New to Medhelp

[1SusieQ]

I am a new member with advanced HCV & Cirrhosis. Genotype 1, stage 4.  I acquired this insidious affliction 12 years ago.  I am disillusioned with the medical establishment due to their lack of caring and support.  I am hoping that this support group will help me in making wise decisions in my treatment and lifestyle.  I have not been offered treatment, so I am at a loss as to what I can do?  Any suggestions shall be very much appreciated as my support heretofore is pretty much non-existent.  Please advise if this is not the proper place to post this.

[nan535]

It doesn't surprise me at all  that you didn't think to include the information about the tumors and cancer.  I hope you have a support caregiver you can count on. With hepatic encephalopathy ,there will be times where the confusion will be even greater.  I don't know how my husband would have gotten through his experience without having had me to support him through it. He too, had HE, portal hypertension, and esophageal and stomach varices due to Hep C and the resulting end stage liver disease.
He tried treatment but only lasted 5 weeks because he had decompensated liver disease.  He doesn't regret trying treatment because he remained "non-quantifiable" for 8 months.  A liver transplant followed. He is still recovering - had some complications- but it was all worth it.

This is a very tough road you will be traveling.  You wiill find great support and info on this forum. Hopefully you will also have someone to support you at home.
Wishing you the best,
Nan

[1SusieQ]

I want to thank you and your brother for working and putting so much time into the work you are doing for HCV.  I  pray that  a lot of good things will come our way because of your sacrifices.

[1SusieQ]

I have learned a lot and remembered other things.  Thank you all.  I hadn't mentioned this yet-I wanted to see what you thought so far.  Also, it doesn't feel " real" until I Go to San Antonio on Sept. 5th.  My doctor there has been watching a mass for all of this year.  My alpha fetoprotein score last time was 83.  At our last visit my doctor mentioned tumors and cancer.  More tests were run and that's where I am now.  Hindsight is always 20/20 and I should have said that first.  I am praying for a miracle, but I try not to think about it, especially because I haven't gotten results first.  Sorry, I guess it took a lot for me to even write that down.

[PeachStatePam]

There is so much good information on this thread but the main reason that the doctor probably isn't treating you is low platelets.   There are rescue meds for red and white blood cells (Procrit and Neupogen) but there isn't a rescue med for low platelets.   If they are already low, then you won't be put on treatment.   Things like heart problems, lung problems, epilepsy, etc. can also prevent you from being treated.  As mentioned, get to a hepatologist at a liver transplant center so that when the time comes for a transplant you will already have your foot in the door.   Meanwhile just keep taking care of yourself the best that you can.   Eat right, keep exercising, keep a positive attitide and keep learning as much as you can to be your own best advocate.   Stay away from red meats, fried foods - common sense type things.   Eat lots of fruits and vegetables - especially avocados and artichokes.   A small dose of Milk Thistle could be added (check with your doctor).   I have cirrhosis and take 240mg. in the morning and at night.   Start with one a day to see how you do.   Don't buy 1000mg. from Walmart.   Remember everything is processed through your liver so with cirrhosis we have to be careful of everything we ingest, put on our skin or inhale.   I have a friend who went from diagnosis to transplant in 9 months.  No chance to treat.   He got his liver transplant and after the transplant he did a year of treatment and cleared the virus.   He just had his 12 year liver birthday and is doing great!    There are many people out there like that so always stay hopeful and positive.   What was your last platelet count, red and white blood cell count?   Albumin?   Get copies of all your labs and learn to read them.  There are many online sites that supply lab info.   Hepatitis-Central is one that has a good lab area as does HCV Advocate.    Good luck!

[Advocate1955]

Hi Susie,
So it sounds like your liver is decompensated if you have Hepatic Encephalopathy.  It is likely that your doctor hasn't offered treatment for your Hep C because the medications would be too dangerous for your liver.  It is possible that the Hep C medications could destabilize your liver further and cause it to fail.  However, I think it is a good idea to make an appointment and talk to your hepatologist as soon as possible so that you can ask these questions and get answers to these questions.  As others have said above, it is crucial that your hepatologist is monitoring your liver frequently and treating your Hepatic Encephalopathy and other symptoms of decompensated liver as well.  You may have other complications of decompensation that could come up as well, many of which could be life threatening.  If your doctor is unable to treat your Hep C, and if your liver is decompensated, the next step is to be evaluated for the possibility of a liver transplant and try to get on a transplant list.
Advocate1955

[Idyllic]

Hey Susie
Here is the thread you were referring to. Willy gave a good explanation of how a topic gets bumped up every time someone posts to it.

