Well, got an email from my NP, hep doc has ok'd my request to extend treatment to 72 weeks. I am anticipating bluecross blueshield denying drug coverage past 48 weeks (but who knows, maybe I'll get lucky)..Is anyone familar with commitment to care's procedure and requirements for assistance? Any input would be helpful...Trying to get my ducks in a row, now in week 33.
" it's kinda hard to get into the club ha ha!." (LOL) I think my direct approach of voicing my opinion procludes me from being in the club (vbg)...I always chuckle when I read comments on how people would act differently in person as opposed to on the net...Horse pucky, right or wrong, in person or not, agree or disagree,what you see is what you get...
When I 1st came here, I saw your name...and I thought I'm @ the right place! Your nick name says it all. Thanks for your prayers and your kind words. It is amazing how a few well meaning words from someone here can help us through those difficult days. Is this your 2nd time txing...and what are your stats..if I might ask? I hope you had a nice weekend. I was supposed to go to a graduation party but instead I just took it easy. I have to make more of an effort to get out there...get outta my own head, ya know? I look forward to hearing from you.
Hi, hope you're doing as well as can be expected. I thought... hmmm... I'll go on just to read the first couple of posts... glad it was yours... don't know how members keep up here and like fullofhope mentioned, it's kinda hard to get into the club ha ha!... if I don't see you for awhile, be well... and you know how to get a hold of me. ... hope you're weather is fine and not too hot...
I like what you say... I made a comment a month or so back on the 'flock' syndrome but have found that there's opportunity to encourage many regardless of which 'wave' they came in... I've only been around a few months but find some are encouraged and are mutually encouraging and others, well maybe they have different goals. I like hangin' out and find that every now and then i can help someone and someone can help me. I like to be 'proactive' in those areas and try to keep thick skin when things go a bit sideways... I've even learned to like cruelworld especially after his musical donation of late :>)
Suppose it is not kosher to have favorites... so I won't go there... but your direct approach of voicing your opinions is what always draws me to your post. With work and fatigue, can't get everyone's in, and almost nobody's.. but scan for yours... and hoping that you're well and that you beat the manure of this ole virus. Oh.. and I'm out may as well point out it doesn't take someone majoring in rocket science to see your a few points above the learning curve.
FullOfHope77, personally, I think you're one of the most positive people on this forum, and actually IMHO from what I've read, (cause I always look for yours)... it is obviously genuinely care about others... you're a great asset here and you do make a difference. You're comments here sure helped me on a couple rough days... be well...
I know nygirl will have info. for you..she was with Commit to care. If doc decides to continue to treat me after not dropping 2 logs @ 12 week..I am applying for pegassist.
I spend way too much time here probably 'cause I l live alone and I feel the need to connect. No one I know in this neck of the woods can relate to what I'm dealing with...nor do I have any family here. So..I don't know if (probably not) if I am part of the "flock" but just by the amount of time I spend here...I feel I am. For me...this site has been a blessing. What I say, is what I mean. I don't have the patience nor energy to put on a facade here or anywhere...it's enough that I show up...and sometimes I don't. I do pray for people when I say I will...and I trust that when someone tells me they are doing just that for me...I am grateful. All the best to you All.
You're the reason that this forum exists in my mind. If this is all you have then I especially feel that I and others have the responsibility to honor that and respond in kind. You never know what a 'word in time' will do for someone. Last time I went through tx I was amazed at the comments that would literally seem to lift me off the ground and encourage me; could be a phone call or an email that was 1 sentence that seem to do the trick. So 'ladywhy' I will certainly be praying for you and believe that you will do the same for me! And thanks to everyone for your encouraging words no matter how direct or indirect they may be. Thank you too Libby for your kind words. Blessings! Back to the fight!
Thanks everybody, I saw NYGirl had been on the program, as well as a few others, also saw Blakcat was denied the program when searching the forum..was just hoping someone might know the income/asset limits etc.
Ladywhy, I also come here to read and occasionally post to fellow heppers, no question I have learned a ton about hep c here, as well as a bit more about myself (g). I as well am single, immediate family knows about my affliction as well as dentist and dermatologist office etc. (I know, here we go again (g)). So I admit, it is kinda nice to read how others are doing/coping with treatment etc.
