Hepatitis Forums
Hepatitis C Main Forums => I Just Tested Positive for Hepatitis C => Topic started by: lynnm on October 25, 2015, 08:26:05 pm
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I was just told by my primary Dr I have a VL of 4.5 million and the "beginning of cirrhosis of the liver" determined by an ultrasound. I just started Medicare, so the bulk of the cost for treatment will be covered. Just a few thousand will have to come from me if I am prescribed Harvoni or Sovaldi.
I have been reading a few posts in the various topics and I noticed some people are going to a GI doctor.
My primary referred me to an infectious disease Dr. Should I be asking to go to a GI? I don't have a lot of confidence in this primary which is why I am wondering if he is sending me to the best kind of Dr.
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Hi Lynn. I don't know the answer to your question, but I just wanted to say welcome to the forums! I think you will find a lot of knowledgable and supportive people here.
My own thinking about which doctor to go to is: whichever doctor as an individual has the most experience with Hep C patients and the new drugs. You won't always know that from the doctor's formal "specialty" title. I do think it is possible that an Infectious Disease doctor may be dealing with a lot of Hep C patients. He/she may have even chosen to specialize in that aspect of infectious diseases.You could try plugging the name of the doctor your GP wants to send you to into one of those Rate Your Doctor websites and see what patients have to say. One such website is here: https://www.ratemds.com/
Others here may have better advice for you.
best,
kim :)
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Thank you KimInTheForest, for the welcome and the good idea. I will do just that!
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Welcome, Lynn. Kim is correct that a particular infectious disease doctor may specialize in hepatitis, whereas most do not. The same is true of gastroenterologists. The GIs I have gone to for colonoscopies, for example, don't specialize in hepatitis, but they, and my GP, all recommended the same doctor for hepatitis. I second Kim's idea of checking Rate Your Doctor sites. Good luck.
Gnatty
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Hi Lynnm
I would make a appointment and ask them point blank what they know about HCV and the new treatments.No doctor worth his degree would be insulted by someone being straight forward with them.
You might even call the health department in your area and ask what doctors there deal with HCV.Just a thought.
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Thank you all. I used the link that KimInTheForest listed and the dr I was referred to has two reviews. Both bad. I am hesitant to even go to him. I will be making calls today.
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Hu lynnm,
Just to add my 2 cents if you have cirrhosis of the liver you should try to be seen by a Hepatologist (liver doctor) associated with a liver transplant center who is familiar with treating hepatitis c patients if possible.
Not to say you need a transplant but a hepatologist is in the best position to follow a patient like myself with advanced liver disease.
Having the "beginnings of Cirrhosis" is like being a "little bit" pregnant. Having cirrhosis is a significant medical condition and you should be under the care of a liver specialist if you do infact have cirrhosis.
Do you know how your doctor made this diagnosis? Have you had either a liver biopsy, or a fibro sure blood test or a fibroscan test (kind of like an ultra sound)?
Have you had any abdominal ultrasounds?
If you have cirrhosis you would also need to have a screening upper endoscopy to check for enlarged blood vessels in your lower swallowing tube (esophagus) which are called esophageal varicies. You should also be vaccinated against hepatitis A and B if you haven't been previously and also the pneumonia vaccine.
Please let me know if you have any questions. I was diagnosed with "early" cirrhosis Jan 2008 on a liver biopsy.
Good luck
Lynn
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Lynn K,
WOW. Thank you for all that info. The only tests i had were the blood tests and then an abdominal ultrasound which is what he used to determine i had the "beginning of cirrhosis'.
I am still on my quest for the 'right' doctor, who accepts my medicare advantage plan and who has good to better reviews. I will now start looking at Hepatologists.
This info you gave me gives me a giant head start on whenever i do see a specialist. I can't imagine i need a transplant. I am the healthiest person I know.
I may not get an appointment for a few months, judging from what some of these other doctor offices are telling me. So, i have time to armor myself with all the right questions. I can only guess that when i do see the doctor s/he may order more tests, which i didnt realize were going to be needed. (sigh)
I am so very thankful for this forum and the members who advise and support each other.
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Lynn K,
You had the beginning of cirrhosis in 2008 and now you have advanced?
I'm assuming you had the Hep C treatment. That didn't help stop the advancing of the cirrhosis?
Lynn
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Lynnm, Welcome to the forums. No doubt You will get a lot of Your questions answered here , or at least pointed in the right direction. I was extremely lucky in that I was referred to a G.I. by a coworker for a colonoscopy when I was considering the new Meds.coming out for Hep C. It just so happens that he specializes in Hep C treatment. I was waiting for an appointment with a leading Hepatologist that is on the board of directors with Texas Liver Institute. Had many referrals for Hep C treatment as well as liver transplants to him. But after meeting My G.I. I guess it was Providence or just blind luck I saw him when I did. He said I was a prime candidate for Harvoni & I was fast tracked to treatment. The rest is history. Keep Your chin up, keep researching , & keep looking for the Doc. You feel comfortable with. I am excited for You and sure You will find Your cure soon!