I will send you the link in your notes or messages (whichever works - depending on whether you adjusted your settings).

I can imagine how strenuous and overwhelming this must be. Unfortunately I agree with the others. Hepatitis C is the kind of disease where you have to know more than the people treating you. It is shocking how many people in the medical field have no idea how HCV works. It was difficult for me since I hate confrontation and being a pest but I am telling you unless you come out and ask questions very little will fall into place.

I I am in San Antonio and I remember the first time I was going to treat I was going to see a Hepatologist named Robert McFadden. My PCP was very impressed with him and encouraged me to try and see him. He did not accept my insurance so I saw a GI she recommended. I remember his office was really on the ball. This was several years ago however.

http://www.christussantarosa.org/body.cfm?id=16&action=detail&ref=1998

[HectorSF]

Hi.

You mention in your other newest post that you have hepatic encephalopathy? So you were diagnosed with hepatic encephalopathy? For how long? What symptoms of HE are you experiencing?

Mental Signs of HE:
* Forgetfulness, mild confusion
* Poor judgment
* Being extra nervous or excited
* Not knowing where they are or where they're going
* Inappropriate behavior or severe personality changes

Physical Signs of HE:
* Breath with a musty or sweet odor
* Change in sleep patterns
* Worsening of handwriting or loss of other small hand movements
* Movements or shaking of hands or arms
* Slurred speech
* Slowed or sluggish movement

Are you taking Lactulose and Xifaxan to manage your HE episodes? HE is a sign of DEcompensated cirrhosis. Perhaps that is why you have not been offered hepatitis C treatment. Patients with decompensated cirrhosis liver disease to usually too advanced to undergo treatment.

In order for us to be more helpful to you we need more information regarding your current health issues. Such as your MELD score, blood levels, biopsy report, any symptoms or complications you are experience besides HE. Any treatment drugs you are taking for your cirrhosis.

If you doctor has decided not to treat your hepatitis C when are they going to put you on the transplant list? Without treatment in time you will need a transplant.

Hector

[rivll]

Hi dear,
If you have hepatic enceph. then you probably should have someone go with you to the Dr. and get your answers.
Even without those problems, it is easy to forget questions, try to get someone to go with you.
If you must go alone then take the list of questions Orphanhawk listed with you and ask the Dr. to write the answers for you or tape record it.
What you need to know is if they will treat you.
Why or why not?
If not, what steps will be taken to help you get on the transplant list and to help you get through this time?
Good luck to you and please stay in touch.

[rivll]

Hi Susie just boosting your thread to the top. Now you will have acess to all the replies you got yesterday.
Hang in there, hon. We understand.

[ceanothus]

I agree with Advocate, something doesn't add up here. I think the thing to do here is to take charge more yourself. Ask your doctors directly WHY they haven't offered you treatment for the HCV. If you have someone close to you who is available it might prove very helpful to have them accompany you while having exams and discussions with your doctors. Make sure that your care at Baylor is overseen by an actual hepatologist who has experience with HCV treatments, cirrhosis and transplants, then get an appointment and go in with a list of questions and a supportive person to help make sure they are answered. One important tip: always put the most important questions at the top of your list. Studies have shown that doctors tend to deal most thoroughly with the top one or two questions, while patients often tend to ease into things by listing a few less important items and building up gradually to what really matters – which then ends up so fat down the list that the doctor never gets to it. Getting your questions in the best order can be key to getting the best care. You have every right to expect them to explain what can be done for your particular set of circumstances. You should ask specifically about your treatment options. Ask for copies of ALL your test and biopsy results. Make notes during your visit if you don't have someone else along to help you remember what was said. I can't even guess at the number of times my husband remembered important details that I had no recollection of at all, but it is scary how often it has happened! Let us know how your next visit goes, and good luck!

