Aa
Compensated Stage 4 Question
Thanks for your idea about going to another kaiser facility, perhaps I will have to try Oakland Kaiser.
From what I've already learned on the internet about mild acsities is to reduce the abdomnal inflammation by a salt free diet and diaretics. At the same time to avoid the risk of infection from the ascites in the liver by taking antibiotics.
It is so surprising that my doctor the hepatologist has not shown any concern about my abdomnal swelling or suggested salt free/diaretics. He just orders Cipro for the entire course of tx. in an email. I just cannot imagine taking antibiotics for that length of time with all my candida issues. Maybe it's just me and I need to get over it and surrender to a sea of drugs beyond belief. Hopefully I'll be able to get a second or third opinion from another doctor before starting tx.
Hey, thanks for listening. I have just come to a crossroad and need to decide which experts to talk to and where to find them, soon. If anyone has heard about what is typically recommended for treating mild ascites during triple drug tx please post. Thanks.
From what I've already learned on the internet about mild acsities is to reduce the abdomnal inflammation by a salt free diet and diaretics. At the same time to avoid the risk of infection from the ascites in the liver by taking antibiotics.
It is so surprising that my doctor the hepatologist has not shown any concern about my abdomnal swelling or suggested salt free/diaretics. He just orders Cipro for the entire course of tx. in an email. I just cannot imagine taking antibiotics for that length of time with all my candida issues. Maybe it's just me and I need to get over it and surrender to a sea of drugs beyond belief. Hopefully I'll be able to get a second or third opinion from another doctor before starting tx.
Hey, thanks for listening. I have just come to a crossroad and need to decide which experts to talk to and where to find them, soon. If anyone has heard about what is typically recommended for treating mild ascites during triple drug tx please post. Thanks.
Thanks for your post! I will be contacting UCSF right away to be seen by a hepatologist there. This is a perfect idea and one I would have never thought of on my own. I'm so appreciative to you and Hector for shared insight. I have access to many years of historical labs at kaiserpermanente.org and have been diligent at keeping up with labs on a regular basis over the years so I could easily give the UCSF dr. as much info as needed. Medhelp is really a great place to be when you need to get help and where to find it. Will keep you all posted!
1 hour
To: sunru
Sunru, it sounds like you have Cirrhosis, a little bit of ascites, and no other signs of decompensation. Triple tx is hard, especially for Cirrhotics. I strongly recommend that you establish yourself with a hepatologist at UCSF, even if it is your gastroenterologist who manages your tx at Kaiser. The reason I say this is because you don't know how well your liver will tolerate the triple tx, and if you're already established with a hepatologist, then your gastroenterologist can be in close communication, and you'll be able to see the hepatologist quickly and easily if your liver does begin to decompensate. Really, your triple tx should be managed by a hepatologist, as only a hepatologist is qualified to oversee Hep C treatment with a Cirrhotic. Depending upon how your treatment goes and how your liver holds up with triple tx, the hepatologist then should be monitoring you every 6 months or so. As Hector said, a low sodium diet is in order. You should avoid iron (vitamins with iron added, dark green leafy vegetables, red meat), and avoid Tylenol and other over the counter or prescription medications that are hard on the liver. You should also try to be on a low fat diet since your MRE showed fatty liver, unless of course you are planning to do triple tx with Incivek, which requires that the doses of Incivek be taken with food containing at least 20 g of fat. Overall, though, you should be trending toward a healthy diet with lots of fresh fruit and vegetables. If your BMI is high, now is a good time to try to exercise and lose weight, because any excess weight increases fat in the liver, which burdens the liver more. A hepatologist at UCSF is the best person to guide you in terms of how to reduce the burden on your liver and manage your ascites now that you have Cirrhosis with mild ascites. Also, UCSF would have a dietician/nutritionist that specializes in diet for Cirrhotics, that you could ask to see. Drink lots of water. Are you taking a diuretic to help with fluid retention?
Really, only a hepatologist would be able to say if it's safe for you to try triple tx. Some people with Cirrhosis are able to treat with triple tx and handle the meds OK (it's hard), and some people with Cirrhosis treat with triple tx and get into problems because the meds are just too hard on their livers. It requires close monitoring for those with Cirrhosis.
