But I should clarify acities at any level is not good because the fluid can become infected and thats a real problem, best thing to do is adjust diet and diuretics...salt needs to be cut to less than 1200mg/day and believe me that is hard to do considering a can of chicken noodle soup has about 800mg , you get the idea, also good protein helps too, like vegetable protein.
I agree about the infection part Duane. During my 1st paracentesis in January, the Dr only got ~ 1/2 L of fluid then lost the flow. The ultra sound showed much more fluid but he could not access it. So he withdrew the needle and bandaged me up. The procedure hurt bad, but the fluid hurt worse, so I asked him to attempt it from a different angle but he would not at that time for fear of leaking too much fluid outside of the peritoneal cavity, possibly spreading infection, especially risky in a long term HIV sufferer with low CD-4 count.
They finally did another paracentesis a couple of weeks later and I got relief. And since then you can bet I don't eat sodium rich foods nor use a table salt shaker, and I take the meds for it correctly and on time.
bombeni:
As Isis already said, issues other than ascites can cause similar symptoms, and I hope that is the case with you. But the only way to know is to have the test done now. I waited until the pain ran me up into the ER, at which point it was too late. That stunt is, of course, a big regret for me now!
There's a line between imagined symptoms and real symptoms that is not well defined sometimes, but when it comes to HepC / liver disease issues, if you suspect a problem, talk with your Dr about it stat. The cause of pretty much any Sx can be explained and proved / dis-proved via lab test, imaging etc. That's what they have those big fancy high $ machines for ... use them!
Dzdayscomin said
Sep 9, 2014
When you have ascites to a point where it's a real problem you will know it, especially when you are laying down, it feels like all your organs are under pressure and you will feel like you need to support your belly with a pillow laying on your side, there is no comfortable position but I found the best was on my back, however I have apnea and can't stand the CPAP machine so sleeping on my back is out of the question.
But I should clarify acities at any level is not good because the fluid can become infected and thats a real problem, best thing to do is adjust diet and diuretics...salt needs to be cut to less than 1200mg/day and believe me that is hard to do considering a can of chicken noodle soup has about 800mg , you get the idea, also good protein helps too, like vegetable protein.
Also you'll find yourself unconsciously holding your stomach in ( read not relaxing) because its uncomfortable to let that hang out, which I think can contribute to the fatigue.
These are just my experiences and not drs orders so take it or leave it.
Huey said
Sep 9, 2014
I do the same thing with my doc's , and it PO's them when I am right. I got google, but also a 98% gpa in Biology in High school and what I learned from taking care of my mother those two years in 1976-78, So no wonder I can guess better, It is still just a guess and Doctors don't have that privilege
Isiscat2011 said
Sep 8, 2014
Bombeni wrote:
Thanks, that's a relief. I can't let my imagination run away from me. I've blocked the whole thing for a year, now I'm self diagnosing every disorder on the list.
I've done the same thing many times. The first time I read about ascites I was sure I had it. I informed my PCP of my self-diagnosis right away fully expecting that I would need to have fluid removed (a very unpleasant procedure I have heard). My doc knew immediately that I'd been spending too much time with Google and told me to knock that off. He could tell just by feeling my stomach that I didn't have ascites.
I do have GI problems like bloating and nausea at times, though. Eliminating milk (I was drinking like 3-4 lattes per day) and reducing my salt intake helped a great deal. Eating frequent but small meals, and consuming plenty of organic veggies also helps, as does taking probiotics. Gone are the days when I can eat whatever I like and not suffer the consequences. Fun while it lasted, though!!
Bombeni said
Sep 7, 2014
Thanks, that's a relief. I can't let my imagination run away from me. I've blocked the whole thing for a year, now I'm self diagnosing every disorder on the list.
Isiscat2011 said
Sep 7, 2014
Bombeni wrote:
ive read some on here about the condition called ascites. I definitely have that.
It is easy to read about a condition and then imagine you have it, because you have similar symptoms, but it seems doubtful that you have ascites. Ascites only occurs when someone has decompensated cirrhosis which means they have probably had cirrhosis for many years. You may just have some digestive issues that cause bloating. HCV alone, or HCV with an impaired liver, can cause digestive problems.
No way to know for sure until you see your doc but it seems unlikely that you have decompensated cirrhosis/ascites. You may want to start reducing your salt intake. Dietary changes can make a big difference in how we feel.
Bombeni said
Sep 7, 2014
Thanks guys, I'm making a list of questions.
ive read some on here about the condition called ascites. I definitely have that. One of my my better features was always a flat stomach but the past year or so I look 8 months pregnant. I chalked it up to getting older, but I haven't had weight gain, have in fact lost weight, while my tummy grew bigger. At least I'm finally going to face this and start recovery now. Better late than never!