[Advocate1955]

You have Hep C, Cirrhosis, you are being seen by a hepatologist in a hospital with a transplant center, but your doctor hasn't suggested trying to treat your Hep C? I don't understand. If your liver were decompensated, treatment would be too dangerous, but your liver is compensated. I am missing something.
Advocate1955

[crossroadsec]

Welcome to the forum. I know you'll find lots of support in your medical care and decision making process here. I wasn't offered treatment at first either. Stage 4 is scary, but you can do it. I finished in May and an still undetected, living with cirrhosis. Many on this forum have also had success with the new treatment. Keep your chin up.
There are always options. Good luck as you begin the journey. Karen :)

[can-do-man]

It seems SusieQ is going to the right place.

"Thanks for your info.  I do go to the Methodist Specialty Hospital in San Antonio.  There is a transplant center there."
----------------------------------
Good luck Susie, Hoping you get somme answers on your next visit.

[HectorSF]

Seeing that you have both  HCV & Cirrhosis you need to see a hepatologist at a transplant center. It appears that you have been seeing the wrong type of doctors. You need to be evaluated to find out the extent of your liver disease and then have the proper treatment ASAP. Hopefully your liver disease hasn't progressed to the point of not being to treat your hepatitis C.

Here is a list of transplant centers near you. Call one and get an appointment as soon as you can.

------------------------------------------------------------------------------
The best in your area is Baylor...

The Methodist Hospital Baylor College of Medicine
http://www.methodisthealth.com/mcldt.cfm?id=35631
Houston, TX
The Methodist Center for Liver Disease and Transplantation
6550 Fannin Street
Smith Tower, 12th Floor
Houston, Texas 77030
Contact us at
866-94-LIVER
(866-945-4837)

Hermann Hospital University of Texas at Houston
Houston, TX
713-704-3450
Hepatological
Chronic and acute liver disease
Viral hepatitis
Biliary-pancreatic disorders
Bile duct cancer
Intestinal failure
Acute liver failure
Liver cirrhosis
Liver cancer
Fatty liver disease
In 2012, the Digestive Disease Center and the Texas Liver Center formed the Gastroenterology Center of Excellence, which will broaden our service offering and further our collaborative, multidisciplinary approach to caring for our patients.

St Lukes Episcopal Hospital
Houston, TX
[phone]

Methodist Specialty & Transplant Hospital
San Antonio, TX
[phone]

The Methodist Hospital Baylor College of Medicine
Houston, TX
[phone]

Texas Children's Hospital
Houston, TX
[phone]

Good luck!
Hector

[coeric]

it is good you are being seen at a transplant center. one of the things i have noticed is that many of the symptoms i experienced and considered significant were discounted by the clinicians.  one thing i tried to remember was that the transplant docs see patients everyday that are at the end stages of this disease. and my complaints probably seemed trivial.
also patience is key.  the workups to treatment, the treatment and finally waiting to find out if the treatment works takes many months.  for me the whole process will take 88 weeks.
many blessings
eric

[1SusieQ]

I appreciate your information and concern.  I got HepC when I was 40 and when you are older, the process goes a lot faster.  I do not drink or do drugs. I got this when a "guest" used my allergy needles in my refrigerator and put them back.  It took my friends awhile to figure it out, but that's what happened. I have extreme allergies and kept my needles in the fridge by my serum.  I never would have thought he would do something like that!  I have the informationyou asked for somewhere and will have to dig it out.  I am sorry to have to go now, I am so tired all of the time.  Thank you for caring.

[1SusieQ]

Thanks for your info.  I do go to the Methodist Specialty Hospital in San Antonio.  There is a transplant center there.  No one has treated me and that concerns me.  When I go to San Antonio on Sept. 5th I have a lot of questions.  I don't if my cirrhosis is compensated or not.

[orphanedhawk]

Welcome to the forum.

We always have to be proactive with our treatment. Even the best doctors only see us for a brief period of time.

It's important to write your questions down and bring them with you to your appointment. Ask specifically why they are not recommending treatment for you. Those with cirrhosis need treatment the most but if your liver has already decompensated, it is difficult for treatment to work in ridding you of the virus.
Still, your doctor's should be doing something !

There is a list of questions for newbies to ask their doctor as well as a link to recommended docs by our members for treatment on my profile. You can click on my avatar, ( the little picture of a hawk) to get to my page. Look in my profile.

Medhelp also has a new forum for cirrhosis. You might want to check in there too.

