Aa
Need Treatment
I AM LOOKING FOR A DOCTOR THAT WILL DO LESS INVASIVE TESTS THATN A LIVER BIOPSY SO I CAN BEGIN TREATMENT, I HAVE HEP C AND ADVANCED CIRRHOIS AND GETTING SICKER AND SICKER BUT CANNOT BRING MYSELF TO DO A BIOPSY. I AM TERRIFIED OF NEEDLES.
A low salt diet (no more adding salt to food, very little if any processed food) and treatment with diuretics, including spironolactone (Aldactone) and furosemide (Lasix) can prevent ascites. If you ingest too much salt you will have both edema (swelling of feet and legs) and ascities.
You should also be taking beta blockers for the esophageal varices (dilated veins in the lower esophagus) you have. You wouldn't know this unless you have an endoscopy. You need to have a doctor to manage this. It is a potentially fatal symptom of advanced cirrhosis. If you have too much blood pressure, the veins can burst and bleed. You need to find a hepatologist as soon as possible. Advanced cirrhosis is a serious illness and needs to be managed properly.Finding a very experienced hepatlologist can help to relieve many of your symptoms of advanced liver disease you are now experiencing.
Hectorsf
You should also be taking beta blockers for the esophageal varices (dilated veins in the lower esophagus) you have. You wouldn't know this unless you have an endoscopy. You need to have a doctor to manage this. It is a potentially fatal symptom of advanced cirrhosis. If you have too much blood pressure, the veins can burst and bleed. You need to find a hepatologist as soon as possible. Advanced cirrhosis is a serious illness and needs to be managed properly.Finding a very experienced hepatlologist can help to relieve many of your symptoms of advanced liver disease you are now experiencing.
Hectorsf
Hi Lisa. I am also needle phobic. Unfortunately has advanced cirrhosis means we need to be monitored constantly. Meaning in order to manage our liver disease we must have blood tests, CT scans with contrast, etc.etc. Many of these involve the need for needles. I use relaxation exercises and visualization which helps me when I undergo these procedures. I learned these from cancer care givers and patients. Cancer patients use these methods when undergoing chemo and pain from cancer.
Having decompensated cirrhosis may exclude you from treatment. Treatment can cause liver failure in patients with cirrhosis. Also you have an increased risk of life-threatening infections, especially if you have had previous infections. Since you have portal hypertension (Ascites) you will have an enlarged spleen (splenomegaly)and a low platelet count. Interferon reduces platelet counts even more. So you may need transfusions periodically to continue treatment over the year of treatment, assuming you respond to treatment. Even if a doctor will treat you, you should be on a transplant list before going on treatment.
So I would suggest finding a very experienced hepatlologist at a transplant center and consult with them. Have them get you on a transplant list. If your liver should fail because of treatment, you will have a transplant as backup. A "regular" doctor is not qualified to treat patients with cirrhosis especially someone like yourself with signs of decompensation.
Best of luck.
Hectorsf
Having decompensated cirrhosis may exclude you from treatment. Treatment can cause liver failure in patients with cirrhosis. Also you have an increased risk of life-threatening infections, especially if you have had previous infections. Since you have portal hypertension (Ascites) you will have an enlarged spleen (splenomegaly)and a low platelet count. Interferon reduces platelet counts even more. So you may need transfusions periodically to continue treatment over the year of treatment, assuming you respond to treatment. Even if a doctor will treat you, you should be on a transplant list before going on treatment.
So I would suggest finding a very experienced hepatlologist at a transplant center and consult with them. Have them get you on a transplant list. If your liver should fail because of treatment, you will have a transplant as backup. A "regular" doctor is not qualified to treat patients with cirrhosis especially someone like yourself with signs of decompensation.
Best of luck.
Hectorsf
In the interim Lisa you really need to be under a doctors care so the ascites can be controlled. Medications and diet can help.
Hi Lisa,
Try to relax, you’re doing fine in here :o).
I’ll try to answer your questions as best I can. I agree; I don’t see why a biopsy would be required in your case, assuming that you do indeed have cirrhosis. Ascites secondary to HCV is a pretty good indicator of established cirrhosis, I believe; and depending on your current bloodwork, a needle biopsy might even be dangerous. As I mentioned above, often in cirrhosis, the components in our blood that help it clot properly aren’t present, and can add greatly to risk of complications. A CBC and coag. panel would be telling at this point.
“Isn't the regiman for treatment the same except the time dependingon the genotype?”
Yes, pretty much. The duration of treatment might change if more advanced liver damage is present, but a biopsy might not be required to determine this.
“Is everyone that does treatment bedritten?”
No, not nearly. Treatment varies greatly from patient to patient; you can almost count on some degree of fatigue, etc. I’d guess that around 70% of the members in here continue to work through treatment, although some of them might alter their schedule somewhat.
--Bill
Try to relax, you’re doing fine in here :o).
I’ll try to answer your questions as best I can. I agree; I don’t see why a biopsy would be required in your case, assuming that you do indeed have cirrhosis. Ascites secondary to HCV is a pretty good indicator of established cirrhosis, I believe; and depending on your current bloodwork, a needle biopsy might even be dangerous. As I mentioned above, often in cirrhosis, the components in our blood that help it clot properly aren’t present, and can add greatly to risk of complications. A CBC and coag. panel would be telling at this point.
“Isn't the regiman for treatment the same except the time dependingon the genotype?”
Yes, pretty much. The duration of treatment might change if more advanced liver damage is present, but a biopsy might not be required to determine this.
