Bio Fibrin.... is it a real medical treatment or just mumbo jumbo?
Trainhopper said
Oct 5, 2014
everything everyone has said has been valuable information. I think it's bio fibrin tag (lol) jkin.... cant we all just get a bong?
Isiscat2011 said
Oct 4, 2014
Actually, my comments about payment assistance programs, particularly where patients are denied approval by their insurance companies or Medicare/Medicaid, were intended to be informational.
My posts were not intended as personal slights or "negative and confrontational" but being accused of that does get old.
Tig said
Oct 4, 2014
Hi Duane,
Everything is good! Don't you just feel the love? Time to move on and concentrate on finding financial resources for those unable to utilize the available programs we have pointed out. Thanks for your thoughts, your comments are noted.
Tig
Dzdayscomin said
Oct 4, 2014
Whoa!
Easy all, she was actually correcting my poor research into the patient assistance programs, i thought if you couldn't afford it, they'd pay for it....which I really think they should!
So this was more aimed at me and not anyone else.......please lets not let this carry any further, if I'd have done a better job of reading the guidelines this transaction would have been different.
Isis and I always quibble about this kind of stuff, i plant a bad seed, she digs it up and puts a good one in it's all good.
So lets all do a little kumba ya here.......you both are excellent resources for this forum that many people count on and I don't want to lose either of ya.
Capiche
Tig said
Oct 4, 2014
Hi Isis,
I appreciate your point of view and will certainly remember your solid advice to write what I feel is appropriate. I don't recall mentioning any untruths regarding the Payment Assistance programs, I just pointed them out again. We have done that for scores of people needing suggestions and options regarding payment and pointing out these programs is one thing we will continue to do. I also challenge your notion that I am somehow manipulating people's perception of the facts. Instead of criticizing my attempt to help find financial assistance for our membership, why don't you turn your knack for helpful research into something positive and find some assistance that works. Negativity and confrontation serve no purpose. Again let's do our best to bring hope to these posts.
let's do our best to not knock the wind out of everyone's sails... lets try to balance the negatives with positives, and reduce despair with just a little bit of hope. Maybe?
Hope is great but manipulating people's perceptions of the facts is something else. The idea (perpetuated by pharma) that everyone who wants it will receive HCV tx, regardless of their ability to pay, is ludicrous. I'm not going to mislead people into believing that payment assistance programs are going to solve the problem of paying for HCV tx for all, Tig, To my way of thinking that untruth will only lead to greater despair for many people in the long term. How about if you write what you feel is appropriate and I will do the same.
Gilead has not been forthcoming to the public about how much financial support it has actually provided to patients, or intends to provide to patients, despite requests from Congress to disclose this information. Notably, all patient assistance programs have stringent eligibility requirements that will include some HCV patients and exclude others.
Below are some of the terms and conditions of Gilead's Support Path Program to help pay for co-pays (there are also income requirements). Unfortunately, no additional explanation or clarification is provided by Gilead:
The SOVALDI co-pay coupon program will cover the out-of-pocket costs of your SOVALDI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 20% of the catalog price of a 12-week regimen of SOVALDI. The coupon can be applied to up to 6 fills
For residents of the 50 states, District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Prescriptions must be filled by a pharmacy in these locations
The coupon is limited to one per person and is not transferable
Coupon is not valid for prescriptions eligible to be reimbursed:
in whole or part by Medicare, Medicaid, any other federal or state-funded healthcare benefit program
by private plans or other health or pharmacy benefits programs, which reimburse you for the entire cost of your prescription drugs
The SOVALDI co-pay coupon is not prescription drug coverage or insurance and is not intended to substitute for such coverage
Gilead Sciences, Inc. reserves the right to terminate or modify this coupon at any time without notice
http://www.mysupportpath.com/register-copay/
Tig said
Oct 3, 2014
Good man!! We're here for the days you feel like talking. Hang in there bud...
Tig
Trainhopper said
Oct 3, 2014
I'm always gonna keep my chin up.... Even if I started treatment tomorrow. I could be hit by a bus today.... So... like I said chin up all the time.... Plus my sisters kids are around so I can't ever let on even if I was down
Tig said
Oct 3, 2014
While there are always bumps in the road and choppy seas, let's do our best to not knock the wind out of everyone's sails... lets try to balance the negatives with positives, and reduce despair with just a little bit of hope. Maybe?
Tig
Isiscat2011 said
Oct 3, 2014
Dzdayscomin wrote:
Looks like the cat just crapped in your litter box....lol
lol Good one, Duane. Don't worry; the crap will be scooped up by the lawyers who sue third party payers to provide coverage but it will take some time. If the market competition results in reduced prices soon enough the lawyers won't be necessary. One way or another it will get done.
If Gilead was generous enough to cover everyone who is denied they would be generous enough to cut prices to begin with. And, no non profit payment assistance program has the funds to cover this unmet need.
P.S. Also, don't count out creative docs that know how to get things done with third party payers. Many will go with the flow but some of them will fight like tigers to get their patients treated regardless of liver fibrosis stage. If the first one you see isn't a tiger then find one who is.
-- Edited by Isiscat2011 on Friday 3rd of October 2014 08:47:38 PM
Dzdayscomin said
Oct 3, 2014
Looks like the cat just crapped in your litter box....lol
I would have to go with what shes saying here because I'm not as research savvy as she....but like anything else the worst thing that can happen is they say no.....so I'd still give it a try.
Isiscat2011 said
Oct 3, 2014
Just a little reality check here. If you think Gilead is going to be paying for tx for every F-0 to F-2 who can't get coverage think again. Most people with severe fibrosis (F-3 to F-4) will be treated sooner rather than later via either their insurance or Medicare/Medicaid.
Also, I recall reading Gilead's policy stating that it would not offer any assistance to people receiving Medicare/Medicaid. Unless they open things up their assistance is quite limited.
Naturally, Gilead may make exceptions for unique tx populations that they want to study, but for the "average" HCV patient don't expect Gilead or anyone else to pay for tx just because your insurance denies you. You may, however, expect Gilead to assist with co-pays if you are approved by private insurance but have a moderate income.
The key to getting tx approved and paid for in ambiguous situations is a persistent medical provider who is willing to jump through the hoops, over and over again, if need be.
