70 years old, recently diagnosed with Hep C and Cirrhossis

[BJW]

Hello to all, I'm new here and this is my first post. I was diagnosed with Hep C and "possible" Cirrhosis about a month ago. I had an endoscopy and some blood tests, including AST (234)ALT(156) AFP Tumor Marker (157), PT 14.8 and Prothrombin Time INR (1.4). I know these results are all too high, and am not quite sure what to make of them, but as I'm sure other people on this forum know, this is some scary stuff when it just seems to come out of the blue. I had no symptoms that I recognized, except that I seemed to bruise easily. That is, until I woke up one morning with red swollen legs and feet. I have no idea how or when I contracted HEP C, as I have never injected drugs, had tattoos, etc. The only thing that possibly could have happened that I can think of is when I was a Medic in the Army way back in 1968, and have also been reading up on the "air guns" that they use to immunize us all back then, but that's a whole other story, dealing with the VA, etc. Anyway, I drank fairly heavily for about 35 years before quitting for two years totally starting in 2008 and then resuming moderate drinking (maybe five or six drinks a month, when going out to eat, etc.) So, in other words, I can understand the cirrhosis I guess, but not the HEP C. Sorry this is so long and I'm rambling, but am just looking for some answers from people who know more than I do about this stuff. Thanks

[Lynn K]

Hi BJW and welcome,

I know most who have no idea how they may have contracted hep c find it frustrating to realize they may never know how, where, and when they may have contracted hep c but that is the case for a significant number of patients.

The evelated liver enzymes mean something is currently bothering your liver. Once your hep c is cured your liver enzymes will likely return to normal range. The bruising is associated with your elevated PTT/INR test results simply put it takes our blood longer to clot so we bruise more easily. Prolonged clotting times is a common symptom of liver disease.

The swelling in the lower legs is called pitting edema a common noticeable first symptom of cirrhosis. This can be treated by trying to minimize your sodium (salt) intake to less than 1,200 mg/day if that is not enough to alleviate symptoms your doctor may prescribe a diuretic.

The AFP tumor marker is used  in conjunction with ultrasound to monitor for possible HCC (heptocellular carcinoma aka liver cancer) as we with cirrhosis are at an increased risk.

The good news is that with cure our risk of liver cancer drops significantly. My AFP was not quite as high about 57 but now is I believe 8 just one point above normal.

Right now other than having all testing recommended by your doctor the best you can do is to take the best care of your health you can. If you are still drinking stop. Try to eat healthy and get some exercise as tolerated and your doctor approved. If overweight try to get into normal range. Avoid all medication prescribed or otc as well as any herbal meds unless specifically approved by your hepatologist. Get vaccinated against hepatitis A and B if you are not and get your flu shot early every year.

I was in the Army. I believe I was infected in 1978 and was cured after being infected for probably 37 years but unfortunately I was diagnosed with cirrhosis after being infected for 30 years. I was cured about 3 years 6 months ago with my 5th treatment.

Let me know if you have any questions I can help you with

Best of luck
Lynn

[BJW]

Thanks so much for your reply Lynn, I've read through some of these questions and your replies. You obviously know what you're talking about, given your signature and battles you've gone through with various treatments, etc. I didn't mention that I'm on meds for my blood pressure, which has been on the high side for awhile, prescribed by my cardiologist, which is 50 mg a day of spironolactone and also 30 mg of propranolol, prescribed by my gastro doc. I did quit drinking as soon as I was diagnosed, no problem there, as I hadn't been drinking very much at all anyway by then, so it was an easy decision. I think I was looking for a reason to quit anyway, so it was a no-brainer. I try to drink plenty of water, and eating a lot of vegetables and fruit, don't have much of an appetite though, and have lost about 18 pounds over the last two months. Anyway, I've got an appointment with gastro doctor next week, so am hoping that I can learn a little more about what's going on and when I can start treatments, etc. I like this doctor personally, but sometimes I think it's hard to get ahold of him by phone, he's got a lot of patients I guess. Anyway, didn't mean to write a book here, lol. Thanks again, will be checking into this site often, there's a lot of useful info here

[lporterrn]

Hi BJW,
Good for you for stopping drinking. It sounds like you are getting a fast education on a subject most of us would rather avoid. Lots of experience here - feel free to ask anything.