Have an appointment with my "affliction" doc's np on the 26th so will start the insurance ball rolling and see where we go from there...I did read on my insurance company website that it appears they will only cover 48 weeks, don't know if that is written in stone or not...
how thoughtful to inquire... and you may regre you've asked (but prob not, 'cause I believe you to be sincere and you wouldn't if you were curious)...did shot 13 Fri. I could feel a major diff physically with 1st shot. 1st 9 wks felt pain in bones/muscles; horrible fatigue... found out I cleared on <5 on my 4th wk... wanted to quit and thought I could, 'cause doc explanation sucked. Came here Wyntree explained it in layperson terms the necessity of going the course... the fatigue was so bad - my days literally consisted of waking, eating, going to work for 7 hrs; eating; sleeping. no prob with sleep 'cept it was 10 & 11 hrs per night - doc said that's cool, don't worry but just doesn't seem right to me. just had bloods done - whites and reds are on low end of normal but not outside where you get the little "L" yet. about a wk and 1/2 to 2 wks ago, the pain seem to lift and now just fatigue. He put me on provigil last wk and began to feel normal like nothing was wrong with me.. but stupid stopped the pills yesterday, just want to make it without anything added, thinking the tx is god awful enough... you know? Even considering going only to 24 instead of 48... just toying with the idea... but a couple of wks ago was 'toying' with going 72 ha ha... why? 'cause I have scaring 2... and that doesn't sound at all good for a healthy person....
so... besides feeling dizzy when I stand, being more forgetful than usual, scalp itching all the time, and fatigue.. I'm great... thanks for asking...Libby
I'm glad to hear you are UND at 4 weeks, that's great Libby! We are at the same stage of tx...and also feeling the same way...getting out of bed can be nearly impossible some mornings. I have low wbc, and just last week found my hgb is dropping. For some strange reason..I think...I'm supposed to be glad and lookin' forward to anemia! I also have low platelets...ah what a mixed bad we have to deal with. I'm not sure if you are aware of it..but I have responded to msges you have sent me and I asked some questions? I am well aware that it can be difficult to catch up with so many posts..I just wanted to let you know. I hope your week goes well and I would love to hear about the energy booster your dr. prescribed. I've never knew what it meant to really be tired/fatigued as I do now. It is a DRAG! Hopefully, we'll get to the end like so many here and Celebrate!
I have been through tx 2 previous times to this, once in the 90's w/interferon only, 1 w/SOC just finished last Sept and relapsed in Dec. And now in Vertex study. My hope is that I will eventually get the real vertex (VX-950 or now called Telaprevir) and only know that currently i'm in ARM A,B or D. (not in C as it is unblinded due to lack of Ribo drug). The promise is that everyone will eventually get the real drug. 3 of the 4 will get it immediately and 1 is the control arm to compare to I guess. But that's the study protocol. As to the bigger issue of having a place where we can come to give and get mutual encouragment that's my ideal of what this forum is all about. Libby is an encourager but Libby I didn't know you were so early in your tx. It will get easier as time goes on. Since you cleared so fast you will get SVR in 48 and likely don't need 72. I'm not giving med advice here but believe that is true. Your voice needs to be heard here too as many are encouraged by your positive attitude. LadyWhy, I will continue to pray for you and Libby and believe in prayer as something very real. I won't push personal beliefs on anyone but know that we have an amazing Creator that desires nothing but our well being. full of hope...
Thanks both of you... and yes, I will hold you both in my thoughts and that's just not typed words...
Hope, I thought you had mentioned to me recently that I might be nearing tx, and i was like...huh?... that maybe I'd told you I was beginning to consider 24 wks now, opposed to 48. I asked him last wk if I was a candidate for shorter tx and he said... he was a believer in 52 and that's what most of his patients go... which is an odd number, given you usually hear 24 or 48 or 72.. whatever...