Isiscat2011 said
Sep 7, 2014
Beingsassy has already got you well covered here. To recap, here is a list:
1) Genotype (diagnosed by blood sample),
2) Viral load (diagnosed by blood sample),
3) Other blood work: A number of tests can give the doctor an idea of how your liver is doing including blood work. ALT, AST, and platelet count are important. You may also want to ask for an AFP test. Glucose intolerance is common with HCV so testing your glucose is a good idea. I would also want an IL28B test although the importance of the IL28B allele for the all oral DAAs is not yet established,
4) Ultrasound: Can give doc a general idea of your GI health (including liver and spleen enlargement as well as potential gallbladder issues) and check for any masses, a CT or MRI can be performed later if doc wants to take a closer look at something,
5) Fibroscan or biopsy: Fibroscan can assess level of fibrosis, biopsy can assess fibrosis plus level of inflammation and a few other pertinent things.
I would recommend that you spend time during your first visit with the specialist trying to determine if this is the right doc for you. Ask direct questions like: How many HCV patients has he/she treated? How important is HCV treatment in his/her practice? Who does the day-to-day monitoring of and meeting with patients (the doc or a nurse)? Are they willing to appeal insurance denials?
My first appointment mission would be to attempt to assess the level of medical care and commitment that is given to HCV tx in this particular practice. Having the wrong doc for HCV tx can have serious consequences so deciding whether this is the right doc for you is the most important thing on the agenda for the first meeting, IMO. If you choose the right doc, who has HCV experience and commitment to tx, you should not have to worry too much about getting the correct tests and tx because he/she will have that covered.
You are most likely to find the most experienced/committed medical professionals who treat HCV in university and teaching facilities that have liver centers. Depending on your proximity to a liver center this is something to consider. You can also make the decision to treat at a liver center after you know the extent of your liver damage and other HCV related conditions. Generally, the sicker you are, the more experienced the tx provider should be.
beingsassy said
Sep 7, 2014
You'll want to find out your genotype because that will determine the recommended course of treatment. Find out your viral load. Make sure you are given a biopsy or fibroscan to find out what condition your liver is in. An ultrasound may also be ordered. I have an ultrasound every two years. Find out what your treatment options are and ask about success rate for your genotype and any side effects that may occur. I'd actually talk to the pharmacist about side effects since they know more than most doctors about medication side effects, just my opinion. You might also want to ask about drug interactions that can occur so tell your doctor everything you take including over the counter medications, supplements and herbal meds you take. Other folks here probably have additional questions to ask but this is a start.
gigi
Bombeni said
Sep 7, 2014
Good morning All,
im im calling for an appt. this week, to determine the severity of my hep c. I want to have a list of questions to ask after the tests have been run, so I will have all the info like most of you have at the bottom of your posts. I don't know what any of it means yet but you guys could help me further understand my condition if I have that info.
I agree about the infection part Duane. During my 1st paracentesis in January, the Dr only got ~ 1/2 L of fluid then lost the flow. The ultra sound showed much more fluid but he could not access it. So he withdrew the needle and bandaged me up. The procedure hurt bad, but the fluid hurt worse, so I asked him to attempt it from a different angle but he would not at that time for fear of leaking too much fluid outside of the peritoneal cavity, possibly spreading infection, especially risky in a long term HIV sufferer with low CD-4 count.
They finally did another paracentesis a couple of weeks later and I got relief. And since then you can bet I don't eat sodium rich foods nor use a table salt shaker, and I take the meds for it correctly and on time.
bombeni:
As Isis already said, issues other than ascites can cause similar symptoms, and I hope that is the case with you. But the only way to know is to have the test done now. I waited until the pain ran me up into the ER, at which point it was too late. That stunt is, of course, a big regret for me now!
There's a line between imagined symptoms and real symptoms that is not well defined sometimes, but when it comes to HepC / liver disease issues, if you suspect a problem, talk with your Dr about it stat. The cause of pretty much any Sx can be explained and proved / dis-proved via lab test, imaging etc. That's what they have those big fancy high $ machines for ... use them!
When you have ascites to a point where it's a real problem you will know it, especially when you are laying down, it feels like all your organs are under pressure and you will feel like you need to support your belly with a pillow laying on your side, there is no comfortable position but I found the best was on my back, however I have apnea and can't stand the CPAP machine so sleeping on my back is out of the question.
But I should clarify acities at any level is not good because the fluid can become infected and thats a real problem, best thing to do is adjust diet and diuretics...salt needs to be cut to less than 1200mg/day and believe me that is hard to do considering a can of chicken noodle soup has about 800mg , you get the idea, also good protein helps too, like vegetable protein.
Also you'll find yourself unconsciously holding your stomach in ( read not relaxing) because its uncomfortable to let that hang out, which I think can contribute to the fatigue.