Good luck, and keep us posted.
Advocate1955
To: sunru
Sunru, it sounds like you have Cirrhosis, a little bit of ascites, and no other signs of decompensation. Triple tx is hard, especially for Cirrhotics. I strongly recommend that you establish yourself with a hepatologist at UCSF, even if it is your gastroenterologist who manages your tx at Kaiser. The reason I say this is because you don't know how well your liver will tolerate the triple tx, and if you're already established with a hepatologist, then your gastroenterologist can be in close communication, and you'll be able to see the hepatologist quickly and easily if your liver does begin to decompensate. Really, your triple tx should be managed by a hepatologist, as only a hepatologist is qualified to oversee Hep C treatment with a Cirrhotic. Depending upon how your treatment goes and how your liver holds up with triple tx, the hepatologist then should be monitoring you every 6 months or so. As Hector said, a low sodium diet is in order. You should avoid iron (vitamins with iron added, dark green leafy vegetables, red meat), and avoid Tylenol and other over the counter or prescription medications that are hard on the liver. You should also try to be on a low fat diet since your MRE showed fatty liver, unless of course you are planning to do triple tx with Incivek, which requires that the doses of Incivek be taken with food containing at least 20 g of fat. Overall, though, you should be trending toward a healthy diet with lots of fresh fruit and vegetables. If your BMI is high, now is a good time to try to exercise and lose weight, because any excess weight increases fat in the liver, which burdens the liver more. A hepatologist at UCSF is the best person to guide you in terms of how to reduce the burden on your liver and manage your ascites now that you have Cirrhosis with mild ascites. Also, UCSF would have a dietician/nutritionist that specializes in diet for Cirrhotics, that you could ask to see. Drink lots of water. Are you taking a diuretic to help with fluid retention?
Really, only a hepatologist would be able to say if it's safe for you to try triple tx. Some people with Cirrhosis are able to treat with triple tx and handle the meds OK (it's hard), and some people with Cirrhosis treat with triple tx and get into problems because the meds are just too hard on their livers. It requires close monitoring for those with Cirrhosis.
Good luck, and keep us posted.
Advocate1955
Sunru, it sounds like you have Cirrhosis, a little bit of ascites, and no other signs of decompensation. Triple tx is hard, especially for Cirrhotics. I strongly recommend that you establish yourself with a hepatologist at UCSF, even if it is your gastroenterologist who manages your tx at Kaiser. The reason I say this is because you don't know how well your liver will tolerate the triple tx, and if you're already established with a hepatologist, then your gastroenterologist can be in close communication, and you'll be able to see the hepatologist quickly and easily if your liver does begin to decompensate. Really, your triple tx should be managed by a hepatologist, as only a hepatologist is qualified to oversee Hep C treatment with a Cirrhotic. Depending upon how your treatment goes and how your liver holds up with triple tx, the hepatologist then should be monitoring you every 6 months or so. As Hector said, a low sodium diet is in order. You should avoid iron (vitamins with iron added, dark green leafy vegetables, red meat), and avoid Tylenol and other over the counter or prescription medications that are hard on the liver. You should also try to be on a low fat diet since your MRE showed fatty liver, unless of course you are planning to do triple tx with Incivek, which requires that the doses of Incivek be taken with food containing at least 20 g of fat. Overall, though, you should be trending toward a healthy diet with lots of fresh fruit and vegetables. If your BMI is high, now is a good time to try to exercise and lose weight, because any excess weight increases fat in the liver, which burdens the liver more. A hepatologist at UCSF is the best person to guide you in terms of how to reduce the burden on your liver and manage your ascites now that you have Cirrhosis with mild ascites. Also, UCSF would have a dietician/nutritionist that specializes in diet for Cirrhotics, that you could ask to see. Drink lots of water. Are you taking a diuretic to help with fluid retention?
Really, only a hepatologist would be able to say if it's safe for you to try triple tx. Some people with Cirrhosis are able to treat with triple tx and handle the meds OK (it's hard), and some people with Cirrhosis treat with triple tx and get into problems because the meds are just too hard on their livers. It requires close monitoring for those with Cirrhosis.