Lady, the fatigue thing is a drag ... ask your doc about provigil. He said it takes time but I felt it immediately.. positive results... but just didn't feel right about it and Stoped - this is a virus that affects our liver and IMHO... for me (and me only)... I just want to get to the end with as little assault on the liver, kidney, etc the tx alone is a killer... and just get back to where I left off before dx... I liked my life and want it back, that's all.. Another work week in a few hours.. I start at 10 tomorrow so better get off to dreamland so I can get the 10 to 11 hr sleep ha ha! that's what disturbs me the most... it really shortens the days... and seems you get further and further behind... And when awake... it is a matter of the mind going 1000 mph and the body not able to keep up...Libby
C2C sent me two vials with the interferon tablet and the liquid. Great not to have to worry about the redipen freezing. Mixing the vials is no big deal, and you get an extremely accurate delivery of peg and can even take more than you are prescribed, as the 150 mcg vials will actually give you about 200 mcg of peg if you take the whole thing (not something I will ever do, given that I am going 72 weeks and don't need the extra assault to my brain. Some really big people might find it helpful, though, with their doctor's knowledge.)
I hope I never gave you the wrong impression but have thought of you as one of the 'senior contributors' here and have found insight and encouragement in your words. I have found that I can come here and be encouraged and and encourage others and I get off on that a lot. It keeps my mind off my self. Although I've been accused before of private clubs I see this as a place that we're all building together brick by brick and we can build a fortress of strength for everyone with no one being left behind. I desire to be for you LadyBug what you need me too as you have already done more for me than you know!
Keep up the great work Ms. Deputy :>) as we're all full of hope we're going to beat this thing and SVR forever! Pro you seem to attract a crowd whereever you go! And BTW, I relate the the hair thing as I have little but know what's coming and try to keep it thick as I can as long as I can... :)
Thanks to everyone too!
Hey, it's only hair, for most all it will grow back.But for me,I didn't have much when I began treatment!!! So I'm am holding out optimism it will grow back where it had left years ago!!! (LOL!!!!) It's all about attitude..;^)
It's all about attitude is right. Yours is great. So, do you ever wonder if we actually know the people we talk to here on the forum? Wyntre may have seen you drive by. I might have met Amerboi on a flight. All those people in California probably have waited tables together while waiting for their acting breaks. (Sorry Angel, Forsee, Grandma, Rosebud and any other California girl I missed:) couldn't help but make a joke about where you all live.
I maybe know some here from my Air Force days.
I did date a guy from Connecticut once, but his parents lived in Mississippi.:)
I am on Commitment to Care for the last 22 weeks of my 72 week treatment.
They provide excellent phone service, and required of me signing the consent form and a copy of my 1040. They also need your doctor to fax them a prescription and will have to contact someone from your insurance company to see about your copay, whether they will pay after 48 weeks, etc.
I was also required to spend 3% of my family income this year on peg/riba copay, which I did with six copays of almost $400 each, making me eligible for free meds the last 22 weeks.
It is a great program, and you have nothing to lose contacting them. They get info from you on your first phone call and can give you a good idea right away if you qualify.
Thank you everyone for your input and thoughts...Even for someone like me who is a bit rough around the edges, gives me the warm and fuzzies reading your responses. Thanks...As we have to do with treatment, I will also take this one step/day at a time.. the first step has already been taken by getting the OK for extension from my Doc. On to the next by having my doc make the request to my insurance company (heck, they are taking my second step for me (g)))...Off to work, I'm good for about 5-6 hours a day, only 3-4 of those are actually productive, but it is the effort that counts !!!
wyntre9, If you have been seeing motorcycles coming to and from bikeweek at Laconia this past week, we are in the same neck of the woods (g) Believe nearly 400,000 showed up this year.
Thanks again everyone, will keep all posted..Bill and BThompson I may need to tap into your experience, thanks for the offer..
and Libby, Ladywhy and FullOfHope, I may need to tap into your support!!! thanks for being there...
Did I miss anyone??
Pro, wait for a second while I hijack this thread..
Sad to hear everyones comments about the club. I felt that way too at first, and would not post for any reason. I would read the same questions so many times I could have given the answer myself, but I didn't feel qualified. I wasn't on tx, and the few posts I tried made me feel like the class nerd. When I got on and tried to intervene once becauseof the ugliness (full moon I think) I felt like I was perceived as a know it all, and I was embarrassed at reactions to my post. I'm harless, just stupid sometimes at getting my point across.
