Your financial trials compounds the medical one you're on, and sometimes will prevent us from seeing the 'forest for the trees,' with the trees being $. I hope (and pray) that you find the help you need, and a compassionate person to assist.
I've never paid much attention to ascites. Kinda have enough to focus on, that uncertainties, or possibility of a side effect, has been pushed aside. I liken it to the phrase, 'tyranny of the urgent' where the urgent need often pushes the important tasks out of focus... until last week.
I called my Dr on Mon. 2/11, and complained of shortness of breath. Their opinion was it had to do with the weekly phlebotomies I was doing (which I had stopped on 2/1) but they said to give it another week or two to see if it improved. Then on Wed. 2/13, I weighed 275 lbs, which is about 12 more than I weighed at my January visit. Then this past Monday 2/18, I weighed 283, and then Tuesday 2/19. I weighed 286. So, I called again and told them shortness of breath wasn't better, weight gain indicated twins (humor), and now my legs are swollen beyond recognition. They sent a prescription to local pharmacy for furosemide, ordered new blood work (stat) and made me an appt for today at 3:30. I'm not sure what they'll suggest, but I hope they drain it so I can have some relief in breathing and on my hernia.
Since Aug. '12 we've been watching what we eat, even tracking it and avoiding restaurants based on calorie/fat/sodium levels. My sodium intake is between 800-1200 mg a day, so we're doing good in that realm. Not sure what else I can do to keep the ascites away, as I know it's one of the complications of cirrhosis. Any ideas or advice is appreciated.
That's my story in regards to ascites. I have lots of questions, some of which the Dr will answer, some he will not, as it seems even though he's a specialist with 20+ years of dealing with livers, Drs seem hesitant to fully disclose things, either becasue they aren't sure themselves, or the fear of being sued, both of which are sad.
Hope I haven't rambled too much, and all this makes sense, as I forget where I'm going... sometimes!
Hope and pray your journey is quick towards recovery and you're one of the fortunate ones with a quick response to meds, therapies, or your own immune system.
Peace and grace,
Oral
Hobo said
Feb 1, 2010
Hello SonniQ, I'm about as green here as green can get, [just signed up to the forum] and this is the first link I've clicked on...So instead of doing an introduction thing, I thought I'd just throw in a few words here, if that's okay.. I came down with HCV big time last April, 09' with Ascities and an naval button rupture.. the doc told me that I was already in end stage liver failure, and gave me 6 months or less left.. Referred me to a specialist at a larger hospital, and he basically told me the same thing, and that I was too far advanced & that the inferion treatments would be too high risk for me to try...so I should just go home and be with family and friends. I got really sick..like so weak that my wife had to help me to the bathroom and back to bed again. Not to mention how my wife had to wheel me around in a wheel chair from lack of energy. At my first appointment with the doc. he set me up the next day to be drained of ascities, [7.2 liters] I had to keep going back about every two weeks to 10 days to be re-drained, it wasn't until I saw the Chief Big Wig Liver Specialist that he upped my dosage of Spironolact to 100mg and Furosemide 40mg per day.. [This is the medical min. dosage for anyone with ascites with Hepc. I think they kept me on low dosages just so I'd have to work my way up through the chain of different doctors for "Pre-evaluations" prior to seeing the "Specialist". Which took about 3 months to see him. Of course I couldn't afford all those expences, so I took the time to simply fill out the paper work at the charitable hospital first, then did the same at the lager hospital that I went too... Almost all hospitals across the U.S. have special coverages for low income, out of work, folks like myself.. Just go in and ask to speak with the person in charge of such low income funding for treatments. Some will cover just certain doctors and procedures..some will cover 100% of everything! It really pays to do the asking around at the different hospitals. Well...that was a long time ago...it seems... [though it was just about 10 months ago] Basically, all I use the hospital for now is to go once a month to get my blood work done, and see a naturalpath doc. at the cancer center, who I spend more time with teaching her than she does me....but it's all paid for so I don't mind. I've since reduced my diuretics by one half and manage my own treatment for hepc at home. Oh..and I'm no longer in a wheelchair, actually, I built a garage beside our house and got it completed by myself this last Fall... {Including roofing it like a monkey running all over a the tree tops! :-} Don't give up hope!! The diet come First and foremost, then the right mind-set, then go after the hepc to set it back on it's heels.. it is curable ya know. If there's anything that I can help you with, just ask, okay! I probably won't get back here to the forum that often, but I do check in with our emails almost daily, so you or anyone can drop me a line at fathersplace29@gmail.com My name is Richard Good luck and God's speed to your well being!!
greenqueen said
Jan 31, 2010
Hi Sonni and a very warm welcome to the forum
There's a very good US site called HCV Advocate and I'm sure if you contact them, they could give you some good advice regarding Insurance issues etc
Love the hat! I hope you don't reach this point either. I know that not everyone does. But the longer you have it the greater your chances are. That is why the newer infections don't have as much damage and are easier to respong to treatment. I don't know how long you've had it. I didn't start to show symptoms until about the 12th year and most drs even at that point really had no knowledge of Hep C. They all said my liver enzymes were a little high and did I ever have hepatitis, but I always told them no. If I had had better options back then I might have a different story. Oh well - deal with what you have - keep a positive attitude.