Good luck, and keep us posted.
Advocate1955
Really, only a hepatologist would be able to say if it's safe for you to try triple tx. Some people with Cirrhosis are able to treat with triple tx and handle the meds OK (it's hard), and some people with Cirrhosis treat with triple tx and get into problems because the meds are just too hard on their livers. It requires close monitoring for those with Cirrhosis.
Good luck, and keep us posted.
Advocate1955
Hector,
Yes, I had a biopsy a month ago that was interpreted by my kaiser dr. who specializes in the liver (I don't think they have a hepatologist) and is the one dr. that determines who gets referred to UCSF to be put on transplant waitlist for several kaiser clinics in the east bay. He emailed me a copy of biopsy that was determined as stage 3-4 cirrhosis or what dr.called early cirrhosis.
Earlier this week I went to UCSD medical center get an MRI/MRE elastography of my liver. I scheduled the MRE months before I had the liver biopsy because I heard the MRE could detect fibrosis staging and I was feeling extremely fatigued and felt big changes in my hep c.and did not feel like going through another painful biopsy. Anyway, the dr. at UCSD showed me texture changes of my liver and the small amount of ascites in two areas inside the liver along the peripheral on one of the slides. He said only small percentage of iron, fatty liver and no evidence of tumors. What he did point out was that after calculating measurements and looking at the color coded slides -it indicated that he was seeing stage 4 cirrhosis throughout the entire liver..
MRE differs from ultrasound elastography. With the ultrasound method, a probe is pushed across tissue, and a scanner records how the tissue deforms. However, Ehman said, this doesn’t provide a quantitative measure of the tissue’s actual stiffness.
According to Ehman, an MRE scan can be completed with four breath holds — approximately a minute — and is often conducted and billed as part of other abdominal MRI protocols. Based on the color-scale picture, radiologists can instantaneously know whether the patient has a healthy or diseased liver. Liver tissue stiffness is measured in kiloPascals (kPa), with a normal liver having a stiffness of roughly 2 kPa, the same consistency of fat inside the body. Diseased livers range from 3 kPa to more than 10 kPa.
http://www.diagnosticimaging.com/mr-elastography-growing-preferred-modality-liver-diagnosis
So yes I've had more liver tests ultra sounds performed lately than I'd like to admit. I really appreciate your feedback,this helps alot!
Yes, I had a biopsy a month ago that was interpreted by my kaiser dr. who specializes in the liver (I don't think they have a hepatologist) and is the one dr. that determines who gets referred to UCSF to be put on transplant waitlist for several kaiser clinics in the east bay. He emailed me a copy of biopsy that was determined as stage 3-4 cirrhosis or what dr.called early cirrhosis.
Earlier this week I went to UCSD medical center get an MRI/MRE elastography of my liver. I scheduled the MRE months before I had the liver biopsy because I heard the MRE could detect fibrosis staging and I was feeling extremely fatigued and felt big changes in my hep c.and did not feel like going through another painful biopsy. Anyway, the dr. at UCSD showed me texture changes of my liver and the small amount of ascites in two areas inside the liver along the peripheral on one of the slides. He said only small percentage of iron, fatty liver and no evidence of tumors. What he did point out was that after calculating measurements and looking at the color coded slides -it indicated that he was seeing stage 4 cirrhosis throughout the entire liver..
MRE differs from ultrasound elastography. With the ultrasound method, a probe is pushed across tissue, and a scanner records how the tissue deforms. However, Ehman said, this doesn’t provide a quantitative measure of the tissue’s actual stiffness.
According to Ehman, an MRE scan can be completed with four breath holds — approximately a minute — and is often conducted and billed as part of other abdominal MRI protocols. Based on the color-scale picture, radiologists can instantaneously know whether the patient has a healthy or diseased liver. Liver tissue stiffness is measured in kiloPascals (kPa), with a normal liver having a stiffness of roughly 2 kPa, the same consistency of fat inside the body. Diseased livers range from 3 kPa to more than 10 kPa.
http://www.diagnosticimaging.com/mr-elastography-growing-preferred-modality-liver-diagnosis
So yes I've had more liver tests ultra sounds performed lately than I'd like to admit. I really appreciate your feedback,this helps alot!