“Is everyone that does treatment bedritten?”
No, not nearly. Treatment varies greatly from patient to patient; you can almost count on some degree of fatigue, etc. I’d guess that around 70% of the members in here continue to work through treatment, although some of them might alter their schedule somewhat.
--Bill
For anyone interested, Janis and Friends has a decent section on cirrhosis management:
http://janis7hepc.com/Cirrhosis.htm
--Bill
http://janis7hepc.com/Cirrhosis.htm
--Bill
I have already seen a liver specialist when i first got diagnosed and after he told me about the biopsy I didnt go back. I contacted a Hepatologist Transplant specialist today and got a referral but its not until August and with my health getting so bad, Im not even sure if I will make it until August. Her nurse informed me today that she would require a biopsy before treatment could be started. I am trying to get around this site but it seems very confusing. Please bear with me, I have had a rough day and am about at my wits end. I am very confused, unhappy, and angry and just dont know what to do. I dont understand what the results of a biopsy would show that we already know. Isn't the regiman for treatment the same except the time dependingon the genotype? Is everyone that does treatment bedritten? Thank you for your time and patience. Lisa
Denise, Lisa—
Often when cirrhosis is present, the patient’s blood won’t clot properly; this can make an invasive procedure like needle biopsy riskier than it would be for others. Additionally, if frank cirrhosis is established, it can be reliably diagnosed without biopsy using imaging, blood tests, etc. In that case, a biopsy would be a redundant and moot point.
Lisa, welcome to the forum. So sorry to hear of your recent diagnosis; you’re getting solid info from Trinity, by the way.
The forum lingo can be confusing initially; here’s a link to a page that might help with that:
http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64
As Trinity mentioned, if you aren’t already, you should be seeing a hepatologist, if at all possible. You can ask your primary care doctor for a referral, or call the local university medical center and ask for the GI department. They should be able to guide you; you want cutting edge management in your case, it sounds like.
Good luck, and welcome to the discussion group--
Bill
Often when cirrhosis is present, the patient’s blood won’t clot properly; this can make an invasive procedure like needle biopsy riskier than it would be for others. Additionally, if frank cirrhosis is established, it can be reliably diagnosed without biopsy using imaging, blood tests, etc. In that case, a biopsy would be a redundant and moot point.
Lisa, welcome to the forum. So sorry to hear of your recent diagnosis; you’re getting solid info from Trinity, by the way.
The forum lingo can be confusing initially; here’s a link to a page that might help with that:
http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64
As Trinity mentioned, if you aren’t already, you should be seeing a hepatologist, if at all possible. You can ask your primary care doctor for a referral, or call the local university medical center and ask for the GI department. They should be able to guide you; you want cutting edge management in your case, it sounds like.
Good luck, and welcome to the discussion group--
Bill
Lisa, at your stage of liver disease you do not need a biopsy. It is obvious that you have decompensated cirrhosis. Biopsy will not provide any new information.
Did the doctor talk to you about a possibility of a transplant?
Did the doctor talk to you about a possibility of a transplant?
Gven those facts, I don't see what you would learn with a biopsy that would affect a treatment decision.
I had diagnosed in the hospital with advances cirrhois and ascites when I went there because I was so swelled I could barely walk and after the diagnosed of cirrhois the emergency room doctor told me to follow up with my family doctor and he diagnosed me with hep c.
Without having had a biopsy, how do you and the doc know that you have "advanced cirrhosis"?
I see. Biopsy isn't always advised with cirrhosis. If you seek out a hepatologist or a good GI who has treated many patients with hepc they will advise you how to proceed. It may be they will start you on treatment without biopsy due to the cirrhosis.
Keep in mind lisa, treatment requires weekly injections of interferon but the needle is very small and the injection is not painful. Regarding biopsy, it sounds a lot worse than it really is. You will feel like it was much to do about nothing after the procedure is done.
Look in the archives of this forum and you will find many many posts about biopsy and how easy it was for most. There is a very very small percentage who experience complications after biopsy which is why you should seek out a good hepatologist who can assess your situation because of the cirrhosis.
Trinity
Trinity
Keep in mind lisa, treatment requires weekly injections of interferon but the needle is very small and the injection is not painful. Regarding biopsy, it sounds a lot worse than it really is. You will feel like it was much to do about nothing after the procedure is done.
Look in the archives of this forum and you will find many many posts about biopsy and how easy it was for most. There is a very very small percentage who experience complications after biopsy which is why you should seek out a good hepatologist who can assess your situation because of the cirrhosis.
Trinity
Trinity
I had a cat scan at the hospital and was diagnosed with cirrhois and ascites because i was so swollen
How did they determine you have advanced cirrhosis initially if you've never had a biopsy?
In my case they let me take a seditive prior to going to hospital for the test and than they gave me something for anxiety. Please do the biopsy no DR will stop you from treatment if treatment looks like it might help. What Geno type are you
I WISH I UNDERSTOOD ALL THE LINGO IN THE BLOGS BUT I GUESS SINCE IM NEW, THAT I DONT. MY DOCTOR STATED THAT I HAVE HAD THIS FOR PROBABLY 10 YEARS BECAUSE I HAVE BEEN SICK OFF AND ON. DOES ANYONE GET BETTER OR IS ALL THIS FOR NOTHING?.
I AM JUST REALLY SCARED AND AM AFRAID IF I DO THE BIOPSY THAT I WILL NOT DO TREATMENT BECAUSE OF THE FEAR.
Trust me biopsy not that bad treatment consist of needles to however they are tiny
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