Hep C Treatment - 2nd Opinions - Advice

I recently found I have Hep C, probably got it in 1974-1975. I have felt progressively worse over the last couple of years until it was diagnosed. Went through the battery of tests, liver biopsy, CT scan, sonogram, endoscopy, colonoscopy, constant blood withdrawal and when I went to see what my fate is yesterday I was told to go to KC to 'get to know' the transplant team, get on their list. He said he didn't want to alarm me, but with my low blood platelet count - runs 50 - 80 over the past year I would probably have to stop treatment as 50 was the cutoff. He asked if I wanted to start treatment or wait? I have no idea quite frankly, I said wait until next year but I guess I'll go to KC and meet the 'team'. My question? Should I bother to start treatment? I am already in crazy debt from all these tests not to mention my husband had a mitral valve replacement earlier this year we're still paying for. Would it be better to just get on the transplant list and forget about starting treatment? Who would you recommend I go see in the south central Kansas area for a 2nd opinion? I could go to other states in the area if necessary.

[desrt]

You don't say what your biopsy results were and whether you're compensated or decompensated.

[Dee1956]

Hi I am so sorry for your diagnosis.  Is your doctor a hepatologist?  Your doc doesn't sound very good from what you have said.   The transplant team could probably give you much better information as to how you are doing.  All is not lost as your current doctor seems to think.  Do you know what level your liver damage is, i.e the results of your biopsy would give you the stage and grade which is very important to know
There are others on here who are much more knowledgeable than I that will come on to help soon, it is early.
In the mean time I will try to search for the list of doctors on here that others have recommended.
More soon, hang in there
Dee

[Advocate1955]

Yes, you should definitely go to Kansas City and see a hepatologist.  Do you know if you have Cirrhosis (stage 4, also known as F-4)?  In a transplant center with an experienced hepatologist, you will be properly cared for.  If you are able to go through treatment, a hepatologist will be the best qualified person to treat you.  If your doctor feels that you are not able to go through treatment, then he/she will guide you in the next steps of liver care.  We can probably help you more if you can tell us things like what stage your liver damage is, how old you are, what genotype of Hep C you have, and what other complications you have (any ascites, varices, etc.).
Advocate1955

[can-do-man]

Besides the good questions above, did he at least tell you what genotype you are? When you say your platelets usually run between 50 and 80 over the past year does that mean you and the doctor has known this for that long and nothing has been done until now?

I agree this doctor doesn't seem to be on top of things, as for the cost of treatment will be a drop in the bucket compared to a liver transplant and even then you will still have Hep-C to deal with.

You really need to get to somebody quick that knows what they are doing...

[Asuncion]

Hi, I am sorry you have Hep C, I know how hard it is when you get your first lab results.  It is a very good idea to get a second opinion.
Treatment without insurance is VERY expensive.  If you need a transplant it means you have cirrhosis. Most treatments are less effective if you have cirrhosis. It would help to know your virus genotype, your HCV RNA level, your liver damage, your IL28B genotype, so you can research the expected treatment success ratio for you. It is important that you know that treatments don´t work for everyone. More than 70% of patients achieve SVR with triple therapy, but some people do not respond to treatment, some respond but then relapse, and others have to suspend therapy because of the side effects.
Incivek costs between $40,000 and $50,000 for a 12-week course, and you will have to budget Interferon and Ribavirin too. You will need to do hematology evaluations on weeks 2, 4, 8, 12, 24 and 48. With your low blood platelet count you might need additional meds and transfusions. You need to consider your doctor´s cost and any additional meds you might need to control side effects.
Have you consider trying to get into a clinical trial? It is not easy but it is worth trying.
http://www.clinicaltrials.gov/

Best regards,

[HectorSF]

Definitely go to an adult liver transplant center near you (with a referral from your doctor) if that is an adult transplant center and see a hepatologist ASAP. A transplant hepatologist is the only one that can help you at this stage of your liver disease.
* Make sure first the center will see you if you have no health insurance.

You need to get Health Insurance ASAP! Having cirrhosis of the liver is very expensive. I have had bills of $100,000s in the last few years just waiting for a transplant. A transplant will cost many hundreds of thousands of dollars and after transplant you will need periodic testing of your liver and health and you will take medicine for the rest of your life.
You need to find out if you qualify for Medicare or disability or something ASAP. Concentrate your time and efforts on getting insurance. Having heath insurance or not will make a huge difference in the options available to you. Talk to a social worker or your financial coordinator about healthcare coverage. Many transplant centers will not list you for transplant unless you have health insurance.

Having a platelet count between 50,000 - 80,000 means you have portal hypertension which is caused by scarring of the liver (cirrhosis). This is "complete cirrhosis". You don't have to figure out if you can treat or not. They will evaluate you (with many tests) to determine the status of your total health so they will know what your best options are. Only when they have done a full workup of your particular health will anyone know what your options are. Whatever treatment options are still available for you the transplant center in Kansas City will know.