[Lynn K]

Ok so I was taking spironolactone for my edema and small amount of ascities. I was getting a lot of leg and foot cramps and decided I would rather live with my mild edema and anyway it seems my edema has improved a little post treatment. So if anything they could up your dose of spironolactone maybe to help with your edema.

I was found to have grade three esophageal varicies which we discussed the use of a beta blocker propranolol as that is a common treatment. The goal with using propranolol for varicies is to reduce blood pressure by slowing the heart rate to less than 60 BPM but as my resting heart rate is about 50 BPM that was not an option so I underwent multiple banding sessions to eridicate my varicies.

So anyway both of the meds you mentioned you are taking are also used with cirrhosis.

It does sound like you are on a good path health wise better than me lol I need to take some of my own advice about weight, diet and exercise

Let us know if you have any questions as you get further along in the process.

[BJW]

Thanks so much for your reply Lynn, I've read through some of these questions and your replies. You obviously know what you're talking about, given your signature and battles you've gone through with various treatments, etc. I didn't mention that I'm on meds for my blood pressure, which has been on the high side for awhile, prescribed by my cardiologist, which is 50 mg a day of spironolactone and also 30 mg of propranolol, prescribed by my gastro doc. I did quit drinking as soon as I was diagnosed, no problem there, as I hadn't been drinking very much at all anyway by then, so it was an easy decision. I think I was looking for a reason to quit anyway, so it was a no-brainer. I try to drink plenty of water, and eating a lot of vegetables and fruit, don't have much of an appetite though, and have lost about 18 pounds over the last two months. Anyway, I've got an appointment with gastro doctor next week, so am hoping that I can learn a little more about what's going on and when I can start treatments, etc. I like this doctor personally, but sometimes I think it's hard to get ahold of him by phone, he's got a lot of patients I guess. Anyway, didn't mean to write a book here, lol. Thanks again, will be checking into this site often, there's a lot of useful info here

Hi BJW,
Good for you for stopping drinking. It sounds like you are getting a fast education on a subject most of us would rather avoid. Lots of experience here - feel free to ask anything.

  Hi Iporterrn, and thanks for your reply. I will be getting a CT 3-phase of my liver before seeing Doc next Monday, so am thinking he probably wants to determine how much damage , or what stage of cirrhosis? My endoscopy showed "Grade one esophageal varices", Portal hypertensive gastropathy", and "Normal examined duodenum." So I'm getting a pretty intensive screening, not sure whether he will want to do a biopsy or not. Anyhow, that's where it stands now, just kind of feel like a guy in court waiting around for a verdict right now..LOL

[BJW]

Hi BJW,
Good for you for stopping drinking. It sounds like you are getting a fast education on a subject most of us would rather avoid. Lots of experience here - feel free to ask anything.

Ok so I was taking spironolactone for my edema and small amount of ascities. I was getting a lot of leg and foot cramps and decided I would rather live with my mild edema and anyway it seems my edema has improved a little post treatment. So if anything they could up your dose of spironolactone maybe to help with your edema.

I was found to have grade three esophageal varicies which we discussed the use of a beta blocker propranolol as that is a common treatment. The goal with using propranolol for varicies is to reduce blood pressure by slowing the heart rate to less than 60 BPM but as my resting heart rate is about 50 BPM that was not an option so I underwent multiple banding sessions to eridicate my varicies.

So anyway both of the meds you mentioned you are taking are also used with cirrhosis.

It does sound like you are on a good path health wise better than me lol I need to take some of my own advice about weight, diet and exercise

Let us know if you have any questions as you get further along in the process.

Hi BJW,
Good for you for stopping drinking. It sounds like you are getting a fast education on a subject most of us would rather avoid. Lots of experience here - feel free to ask anything.

Ok so I was taking spironolactone for my edema and small amount of ascities. I was getting a lot of leg and foot cramps and decided I would rather live with my mild edema and anyway it seems my edema has improved a little post treatment. So if anything they could up your dose of spironolactone maybe to help with your edema.

