Start treatment and have surgery

[Faithdove]

My husband is seeing doc next week to hopefully start treatment with the newly approved Sofo with RBV and INF. he has issues with his shoulder and thinks he can get surgery for that while starting this treatment. I do not know yet if his doc will prescribe this regimen and even if his insurance will cover it. (Express scripts). From all I have read, for his Hep C genotype 1a, he is going to have to get the INF regardless. Sooooo.....what do you all think. I am so worried about him, when he had is liver biopsy it said he was at a 3/4 ?? Not sure what that means.he has a lot of sensitivity in the area of his liver, and to me, has also appears to have fluid buildup. He looks 8 months pregnant to me, and the way his stomach bulges, i can't believe it is just fat. If it were you would you attempt shoulder surgery while on treatment. When he had his other shoulder done a few years ago, it was a living hell....please please ....tell me what you think. I can't stand to see him in all this pain. He also has much fatigue and sleepless nights and joint pain in general, I try to watch how much Advil he takes, because I know that is not good for the liver.

[ppmguy]

     is your husband seeing a hepatologist?  i would think he needs expert evaluation, with the sx you have given.  internet advice would not be appropriate for possible cirrhosis

[Advocate1955]

I would not recommend surgery while undergoing treatment for Hep C.  Treatment drugs will lower his white count and likely cause some anemia, both of which could make surgery more risky.  Also, depending upon the exact stage of his liver damage, a surgeon may or may not be willing to do the surgery.  Surgery can cause the liver to decompensate (stop working properly), so usually a surgeon will need a hepatologist to approve the patient for surgery before agreeing to do it.  If the surgery was difficult before, it is likely to be difficult again.  Much depends on the exact stage of Cirrhosis.  When you say 3/4, I don't know if you mean F3 (Fibrosis stage 3), or if you mean some other gradated stage of advanced Cirrhosis.  If your husband were F3, he would not have any physical symptoms of Cirrhosis, e.g. his tummy wouldn't be swollen, unless he's overweight.  If your husband already has Cirrhosis, and his tummy is swollen, then it is likely that he has advanced Cirrhosis with ascites (fluid collected on the abdomen), which is a sign that the liver is not working well.  You and your husband really need to read the liver biopsy report or consult with the hepatologist to have a complete understanding of his exact stage of liver damage.
If he is F3, a hepatologist may approve the surgery and a surgeon may do the surgery, but probably not at the same time as Hep C treatment.  If he has advanced Cirrhosis, with ascites, a hepatologist will probably not approve the surgery as it may cause his liver to fail.  
Your husband should NOT be taking Advil or any other NSAIDS without approval from a hepatologist.  In fact, he should not be taking any medication or herbal supplements without approval from a hepatologist.  Until he knows for sure whether he is F3 or Cirrhosis, he should avoid red meat, limit sodium, and not take any vitamins with iron.  He should eat more veggies and fruits, preferably organic, and try to make sure he is at a good BMI.
Keep us posted and let us know what a hepatologist recommends.
Advocate1955

[Faithdove]

Thank you for the responses. My husband is seeing a Gastroenterologist who has patients with Hep C. What a nightmare, he was in a car accident and had 6 surgeries and then had to have gall bladder removed a few months later. When he was in the ICU for the accident, in a coma for a month, that is when a nurse stuck himself with a needle and protocol called for my hubby to be tested...So we later found out about the Hep C. Oh it has been a wonderful year. I got his report and it was done in May and says Grade 3-4 fibrosis suggestive of early cirrhosis. I will ask his doctor for more of an explanation because that is a bit vague to me. I felt the same as you mentioned, and we should wait with surgery. What kind of painkillers can he take? He is definitely overweight and has a weakness for sugar. I have my hands full, for sure. I love to make salads and fish, but unless he hears it from the doctor, he likes to fight me on what is best. I really appreciate your help. I do research and he just wants me to do it but not tell him, it is as if he doesn't want to think about it. Thank you again, I wish you a happy holiday. I will check in again, if there is any other advice you can give, please do. It feels so good to have people here I can go to for support and strength for my husband.

[Faithdove]

I should add I see on the biopsy report "moderate portal fibrosis including extensive bridging, suggesting early cirrhosis." So does that mean he does have cirrhosis for sure? I hope since May, it hasn't progressed.