"my abdomen swells up every day and a lot especially at night for the past three months. "
This is not the symptoms of ascites.
It sound like gas. Gas varies over the day depending on when we eat and where the food stuff is in our digestive system.
Ascites does not vary throughout the day. Ascites usually takes many days to accumulate fluid or for it to be reduced. Unless there is a medical crises. Persons with grade 2 and tense ascites and weigh themselves every day to look for weight gain (we can gain as many a 5 lbs in two days and our clothes don't fit) as a indication the fluid is being retained. It usually takes me 2 weeks using diuretics to reduce any fluid build up I get from ingesting too much sodium or if I forget to take my diuretics which has happen maybe 2-3 times over the last 3-4 years.
For most people with ascites, their ankles and feet will retain fluid before it is noticeable in the abdomen. The feet and ankles will become bloated. Your ankles will disappear and if you press on the skin with a finger the "dent" in the shin will remain for some time. This is called pitting edema and is common with ascites.
When ascites fluid can only be seen on imaging it is a very small amount of fluid. Most ascites even grade 2 ascites can easily be detected by any good gastro or hepatologist using a stethoscope and tapping of the the abdomen and listening to the sound changes. Then again cirrhosis, and enlarged spleen can also be detected this were too by a experienced and knowledgeable gastro or hepatologist. Other tests tests then can be done to confirm the diagnosis.
If we had more docs that knew how to use these technics which are given little attention in med schools instead of relying of all the fancy technology we have these days, We wouldn't have so many people not knowing if they have cirrhosis or not. The docs at UCSF know how to do this and they can detect changes to a cirrhotics condition without running a ton of tests as they already know the baseline from the last time they saw the patient.
Hector
This is not the symptoms of ascites.
It sound like gas. Gas varies over the day depending on when we eat and where the food stuff is in our digestive system.
Ascites does not vary throughout the day. Ascites usually takes many days to accumulate fluid or for it to be reduced. Unless there is a medical crises. Persons with grade 2 and tense ascites and weigh themselves every day to look for weight gain (we can gain as many a 5 lbs in two days and our clothes don't fit) as a indication the fluid is being retained. It usually takes me 2 weeks using diuretics to reduce any fluid build up I get from ingesting too much sodium or if I forget to take my diuretics which has happen maybe 2-3 times over the last 3-4 years.
For most people with ascites, their ankles and feet will retain fluid before it is noticeable in the abdomen. The feet and ankles will become bloated. Your ankles will disappear and if you press on the skin with a finger the "dent" in the shin will remain for some time. This is called pitting edema and is common with ascites.
When ascites fluid can only be seen on imaging it is a very small amount of fluid. Most ascites even grade 2 ascites can easily be detected by any good gastro or hepatologist using a stethoscope and tapping of the the abdomen and listening to the sound changes. Then again cirrhosis, and enlarged spleen can also be detected this were too by a experienced and knowledgeable gastro or hepatologist. Other tests tests then can be done to confirm the diagnosis.
If we had more docs that knew how to use these technics which are given little attention in med schools instead of relying of all the fancy technology we have these days, We wouldn't have so many people not knowing if they have cirrhosis or not. The docs at UCSF know how to do this and they can detect changes to a cirrhotics condition without running a ton of tests as they already know the baseline from the last time they saw the patient.
Hector
The MELD score scale goes from 6 (all liver blood values within normal) to 40 the patient is End-Stage and gravely ill and may not be able to survive the surgery for a liver transplant.
* bilirubin, which measures how effectively the liver excretes bile;
* INR (prothrombin time), which measuresthe liver’s ability to make blood
clotting factors; and
*creatinine, which measures kidney function. (Impaired kidney function is
often associated with severe liver disease.
A patient’s score may go up or down overtime depending on the status of his or her liver disease. The more ill, the more it will vary. Most candidates will have their MELD score assessed a number of times while they are on the waiting list. This will help ensure that donated livers go to the patients in greatest need at that moment.