Take care and good luck.
Sonni - from the sunny Florida Keys
BJ said
Jan 25, 2010
Gidday Sonni,
Welcome to the forum from often sunny but at the moment somewhat soggy Nth Queensland I haven't got to cirrhosis yet, fortunately, and I assume you know about your diet and cirrhosis (low/no salt etc) so I probably can't help a lot there.
Hope things turn around for you with the shop, take some of my positive thoughts
Give those grandkids a hug,
Cheers,
Brendan
Minerva said
Jan 25, 2010
Hi Sonni and a warm welcome to the forum!! I am sure there will be others here who can relate to your experiences and if you would like to start a new thread in any of the 'Sections', please feel free to do so.
I hope someone can suggest options for you re. insurance, and that you find the forum useful. Good to have you here. Hugs Heather xxx
Vectorwoman said
Jan 25, 2010
I can't help you much with your concerns. I have had Hep c for around 15 years and haven't had treatment yet.
I mainlly wanted to wecome you to the forum and give you a virtual (((HUG)))
SonniQ said
Jan 25, 2010
My 35 year Hep C infection has now turned into cirrhosis and I've been dealing with ascites. I've actually been feeling good the past 5 years. Treatment didn't work for me in 1998. I have a good dr I see every 3 months who keeps up with blood tests, etc. I turned really sick and blew up with ascites 2 weeks after an appt with him on Nov 2nd. Everything happened so fast. I didn't work for a month and now I'm going in PT. I own the business - so that helps. I've been doing a mountain of research learning what it means to be at this stage. I see my dr every 3 weeks now that the fluid is down - although not completely. I've had every scan, sonogram and MRI I've needed. Unfortunately, I have no insurance. That went out the window with my diagnosis in '95 and the last job I had that provided insurance. I'm hanging onto my store by the skin of teeth ( do teeth have skin? )because sales are down so far and having enough money for regular bills is sketchy so doctor bills - well just forget it. I am fortunate that my Dr only charges me a small portion of what he usually gets. He knows I'm broke. So many specialists want $250 just to darken their door. He charges me only $30. He won't turn anyone away just because they don't have insurance. Here in Key West you can also get financial aid and I was able to have all my tests done at no charge and they write it off. But the closest hepatologist is in Miami and I can't use it up there. If anyone has any suggestions I would love to hear them.
But would also like to talk to other people with cirrhosis and ascites about their story and how they are doing. Research is good, but talking to people who deal with it is really what makes it all make sense.
There doesn't seem to be many catagories with this forum unless I'm not using right, where it isn't so general in questions from newly diagnosed to end stage. I used to post a lot to a forum when I was newly diagnosed and all during treatment and it got me through it. Family means well and they get worried for you, but sometimes you don't want to be worried over all the time or talk about it in every conversation. And nobody can really understand what you're going through like people who are going through it, too.
That's enough about me - you'll see me around. Thanks - Sonni
Your financial trials compounds the medical one you're on, and sometimes will prevent us from seeing the 'forest for the trees,' with the trees being $. I hope (and pray) that you find the help you need, and a compassionate person to assist.
I've never paid much attention to ascites. Kinda have enough to focus on, that uncertainties, or possibility of a side effect, has been pushed aside. I liken it to the phrase, 'tyranny of the urgent' where the urgent need often pushes the important tasks out of focus... until last week.
I called my Dr on Mon. 2/11, and complained of shortness of breath. Their opinion was it had to do with the weekly phlebotomies I was doing (which I had stopped on 2/1) but they said to give it another week or two to see if it improved. Then on Wed. 2/13, I weighed 275 lbs, which is about 12 more than I weighed at my January visit. Then this past Monday 2/18, I weighed 283, and then Tuesday 2/19. I weighed 286. So, I called again and told them shortness of breath wasn't better, weight gain indicated twins (humor), and now my legs are swollen beyond recognition. They sent a prescription to local pharmacy for furosemide, ordered new blood work (stat) and made me an appt for today at 3:30. I'm not sure what they'll suggest, but I hope they drain it so I can have some relief in breathing and on my hernia.