Remember there are AASLD tx guidelines on who to treat and when. Those guidelines will be invoked by third-party payers.
Trainhopper said
Oct 3, 2014
SNAP! thank you Duane!!! I'm an avid outdoorsmen.... This will be something to bring up!
Dzdayscomin said
Oct 3, 2014
Did you mention Lymes disease?
Trainhopper said
Oct 3, 2014
Also she did retest me for hep b
Trainhopper said
Oct 3, 2014
Thank you tig! I believe this doc is a lil weird.... I said the same thing about the nerve thing and she said the headaches and what I (robin) feel as pressure at the base of my skull. She pretty much had no comment on the slurred speech drunk like symptoms stuff that to me (I know I'm not a doctor but am quit intelligent) to be encephalitic symptoms. Again I have had extensive tests done I.E. Ct scan various ammonia tests lumbar puncture and yadda yadda. All yielding negatory on hepatic encephalopathy.... Dude tig, I'm grasping at straws with em.... Over the course of these last 5 months I've had every test done that they say yields results. Not to mention at least two pints of blood taken.
Tig said
Oct 3, 2014
Hey Robin,
Duane is right, don't be discouraged on the payment issue. I'm including a link to our thread on payment assistance programs that are available. Trust me, they work and they work well. As Duane mentioned Gilead and J&J both have excellent programs that have provided both coupon reduction as well as free medication to people with low incomes and high deductibles. The Pan Foundation is a fabulous organization that you should contact when you know more on what your doctor wants to do.
Often they will require a biopsy when a fibroscan score is either very low or very high. They want the confirmation that only a biopsy can provide. I believe they will begin to place more trust in the fibroscan but it's still being considered a new procedure by many and therefore questioned. A biopsy is a simple process, albeit invasive. We can answer any questions you have on it when you're ready to talk.
I'm more than a little confused about your doctor's confusion with the ultrasound and Hep B test. If she's not sure with her ability ("not her field") to diagnose from the results, she shouldn't be doing it. There are plenty of qualified doctors out there that are. If you have ever had or been exposed to HBV, you would be positive for the antibodies, period. You need to be retested for the antibodies and go from there. Im also confused about how (in the world) a pinched nerve could be confused for HE? Something smells... What are your future plans with this doctor? I might seriously consider a new opinion. JMHO...
Ya most definitely keeping my head up.... The doc said that in her six years here at Mizzou health she hasn't seen them turn down anyone for treatment. Just prepare for the worst type thing.... I guess there's a question as to whether or not I contracted hepatitis B. Labs came back as a positive result but non-reactive? Said I may have been exposed but no antibodies are present. She was apologetic about the ultrasound results. And said it wouldn't happen again. She also said (and profusely told me it wasn't her field) that my symptoms of h.e. May be caused by a pinched nerve or three in my neck/back.
Dzdayscomin said
Oct 3, 2014
Trainhopper wrote:
fibroscan showed little to no scarring *as I jump for joy* but Medicaid is going to require a biopsy. also Medicaid wont cover the cost of the meds if my liver isn't degraded enough? Wtf? Really? Well that's what the G.I. Says anyway.... She said the cost of treatment is 200k like I can afford that..... But I have a happy face on .
Robin if they won't, contact the pharmas like Gilead and J&J for there assistance programs you may get them at little or no cost, also ask about trials, don't give up, also don't fear the biopsy you are a tough guy and it will be a lot less painful than some things you have already experienced in your life.
DON'T BE DISCOURAGED! just keep pushing and praying and you will get the help and assistance you need, and on a positive note if your liver is not that degraded thats a great thing to hear......
Trainhopper said
Oct 3, 2014
fibroscan showed little to no scarring *as I jump for joy* but Medicaid is going to require a biopsy. also Medicaid wont cover the cost of the meds if my liver isn't degraded enough? Wtf? Really? Well that's what the G.I. Says anyway.... She said the cost of treatment is 200k like I can afford that..... But I have a happy face on .
Tig said
Oct 3, 2014
Cool! Ask lots of questions, good luck!
Tig
Trainhopper said
Oct 3, 2014
yeah sure will. I'm here now and waiting.... Lets see what's what
Tig said
Oct 3, 2014
Hi Robin,
Glad you're moving forward and have found some help and assistance from the family. Let us know what your doctor tells you today. Good luck...
Tig
Dzdayscomin said
Oct 3, 2014
I would imagine your family has noticed your positive directional shift and are being supportive....either way keep up the good effort.
Duane
Trainhopper said
Oct 3, 2014
hi guys. just been busy. I go to my g.i. doc today in hopes that she clears some stuff up for me. Since I stopped the lactulose my symptoms have not increased. Things are going ok so far. healthy as far as I can be. I moved in with family to help the financial burden. sucks but gotta be done. other then that it's business as usual. Sodium under 1000mg total calorie intake is about 3000. still smoking some. trying to quit...
wmlj1960 said
Oct 3, 2014
Dzdayscomin wrote:
Hey Robin, Just checkin in on ya to see how things are going?
Hopefully everything is going well and ur keeping the train on the tracks.
Be well buddy !
I've been missing him too Duane. I think he knows he is welcome around here anytime, regardless of ANYTHING, so I hope we hear from him soon!
Dzdayscomin said
Oct 3, 2014
Hey Robin, Just checkin in on ya to see how things are going?
Hopefully everything is going well and ur keeping the train on the tracks.
Be well buddy !
Dzdayscomin said
Sep 26, 2014
Isiscat2011 wrote:
Dzdayscomin wrote:
Thanks Tig,
So Isiscat, will you be doing or going for the 24 week no riba? Ion 3 at 99% on previously tx'd that sounds pretty good eh ?even though i believe 8 or 12 would probably do it, but i better read more on relapse in that....off hand I didn't see anything on that? I'm still kinda fog headed.
Edit..... ion 2
As with all HCV tx the odds are reduced for tx experienced cirrhotics. At 12 weeks still somewhere between 80-90% according to the clinical trial results.
I'm not sure yet about the duration or if Riba will be added. My last protocol with Riba caused severe anemia and a full body rash although the Incivek probably exacerbated those side effects. I'll try Riba again if doc approves it but she seemed disinclined to want to use Riba on me again. I will probably push for an extended tx duration--16-24 weeks--due to my cirrhosis.