A Meld score of 7 is basically a normal liver. It is very unusual to have a MELD score of 7 and have ascites. In my opinion something is not correct.
Who said you have cirrhosis? A gastroenterologist or hepatologist?
Did you have a biopsy?
Do you have assess to the biopsy report online?
What you had any imaging? Ultrasound, CT scan or MRI of the abdomen?
Did the report mention an enlarged spleen? (splenomegaly).
What is your platelet count? You should have that from a typical CBC (complete blood count).
A person needs a MELD score of 15 to list for transplant at UCSF and it takes a MELD score of 33-35 to get a transplant. That could be many years away for you even if you don't cure your hep C.
Are you sure your fluid retention is from liver disease? While 85% of ascites is caused by liver disease 15% is caused by other health issues. Do you have other health issues? Kidney, heart, TB?
Best -
Hector
* bilirubin, which measures how effectively the liver excretes bile;
* INR (prothrombin time), which measuresthe liver’s ability to make blood
clotting factors; and
*creatinine, which measures kidney function. (Impaired kidney function is
often associated with severe liver disease.
A patient’s score may go up or down overtime depending on the status of his or her liver disease. The more ill, the more it will vary. Most candidates will have their MELD score assessed a number of times while they are on the waiting list. This will help ensure that donated livers go to the patients in greatest need at that moment.
A Meld score of 7 is basically a normal liver. It is very unusual to have a MELD score of 7 and have ascites. In my opinion something is not correct.
Who said you have cirrhosis? A gastroenterologist or hepatologist?
Did you have a biopsy?
Do you have assess to the biopsy report online?
What you had any imaging? Ultrasound, CT scan or MRI of the abdomen?
Did the report mention an enlarged spleen? (splenomegaly).
What is your platelet count? You should have that from a typical CBC (complete blood count).
A person needs a MELD score of 15 to list for transplant at UCSF and it takes a MELD score of 33-35 to get a transplant. That could be many years away for you even if you don't cure your hep C.
Are you sure your fluid retention is from liver disease? While 85% of ascites is caused by liver disease 15% is caused by other health issues. Do you have other health issues? Kidney, heart, TB?
Best -
Hector
Hector, my meld score is 7 and I've been trying to get an idea of what it might indicate. All I could come up with is that it is low and not a healthy score but NOT an alarming.score. So if I get on a low sodium diet and have the liver nurses help me keep the ascites under control, it would be worth a try. I think this is my last chance to at least try to get through it. About 15 years ago at Johns Hopkins study interferon/riba trial and with a 1a geno type I was a non-responder after 12 weeks and was taken off.
Hector, you certainly have been through a lot in recent years and I hope you are not in too much pain. You help humanity so much what a wonderful gift!
Thanks so much.
Hector, you certainly have been through a lot in recent years and I hope you are not in too much pain. You help humanity so much what a wonderful gift!
Thanks so much.
Dear Hector, thank you so much for the info. This insight will help me a lot to figure out what is going on. My dr.has not mentioned any concern at all about possibility of being comp/decomp -just compensated early cirhossis. Possibly because he knows my meld score is low enough and figures it's safe to start tx. next week. I have all my recent labs and I will try to come up with the meld score. I think he believes I'm making it up that my abdomen swells up every day and a lot especially at night for the past three months. Kaiser has done MRI and ultra sounds on me in recent few months and no mention at all to me about ascites detection but when I told him I had an MRE at UCSD earlier this week and the slide showed the small amount of ascites in the liver he decided to add the Cipro to tx without any mention to me as to why.
I believe I'm starting to get the picture now. This is so helpful to me Hector and I cannot thank you enough.
I believe I'm starting to get the picture now. This is so helpful to me Hector and I cannot thank you enough.
Kaiser does not not treat advanced cirrhosis. When patients gets very ill they are referred to the UCSF Gastroenterlogy/Hepatologist department and are evaluated for liver transplant. UCSF has the experience, expertise and resources to treat decompensated cirrhosis and End-Stage Liver Disease. I have been treating at UCSF for 5 years and I have met dozens of Kaiser patients over the years.