Good luck to you!
Hector

[ceanothus]

I'm so sorry about all the levels of medical and financial difficulties you and your husband are facing. This is a hard diagnosis to handle even when it is the only problem, but it rarely is the only one. The only advice I have to offer is to please take the advice given above. Especially be sure to listen to Hector, he knows more about this than anyone else you are likely to encounter. You need a good hepatologist experienced in transplants and you need to find all the resources you can for insurance or other financial assistance. You should come back with any new questions, as we have a lot of very knowledgeable members who are also very generous about sharing that knowledge and giving of their time to help others find what they need. Good luck!

[mckansas]

I have no idea what that means.

[mckansas]

Went to a gastroenterologist, he didn't tell me what stage my liver was at, just that it was 'very damaged'. No esophageal varices, I'm 57, female, have been losing weight, abdominal pain, I don't know what to ask I guess and the docs aren't very forthcoming. I asked what my viral load was and was cryptically told, "it's very high".

[mckansas]

I have health insurance, they just don't pay for everything. Since I'm the only one working in the family it is worse to go on disability than just tough it out. I'll go to KC, doc recommended, just don't know what to ask as it doesn't make a lot of sense right now. I am probably mentally confused.

[mckansas]

Oh yeah, type 1A - so with a less than 50% chance of clearing it thru medication honestly not good odds, quality of life will probably continue to deterioate.

[mckansas]

1A - not this doc - he's the gastroenterologist. My regular doc did blood tests every year but this summer my platelets dropped below 100 and he called and said he was 'concerned'. He should have been concerned before when I was complaining, but oh well. He sent me to a hemotologist who wanted to do a bone marrow extract and I refused, asked to check my platelets again. He is the one who ordered the Hep screening and then I got the call. Sent to gastroenterologist who ordered all these other tests and ended up with an unsatisfying visit on Tuesday. I just don't know what to ask I guess.

[Asuncion]

I agree with ceanothus, HectorSF knows a LOT. You should ask the transplant center to know your options. You will have to take therapy, but you might have to wait if the doctors think your medical condition is not able to withstand it.

But your chances of clearing are more than 50% with triple therapy, they are around 70%. But you need a 48 week treatment.
In previously treated subjects who had compensated liver disease and were treated with INCIVEK in combination with peginterferon alfa and ribavirin, subjects with cirrhosis had similar Pharmacokinetics parameters compared to those without cirrhosis.

[Advocate1955]

mckansas,

I'll see if I can answer some of your questions.  

Compensated means your liver is still functioning fairly well.  Decompensated means your liver is not functioning well.  

Your doctor received the results of your liver biopsy, so he knows the specific stage of your liver disease.  He should have told you the specific results.  I recommend that you call his office today and request a copy of all of your lab results and your biopsy and CT scan results.  You need to have a clear understanding of the health of your liver, and you will need to bring copies of these reports to the hepatologist.  

Abdominal pain could come from a lot of different sources.  You might ask your doc about the possibility of gall stones given your age and recent weight loss.  It could also be caused by fluid build up, or ascites, a specific complication of advanced Cirrhosis, which causes pressure and pain in the abdominal area.

Whether your viral load is high, middle, or low doesn't matter.  What matters is that you have Hep C virus.  Regardless of the viral load, it may be continuing to damage your liver, which may eventually cause your liver to fail, so it is absolutely imperative to get in to a good hepatologist as soon as possible so that you have a specialist monitoring your care and figuring out whether or not you can handle treatment for Hep C.  

Type 1a is one of the difficulty types to treat, but it is also one of the most frequently occurring types in the U.S. and MUCH, MUCH research is being done right now to study drugs and develop drugs that will CURE type 1a.  So, we currently live in the best time in history to have potential successful treatments of type 1a.  

Do not give up hope, and do not wait.  You must get in to see the hepatologist as soon as possible to monitor the state of your liver and your portal hypertension and discuss your options.  I don't know much about platelets and portal hypertension, but Hector does.  You should refer to his email and ask him further questions.  However, I think what Hector is saying is that when you get to the hepatologist, he/she will do a work up and figure out more about the stage of your Cirrhosis and the severity of your portal hypertension, and he/she will decide if your liver can handle treatment right now, or if you need medications and care for your portal hypertension and liver disease and need to be assessed for a possible transplant in the future.  You won't have to make these decisions, your doctor will figure out what is needed at this time, and you cannot afford to wait to see him/her.

Orphaned Hawk has a great list of questions posted on her page, questions for people to consider taking to their hepatologist.  Your set of questions might be a bit different though, since we already know that you have complete Cirrhosis and portal hypertentsion.  Perhaps Hector or Orphaned Hawk can help you generate a set of specific questions.

If possible, I recommend that you take someone with you to your appt with the hepatologist, someone who can take notes and help you remember answers.  Come back and share with us here on the forum and we will do our best to help you interpret the information.  

Advocate1955

[mckansas]

OK, just called and asked to have lab reports sent to my home. I'm sure I won't have any idea what they mean, but will post info here for assistance. This doc said he was arranging the trip to KC facility so he will have referral and lab info sent there. Thanks for the help in evaluation although doc said even with triple therapy it was still 50-50, if odds are 70-30 it may be worth it.