I was found to have grade three esophageal varicies which we discussed the use of a beta blocker propranolol as that is a common treatment. The goal with using propranolol for varicies is to reduce blood pressure by slowing the heart rate to less than 60 BPM but as my resting heart rate is about 50 BPM that was not an option so I underwent multiple banding sessions to eridicate my varicies.   It's interesting that you mentioned your heart rate being around 50BPM, because mine is about that also right now, and it used to be around 60-75 before starting both the spiro and the prop meds. I asked my primary care doc about it and he said as long as I didn't feel tired or weak, that I shouldn't worry about it, but I do anyway. On the other hand , the on-call GI doctor just said "I'll make this simple, if it's below 60, don't take anything", which I didn't think was much of an answer, especially after saying he was too busy to talk about it any more. So now I continue on taking the same dose as I was, wondering about whether it's safe or not. My wife is an RN and says it's not a good idea to be changing this stuff around, so here I sit scratching my head and wondering what the hell I'm supposed to do. Guess I will find out when I see the main guy next Monday. It's frustrating the hell out of me right now, but figure I might as well just relax and keep monitoring heart rate and bp

So anyway both of the meds you mentioned you are taking are also used with cirrhosis.

It does sound like you are on a good path health wise better than me lol I need to take some of my own advice about weight, diet and exercise

Let us know if you have any questions as you get further along in the process.

Hi BJW,
Good for you for stopping drinking. It sounds like you are getting a fast education on a subject most of us would rather avoid. Lots of experience here - feel free to ask anything.

[BJW]

Ok so I was taking spironolactone for my edema and small amount of ascities. I was getting a lot of leg and foot cramps and decided I would rather live with my mild edema and anyway it seems my edema has improved a little post treatment. So if anything they could up your dose of spironolactone maybe to help with your edema.

I was found to have grade three esophageal varicies which we discussed the use of a beta blocker propranolol as that is a common treatment. The goal with using propranolol for varicies is to reduce blood pressure by slowing the heart rate to less than 60 BPM but as my resting heart rate is about 50 BPM that was not an option so I underwent multiple banding sessions to eridicate my varicies.                                                                                                     


So anyway both of the meds you mentioned you are taking are also used with cirrhosis.

It does sound like you are on a good path health wise better than me lol I need to take some of my own advice about weight, diet and exercise

Let us know if you have any questions as you get further along in the process.

Sorry for putting my reply in the middle of your post, I'm still getting used to posting replies on a forum like this. This might not be the right place either LOL. I'll figure it out eventually I guess

[Lynn K]

Basically how far advanced your cirrhosis is defined by symptomology
This has a really good breakdown
https://www.livestrong.com/article/240024-what-are-the-4-stages-of-cirrhosis/

Stage 1 Cirrhosis

Stage 1 is the earliest stage of cirrhosis and is characterized by the absence of two significant complications known as varices and ascites. Varices are dilated, ballooned veins. They are most often located in the lining of the esophagus and/or stomach. Acsites refers to an accumulation of fluid in the abdominal cavity. Both varices and ascites develop primarily because of obstructed blood flow through the liver, a condition known as portal hypertension. While people with stage 1 cirrhosis have extensive liver scarring, it is not severe enough to cause substantial portal hypertension and its complications.

Stage 1 cirrhosis is considered compensated cirrhosis. This means that despite extensive damage, the liver is not yet so severely scarred that clinically apparent signs of liver failure have developed. People with stage 1 cirrhosis generally do not experience many symptoms other than perhaps lack of energy and fatigue. Stage 1 cirrhosis is potentially reversible if the underlying cause of the cirrhosis is eliminated or cured.

Stage 2 Cirrhosis

Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. While the development of esophageal varices indicates worsening cirrhosis and an increased risk of dying in the next 12 months, stage 2 cirrhosis is still considered compensated cirrhosis. There remains the potential for at least partial reversal of liver damage if the underlying cause of cirrhosis is eliminated or cured.

Stage 3 Cirrhosis

Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices. The volume of ascites varies from being detectable only with imaging tests, such as abdominal ultrasound, to obvious bloating of the abdomen. The development of ascites signals worsening portal hypertension due to advancing liver scarring and deterioration of liver function. Stage 3 cirrhosis signals decompensated cirrhosis, meaning the liver is failing. Once decompensated cirrhosis develops, liver scarring is irreversible and evaluation for liver transplantation is generally recommended. A variety of signs and symptoms may be present with stage 3 cirrhosis, including:
pale and/or yellowish skin
weight loss and loss of appetite
shortness of breath
extreme fatigue
persistent, widespread itchiness
swelling of the feet, ankles and lower legs
wasting of the muscles of the arms and legs