I don't want anyone to feel that way. Libby and fullofhope, I often feel as if you two have a private club and I'm not a candidate for membership. I'm glad you have each other for support. I found that at first there were just a few I connected to and I'll always be grateful to them for getting me started on tx.
Libby, sorry you're feeling rotten, look for the hair to start falling out more now too. How's that for support:)? I'm sorry if we started out on the wrong foot, seems as if I have two left feet at times. How's that for mixed analogies?
Fullof hope you've done this before, hope the trial you're in puts this away for good. Hope I'm not one of the discouragers.
Lady, you already know how I feel, I can't stand you:)
Bill nothing to say but hi you handsome guy!:)
Pro- I hope commitment to care is able to help if ins doesn't. I am busy being an underground railroad, but not a lot of travelers yet. Let me know if I can help.
Glad to hear you are working, I've often wondered if you were going to be able to resume when the weather got nicer. Guess that wood chopping paid off.
I know you could care less about "being in the club" but I enjoy your posts and am not offended at all when you ignore my posts to you:)
Well, I've been up since five because of my hip. It's been a real pain in the butt. I don't get to come here as much as I use too. I'm never on during the daylight hours. I really like coming here and hearing others' stories. I like people and am noted for whining about being ignored. My post in January "Is everyone ignoring me or am I just being paranoid?" Favorite answer: "You're not paranoid."
I had my insurance deny my extension (they said it' "experimental") and C2C covered every single drug until week 72 (I even had a few extra left) without ANY problem.
You just call the pharmacy and refill the prescription once a month and they mail it straight to your door - no cost, no copay, no nothing! It just shows up Priority Mail or one of them like magic!
Sometimes they included ice packs but what I liked even more was when they finally started sending me the tablets and you just put the saline on top and make the mix yourself...I don't know why they don't send that ALL of the time - perhaps you could ask your doc to write the script that way.
That way you don't need to worry that they got too warm and you don't have to keep them in the fridge...which I always hated doing cause the boxes took so much room!
They even send you the syringes so you don't have to go to the regular pharmacy and get them or anything.
And if you don't get the exact bottle of riba that you are used to - don't freak out...it's the same stuff, some are pills, some are tablets etc. but the med is the same. For some reason psychologically I found it almost impossible to take the new one - even Knowing that it was the same exact stuff! But I did of course.
Now...five months post tx and UND.
I know I would not have had a chance without the extension and at the time it was unheard of doing it. It was the smartest step out in faith I could have taken.
Just wanted to say once again, thanks everyone for your help and we'll see how it plays out..Kinda hit the sides plateau NYGirl speaks of occassionally, now it is just kind of a fatigued grind(with a heck of a lot less hair(g))-thanks for the info NYGirl..again, thanks everyone..
....and ladybug I haven't been ignoring you!!! :^) I run out of things to say and my mind strays, you should hear me on the phone, I'm good for about 45 seconds and then my mind floats on off -even if I made the call!(lol)
A little humor, sent a quick email to my NP thanking her for pursueing my extended treatment and getting the OK from my hep doc, she replied back and included this comment in her message.
"Can't say I have ever been so heartily thanked for extending hep C treatment!!"
...(lol) I got a kick out of that..
Funniest thing - a few years back (like when I was pregnant with my now 10 year old) We went to Disney World.
At the time I was living in Barrow, AK (which is the northernmost tip of North America population 3,000 - if you count the polar bears.) Anywhoooo - we're sitting there at a restaurant, me pigging out on EVERYTHING... of course... and lo and behold...
Our neighbors from Barrow ---- get seated a table away.
We caught up on the 3 day old gossip we had missed and promptly left.
Nice to see them - but DANG... wasn't that why we went to Florida? LOL!
So yeah - very small world it is... and I ain't talkin' that ride... with that annoying song and clickety clackety people. LOL!
So waving at all cruise tourists from now on - and hoping they'll send the wave back to ya!
but the hair loss... well, less funny... so far that has not been noticeable and hopefully, I can dodge that bullet ... but only 13 and think you're about 20 ahead of me...
You've been a pleasure to me and it appears everyone on this forum.. thanks so much for "just being" ... a great person to be around when we have to go through this cra p.... later.. the very very best to you!!! ;)
You sound very organized. Too bad it's not an Alaskan cruise, you could wave to Meki.