It is kind of a fluid thing because Gilead is still doing some testing on the shorter protocols but I definitely would not go for <12 weeks. The 8 week protocol may be ok for some tx naives without liver damage but I can't risk a shortened tx. I am hoping they will learn more to tailor the txs better to the individual, based on genetic and other variables, but doubt that will happen in time for my tx.
So then we will say SVR by 4th of July 2015.....sounds good huh ?
Isiscat2011 said
Sep 26, 2014
Dzdayscomin wrote:
Thanks Tig,
So Isiscat, will you be doing or going for the 24 week no riba? Ion 3 at 99% on previously tx'd that sounds pretty good eh ?even though i believe 8 or 12 would probably do it, but i better read more on relapse in that....off hand I didn't see anything on that? I'm still kinda fog headed.
Edit..... ion 2
As with all HCV tx the odds are reduced for tx experienced cirrhotics. At 12 weeks still somewhere between 80-90% according to the clinical trial results.
I'm not sure yet about the duration or if Riba will be added. My last protocol with Riba caused severe anemia and a full body rash although the Incivek probably exacerbated those side effects. I'll try Riba again if doc approves it but she seemed disinclined to want to use Riba on me again. I will probably push for an extended tx duration--16-24 weeks--due to my cirrhosis.
It is kind of a fluid thing because Gilead is still doing some testing on the shorter protocols but I definitely would not go for <12 weeks. The 8 week protocol may be ok for some tx naives without liver damage but I can't risk a shortened tx. I am hoping they will learn more to tailor the txs better to the individual, based on genetic and other variables, but doubt that will happen in time for my tx.
Dzdayscomin said
Sep 26, 2014
Thanks Tig,
So Isiscat, will you be doing or going for the 24 week no riba? Ion 3 at 99% on previously tx'd that sounds pretty good eh ?even though i believe 8 or 12 would probably do it, but i better read more on relapse in that....off hand I didn't see anything on that? I'm still kinda fog headed.
Edit..... ion 2
-- Edited by Dzdayscomin on Saturday 27th of September 2014 04:09:45 AM
Isiscat are you scheduled to start a tx at this point? Or do you have an appt. set up to get this rolling soon? Wanting to see you get going towards that SVR....real soon
Yes, already discussed getting on the S/L combo with my Hepatologist. I have an appointment for Oct 16th and, as far as I know, she is planning to write the script that day. I wouldn't be surprised if it takes a couple of weeks for insurance approval but that is the plan. I've been waiting almost 3 years for this combo so I hope it does the trick!
Decided not to go with the S/O combo because of my prior tx experience with a PI, being a 1a, and the lack of studies on the combo. Doc said better odds and safety profile with S/L. My liver is still compensating well enough so hopefully it will be worth the wait.
Well we will certainly be praying for an easy tx that gets the job done with little to no sx, is that the single pill regimen?
What are the studies or trials on it so i can read up a bit?
Isiscat2011 said
Sep 26, 2014
Dzdayscomin wrote:
Isiscat are you scheduled to start a tx at this point? Or do you have an appt. set up to get this rolling soon? Wanting to see you get going towards that SVR....real soon
Yes, already discussed getting on the S/L combo with my Hepatologist. I have an appointment for Oct 16th and, as far as I know, she is planning to write the script that day. I wouldn't be surprised if it takes a couple of weeks for insurance approval but that is the plan. I've been waiting almost 3 years for this combo so I hope it does the trick!
Decided not to go with the S/O combo because of my prior tx experience with a PI, being a 1a, and the lack of studies on the combo. Doc said better odds and safety profile with S/L. My liver is still compensating well enough so hopefully it will be worth the wait.
Dzdayscomin said
Sep 26, 2014
Isiscat2011 wrote:
Groupergetter wrote:
He's supposed to be an excellent diagnostician and doesn't overload himself so he can take time with his patients.
This describes my PCP. He is like a medical detective--like Dr. Gregory House--minus the misanthropic attitude and opiate popping. lol I don't know how long I've had HCV but he thought to test for it on my first visit to him after my former PCP relocated. He ran the HCV test based solely on my elevated liver enzymes and my age group. That was before baby boomer HCV testing was even a issue.
PCPs especially have time limitations and many medical corporations (their employers) force unreasonable quotas on them that don't give them adequate time per patient. My PCP takes the time he needs anyway. Probably because he has been practicing for >25 years and has gotten used to doing things the way he sees fit. I sometimes have to wait 30 minutes to an hour, because he is taking his time with another patient, but that's ok with me.
Now, some of the specialists I've seen haven't impressed me as much. I don't mean personally. Personally I can't help but respect people who perform the service to others that they do. Just that they have limited interest in HCV tx and it shows.
Isiscat are you scheduled to start a tx at this point? Or do you have an appt. set up to get this rolling soon? Wanting to see you get going towards that SVR....real soon
Isiscat2011 said
Sep 26, 2014
Groupergetter wrote:
He's supposed to be an excellent diagnostician and doesn't overload himself so he can take time with his patients.
This describes my PCP. He is like a medical detective--like Dr. Gregory House--minus the misanthropic attitude and opiate popping. lol I don't know how long I've had HCV but he thought to test for it on my first visit to him after my former PCP relocated. He ran the HCV test based solely on my elevated liver enzymes and my age group. That was before baby boomer HCV testing was even a issue.
PCPs especially have time limitations and many medical corporations (their employers) force unreasonable quotas on them that don't give them adequate time per patient. My PCP takes the time he needs anyway. Probably because he has been practicing for >25 years and has gotten used to doing things the way he sees fit. I sometimes have to wait 30 minutes to an hour, because he is taking his time with another patient, but that's ok with me.
Now, some of the specialists I've seen haven't impressed me as much. I don't mean personally. Personally I can't help but respect people who perform the service to others that they do. Just that they have limited interest in HCV tx and it shows.
