and experience with hepatitis C and advanced liver disease is very much appreciated I am sure by all.

Nan

[Dbzc2]

Good lord! Your are right! I react to chocolate! (Sugar head rush!). I have a super sensitive reaction to just about everything!  God that makes so much sense! Thanks again! Dbz

[Dbzc2]

Little by little I'm getting my head straight! That was so spot on for what im dealing with!  Thank you again and again! Dbz

[Dbzc2]

Thank you so much! I'll get the toolkit asap! I feel so lost. I can't belive I've been dealing with this for so long and had NO clue these were two different diseases? Never, ever, has this been explained to me.

Before the cirrhosis set in, I actually refused to try sovaldi & olyssio becaue I was so afraid of the cost. It took my doc office four months before they even said there was financial help...all that was said before was "financing" may be available? I thought that meant a loan for life or debt for my estate.  What a mess, the embarrassing part is I have a doctoral degree in communication with research in public health communication... I now realize the communication issues and will get over being upset. Now I'm trying to catch-up.  Thank you so very much. You rock!

Sincerely, dbz

[HectorSF]

Only a hepatologist can care for someone with cirrhosis and portal hypertension and its symptoms and potential complications. Everyone's liver disease is unique and requires individualized management that only a hepatologist who knows your medical history and the current status of your cirrhosis and its complications.

Cirrhosis and portal hypertension with or without hepatitis C infection is a serious and potentially life-threatening disease that developed over many decades. It doesn't go away once the hepatitis C infection is cured. The damage has already been done. Hopefully your liver will be able to heal itself over the coming years now that the virus is no longer causing ongoing damage and you can prevent the need for liver transplant. Only a hepatologist has the training and experience to properly manage any current symptoms and complications as well as monitor the status of cirrhosis to best prevent or manage the consequences of cirrhosis and portal hypertension which can include, bleeding varices, ascites, HE and the development of liver cancer..

Finally, I would suggest reading the toolkit for patients with cirrhosis from the University of Michigan Health System to become familiar with the basics of managing your advanced liver disease. It includes the symptoms, complications and treatments of cirrhosis, things to avoid, vaccinations, screening for liver cancer and a basic recommended diet.

Liver Cirrhosis:
A Toolkit for Patients
Division of Gastroenterology and Hepatology
University of Michigan Health System
www.med.umich.edu/1libr/hepatology/CirrhosisToolkit.pdf

After reading this document you can discuss these issues with your hepatologist and see how they apply to your particular situation.

Good luck!
Hector

[nan535]

Here is a link to some good information on bleeding varices.
http://www.webmd.com/digestive-disorders/bleeding-varices

It sounds to me like you are taking very good care of yourself. So that leaves
one reason as to why you are still not feeling well. I think these meds are very strong and it will take a good while for your body to recuperate.  As you said you are a smaller person and I think that may have something to do with it.
You took the same amount of meds as someone who is much bigger than you.
That has to have had a impact on you and it will take longer to recuperate.
Of course, this is all an educated guess on my part. Nothing to back it up other than to say it took my husband almost 2 months to bounce back from his treatment.  (He has not had an HE episode in two weeks which is huge.)

So hang in there. Keep doing what you're doing and I have a feeling you will start feeling better.

Best wishes to bouncing back soon.

Nan

[Dbzc2]

What are the symptoms of bleeding varices?  

So far, I'm complete vegetarian. (I haven't eaten red meat in nearly 30 years. I never eat fried anything and nothing that's processed due to salt content.

I do not drink and was a normal wine or beer person with dinner. (As soon as I found out I had cirrhosis I stopped even the one glass of wine I'd have with dinner.)

When you say sugary drinks, you mean soda and icky stuff right? Like sugar in tea or coffee is okay?  I do not drink soda at all--never have. It's the fizz I do not like, and I am not a fan of any fake drink stuff.  

I quit smoking 5 years ago when I used to have 1-5 cigs a day for about ten years.

Eating is a problematic! I'm lucky if I have a PBJ and protein (raw) smoothie!  Seriously I might have fruit, but I have zero appetite!  Yet I've maintained my weight?  Maybe that's because my activities came to a stand still? I do work, walk, but not like on a track for a time, so I'll do that to see if that won't make me want to eat.  I'm 5' 6"  115 to 125 lbs now for past 20 years. I did gain fluid weight while on S&O. I'm slowly loosing that because it had me up to 134 (NOT a normal or comfortable weight--I'm small and have always been small.)

So, with all this, why the confused thinking, fatigue, and pain?  Is it because that's what I just started to have when I started S&O?  I have lost my ability to multi-task, and have about 5 good hours a day! When the fatigue hits, I can't think and feel like I haven't slept in days.  I kind of get real clumsy and couldn't walk a straight line if I tried?  Now, when I do hit that wall, and I'm being literal, not rhetorical. I have to just go to bed?  I've never been this way before this past year. Never?

Is there something to do to help reduce the fatigue?  

I don't know if you remember, but my other issue was vertigo, that is finally starting to not be so dramatic--only when stressed or fatigued. (Thank goodness because that was nuts!)

My PTT is half 11.5 WNL is 12, so this is high for me. Normally I'm in normal
range. The only other abnormal lab was chloride?

So that's what I've been doing and who I am. . . Yet, I do NOT feel normal.  I haven't felt normal since Dec 2013.  Before that I was extremely active. I don't know if this is my rather newly acquired cirrhosis, the meds I just finished...? I don't understand?  

I'm practically a goody two shoes when it comes to taking this stuff seriously. I guess that's why I do not understand why I do not feel normal?  I had my work schedule cut back because I need a day off every other day so I can think and recover from what feels like rheumatoid arthritis...which I do not have?  So I feel lost?  I thought I would feel better?  In two weeks I'm doing yoga again and seeing a friend who practices Eastern health wellness practices--that's how badly I would like to feel normal.  Or, is this my new normal?  That's the part I guess is my big question?  If so, it means I have to change my entire way of living and working.  I happy to be rid of Hep C---finally! I just didn't know I was going to feel like this?

Best, dbz

Ps. My homepage login disappeared with an error message and I might have to redo my login?  Bizarre? It happened yesterday?

[nan535]

I just found your thread.

Again congrats for clearing the virus. That in itself will help your liver.
There are those who say that with time even patients with cirrhosis will improve when the offending agent is removed (in your case, Hep C virus).

Here are some tips I've picked up:
Diet:  fruits, vegetables, chicken and fish  (no red meat - higher protein)
5 smaller meals rather than 3 large meals.
Exercise:  walking daily will be a good start
Drink plenty of water - avoid sugary drinks
NO alcohol ever again. If you are a smoker, quit!

As for banding of varices, if you have any symptoms of bleeding you need to go to the ER immediately.  Your doctor will probably check you with an ERCP and/or ultrasound periodically to see if your varices are large enough to need banding.

I think the most important thing is to get your head straight, think positively and live your life one day at a time.

Wishing you all the best.

Nan