[Advocate1955]

Thanks for looking that information up.  From what I'm understanding, the liver biopsy showed F3 (Fibrosis 3), which is the stage before Cirrhosis.  This is good, because the liver has the capacity to regenerate and repair itself before the stage of Cirrhosis is reached.
Your husband has a lot of health issues that can be complicated by as well as complicate treatment for Hep C.  Being overweight can be a contributing factor  to liver disease and also to treating Hep C in several different ways.  One way is that being overweight can cause one to have "fatty liver" (a higher number of fat cells in the liver) which places an extra burden on the liver.  Another way is that overweight people tend to have a lower cure rate.  A third way is that should the time come that your husband ever requires a liver transplant, his BMI must be below a certain number to qualify.  So, for all those reasons, getting to and maintaining an ideal BMI is a positive step.  Additionally diet is important in taking care of the liver.  Generally speaking, a low fat, healthy diet, high in veggies and fruit, preferably organic, is good.  Sugar can be a problem.  You didn't mention if he has been tested for diabetes, but being overweight and having a sweet tooth puts him at risk for diabetes.  Hep C treatments can be very hard on the body and diabetes can complicate treatment.  If he doesn't have diabetes, he should try very hard to prevent it with diet.  If he does have diabetes, he should try very hard to control it.
For the time being, I would try to get him to eat healthier (low fat, reduced sodium, low sugar/sugar free, more fruits and veggies), I would try to get him to walk for 20 minutes each day outside in the fresh air, and I would make sure he doesn't take any vitamins with iron supplements.  Regular vitamins are OK, but no iron.  As far as pain control, he should avoid all NSAIDS, and medications that are filtered through the liver.  I would ask his doctor which pain medications are OK for the liver and advise him to use them in moderation.  Of course, he will need to not drink alcohol or use any recreational drugs.
Also, remember, it is his body and his health.  It is important for him to take ownership in the things that will help his health.  You can't do it for him, and you aren't responsible.  You can support him and help him, but he will make his own choices.  With the number of issues that he is facing, he may be feeling depressed or hopeless as well.
Although F3 is the stage before Cirrhosis, a good gastroenterologist or hepatologist will treat him as if he has Cirrhosis, to be on the safe side.
Advocate1955

[ppmguy]

        biopsy results will show grade and stage.  grade is a # given to assess the inflamation;
      grade #1 being mild
                #2 being moderate
               #3-4 being severe

      staging is the level of fibrosis
      stage #0 being no scarring
                #1 minimal fibrosis
               #2 fibrosis outside of blood vessels
               #3 bridging fibrosis
              #4  being cirrhosis

      be careful and ask ??s.   a full evaluation by a hepatologist for a biopsy with grade3 and stage 4.

[Faithdove]

Thank you, I wii ask his doctor about testing for pre-diabetes. He does have. increased urination, increased thirst, fatigue,  increased hunger. He dies not drink alcohol so I think sugar is his vice. He definitely has to get his BMI down. After his accident he had so many surgeries with issues from broken bones, bleeding on brain, ( thank goodness no brain damage) collapsed lungs, fractured vertebrae, broken ribs, radius and fractured leg...I could go on.....I had to wait a few months before I could give him the hep C news.i hope he doesn't have diabetes too.  I have Muktiple Sclerosis, so I am supposed to reduce stress... Lol....there are days I don't want to get out of bed, but knowing we are a team, I keep moving. I need to start exercising again too.

[Faithdove]

Thank you for this info. It shows me more details that I will question the doctor. ;)

[Faithdove]

Typo.....multiple sclerosis....need more coffee...

[Advocate1955]

You have a lot on your plate.  Be sure to take care of yourself too.  Coffee is a good start!
Your hubby needs a good hepatologist, in order to determine which is the top priority right now:  the surgery on the shoulder or treating the Hep C to prevent further damage to the liver, and also to monitor the state of his liver so that he doesn't have untreated symptoms of decompensated liver (e.g. varices, ascites, or hepatic encephalopathy).
Advocate1955

[ppmguy]

       I also have MS with my liver disease.  i am in a similar situation, with my wife battling cancer. i take care of her.  take care of yourself, and best of luck  to the two of you

[Faithdove]

Thank you for your response and telling me about your MS. I am hoping your liver disease is under control? Did you go through treatment? I hope your wife is doing well and the doctors have the cancer under care. Oh boy, I am so sorry. Please take care of yourself too. I have started to take time out for meditation, despite working full time as well. I do my best when I am on a exercise regime and I have 2 days to get moving because I promised my doc and myself to get my butt moving on a routine in Jan. With MS, if we don't have a good muscle base and an exacerbation hits, it is not good. God bless you my friend. I was diagnosed in 1996 and have been on the injectable Copaxone since 1999. I also am on a plethora of vitamins and supplements in addition to a few Prescription drugs. I lost 25 pounds after my husbands accident running non stop and felt the best I have felt since I can remember. My neurologist also helped me with some other tests and holistic approaches that I know are helping. Losing the extra weight is surely a plus. I also stopped eating all bread and cookies, cakes and try to avoid gluten and am amazed at how much better I feel, plus it helps keep the weight off. I decided to try it on my own ( not tested for celiac) and since I feel better, more energy, lost weight and my skin is flawless! So I tested it by eating sugar laden pies and cakes and cookies, and my face broke out, I was irritable, and felt sluggish...connection? I think so!!