Groupergetter said
Sep 26, 2014
Trainhopper wrote:
I'm sorry to hear that you are having the relapse and struggles with your old p.c.p. I guess I'm lucky as far as my normal Dr. she hangs out we laugh, we shoot the sh*t. But the important thing (in my mind) is she listens... But to be honest the more and more I think about it I'm just happy to live today... I'm really trying hard to project a positive attitude. I have been a grumpy guy here as of late, and for that I do apologize. Grouper, I wish I could say I was glad to hear that I'm not the only one with problems. But that is a rude and nasty thought. I'm glad I found my way here, but the circumstances? LOL I wish were better. I hope You find a decent Dr. And again I am sorry for the relapse.
I'm not complaining, I have toooo much to be Thankful for. Just wanted you to know that others too have problems and that we can help each other get through them. Through a friend I did find a new and very good pcp. Saw him this week. Primarily a new patient consult. Have a follow-up after he's had a chance to review my charts, labs, and tests, etc. He's supposed to be an excellent diagnostician and doesn't overload himself so he can take time with his patients. Look forward to a good relationship. Take care.
wmlj1960 said
Sep 26, 2014
Trainhopper wrote:
And I dont want to play dr. on myself even I (in my infinite stupidity) wont try a ballsy move like that. Just seems like some dr's lost their passion for life. and to them its another day at the "d.m.v." More sick bodies to push around. I might be wrong in my thinking of it like that, but that's how I truly feel. "JUST ANOTHER NUMBER" punch my card as I walk by.
I havent burned any herbs today, I am about to work on my 3rd cigarette ( smoked in 3 or 4 puffs then put out for later) My sodium for today LESS THEN 300mg SO FAR!!!
I feel like a number with no feelings when I go to my Dr. too, but I understand why in my case. I'm being treated at one of the 10 largest liver transplant centers in the country and there are too many patients and not enough medical staff. I understand that they are human too, overworked humans, and because of that attitudes suffer and mistakes get made. And of course there are also the ones who only give a crap about a paycheck anyway so they make additional mistakes just because... I realize this and that's why I get educated, pay attention to what's going on and ask questions, and I have the right to pull the plug and bring the assembly line to a halt if I see what I know is a red flag mistake because it's MY life. I just gotta remember to not take the lack of healthy psychological care, personal. Although I may 'psychologically' be just a number to them, it doesn't necessarily mean my care will suffer 'physically' because of it. JMO
I'm glad you didn't burn any herbs today. I'm a few days more experienced with living drug free than you, nevertheless I got that addiction monkey on my back after a screwed up day. But I chose to keep living. So that makes us both winners today.
-- Edited by wmlj1960 on Saturday 27th of September 2014 01:55:48 AM
-- Edited by wmlj1960 on Saturday 27th of September 2014 06:46:38 AM
Trainhopper said
Sep 26, 2014
I'm sorry to hear that you are having the relapse and struggles with your old p.c.p. I guess I'm lucky as far as my normal Dr. she hangs out we laugh, we shoot the sh*t. But the important thing (in my mind) is she listens... But to be honest the more and more I think about it I'm just happy to live today... I'm really trying hard to project a positive attitude. I have been a grumpy guy here as of late, and for that I do apologize. Grouper, I wish I could say I was glad to hear that I'm not the only one with problems. But that is a rude and nasty thought. I'm glad I found my way here, but the circumstances? LOL I wish were better. I hope You find a decent Dr. And again I am sorry for the relapse.
Dzdayscomin said
Sep 26, 2014
Groupergetter wrote:
Trainhopper, don't think you're the only one that has a"doctor" that is either clueless, doesn't care, or has so many patients they really can't take time to help you. I just changed my primary care doc. You would think after she's been my doc for a couple years and knows I have hcv, and numerous other health issues, and knows I've been on high dollar treatment for the past 12 weeks and knows I've been having my blood drawn in her office the last 6 months, and has been reviewing my labs (I guess but maybe not) you would at least think she would know I relapsed????? HELLLOOO My last appointment with her, she didn't even know why I was there??? We were talking and she asked me how I was doing? I told her not particularly well since I had relapsed. Her reply? "Oh I didn't know you relapsed" She clearly hadn't looked at my chart, or my lab results. I guess she thought I was there just to say hello and give her a $40.00 copay. Needless to say my records are being requested from my new doc.
There are many folks here that have years of experience dealing with this nasty virus. Most are glad to share their knowledge and advice if asked. Remember though it is up to your docs to order tests, treatment, and medical care. Don't burn you bridges. Hope this all works out for you.
Forgive me if i missed it Groupergetter, but do you have a new tx path set up, or is that part of why you are moving on to a new care team?
Think about that a lot lately...
Duane
Groupergetter said
Sep 26, 2014
Trainhopper, don't think you're the only one that has a"doctor" that is either clueless, doesn't care, or has so many patients they really can't take time to help you. I just changed my primary care doc. You would think after she's been my doc for a couple years and knows I have hcv, and numerous other health issues, and knows I've been on high dollar treatment for the past 12 weeks and knows I've been having my blood drawn in her office the last 6 months, and has been reviewing my labs (I guess but maybe not) you would at least think she would know I relapsed????? HELLLOOO My last appointment with her, she didn't even know why I was there??? We were talking and she asked me how I was doing? I told her not particularly well since I had relapsed. Her reply? "Oh I didn't know you relapsed" She clearly hadn't looked at my chart, or my lab results. I guess she thought I was there just to say hello and give her a $40.00 copay. Needless to say my records are being requested from my new doc.
There are many folks here that have years of experience dealing with this nasty virus. Most are glad to share their knowledge and advice if asked. Remember though it is up to your docs to order tests, treatment, and medical care. Don't burn you bridges. Hope this all works out for you.
Trainhopper said
Sep 26, 2014
Well Duane,
When I was taken in by a homeless man at 16, he tried to instill decent values. Even tho I was a **** strong teen, he related to me quite well. The biggest value he pounded in (lol sounds pervy now that I think about it.. Some homeless man pounding something into me) I digress. So with that came " if it's not the truth, its not worth your time" So having said that, I have also found in life that brutal honesty is a hard thing to come by. People tell the smallest of lies... even for the stupidest reasons. Example: "yeah babe that dress looks beautiful on you" Yes that may be a poor example but a common one still the same. So in my travels through life and being hurt by liars (repeatedly), The truth (no matter the pain) is better then a lie. And the whole openness of my attitude, I think I hid behind my drugs and alcohol addiction for too long. I was so ashamed for my failures as a father, a son, and a friend. So I figure in order to change MY life... I have to change the playground I play on. Not to mention throw out my old rule book. So no more keeping things locked away in my vault. Even the smallest of stumbles or accomplishments (spelling?) is worth me telling someone about. Im just so very happy I've found support here. I believe that good fellowship and support are going to be key to helping my recovery
-- Edited by Trainhopper on Saturday 27th of September 2014 12:03:05 AM
Dzdayscomin said
Sep 26, 2014
Just keep leaning on us Robin, we want you to succeed in having a great life and future.