Kaiser in Oakland sends all their sicker patients to UCSF. Kaiser provide good health care. Unfortunately they are limited when it comes to advanced liver disease. They tried to start there own transplant center for kidney and then liver was next but they were shutdown due to problems with their program. That is when they decided to contact out and pay for advanced hepatology and liver transplant at UCSF.
Yes, you should be on a low sodium diet <2,000 per day first. If that doesn't get rid of all of your minimal ascites then diuretics are added until ascites and edema disappear. This treatment is effective in over 80% of patients until end-stage. Of course this only manages the ascites it does nothing to change the underlying cause, cirrhosis.
Ascites is the most common first complication of DEcompensated cirrhosis. So you are probably borderline compensated/decompensated. This makes treating you difficult as triple drug hep C treatment should not be used to treat decompensated cirrhosis.
What is your MELD score?
Antibiotics, by definition, are supposed to kill bacteria. Some are more prone to causing yeast infections than others. Clindamycin and tetracycline are particular bad in that respect.
It is not just your ascites that they are treating. Even though you have minimal ascites, ascites is an indication of decompensated cirrhosis. A hepatologist is required to treat you because your liver disease is very advaned. Triple drug treatment is not normally recommend to be used in decompensated patients. You will require close monitoring as treatment can be very difficult for a very damaged liver to handle. I assume you hepatologist has already told you all this.
Cipro is given to prevent bacterial infections at many liver transplant centers for those with cirrhosis treating hep C during treatment. Patients with cirrhosis are immunocompromised and infections (viral, bacteria land fungal-Candida) are more common and virulent.
When patients have more then one health condition it is always a balancing act to do good without causing negative impacts.
You should talk to your doctor about alternatives and get your doctor that has treated your yeast and candida infections in the past involved as there are ways to prevent infections with proactive measures such as over-the-counter yeast treatment cream or tablet to fight off yeast overgrowth and probiotics. Possibly with anti-fungal treatment as well, depending how serious your infections are.
Good luck with your treatment.
Hector
Kaiser in Oakland sends all their sicker patients to UCSF. Kaiser provide good health care. Unfortunately they are limited when it comes to advanced liver disease. They tried to start there own transplant center for kidney and then liver was next but they were shutdown due to problems with their program. That is when they decided to contact out and pay for advanced hepatology and liver transplant at UCSF.
Yes, you should be on a low sodium diet <2,000 per day first. If that doesn't get rid of all of your minimal ascites then diuretics are added until ascites and edema disappear. This treatment is effective in over 80% of patients until end-stage. Of course this only manages the ascites it does nothing to change the underlying cause, cirrhosis.
Ascites is the most common first complication of DEcompensated cirrhosis. So you are probably borderline compensated/decompensated. This makes treating you difficult as triple drug hep C treatment should not be used to treat decompensated cirrhosis.
What is your MELD score?
Antibiotics, by definition, are supposed to kill bacteria. Some are more prone to causing yeast infections than others. Clindamycin and tetracycline are particular bad in that respect.
It is not just your ascites that they are treating. Even though you have minimal ascites, ascites is an indication of decompensated cirrhosis. A hepatologist is required to treat you because your liver disease is very advaned. Triple drug treatment is not normally recommend to be used in decompensated patients. You will require close monitoring as treatment can be very difficult for a very damaged liver to handle. I assume you hepatologist has already told you all this.
Cipro is given to prevent bacterial infections at many liver transplant centers for those with cirrhosis treating hep C during treatment. Patients with cirrhosis are immunocompromised and infections (viral, bacteria land fungal-Candida) are more common and virulent.
When patients have more then one health condition it is always a balancing act to do good without causing negative impacts.
You should talk to your doctor about alternatives and get your doctor that has treated your yeast and candida infections in the past involved as there are ways to prevent infections with proactive measures such as over-the-counter yeast treatment cream or tablet to fight off yeast overgrowth and probiotics. Possibly with anti-fungal treatment as well, depending how serious your infections are.
Good luck with your treatment.
Hector
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