Stage 4 Cirrhosis

The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach. This type of bleeding can be immediately life threatening if not controlled. Even if bleeding stops or is medically controlled, however, individuals with stage 4 cirrhosis still face a high risk of dying within 12 months. Persons with stage 4 cirrhosis have end-stage liver disease and urgent evaluation for possible liver transplantation is necessary. Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:
confusion, personality changes and/or extreme sleepiness
hand tremors
reduced urination, which may indicate kidney failure
high fever, signalling infection of the abdominal cavity

[Lynn K]

One thing you can do is just select quick reply that way you don’t quote everything that has came before

My upper endoscopies also show portal hypertensive gastropathy. My first EGD after I was initially diagnosed showed grade 1 varicies so we repeated in two years where I now had grade 2 varicies. My third EGD one year later showed grade 3 varicies. This was 3 years after I was initially diagnosed with cirrhosis.

[BJW]

Thanks so much for all this valuable info, I'm not so sure I like hearing some of it, but it's starting to make sense, regarding the stages of cirrhosis, which has really been keep me up worrying about what could happen. I did a calculation based on info I found on Wikipedia, to determine my MELD score, which is 14. According to the chart, this is a relatively low ranking for getting a liver transplant, which is something I'd certainly want to avoid if possible. So, I'm looking at that as a positive thing at least. My GI doc seemed confident that I'll respond to treatment well, and generally has a positive attitude, so far at least, so there is that. I've been as pro-active as I know how to be since I was diagnosed, including light exercise (walking and light strength training, drinking about 2 quarts of water a day, taking milk thistle ,etc. ,also cutting back on meat proteins,etc. Right now I have a good attitude mentally but have a tendency towards depression due to the unexpected death of my 36 year old daughter four months ago. To sum it up, to be quite honest, it has been one lousy year for me, just praying for some better news. All the help I am getting on this forum from you and others is greatly appreciated. I hope to be able to offer help to others when and if I make it through

[Lynn K]

From what I understand you would need a MELD score of at least 15 to qualify for transplant. Most people receiving transplants have MELD scores around 30 or greater depending onthe transplant center. Even once approved you would still need an evaluation including your health ans social support network to determine your ability to survive a transplant. I believe there is also an upper age cut off but I am not sure how high that is.

The good news is that with cure your liver disease should stop prtogresding and could even improve somewhat depending on how far advanced your cirrhosis is.

Cirrhosis is a slow acting illness especially when the cause of the damage has been removed. For myself I am MELD 7 the lowest score possible  is MELD 6. I have had cirrhosis for 11 years now still kicking at 60.

So very sorry to read of your loss of your daughter I cannot imagine how difficult that was for you. Sending you a long distance hug.

If you want some more to read there is a ton of information here.

https://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring

[BJW]

Hello everybody, I have a lot of time on my hands these days so I thought I'd post an update. I started my Harvoni two weeks ago, after jumping though all kinds of hoops to finally receive my meds, it all ended up well. First of all, my drs office had not received my lab results needed that stated my Geno type, which is 1b. Because it was sent to the wrong office. I guess the computers weren't communicating, or something LOL.After resolving that, I got in touch with Briova Rx pharmacy, which in turn got me hooked up with Gilead Asequa, which is the manufacturer of Harvoni. Anyway, after about ten attempts to resolve everything, I ended up with a $1000 deductible, then it was reduced to nothing because of the great drug assistance program offered by Gilead. I made a $5.00 co-payment and that was it! So, that was really worth all the trouble and then some, knowing how expensive this stuff is, coming in at about $1000 a pill. My wife had a total ankle replacement done on the 13th of this month, so I've been doing my best t care for her, plus dealing with contractors who are doing maor innovations on our house. I never really had much problems with headaches, until they came in here my first week taking Harvoni, hammering all over the place for about an hour or so. It was all I could do to say, "Dammit, enough of that bs, stop that hammering before I throw something at you." LOL  I do have some fatigue, insomnia, and get depressed, partly because my wife is depressed and will be going through a lot of rehab before she has to get the other ankle replaced, probably next year. So between us we have a lot on our plate. But we're hanging in there and helping each other out. It helps that she is an RN, but she once warned me that "nurses make lousy patients"

[Lynn K]

Glad to hear you were able to get everything sorted out and were able to get the meds with maximum discounts.

Best of luck on your treatment and wishing your wife a speedy recovery

[BJW]

Thanks Lynn, all the best. I'll update this thread every once in awhile