Sometimes we will post things that may seem harsh or pointed but it's really about how strongly we feel about what is best for you through our experiences, so keep that in mind when you get the feeling someone is being as you like to say dickish....lol it's like an exclamation point...I for one am really happy with how open and honest you are with your struggles....as long as the trend line moves up it's all good, even if there are a few dips in the trend it's the long haul that makes the biggest difference.....kind of like the stock market, there are always corrections, just jump out before any big crashes.
Duane
Trainhopper said
Sep 26, 2014
Thanx guys. I never took this as a medical forum, but as a place where wisdom and knowledge gather. The reason I keep second guessing my Dr's is, well let me number them off.
1) I got a Dx of H.E. ( that apparently is the furthest thing from what may be happening)
2) confusing results. (How can you as a Dr. send me a letter saying my ultrasound came back normal when It hadn't even been done yet?)
3) My G.I. doesnt really listen to me. (she listens to about 1/3 of a sentence, the finishes it with what she thinks the answer is to a question she hadn't even heard all the way)
Thats just the tip of the iceberg.
So yeah to be completely honest, I'm going to listen to this forum, because this forum listens to me. This forum has lots of wisdom (not to say my G.I. doesnt), and is happy to share the knowledge. I'm just turned off by the whole ultrasound/H.E. Dx To be honest Im elated that I dont have it, But in the same respect angry as hell because of the emotional stress that put me threw. When I was released from the hospital they told me nothing about H.E. I guess it was left up to me to find out. I promptly went home and hit the ole laptop. Most of the crap I had read, floored me. Stuff like "70% mortality rate at 9 months. 100% within 3 years" It quite literally almost drove me back to gutter (where it took me so long to climb out of)
I did apologize to my p.c.p. told her it wasnt her (cause its not) but once bitten.... twice shy
And I dont want to play dr. on myself even I (in my infinite stupidity) wont try a ballsy move like that. Just seems like some dr's lost their passion for life. and to them its another day at the "d.m.v." More sick bodies to push around. I might be wrong in my thinking of it like that, but that's how I truly feel. "JUST ANOTHER NUMBER" punch my card as I walk by.
Sorry for my rant. Positive side... I havent burned any herbs today, I am about to work on my 3rd cigarette ( smoked in 3 or 4 puffs then put out for later) My sodium for today LESS THEN 300mg SO FAR!!!
-- Edited by Trainhopper on Friday 26th of September 2014 11:10:11 PM
Isiscat2011 said
Sep 26, 2014
Dzdayscomin wrote:
It's a trade off or benefit vs risk
Exactly. Benefit vs risk is always the question. As long as we can get accurate facts, so we can make our informed decisions, I am happy with that.
Dzdayscomin said
Sep 26, 2014
Thanks Tig, its nice when you come on and present an opinion that is just as valid, Robin keep in mind that some drugs or as you call them chems. Can actually provide what you may need to overcome some things that may be more difficult unassisted with a tx.
It's a trade off or benefit vs risk if you don't have a severely damaged liver a medication that can support your ability to get past something much harder on your system then it makes more sense.
Again thanks Tig this is not the first time you have had to in around about way remind me of this.
Duane
Tig said
Sep 26, 2014
Many doctors get their panties in a wad when you come in sounding like you've spent a week memorizing medical journals and requesting every test under the sun and resourcing a 1997 NIH report. That doesn't mean you give up paying attention to detail and being a good personal advocate. That was one of the things that really impressed me with this forum. It's full of intelligent, knowledgeable people, that have first, second and third hand experience with this disease and the liver in general. We aren't a medical advice forum, but all things HCV and that advice comes from experience more than most anyplace else I've visited. We recommend you listen to your doctor and healthcare team. If you have a question about their advice, then by all means share it here if you like. We are well known for our knowledgeable opinions, but the final choice is between you and your doctor.
Wellbutrin is an anti depressant and also has/is used to help people quit smoking. I took it throughout treatment as an AD and it helped me avoid the horrid depression associated with Interferon. Once I completed Tx, it was an easy AD to quit. I would take it again if the need ever presented itself again.
Tig
Trainhopper said
Sep 26, 2014
Lol that's funny... Well doc said she didn't want me playing doctor to myself. Said leave it the professional people. It was good that I want to be proactive, but don't play doctor. I brought up (yet again) the blood I had seen. She said leave it to my G.I. She wasn't a specialist. Presented with my latest panel she said the basic things y'all said... Good numbers yadda yadda. She was troubled about the ultrasound results that I received before I had one done.... Said to bring it up with G.I. But as far as the one I posted with the "unremarkable", said most likely its just that... The size looked good, yadda yadda said if it was ANYTHING weird they'd have commented. Overall she was impressed with my wanting to stop herb, and my anxiety about my body. Wanted to give me welbutrin? Not sure bout the spelling there... I fat out denied anything as meds.... Duane is right.... Chems no good.
JIme said
Sep 26, 2014
A frozen ass? My friends wife's face is like that..........lol........
Isiscat2011 said
Sep 26, 2014
Treating anal fissures with botox..... it's all fun and games until your butt can no longer smile. lol
everything everyone has said has been valuable information. I think it's bio fibrin tag (lol) jkin.... cant we all just get a bong?
Actually, my comments about payment assistance programs, particularly where patients are denied approval by their insurance companies or Medicare/Medicaid, were intended to be informational.
My posts were not intended as personal slights or "negative and confrontational" but being accused of that does get old.
Hi Duane,
Everything is good! Don't you just feel the love? Time to move on and concentrate on finding financial resources for those unable to utilize the available programs we have pointed out. Thanks for your thoughts, your comments are noted.