Keep posting & keep us updated as You go along! Glad for You and welcome to Team Hep! :D :D :D :D :D :D :D :D :D
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Hi Lynn
There was no treatment until this last year so yes over the years from 2008 I developed pitting edema (swelling) in my lower legs.
By 2012 developed grade 3 esophageal varicies that I had to have banded. Also my platelet count is in the 90's when minimum normal is 150. The edema, varicies and low platelet count are due to portal hypertension which is caused by cirrhosis.
I treated from Nov 2014 to May 2015 with Harvoni for 24 weeks and Ribavin for 15 of those weeks and was still not detected at 12 weeks post. So most consider that cured.
Being cured means I won't continue to have liver damage from the hep c virus and with time my liver may improve. My risk of liver cancer (HCC) is also reduced with cure but I will still be at a higher risk for HCC than other people without cirrhosis. I will have to have blood testing and abdominal ultrasounds every six months to watch for the possible development HCC for the rest of my life.
Since I had esophageal varicies I will also have an upper endoscopy every year at least for the foreseeable future.
Technically I was a child "A" in 2008 and I still am Child "A" or a MELD score 8 then and now. But yes I did develop symptoms over the years since.
https://en.m.wikipedia.org/wiki/Child-Pugh_score
http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/
https://en.m.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease
http://reference.medscape.com/calculator/meld-score-end-stage-liver-disease
Good luck to you
The other Lynn
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Hi Tommy, Thank you for the pep talk. I think i will not start treatment until January so the bills all fall into the same year of insurance coverage. Otherwise, it will cost me a lot more. It is good to see your great results.
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Lynn K
You have been through a lot. Thank you so much for sharing all this knowledge. I had no idea this could be so complicated. When i had "serum hepatitis" in 1972 all i remember is i went in hospital for maybe 2 weeks. I don't really know what they did but the jaundice and itching went away so i thought that was the end of that.
Now, it seems there is more to it, for some reason.
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What tests did your doctor to determine you have beginning of cirrhosis?
Have you had a liver biopsy? Or did you have a fibrosure blood testing or a fibroscan?
Do you know your Child score or your MELD score?
Unfortunately hep c about 75% of the time goes on to be a chronic condition slowly attacking our livers for many years. They didn't have a test for hep c until about 1989 before that they just called it non A non B
Anyway once you get treated and cured you will stop any further progression and can live a normal life span as long as you take care of you liver by following your doctors recommendations eating a "heart smart" diet which is also a liver smart diet.
No alcohol or smoking if you do drink or smoke you need to quit.
Be careful with OTC pain meds. Ask your doctor but Tylenol is recommended for patients with cirrhosis vs. Advil or Aleve or similar as they can pose a bleeding risk. Tylenol is safe as long as you don't take more than 2000 mg a day and remember acetaminophen (Tylenol) is often contained in combo meds like multi-symptom cold meds so it is easy to take more than you realize.
Lynn
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Lynn K,
The primary dr looked at the ultrasound results and based on that he told me i have beginning of cirrhosis. No other tests other than the blood work that determined VL for Hep C.
I've never smoked so that is easy not to do. Having drinks with dinner when out with friends, well, that i do. I also drink with benadryl to get to sleep. I take ibuprofen often for headaches and for my back. Take muscle relaxers for my back when needed. Guess there will need to be some changes ahead.
Thanks for the heads up.
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Yeah with cirrhosis you absolutely cannot drink alcohol ever again.
Consider it a small price to pay to choose life.
Hopefully you can get a fibroscan to confirm your diagnosis.
good luck
Lynn
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Lynnm,
Welcome to the forum...you have come to the right place for both support and information.
I know first hand how devastating it is to hear this diagnosis for the first time. I, too, felt like my world was collapsing around me when given the diagnosis of chronic HCV. But, in a strange kind of way, it has helped me slow down and appreciate my life, my husband, my family and my dear friends. I have also considered myself to be healthy and have always been very active.
I have just finished the halfway point in my treatment today, and feel very positive about my future and being cured.
Best to you and keep us posted on your progress.
Mary
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Thank you, Mary. You are very kind. This forum has already been a blessing.
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Lynn,Lynnm,and Mary,and a host of others,
All I can say is that I'm happy for all of us.By the time we're done dragons will be a endangered species and I for one sure as hell won't miss them. :)
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Bill, best of luck with your treatment!!
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I just want to say, I ended up going to a GI Dr and I don't know if it matters if you go to a GI Dr or an Infectious Disease Dr, in the end.
I am on the Harvoni for almost two weeks now. No side effects, I don't think (I get headaches from sinus so no way to tell about the headaches)
I am totally psyched. After being on Harvoni for one week my AST ALT and platelets are all in normal range! My AST and ALT have been out of normal since as far back as 2008, possibly before then. And in one week they are now in the normal range!