BTW: I had decompensated cirrhosis, did tx, relapsed and had a transplant. In March I finished treatment for hep C. This time it was much easier.

[coeric]

glad to read that your meld score is low, so hopefully the cirrhosis is compensated.  

i had a workup at a transplant hospital. the doc said i was experiencing cirrhosis and sever portal hypertension with esophageal varices, but the doc did not offer me treatment. i asked to treated, and then it took a couple of months before i could start.

of course there are often other diseases present with cirrhosis that make it difficult to treat patients with the existing therapy.  hopefully in three years treatments will be available to patients that cannot currently treat with the existing drugs.
blessings
eric

[1SusieQ]

Thanks.  I go to the Methodist Hospital in San Antonio.  They have a transplant section and I see doctors there. Thanks for your welcome.  No one has offered me treatment.  I plan to ask about it when I go back on Sept. 5th.

[rivll]

Greetings and welcome to the forum,
So the question is, have you not been offered treatment because they feel you will not be able to survive the side effects or are there other reasons?
It is important to ask these questions, as their lack of information can be interpreted as indifference. But there may be other reasons why they don't want to treat.
If they do not want to treat you now and if it is because you have decompensated cirrhosis, then you need to ask them what can be done, are they going to wait until your MELD score is high enough to put you on the transplant list?
There are people on this forum who have had a transplant or are waiting who can better inform you as to the questions and steps you need to work on with your team. Don't wait for the Medical establishment to work for you--I believe they note those candidates who are most proactive about their health and show a strong willingness to fight for their lives. Demonstrate to them that you will go the whole 9 yards...
Good luck to you.

[trolleater]

   YOU ARE AT THE RIGHT PLACE....

Now If you have not been, get to a Hepatologist, or a G.I. that deals with hep c , that is most important, a good Dr. will give you all the info that you need, and will let you know about the treatment options.
  This is a long road you are going to walk, and there are many of us who are walking it with you, on this site you will find unselfish guidance and direction, from people just like you..            

  The best of luck, and keep us informed, feel free to browse others on this site, and you will see that a lot of us, including myself, have been right there were you are.
                                             Trolleater

[ceanothus]

Oops, I'm too slow at typing and you've filled in some info in the meantime. Can you share your biopsy reports with us, the specific wording, and an you tells us what symptoms you are experiencing, and what your MELD score is? Hector is one of our best experts for people in your situation, and I know he will need more information in order to be most helpful. I'm so sorry that your doctors aren't communicating well with you! That happens all too frequently, but is still inexcusable!

[ceanothus]

Hi SusieQ, and welcome to the forum. This is undoubtably the very best place to go for both support and to learn more about the disease and your options. We have some members here who are practically walking encyclopedias and nearly all our members are genuinely caring. In the rare situation where a member may answer with dubious "facts", it is never just allowed to pass – someone always challenges anything dubious, which makes this such an outstanding place for good information.

I'm also infected with genotype 1a (since 1984) and I also have cirrhosis. I must say, if you are correct about only having had it for 12 years, then it has progressed extraordinarily quickly in your case. It usually takes between 20-30 years to progress to cirrhosis. Do you drink alcohol on a regular basis, or use any medicines that might be hard on the liver, or are you perhaps exposed to more toxins than is usual in your work environment? If you have cirrhosis you urgently need to be under the care of a competent hepatologist, preferably at a liver transplant center, since those doctors have the most training and experience in helping patients with cirrhosis. You need to see a hepatologist every six months for a checkup including blood tests and a screening abdominal ultrasound (because cirrhotics are at increased risk of developing liver cancer). Your hepatologist can determine whether treatment is appropriate for you. Usually it is considered pretty urgent for patients with stage 3 fibrosis or stage 4 cirrhosis, but if your cirrhosis has decompensated then you might be too sick for treatment. In decompensated cirrhotics the treatment can push the liver over the edge and cause full-blown failure, which in turn means a transplant is the only hope for survival. Ideally one wants to treat the disease before any cirrhosis occurs, but certainly before any decompensation starts. I've been diagnosed with cirrhosis since 2005 and I treated unsuccessfully from 2005-2006 and started the newer triple tx this last October. I will finish it on Sept. 22 and have a 64% chance of success this time.

Keep on asking questions!