Tig
Whoa!
Easy all, she was actually correcting my poor research into the patient assistance programs, i thought if you couldn't afford it, they'd pay for it....which I really think they should!
So this was more aimed at me and not anyone else.......please lets not let this carry any further, if I'd have done a better job of reading the guidelines this transaction would have been different.
Isis and I always quibble about this kind of stuff, i plant a bad seed, she digs it up and puts a good one in it's all good.
So lets all do a little kumba ya here.......you both are excellent resources for this forum that many people count on and I don't want to lose either of ya.
Capiche
Hi Isis,
I appreciate your point of view and will certainly remember your solid advice to write what I feel is appropriate. I don't recall mentioning any untruths regarding the Payment Assistance programs, I just pointed them out again. We have done that for scores of people needing suggestions and options regarding payment and pointing out these programs is one thing we will continue to do. I also challenge your notion that I am somehow manipulating people's perception of the facts. Instead of criticizing my attempt to help find financial assistance for our membership, why don't you turn your knack for helpful research into something positive and find some assistance that works. Negativity and confrontation serve no purpose. Again let's do our best to bring hope to these posts.
Tig
If I can do it , You can,.
just keep your stick on the ice.
Hope is great but manipulating people's perceptions of the facts is something else. The idea (perpetuated by pharma) that everyone who wants it will receive HCV tx, regardless of their ability to pay, is ludicrous. I'm not going to mislead people into believing that payment assistance programs are going to solve the problem of paying for HCV tx for all, Tig, To my way of thinking that untruth will only lead to greater despair for many people in the long term. How about if you write what you feel is appropriate and I will do the same.
Gilead has not been forthcoming to the public about how much financial support it has actually provided to patients, or intends to provide to patients, despite requests from Congress to disclose this information. Notably, all patient assistance programs have stringent eligibility requirements that will include some HCV patients and exclude others.
Below are some of the terms and conditions of Gilead's Support Path Program to help pay for co-pays (there are also income requirements). Unfortunately, no additional explanation or clarification is provided by Gilead:
Good man!! We're here for the days you feel like talking. Hang in there bud...
Tig
While there are always bumps in the road and choppy seas, let's do our best to not knock the wind out of everyone's sails... lets try to balance the negatives with positives, and reduce despair with just a little bit of hope. Maybe?
Tig
lol Good one, Duane. Don't worry; the crap will be scooped up by the lawyers who sue third party payers to provide coverage but it will take some time. If the market competition results in reduced prices soon enough the lawyers won't be necessary. One way or another it will get done.
If Gilead was generous enough to cover everyone who is denied they would be generous enough to cut prices to begin with. And, no non profit payment assistance program has the funds to cover this unmet need.
P.S. Also, don't count out creative docs that know how to get things done with third party payers. Many will go with the flow but some of them will fight like tigers to get their patients treated regardless of liver fibrosis stage. If the first one you see isn't a tiger then find one who is.
-- Edited by Isiscat2011 on Friday 3rd of October 2014 08:47:38 PM
Looks like the cat just crapped in your litter box....lol
I would have to go with what shes saying here because I'm not as research savvy as she....but like anything else the worst thing that can happen is they say no.....so I'd still give it a try.
Just a little reality check here. If you think Gilead is going to be paying for tx for every F-0 to F-2 who can't get coverage think again. Most people with severe fibrosis (F-3 to F-4) will be treated sooner rather than later via either their insurance or Medicare/Medicaid.
Also, I recall reading Gilead's policy stating that it would not offer any assistance to people receiving Medicare/Medicaid. Unless they open things up their assistance is quite limited.
Naturally, Gilead may make exceptions for unique tx populations that they want to study, but for the "average" HCV patient don't expect Gilead or anyone else to pay for tx just because your insurance denies you. You may, however, expect Gilead to assist with co-pays if you are approved by private insurance but have a moderate income.
The key to getting tx approved and paid for in ambiguous situations is a persistent medical provider who is willing to jump through the hoops, over and over again, if need be.
Remember there are AASLD tx guidelines on who to treat and when. Those guidelines will be invoked by third-party payers.
Did you mention Lymes disease?
Hey Robin,
Duane is right, don't be discouraged on the payment issue. I'm including a link to our thread on payment assistance programs that are available. Trust me, they work and they work well. As Duane mentioned Gilead and J&J both have excellent programs that have provided both coupon reduction as well as free medication to people with low incomes and high deductibles. The Pan Foundation is a fabulous organization that you should contact when you know more on what your doctor wants to do.
Often they will require a biopsy when a fibroscan score is either very low or very high. They want the confirmation that only a biopsy can provide. I believe they will begin to place more trust in the fibroscan but it's still being considered a new procedure by many and therefore questioned. A biopsy is a simple process, albeit invasive. We can answer any questions you have on it when you're ready to talk.
I'm more than a little confused about your doctor's confusion with the ultrasound and Hep B test. If she's not sure with her ability ("not her field") to diagnose from the results, she shouldn't be doing it. There are plenty of qualified doctors out there that are. If you have ever had or been exposed to HBV, you would be positive for the antibodies, period. You need to be retested for the antibodies and go from there. Im also confused about how (in the world) a pinched nerve could be confused for HE? Something smells... What are your future plans with this doctor? I might seriously consider a new opinion. JMHO...
Tig
http://hepcfriends.activeboard.com/t56904226/payment-assistance-programs/
Robin if they won't, contact the pharmas like Gilead and J&J for there assistance programs you may get them at little or no cost, also ask about trials, don't give up, also don't fear the biopsy you are a tough guy and it will be a lot less painful than some things you have already experienced in your life.
DON'T BE DISCOURAGED! just keep pushing and praying and you will get the help and assistance you need, and on a positive note if your liver is not that degraded thats a great thing to hear......
fibroscan showed little to no scarring *as I jump for joy* but Medicaid is going to require a biopsy. also Medicaid wont cover the cost of the meds if my liver isn't degraded enough? Wtf? Really? Well that's what the G.I. Says anyway.... She said the cost of treatment is 200k like I can afford that..... But I have a happy face on .
Cool! Ask lots of questions, good luck!
Tig
yeah sure will. I'm here now and waiting.... Lets see what's what
Hi Robin,
Glad you're moving forward and have found some help and assistance from the family. Let us know what your doctor tells you today. Good luck...