[Faithdove]

Hello, thank you for this information, it made me do some more era each and I found this! http://www.hivandhepatitis.com/hep_c/news/2011/0125_2010_b.html
Have you ever seen this correlation between BMI and amount of RBV and treatment success. Since I am now really worried about his BMI, and there is no way he is going to loose weight prior to treatment, I have to hit his gastroenterologist with every angle. So besides success rate of treatment, the other thing you mentioned about him not being able to get on a transplant list with a high BMI, I am really freaking. I don't want to mention it to him now but will in the doc office tomorrow. When that doctor sees me coming with my little notebook, he must think....oh boy I am never getting out of here, the question woman is here. I just can't wait until tomorrow is over and we can just take the next step towards treatment. My hubby already thinks he is going to be laid up from day one. I hope we can get on the Sof/RBI/Inf for 12 weeks, that would be good. I am praying that since he got through that horrific accident, God has plans for him here and that staying as positive and upbeat as I can will help him through it.

[ppmguy]

       i did clear the hep c virus, and it has been a god send for my ms. i couldnt agree with you more, movement and ressistance exercise, along with a good diet has done more for me than drugs.  i am ppms thus my forum name, and DMDs do nothing for me.  Enjoy the holidays!!
barry

[Advocate1955]

Hi Faithdove,
Here are some questions that I have posted in my journal.  I combined some questions that HectorSF and Orphanedhawk, two other forum members had posted in past threads, and you are welcome to use them, modify them to suit your purpose when you and your husband see his doctor next:

http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist

It may vary from state to state, but here in Washington, I believe one's BMI needs to be under 40 in order to be considered for a transplant.  There are many other qualifying criteria as well.  My guess is that your hubby can only handle one thing at a time, so it may be good to start with one or two changes at a time.  For example, start incorporating a healthy, liver friendly diet first.  Reduce or eliminate sugar next.  Restrict red meat and iron supplements next.  Lower sodium next.  And so on....

Be aware that Interferon and Ribavirin both have significant mental health side effect possibilities.  Both can cause depression and anxiety, and it sounds like your hubby may be having some struggles with one or both already.  Some doctors will start a patient on a low dose of an anti depressant or an anti anxiety before starting treatment for this reason, to help with the negative psychological side effects.

Really, it will take a good hepatologist to guide the process of which health issues to address first.

Keep us posted.

Advocate1955

[ceanothus]

I'm a little late to this party, but wanted to add my two cents anyway. You've gotten a lot of great advise and I just wanted to add a little emphasis to some of it. Your husband's gastroenterologist may be adequate, but that level of training is not optimal. My own excellent gastroenterologist immediately referred me on to a really good hepatologist just as soon as he was sure I had Hepatitis C (back around 1990). I liked my gastroenterologist and was sorry to move on, but ever since I have been very grateful that he did move me on up the line. If your husband has cirrhosis or if any complications arise during tx it can be dangerous to proceed without the extra level of education and experience that a hepatologist has. Please consider again whether you really want to start tx under the care of a gastro instead of a hepatologist. The more damaged the liver is when going into tx, the greater the risk of complications arising during tx, and if that happens you will surely be safer if you are in the hands of one who has a higher level training and more specific experience.

As to the shoulder surgery, I also want to urge your husband to consider it very carefully. I've been through a horrible time with both of my hands, with osteoarthritis in the basal thumb joints causing really significant pain and loss of functioning in both hands. I basically de-evolved into a mammal without one of our greatest advancements: opposable thumbs. This problem reached a crisis point three years ago but I was also about to begin my third attempt at tx to eradicate the virus. Having done tx twice before, I knew better than to try joint replacement surgery while on tx. Believe me, there is only so much a mere mortal can bear at once. I treated for 48 weeks, finishing tx in Sept. 2012, and achieved SVR as of March 2013. It took a full year to get most of the way recovered from tx. I still suffer excessive fatigue and some digestive issues, but I think those are from the cirrhosis, which can't be cured. In the summer of 2013 I finally felt well enough to tackle some of the other big issues. In mid-August 2013 I had joint replacement surgery on my right thumb and by November it was functioning far better  than before surgery. On Dec 2 I had the same done on my left hand. I'm quite sure I could not have handled this surgery while on tx or even immediately after. I hope your husband can be persuaded to spread these things out, or I'm afraid he may be setting himself up for failure in one or both counts. These things are so hard, and take so much out of you, that its a horrible waste to not give them the best odds you possibly can.

