Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: dragonslayerinprogress on January 09, 2016, 03:42:30 am
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I don't know how long I've had Hepatitis C. I am 52 years old and I could have gotten it from my mom who was bleeding to death while pregnat with me back in 1963 or it could have been innoculations as a child. or a dentist.
I guess that doesn't really matter now.
I was a level one in the early 2000's and stayed that way for a long time. Then in 2011 I jumped to a Fibrosis level2. In 2013 I was still a level 2 with a VL of 250,000.
My mom died in 2012 and I have been depressed and stressed in the past three yeas and when I had my testing done in April of last year, I jumped a whole level from a F-2 to a F-4 (according to a fibrosure score) The dr. doesn't know how it could have advanced that quickly and neither do I but my platelets were down to 78,000 so he believed it could happen.
Now in December my platelets went down the low 50 thousand mark and my albumin levels were at 3.3 where normal starts at 3.5. Never, ever did I have problems with Albumin levels. But, my dr. stated that it could also be from my diet. I don't really eat much and I eat lunch at 2-3 and that's usually my first meal. Dinners, since I'm home alone (daughter works at night) husband and I are separated) are usually hungryman salsbury steaks or even frozen chicken pot pies. It feels useless to cook for one person. So yea, I'm not eating well. Every now and then I get swelling when I wake up from bed. It's the eyelids. face, nose, and even lips. Scares the crap out of me. It does disapate in an hour or two but it seems like I cry them out. My eyes leak so to speak. I don't know if this means I am heading to decompensated liver or if I am still compensated. I have no other symptoms. My chloride was slightly high as well. Can someone honestly tell me what I'm looking at here. I'm a geno type 2 b and waiting to start the ribavirin and solvadi treatment which I'm also scared to death of. I'm so afraid that I'm dying and I can't think straight or anything. Any help or advice would be wonderful!
Thanks
Irene
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Hello, Irene. You may be down, but you're NOT out. You CAN become much healthier. Current cure rates for HCV treatments are very high, and once you get rid of the HCV, a whole lot of of symptoms resolve.
You've given us a lot of information to go on. Various people on these forums will be able to contribute different parts of what you are asking, based on our individual experiences and knowledge.
Women with HCV are protected by estrogen, so their HCV progression tends to be slower than men's progression until they start approaching menopause. Then it is not unusual for the HCV to progress rapidly. Depression and stress are definitely factors here, too. So is diet.
The day you were born, you entered a family shaken up by the almost death of your mom. I'm not surprised that your mom's death in 2012 resulted in your having a complicated grief. (People grieve differently, and there's no set amount of time for a person to "relearn her world" after someone significant dies, but you list examples of what is termed complicated grief. Here's a link about it: http://www.mayoclinic.org/diseases-conditions/complicated-grief/basics/symptoms/con-20032765)
Back to diet: in a way, you're not eating alone, because there's the adult Irene, who has written this very articulate post, and inside of her is the scared girl Irene, who needs mothering. You've mothered a child. Can you nourish the scared child inside of you by helping her choose foods that will enable her to grow strong and well? Meals don't have to be labor-intensive*: are there any raw vegetables, such as baby carrots, that you like and could keep handy? Try to increase the amount of non-processed foods and decrease foods laden with salt and sugar.
As for being scared of treatment, it's the rare person who isn't scared to begin HCV treatment. But you've found these forums where we're here for each other. We're here for you, Irene. One day at a time, and you'll get there.
Gnatty
*As Rita Rudner said, "I read recipes the same way I read science fiction. I get to the end and say to myself 'well, that's not going to happen.'"
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Hi Irene,
I second what Gnatty says here. If I could just add something to the comments about diet, as a F4 you will find that regular small meals through the day, say every 2-3 hours, will help. This will be easier for your liver to process than a couple of big meals and are often easier to prepare as you can just have one or two things then something different later without having to match it all up into a "meal" and so can result in a well balanced diet. So sort of snack or graze your way through the day and if you eat lunch with your daughter maybe look at making that the main meal of the day with a couple of light snacks in both the morning and evening. I think you will find that once you get use to doing that it will help balance your blood levels and general health and give you more energy.
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Hi Irene as another post menopausal woman whose hcv seemed to skyrocket in severity after i hit 50, welcome to the club! I was hitting the same sorts of benchmarks you've posted: getting sicker, seeing edema, albumin tanking ...