Tig
I would imagine your family has noticed your positive directional shift and are being supportive....either way keep up the good effort.
Duane
hi guys. just been busy. I go to my g.i. doc today in hopes that she clears some stuff up for me. Since I stopped the lactulose my symptoms have not increased. Things are going ok so far. healthy as far as I can be. I moved in with family to help the financial burden. sucks but gotta be done. other then that it's business as usual. Sodium under 1000mg total calorie intake is about 3000. still smoking some. trying to quit...
I've been missing him too Duane. I think he knows he is welcome around here anytime, regardless of ANYTHING, so I hope we hear from him soon!
Hey Robin, Just checkin in on ya to see how things are going?
Hopefully everything is going well and ur keeping the train on the tracks.
Be well buddy !
So then we will say SVR by 4th of July 2015.....sounds good huh ?
As with all HCV tx the odds are reduced for tx experienced cirrhotics. At 12 weeks still somewhere between 80-90% according to the clinical trial results.
I'm not sure yet about the duration or if Riba will be added. My last protocol with Riba caused severe anemia and a full body rash although the Incivek probably exacerbated those side effects. I'll try Riba again if doc approves it but she seemed disinclined to want to use Riba on me again. I will probably push for an extended tx duration--16-24 weeks--due to my cirrhosis.
It is kind of a fluid thing because Gilead is still doing some testing on the shorter protocols but I definitely would not go for <12 weeks. The 8 week protocol may be ok for some tx naives without liver damage but I can't risk a shortened tx. I am hoping they will learn more to tailor the txs better to the individual, based on genetic and other variables, but doubt that will happen in time for my tx.
Thanks Tig,
So Isiscat, will you be doing or going for the 24 week no riba? Ion 3 at 99% on previously tx'd that sounds pretty good eh ?even though i believe 8 or 12 would probably do it, but i better read more on relapse in that....off hand I didn't see anything on that? I'm still kinda fog headed.
Edit..... ion 2
-- Edited by Dzdayscomin on Saturday 27th of September 2014 04:09:45 AM
Hi Duane,
Heres some data on it:
http://hcvadvocate.org/hepatitis/factsheets_pdf/Phase_3_Genotype_1_SOF-LDV.pdf
Tig
Well we will certainly be praying for an easy tx that gets the job done with little to no sx, is that the single pill regimen?
What are the studies or trials on it so i can read up a bit?
Yes, already discussed getting on the S/L combo with my Hepatologist. I have an appointment for Oct 16th and, as far as I know, she is planning to write the script that day. I wouldn't be surprised if it takes a couple of weeks for insurance approval but that is the plan. I've been waiting almost 3 years for this combo so I hope it does the trick!
Decided not to go with the S/O combo because of my prior tx experience with a PI, being a 1a, and the lack of studies on the combo. Doc said better odds and safety profile with S/L. My liver is still compensating well enough so hopefully it will be worth the wait.
Isiscat are you scheduled to start a tx at this point? Or do you have an appt. set up to get this rolling soon? Wanting to see you get going towards that SVR....real soon
This describes my PCP. He is like a medical detective--like Dr. Gregory House--minus the misanthropic attitude and opiate popping. lol I don't know how long I've had HCV but he thought to test for it on my first visit to him after my former PCP relocated. He ran the HCV test based solely on my elevated liver enzymes and my age group. That was before baby boomer HCV testing was even a issue.
PCPs especially have time limitations and many medical corporations (their employers) force unreasonable quotas on them that don't give them adequate time per patient. My PCP takes the time he needs anyway. Probably because he has been practicing for >25 years and has gotten used to doing things the way he sees fit. I sometimes have to wait 30 minutes to an hour, because he is taking his time with another patient, but that's ok with me.
Now, some of the specialists I've seen haven't impressed me as much. I don't mean personally. Personally I can't help but respect people who perform the service to others that they do. Just that they have limited interest in HCV tx and it shows.
I'm not complaining, I have toooo much to be Thankful for. Just wanted you to know that others too have problems and that we can help each other get through them. Through a friend I did find a new and very good pcp. Saw him this week. Primarily a new patient consult. Have a follow-up after he's had a chance to review my charts, labs, and tests, etc. He's supposed to be an excellent diagnostician and doesn't overload himself so he can take time with his patients. Look forward to a good relationship. Take care.
I feel like a number with no feelings when I go to my Dr. too, but I understand why in my case. I'm being treated at one of the 10 largest liver transplant centers in the country and there are too many patients and not enough medical staff. I understand that they are human too, overworked humans, and because of that attitudes suffer and mistakes get made. And of course there are also the ones who only give a crap about a paycheck anyway so they make additional mistakes just because... I realize this and that's why I get educated, pay attention to what's going on and ask questions, and I have the right to pull the plug and bring the assembly line to a halt if I see what I know is a red flag mistake because it's MY life. I just gotta remember to not take the lack of healthy psychological care, personal. Although I may 'psychologically' be just a number to them, it doesn't necessarily mean my care will suffer 'physically' because of it. JMO
I'm glad you didn't burn any herbs today. I'm a few days more experienced with living drug free than you, nevertheless I got that addiction monkey on my back after a screwed up day. But I chose to keep living. So that makes us both winners today.
-- Edited by wmlj1960 on Saturday 27th of September 2014 01:55:48 AM
-- Edited by wmlj1960 on Saturday 27th of September 2014 06:46:38 AM
I'm sorry to hear that you are having the relapse and struggles with your old p.c.p. I guess I'm lucky as far as my normal Dr. she hangs out we laugh, we shoot the sh*t. But the important thing (in my mind) is she listens... But to be honest the more and more I think about it I'm just happy to live today... I'm really trying hard to project a positive attitude. I have been a grumpy guy here as of late, and for that I do apologize. Grouper, I wish I could say I was glad to hear that I'm not the only one with problems. But that is a rude and nasty thought. I'm glad I found my way here, but the circumstances? LOL I wish were better. I hope You find a decent Dr. And again I am sorry for the relapse.
Forgive me if i missed it Groupergetter, but do you have a new tx path set up, or is that part of why you are moving on to a new care team?
Think about that a lot lately...