Since Aug. '12 we've been watching what we eat, even tracking it and avoiding restaurants based on calorie/fat/sodium levels. My sodium intake is between 800-1200 mg a day, so we're doing good in that realm. Not sure what else I can do to keep the ascites away, as I know it's one of the complications of cirrhosis. Any ideas or advice is appreciated.
That's my story in regards to ascites. I have lots of questions, some of which the Dr will answer, some he will not, as it seems even though he's a specialist with 20+ years of dealing with livers, Drs seem hesitant to fully disclose things, either becasue they aren't sure themselves, or the fear of being sued, both of which are sad.
Hope I haven't rambled too much, and all this makes sense, as I forget where I'm going... sometimes!
Hope and pray your journey is quick towards recovery and you're one of the fortunate ones with a quick response to meds, therapies, or your own immune system.
Peace and grace,
Oral
and this is the first link I've clicked on...So instead of doing an introduction thing, I thought I'd just throw in a few words here, if that's okay..
I came down with HCV big time last April, 09' with Ascities and an naval button rupture.. the doc told me that I was already in end stage liver failure, and gave me 6 months or less left.. Referred me to a specialist at a larger hospital, and he basically told me the same thing, and that I was too far advanced & that the inferion treatments would be too high risk for me to try...so I should just go home and be with family and friends.
I got really sick..like so weak that my wife had to help me to the bathroom and back to bed again. Not to mention how my wife had to wheel me around in a wheel chair from lack of energy.
At my first appointment with the doc. he set me up the next day to be drained of ascities, [7.2 liters]
I had to keep going back about every two weeks to 10 days to be re-drained, it wasn't until I saw the Chief Big Wig Liver Specialist that he upped my dosage of Spironolact to 100mg and Furosemide 40mg per day.. [This is the medical min. dosage for anyone with ascites with Hepc. I think they kept me on low dosages just so I'd have to work my way up through the chain of different doctors for "Pre-evaluations" prior to seeing the "Specialist". Which took about 3 months to see him.
Of course I couldn't afford all those expences, so I took the time to simply fill out the paper work at the charitable hospital first, then did the same at the lager hospital that I went too... Almost all hospitals across the U.S. have special coverages for low income, out of work, folks like myself.. Just go in and ask to speak with the person in charge of such low income funding for treatments.
Some will cover just certain doctors and procedures..some will cover 100% of everything! It really pays to do the asking around at the different hospitals.
Well...that was a long time ago...it seems... [though it was just about 10 months ago] Basically, all I use the hospital for now is to go once a month to get my blood work done, and see a naturalpath doc. at the cancer center, who I spend more time with teaching her than she does me....but it's all paid for so I don't mind.
I've since reduced my diuretics by one half and manage my own treatment for hepc at home.
Oh..and I'm no longer in a wheelchair, actually, I built a garage beside our house and got it completed by myself this last Fall... {Including roofing it like a monkey running all over a the tree tops! :-}
Don't give up hope!! The diet come First and foremost, then the right mind-set, then go after the hepc to set it back on it's heels.. it is curable ya know.
If there's anything that I can help you with, just ask, okay! I probably won't get back here to the forum that often, but I do check in with our emails almost daily, so you or anyone can drop me a line at fathersplace29@gmail.com My name is Richard
Good luck and God's speed to your well being!!
There's a very good US site called HCV Advocate and I'm sure if you contact them, they could give you some good advice regarding Insurance issues etc
http://www.hcvadvocate.org/index.asp
Love Steff xx
Take care and good luck.
Sonni - from the sunny Florida Keys
Welcome to the forum from often sunny but at the moment somewhat soggy Nth Queensland
Hope things turn around for you with the shop, take some of my positive thoughts
Give those grandkids a hug,
Cheers,
Brendan
Hi Sonni and a warm welcome to the forum!!
I hope someone can suggest options for you re. insurance, and that you find the forum useful. Good to have you here.
Hugs
Heather
xxx
I can't help you much with your concerns. I have had Hep c for around 15 years and haven't had treatment yet.
I mainlly wanted to wecome you to the forum and give you a virtual (((HUG)))
But would also like to talk to other people with cirrhosis and ascites about their story and how they are doing. Research is good, but talking to people who deal with it is really what makes it all make sense.
There doesn't seem to be many catagories with this forum unless I'm not using right, where it isn't so general in questions from newly diagnosed to end stage. I used to post a lot to a forum when I was newly diagnosed and all during treatment and it got me through it. Family means well and they get worried for you, but sometimes you don't want to be worried over all the time or talk about it in every conversation. And nobody can really understand what you're going through like people who are going through it, too.
That's enough about me - you'll see me around.
Thanks - Sonni