These are just my experiences and not drs orders so take it or leave it.
I do the same thing with my doc's , and it PO's them when I am right. I got google, but also a 98% gpa in Biology in High school and what I learned from taking care of my mother those two years in 1976-78, So no wonder I can guess better, It is still just a guess and Doctors don't have that privilege
I've done the same thing many times. The first time I read about ascites I was sure I had it. I informed my PCP of my self-diagnosis right away fully expecting that I would need to have fluid removed (a very unpleasant procedure I have heard). My doc knew immediately that I'd been spending too much time with Google and told me to knock that off. He could tell just by feeling my stomach that I didn't have ascites.
I do have GI problems like bloating and nausea at times, though. Eliminating milk (I was drinking like 3-4 lattes per day) and reducing my salt intake helped a great deal. Eating frequent but small meals, and consuming plenty of organic veggies also helps, as does taking probiotics. Gone are the days when I can eat whatever I like and not suffer the consequences.
Fun while it lasted, though!!
Thanks, that's a relief. I can't let my imagination run away from me. I've blocked the whole thing for a year, now I'm self diagnosing every disorder on the list.
It is easy to read about a condition and then imagine you have it, because you have similar symptoms, but it seems doubtful that you have ascites. Ascites only occurs when someone has decompensated cirrhosis which means they have probably had cirrhosis for many years. You may just have some digestive issues that cause bloating. HCV alone, or HCV with an impaired liver, can cause digestive problems.
No way to know for sure until you see your doc but it seems unlikely that you have decompensated cirrhosis/ascites. You may want to start reducing your salt intake. Dietary changes can make a big difference in how we feel.
Thanks guys, I'm making a list of questions.
ive read some on here about the condition called ascites. I definitely have that. One of my my better features was always a flat stomach but the past year or so I look 8 months pregnant. I chalked it up to getting older, but I haven't had weight gain, have in fact lost weight, while my tummy grew bigger. At least I'm finally going to face this and start recovery now. Better late than never!
Beingsassy has already got you well covered here. To recap, here is a list:
1) Genotype (diagnosed by blood sample),
2) Viral load (diagnosed by blood sample),
3) Other blood work: A number of tests can give the doctor an idea of how your liver is doing including blood work. ALT, AST, and platelet count are important. You may also want to ask for an AFP test. Glucose intolerance is common with HCV so testing your glucose is a good idea. I would also want an IL28B test although the importance of the IL28B allele for the all oral DAAs is not yet established,
4) Ultrasound: Can give doc a general idea of your GI health (including liver and spleen enlargement as well as potential gallbladder issues) and check for any masses, a CT or MRI can be performed later if doc wants to take a closer look at something,
5) Fibroscan or biopsy: Fibroscan can assess level of fibrosis, biopsy can assess fibrosis plus level of inflammation and a few other pertinent things.
I would recommend that you spend time during your first visit with the specialist trying to determine if this is the right doc for you. Ask direct questions like: How many HCV patients has he/she treated? How important is HCV treatment in his/her practice? Who does the day-to-day monitoring of and meeting with patients (the doc or a nurse)? Are they willing to appeal insurance denials?
My first appointment mission would be to attempt to assess the level of medical care and commitment that is given to HCV tx in this particular practice. Having the wrong doc for HCV tx can have serious consequences so deciding whether this is the right doc for you is the most important thing on the agenda for the first meeting, IMO. If you choose the right doc, who has HCV experience and commitment to tx, you should not have to worry too much about getting the correct tests and tx because he/she will have that covered.
You are most likely to find the most experienced/committed medical professionals who treat HCV in university and teaching facilities that have liver centers. Depending on your proximity to a liver center this is something to consider. You can also make the decision to treat at a liver center after you know the extent of your liver damage and other HCV related conditions. Generally, the sicker you are, the more experienced the tx provider should be.
You'll want to find out your genotype because that will determine the recommended course of treatment. Find out your viral load. Make sure you are given a biopsy or fibroscan to find out what condition your liver is in. An ultrasound may also be ordered. I have an ultrasound every two years. Find out what your treatment options are and ask about success rate for your genotype and any side effects that may occur. I'd actually talk to the pharmacist about side effects since they know more than most doctors about medication side effects, just my opinion. You might also want to ask about drug interactions that can occur so tell your doctor everything you take including over the counter medications, supplements and herbal meds you take. Other folks here probably have additional questions to ask but this is a start.
gigi
Good morning All,
im im calling for an appt. this week, to determine the severity of my hep c. I want to have a list of questions to ask after the tests have been run, so I will have all the info like most of you have at the bottom of your posts. I don't know what any of it means yet but you guys could help me further understand my condition if I have that info.
What should I ask the doctor?