It all comes down to this: you need to be treated no matter your ambivalent feelings. Treatment is your best shot at a cure. A life.
Start thinking in terms of living, not dying. Then work towards that.
Sounds tough I know. But you have to do it.
If you're interested, I did a long radio interview about living with hep c. It touches on many of the things you mention, because I went through them too. You're not alone in this. This forum is full of people who can help.
https://m.soundcloud.com/abcnsw/sets/living-with-hep-c-jane-kibbles
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Thanks everyone. Can I ask, with a Cirrhosis dx, was is prognosis after treatment? Can I still live a long life?
I'm scared of that more than the treatment :-)
Thanks for having me here. Hope to contribute to it all as well as a "dragonslayer!"
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Irene
Glad Gnatty hit on the emotional part of all of this. Your awareness of your poor diet is the first step. I'm a guy and I prepare meals from scratch twice a day and have done so for 30 years or more. Food pep does not have to be a pain (in fact it is fun and relaxing) and I can prepare a very healthy gourmet meal in the time it takes to cook a frozen dinner. In the words of the late Walter Brennan "no brag just fact." :)
Have you ever had a "fibroscan" or biopsy? You discuss 'fibrosure' in your post. If not, you may want to ask your doctor for a scan. Fibroscan is becoming the gold standard to determine liver stiffness over the majority of the liver. It is especially sensitive for the higher scores.
Menopause was mentioned. Another thing happens when menstruation stops and that is that women might then begin to store excess iron like men. Menstruation is a natural form of bloodletting which keeps iron levels lower. Hepatitis can greatly increase iron stores in the body which is liver toxic. You can discuss a 'ferratin' blood test with your doc. He may have already done one.
Lastly, you are discovering all of this a a good time. Finally the meds available have an incredibly high cure rate. If you just peruse this site you will find countless examples of incredible cures and wonderful 'turn-arounds'. We will hear from you soon with your own encouraging posts. You are going to be OK.
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Thanks everyone. Can I ask, with a Cirrhosis dx, was is prognosis after treatment? Can I still live a long life?
I'm scared of that more than the treatment :-)
Thanks for having me here. Hope to contribute to it all as well as a "dragonslayer!"
Here is the basics of cirrhosis. Currently cirrhosis is based on scores of a few different kinds. The most used, at least in my own discoveries are F1-F4 and Liver stiffness score 0 to 75+ . Cirrhosis has it's own levels and complications, and starts at a fibroscan (liver stiffness) score of 12 and up from there. Cirrhosis is essentially advanced fibrosis...scar tissue.
Lynn will chime in I hope. However, fibrosis and cirrhosis, when the causative factor is removed will generally stay the same or, or improve. Some cases of improvement appear to be dramatic, however, mostly improvement is a slow process. Some advanced cases appear to hold strong and a relatively normal life can ensue if great care is taken to protect the liver.
There have been many studies posted on this site that show fibrosis reversal after the burden (HCV, HBV, alcoholic, etc) is removed. There are current studies going on that will shed more light on this. However, to be taken with a grain of salt, I have read many posts and heard many reports of reversal. Also to be taken with a grain of salt is my own situation whereby a score of 14.8 reversed to and score of 6.1. I have tried to be careful posting about this, but I do have the labs to back it up. If one or both of the scans were not flawed, then that is some encouraging news.
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Hi Irene, and welcome to the forums! The important thing to know is that your Hep C can now be cured - and relatively easily. And then your liver-related issues will start to disappear. Even cirrhosis can apparently undo itself to some degree, once the virus is eliminated.
Everyone here has covered all the major points in your situation - diet, menopause, etc. I wanted to add that, as a 2b, you have an alternative to Sovaldi+ribavirin. Namely, 12 weeks of Sovaldi+Daklinza. That way you can avoid the ribavirin and have an equal or greater cure rate than the Sovaldi+riba. (But they are each a very high cure rate, virtually guaranteeing cure).
If you can get Sovaldi+Daklinza through your insurance, great. If not, you can get it via the worldwide Redemption 2 trial being run by fixhepc.com. In that case, you pay for the drugs yourself: $1,400. And they ship them to you. Relevant link is here: http://fixhepc.com/redemption-2.html
Best of luck to you, and keep us posted. :)
kim
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Hi Irene
I was diagnosed with cirrhosis in Jan 2008 with liver biopsy and am still going strong. I also had a fibroscan in the fall of 2014 and my score was 27
The single most important thing we can do is to stop the progression of liver damage by treating and curing our hep c.