It'a hi ho for me too, just have been up most the night worrying. I do it so well. I'm thinking of becoming a pro at worry and charging for my services. Anyhthing you need me to worry about for you? First 3 months subscription are complimentary as you are a fellow forum member.
Although I've been using pegasys and thier program, I think they're similar. I was surprised at how they foucs almost exclusively on income not assests.
A good liver clinic can often get meds for you. Mine has supplied all my neupogen, for free. In fact, I now have 3 boxes, that's 30 syringes of 300mg neupogen that I'd love to give to someone once I stop tx ( July 12) rather than toss this expensive stuff. If anyone wants to talk to me about this, please e-mail me @ afront2day at yahoodotcom And yes, I've been in touch with ladybug.
Meki: You sound fun! Yes, Kevin Bacon. Did I tell you he's related to my husband's third cousin by mariage? I live in a relatively small town, Not relative to a small town in Aslaska by any means, but small for the great state of TX with it's large metroplexes like Dallas, Houston and San Antonio. Whe we do go out to the big city, we see more people from home than while we're in town.
And thanks, my little brain will be humming 'It's a small world after all' all night.
Fullofhope: Thank you so much for replying! Seriously, I was thinking about posting another "Am I paranoid or are you two ignoring me?" question! You are so sweet and thoughtful.
I am sooo needy. I'm not as pathetic as I sound at times, just have an Ellen type personality. One minute I'm having fun and the next I'm wodering if I said something wrong. Constantly pullling my foot out of my mouth too!
Ladybug, even though I may run out of things to say and my mind occassionaly strays, I do generally continue to read threads until they die. So have no fear, I have followed your treatment progress with interest and will countinue to do so...Funny you mention the possibility of running into posters in the "real" world, I also sometimes wonder the same thing..I tend to stay vague as to my actual location saying I'm from New England. But to let a little personal tidbit out, I live at a fairly large ski area, so there is a very good possibilty I have met internet contacts in person without knowing it. This is especially true when it comes to stock and investment threads I frequent, seems like half of Wall St. is here in my backyard on any given Winter weekend (lol)..Hope your lingering sides begin to abate as the drugs leave your body, thought I read the riba stays with you for about 6 months after discountinuing the drug..hang in there!!!
(who now has to stack all that wood he "chopped")....;^)
And I will also be testing my end of treatment detox theory. In accordance to my "ducks in a row" policy,I already have plans (and reservations in place) for my treatment end.
Last shot will be on Mar 6
Last riba will be on Mar 12
Hop on a plane to FL. March 14
Leave on a 7 day cruise (Caribbean) March 16 (first time on a cruise ship)
Fly back home on Mar 24
I'm calling this the dangling carrot on the end of the string approach!!! (LOL)
Hi ho, hi ho, it's off to work I go..Got bit by a black fly yesterday and found myself chuckling, thinking that black fly was sure in for a surprise when all the drugs in my system got into his!!!
I've never thought of you as flocking, bug... not once; as a matter of fact, I've mentioned to another member off the forum, that you add great balance. My problem is (and perhaps it is all my problem) I don't get more than the top couple of threads started on and then gotta go... so like ladywhy mentioned, she has responded to me a few times.... but I just never got that far down to answer. I do have to say I wish I knew who was on tx and who was off (and how many years they've been off tx - that's scary in itself, that sx would last years out... that's why I've talked to him about shortening tx, since cleared first few weeks), etc... wish there was a chart).... and there is sooooooooo much to read to figure it all out..and sometimes I wonder if folks don't use it more as a chat board and that's fine too... if they're lonely... 'cause doing tx could be lonely if you don't have a spouse or SO or a job... but because I do have all that... kind of hard to see and understand the dynamics here. But I want to know what someone else is going through... I can definitely see what a real support and lifeline this can be for someone homebound most of the time... but I do like to skim the thread titles on other side & will read some if I think it relates to my situation or something I can talk to the doc about. but you two both have been responsive (even with me missing some haha!) ... it is hard to get through many of posts within the threads at time.... but then again, by the time I read the titles... many times it is time to go!! haha ... be well.
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