For the pain meds issue, it really depends on exactly what kind of pain and it does require a good doctor's advice. The ground rules however, are no NSAIDs (no aspirin, ibuprofen, naproxen, none of those meds, whether Rx or OTC. Most patients can take Tylenol, but within limits. At doses less than 2000 mg/day, Tylenol is the safest pain med for patients with liver disease, however, at higher doses it can be one of the most dangerous. It can cause even a healthy liver to fail completely and irretrievably when an overdose is taken, so you must read labels carefully. Do not take the full 2000 mg in Tylenol tablets and then add on some other mixed medicine that contains Tylenol in its list of multiple ingredients! If the pain is severe enough to warrant, most liver patient can take narcotics if care is taken about the Tylenol frequently added to these drugs. It also has to be carefully tallied into the daily total.

For arthritis-type pain there are a few other non-NSAID meds that can slowly help to relieve inflammation. I get some relief from both Plaquenil and Limbrel, and a good rheumatologist would be able to advise on this subject. Good luck! Breaking the sugar habit is also a really hard thing to do. I confess to being a sugar addict myself, in a fairly classic sense, with occasional periods of being clean of sugar, sometimes as long as a year, but with frequent relapses back into addiction and resultant weight gain. I'm on one of those binges right now and hoping to get clean again soon. Its hard!!!

[Faithdove]

Thank you everyone! I am armed with my questions and the apt is at 1:45 tomorrow . Will post to let you know what happens. I mentioned to my husband about going to a hepatologist, but he wants to stay with this doctor, so I won't rock the boat. I researched each of the three drugs and listed what I hope to hear from this doctor, if not, the questions shall come in. I will definitely start off with asking him how much time he has to answer my questions, so I know which ones to make priority. Stay tuned!!!!

[Advocate1955]

Best of luck with the appt.
Keep us posted.
Advocate1955

[Faithdove]

We went to the apt and it went really well. Almost every question I was going to ask, the doctor answered as he spoke to us. I did ask him what Stage we are at and he said 3-4 and we don't have time to wait for the next set of drugs. He really was excited about Sovaldi and said he is going to a big conference on Jan 9 so he may learn more info from peers. He was concerned about the price and said at $1000 a pill for 12 weeks, we have to be sure we can afford it and check insurance coverage. He wrote out the scripts for three drugs and told us to check the insurance. I asked him about getting him on an antidepressant now, and he said that Zoloft is a good one but to clear it with his primary when we go to see him to get his BP meds refilled. So my hubby asked him, how sick will I get, I can go into work right? The doc said, oh you will get sick, so it will not be easy and once you start, you have to stick to it as prescribed. I told the doc that I told him he would feel sick, but I was too much of a chicken to give him details. The doctor said, that other people have gone through the older treatments for up to a year (or more) and that 12 weeks is so much better, but still you will feel sick. Then my hubby asked about the surgery and the doc gave him a one word answer..."No". Again the doc mentioned the price of the drug and was hoping the insurance would work out, he was worried we might end up with a Hugh out of pocket say, $20,000. So we got home and looked up his insurance, and I couldn't believe it, they will cover Solvaldi and his copayment for 90 day is $50! We have to get on phone tomorrow and let him know we are covered and so next he can go in for the baseline bloodwork, get on that antidepressant, and when all the meds come in, start treatment. I will keep posting and let's hope that nothing changes with the cost in 2014, or you will hear me screaming...I swear I hope that wasn't a typo...but it said, your copayment is $50 and what we will pay is $999,980!

[ppmguy]

       great news!!!  i started zoloft when i treated last time.  it took 16 days to kick in, but when it did i did settle down.  it caused a little anxiety while waiting for it to work, but was worth it. your copays sound right to me.  
barry

[WyoSue]

If you don't mind my asking, what insurance do you have? I hope it's Blue Cross and they'll cover my treatment, too.

[Advocate1955]

You will probably have a co-pay for both the Interferon and the Ribavirin as well, but it will probably be similar if the co-pay for Sovaldi is $50 per month. I'm glad to hear that your hepa said no to surgery while on treatment and I'm also glad he's willing to recommend starting an anti depressant ahead of time.
Good luck and keep us posted.
Advocate1955

[ceanothus]

I am very impressed. It sounds like your gastroenterologist is both smart and caring, really far more on the ball than most are. He's handling things pretty much perfectly so far and that means a great deal when it comes to your husband's odds of success. Just make sure your husband follows all the rules of treatment. The treatments are rough but effective if done right, and its a massive waste of energy and money to do them half-heartedly. My personal best guess for the timing of the shoulder surgery would be to wait six months after treatment, but maybe this short 12 week tx will have him recovered enough to do it a month or two later if all goes well. The HCV is life-threatening, so give it top priority in tx. Best wishes!