I have read that at minimum we won't get any worse and it is possible per some studies for us to improve. But either way we should with care be able to live a normal life span. Our only concern would be that we are at risk of Heptocellular carcinoma (HCC) so we will need to be monitored every 6 months probably for the resat of our lives for early indications of liver cancer by having a blood test called AFP and abdominal ultrasounds.
Things my doctor had me do on diagnosis with cirrhosis:
Get vaccinated against Hep A and Hep B
Get the pneumonia Vaccine
Have an upper endoscopy to check for esophageal varicies
We should get a flu vaccine every year as soon as they are available.
This year I got the new Prevnar13 pneumonia vaccine as well.
Things you can do
Avoid salt. I guess the recommendation is less than 1200 mg per day for those with cirrhosis.
Also a liver friendly diet. You can look up a heart smart diet which is also a liver friendly diet.
Don't forget to get your regular medical checks that everyone should. Don't just focus on cirrhosis and forget about the rest of your body.
My doctor says the only OTC pain med I should take is Tylenol but you need to be careful with that med and make sure you don't take more than 2000 mg/day and I wouldn't take it for many days in a row just for occasional use as excess Tylenol can harm the liver. There is some debate about Tylenol here in the forum so just go with your hepatologists recommendation.
I am assuming you are seeing a hepatologist associated with a liver transplant center not because we need to be on the transplant list right now but because they are in the best position to provide us with the proper care with having cirrhosis.
The reason for Tylenol is because other OTC pain meds can be a concern for those with bleeding problems and because we have low platelet counts from cirrhosis that is the issue.
Another thing you want to find out is your MELD score or your Child Pugh score. They are composite scores from some of your blood tests you already have. They are used to see where you should be on the transplant list. Most centers require a MELD above 15 to get on the list. My Meld score is 8. The scale goes from 6 to 40 and most patients depending on the transplant centers demand are being transplanted at scores above 30.
Either I or others here can explain more about MELD or anything else you are curious about ask away.
I would look into the Sovaldi Daklinza option as Kim suggests. Also if you do go with the Sovaldi Ribavirin route there is some data suggesting 16 week of treatment would be more effective for GT 2 with cirrhosis based on the American Association for the Study of Liver Disease most recent Guidelines (AASLD)
http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection
Welcome to the forum and good luck
Lynn
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Hi Irene,
Thanks for your post. For me, I had grown so used to suffering the effects and possible consequences of hep C that it was difficult (but interesting) to change my perspective when this new treatment came along, and consider - what if I were to live a long (or longer) life?
This new treatment isn't any more frightening than having a sometimes strange flu, and not a really bad one - and that's only for me, many people have no side effects.
It's hard for some people to be hopeful (and possible unwise), maybe that's where you are at, but I am sometimes getting so hopeful and excited (when I read that yet another person has had their tests back undetected) at the high probability that I will be free of this virus. And then I pull myself back to my tried and true world of skepticism - just in case I have to face a different fate.
I wish you well with your decisions - it's almost in your hands, I hope you can see through the past into a great opportunity for your future.
Hazel
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Hey Irene
Welcome to the best HCV forum around! Everyone here has been there, done that and so forth. There's nothing to be afraid of, but fear itself. These new medicines do work, but you must stay on the appropriate regimen in order to get rid of the virus. Although, I'm a different genotype, Harvoni is definitely putting me on the right track.
Now for diet. You must regroup and resign yourself to eat properly and rest when your body requires it. Stay away from alcohol, certain drugs, or anything that may accelerate the decline of the liver. The liver thrives on B vitamins. Greens are important. I have been juicing for a long time, and it really makes the liver feel good. Get rid of TV dinners and processed foods. Also, stay away from fatty foods because it makes the liver work too hard.
As for your eyes, as we get older, (I can attest to this) many of us get dry eye syndrome. That can be alleviated by eye drops. Many of your ailments could be associated with just plain neglect of listening to your body. Although, HCV creates certain problems, as we age, we acquire other medical conditions. You must not make yourself crazy worrying, you need to focus on healing. Try a soothing massage or see if you can take a long walk to ease stress.
Remember, there is an end in sight for the HCV. Hang in there, girl!!
Health Gal