It seems almost like a waste to stay on this for three months, but of course I will. I am just so impressed with how quickly I am seeing positive results. I hope everyone that has this is able to somehow get this med.
Big smiles from this end of the forum!
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Congrats Lynn! Great that you were able to start treatment. :)
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For a patient without liver damage an infectious disease specialist familiar with treating hep c is fine.
But for a patient with significant liver damage and especially liver cirrhosis you should be followed by at least a gastroenterologist or if you have cirrhosis you should be followed by a hepatologist as they are best equipped to follow a patient with advanced liver disease.
Congrats to all the dragon slayers!
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Thank you for that clarification, Lynn. I'm glad i went to the dr i chose cause his nurse really works for you to get the insurance to cover the bulk of the cost.
Sounds like going to a GI is best cause people may not know, ahead of time, whether they have cirrhosis or fibrosis. I do have fibrosis a bit but i am hoping that will see some improvement, as well.
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Hi,
Looks like you are on your way!
Coach Mike
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Wow Coach Mike, looking at your stats i was surprised to see your ALT and AST so high with a VL of 600K. Obviously, one is not directly related to each other.
re my cost, my dr's nurse told me about PAN. I got their grant or whatever it is called and so this is not costing me anything. But if i had fallen into a higher income bracket I would not have qualified. I'm sure there are many out there that would not qualify for that help. Thank you so much for the tip in case i had needed it.
Lynn
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Hi,
My initial v/l was 4.9 million
ALT 225
AST 128
After 18 months of no alcohol, no fats, lots of milk thistle,
they went down to the below levels. Four weeks on generic harvoni and I was undetected and enzymes normal.
I have heard of far higher enzymes. In the thousands.
Alcohol is about the worst thing a personal can force on the liver. Fighting the virus and dealing with alcohol is a losing battle.
CM
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Coach Mike,
I am impressed that the milk thistle made that much of an improvement. I knew about no alcohol, did not know about the fats.
Afterward, fats are okay, right?
I know alcohol is not supposed to be consumed again. But, if there are no viruses at all I am not really understanding why no alcohol on occasion.
Once I am off the Harvoni I intend to go on milk thistle. I was told not to by dr while on the drug tho. (Also to throw away my toothbrush if my gums bleed while brushing. When platelets were low my gums bled for no reason at all, that seems to be in the past now, whew).
I met a woman, a nurse actually but I met her socially, who has Hep C. She is what she calls a 'functioning alcoholic'. She was giving me all kinds of advice - in her stupor. How wine is better than mixed drinks and just megadose on milk thistle. Obviously, I am not following her path. But, funny how people seem to cope and justify things.
lynn
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As far as social drinking that has been discussed and argued here a lot kind of a hot button topic.
But anyway if the patient has little to no liver damage then an occasional glass of wine or an occasional beer ect should be fine. But if the person has more significant damage especially F3 fibrosis of F4 cirrhosis they should abstain from alcohol completely.
Low platelets is often the first lab test to indicate liver cirrhosis due to the spleen becoming enlarged which is caused by cirrhosis and sequestering platelets.
I was diagnosed with cirrhosis Jan 08 the last time I had any alcohol was the New Years just before I was diagnosed. My last glass of champagne or any alcohol 01/01/08
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Thank you Lynn!!!
lynn
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I don't know the answer to your question, but my husband and I both went to the same doctor - as LynnK suggested, a Gastroenterologist who specialized in Hepatology (the liver). They are very knowledgeable with hooking you up for meds as well as their specialization in the liver, varicies and other issues that go along with HepC.
As others have said, welcome to the forums, and best wishes on your journey. :)
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It seems almost like a waste to stay on this for three months, but of course I will. I am just so impressed with how quickly I am seeing positive results. I hope everyone that has this is able to somehow get this med.
The reason we treat for the length of time recommended is to make sure all the virus is gone to prevent relapse of Hep c.
When I treated in 2014 with Sovaldi/Olysio for 12 weeks I was not detected at week 4 and end of treatment but when I was tested 12 weeks after I had completed I had relapsed.
In Nov 2014 I began treatment with Harvoni for 24 weeks and in Oct 2015 at 24 weeks post I was still not detected for hep c and cured. My situation is not yours so not to worry. I was a 3 time null responder to interferon based treatment and have had cirrhosis for 8 years so I was one of the most difficult to cure.
But yeah that is why we treat for as long as we do
Good luck
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Thank you, CureSeeker. I ended up with a GI and happy I switched from the Infectious Disease Dr who I was referred to, initially. The ID Dr may have been okay, I never tried him out. But, I know I am happy with this GI Dr. and especially the nurse that handles all the clerical issues.
Lynn
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Lynn K, again thank you for sharing your wealth of knowledge!
Lynn