Duane
Trainhopper, don't think you're the only one that has a"doctor" that is either clueless, doesn't care, or has so many patients they really can't take time to help you. I just changed my primary care doc. You would think after she's been my doc for a couple years and knows I have hcv, and numerous other health issues, and knows I've been on high dollar treatment for the past 12 weeks and knows I've been having my blood drawn in her office the last 6 months, and has been reviewing my labs (I guess but maybe not) you would at least think she would know I relapsed????? HELLLOOO My last appointment with her, she didn't even know why I was there??? We were talking and she asked me how I was doing? I told her not particularly well since I had relapsed. Her reply? "Oh I didn't know you relapsed" She clearly hadn't looked at my chart, or my lab results. I guess she thought I was there just to say hello and give her a $40.00 copay. Needless to say my records are being requested from my new doc.
There are many folks here that have years of experience dealing with this nasty virus. Most are glad to share their knowledge and advice if asked. Remember though it is up to your docs to order tests, treatment, and medical care. Don't burn you bridges. Hope this all works out for you.
Well Duane,
When I was taken in by a homeless man at 16, he tried to instill decent values. Even tho I was a **** strong teen, he related to me quite well. The biggest value he pounded in (lol sounds pervy now that I think about it.. Some homeless man pounding something into me) I digress. So with that came " if it's not the truth, its not worth your time" So having said that, I have also found in life that brutal honesty is a hard thing to come by. People tell the smallest of lies... even for the stupidest reasons. Example: "yeah babe that dress looks beautiful on you" Yes that may be a poor example but a common one still the same. So in my travels through life and being hurt by liars (repeatedly), The truth (no matter the pain) is better then a lie. And the whole openness of my attitude, I think I hid behind my drugs and alcohol addiction for too long. I was so ashamed for my failures as a father, a son, and a friend. So I figure in order to change MY life... I have to change the playground I play on. Not to mention throw out my old rule book. So no more keeping things locked away in my vault. Even the smallest of stumbles or accomplishments (spelling?) is worth me telling someone about. Im just so very happy I've found support here. I believe that good fellowship and support are going to be key to helping my recovery
-- Edited by Trainhopper on Saturday 27th of September 2014 12:03:05 AM
Just keep leaning on us Robin, we want you to succeed in having a great life and future.
Sometimes we will post things that may seem harsh or pointed but it's really about how strongly we feel about what is best for you through our experiences, so keep that in mind when you get the feeling someone is being as you like to say dickish....lol it's like an exclamation point...I for one am really happy with how open and honest you are with your struggles....as long as the trend line moves up it's all good, even if there are a few dips in the trend it's the long haul that makes the biggest difference.....kind of like the stock market, there are always corrections, just jump out before any big crashes.
Duane
Thanx guys. I never took this as a medical forum, but as a place where wisdom and knowledge gather. The reason I keep second guessing my Dr's is, well let me number them off.
1) I got a Dx of H.E. ( that apparently is the furthest thing from what may be happening)
2) confusing results. (How can you as a Dr. send me a letter saying my ultrasound came back normal when It hadn't even been done yet?)
3) My G.I. doesnt really listen to me. (she listens to about 1/3 of a sentence, the finishes it with what she thinks the answer is to a question she hadn't even heard all the way)
Thats just the tip of the iceberg.
So yeah to be completely honest, I'm going to listen to this forum, because this forum listens to me. This forum has lots of wisdom (not to say my G.I. doesnt), and is happy to share the knowledge. I'm just turned off by the whole ultrasound/H.E. Dx To be honest Im elated that I dont have it, But in the same respect angry as hell because of the emotional stress that put me threw. When I was released from the hospital they told me nothing about H.E. I guess it was left up to me to find out. I promptly went home and hit the ole laptop. Most of the crap I had read, floored me. Stuff like "70% mortality rate at 9 months. 100% within 3 years" It quite literally almost drove me back to gutter (where it took me so long to climb out of)
I did apologize to my p.c.p. told her it wasnt her (cause its not) but once bitten.... twice shy
And I dont want to play dr. on myself even I (in my infinite stupidity) wont try a ballsy move like that. Just seems like some dr's lost their passion for life. and to them its another day at the "d.m.v." More sick bodies to push around. I might be wrong in my thinking of it like that, but that's how I truly feel. "JUST ANOTHER NUMBER" punch my card as I walk by.
Sorry for my rant. Positive side... I havent burned any herbs today, I am about to work on my 3rd cigarette ( smoked in 3 or 4 puffs then put out for later) My sodium for today LESS THEN 300mg SO FAR!!!
-- Edited by Trainhopper on Friday 26th of September 2014 11:10:11 PM
Exactly. Benefit vs risk is always the question. As long as we can get accurate facts, so we can make our informed decisions, I am happy with that.
Thanks Tig, its nice when you come on and present an opinion that is just as valid, Robin keep in mind that some drugs or as you call them chems. Can actually provide what you may need to overcome some things that may be more difficult unassisted with a tx.
It's a trade off or benefit vs risk if you don't have a severely damaged liver a medication that can support your ability to get past something much harder on your system then it makes more sense.
Again thanks Tig this is not the first time you have had to in around about way remind me of this.
Duane
Many doctors get their panties in a wad when you come in sounding like you've spent a week memorizing medical journals and requesting every test under the sun and resourcing a 1997 NIH report. That doesn't mean you give up paying attention to detail and being a good personal advocate. That was one of the things that really impressed me with this forum. It's full of intelligent, knowledgeable people, that have first, second and third hand experience with this disease and the liver in general. We aren't a medical advice forum, but all things HCV and that advice comes from experience more than most anyplace else I've visited. We recommend you listen to your doctor and healthcare team. If you have a question about their advice, then by all means share it here if you like. We are well known for our knowledgeable opinions, but the final choice is between you and your doctor.
Wellbutrin is an anti depressant and also has/is used to help people quit smoking. I took it throughout treatment as an AD and it helped me avoid the horrid depression associated with Interferon. Once I completed Tx, it was an easy AD to quit. I would take it again if the need ever presented itself again.
Tig
A frozen ass? My friends wife's face is like that..........lol........
Treating anal fissures with botox..... it's all fun and games until your butt can no longer smile. lol