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Author Topic: Is it October 10th YET  (Read 14229 times)

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Offline Surf Till U Die

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  • Posts: 17
Is it October 10th YET
« on: September 30, 2014, 09:24:57 pm »
      Is there anybody else Like me.  I made the decision to go forward with the  Rib/Sov/Peg 12 week. That was in early Aug. On a surf trip in Costa Rica was getting tired often so I told my  family it was time to give it a go again. 2 Pryor treatment one in 2001 48 weeks Peg/Rib had to drop rib after 3 month sever rash head to feet. Finish peg only to  relapse at six month  check. Then another go at this  disease that has me by the tail2003 in. Same peg/rib but only one injection per week. My Doc at the time had me on 1400 mg rib one month in was dry heaving  for 12 hr at time no more rib just interferon for rest of 48 weeks. Relapse at six month check was neg at end of both treatments.
     Call my amazing Doc at Mayo Clinic  FL she's the best. I go to my appointment  all ready to go to battle with this dam curse again. I tell her I will fight my way through 12 weeks dry heaves and all on the Rib/Sov/Peg. S
he says that would be fine but I should wait till Oct.  for the new treatments with little to no side effects.  So now I wait till  some time in Late Oct or longer.  That's when I found this site and what a great place!!!
   Then I start reading about how insurance company's are rejecting people all the time that are a lot more compromised than me. Stage 2 with some bridges in 2011 My blood work is better than 2 years ago.
   I bet that anybody that are higher up or family members in Blue Cross/ Blue Shield  that has HepC no matter how compromised they are L 0/L 1 get approval. Ditto congress and drug company's. Also those advisor boards don't have 50%+ members infected with HepC  Like the VA-/ California Medicare/
   I am in AA have not drink in over 25 years and just like in AA only Other People that have HepC or have had HepC truly know the weight that hangs over our heads. Every time I start to bleed I start telling  people get away from me. And the worry always in the back of my mind have I infected my family members or friends those around me the most. 

     So I will say it again is it October 10th YET.  I will surf till I die

    PS I have a Bucket list trip planed with my wife my 2 daughters and son-in-law to the  Galapagos Islands to Surf/Dive and sight seeing and me HepC free I pray

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Is it October 10th YET
« Reply #1 on: September 30, 2014, 11:18:53 pm »
Have fun brother and enjoy your Surf til ya die, never tried surfing ( well i tried on lake Ontario when waves were huge on a piece of Styrofoam which was the bottom of a sailboat. I dont think that counts but i use to use it too for fishing. I would 1 paddle out and had a milk jug full of cement for an anchor, rope with a cooler and caught one of my biggest bass on that baby,sun would go down,i pulled anchor,laid back and drifted in,dam that was fun) the simple life,, " just" Willie g living "simple minded" these days

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Is it October 10th YET
« Reply #2 on: October 01, 2014, 12:09:30 am »
Beautifully stated Surf. You summed up my deepest concern right now. However, you have one thing (in addition to 25 years of sobriety) going for you that makes me less concerned about your situation - you have a good doctor at an established medical center. I bet they know how to code your case so you get the meds. Let me know if I am right.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mike

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  • Posts: 999
Re: Is it October 10th YET
« Reply #3 on: October 01, 2014, 10:39:13 am »
Hi Surf,

Since you have failed interferon-based treatment 2 times and there has been some progression in the liver disease, you should have a great shot at the new RIBV/INTFR free treatment that is coming out this month.

One caveat:  this is open enrollment month for insurance policies. I would recommend that you have your coverage in place for next year (insurance policies run from Jan 1 - Dec 30 of each year and are declared/changed before Nov 1st). Due to the cost of these new treatment, the insurance company will want to take a good look at the total cost to them for the treatment. If you change to another insurance company on Jan 1st, your current insurer will most likely delay or deny approval and put the cost on the new carrier.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Surf Till U Die

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  • Posts: 17
Re: Is it October 10th YET
« Reply #4 on: October 01, 2014, 04:21:44 pm »
  Thanks Mike I have a weird Insurance time frame mine doesn't run out till March 31st. I will check with my provider to make sure. I switch from employer to personal coverage. Was not planning on changing. Thanks for heads up
     Lucinda you absolutely  right on my medical team. When I was getting the new ultrasound test for how (playable) my  liver was.  Not sure how to describe test they put a ultrasound between my ribs and it thumped like ten times. My Nurse Practitioner  (NP) said it could see how soft my liver was. She (NP) runs the HepC  treatment program with my doctor. I ask her about insurance denials. Her reply was she has letters all ready she just has to put insurance company name and my name and info in. She has been dealing with the insurance company for some time and knows just to what to say and the codes.  This should make you smile. Quote  "Her goaled is to have every person who has Hep C  CURED "  and she meant soon not 10 years from now. I wish everybody could have people like My Doc and her support staff. There only mission is to heal the sick with respect and care. Not like some Dr that look a me and think  HepC   are  low life drunks and drug addicts I have had a couple over the years. 
    Willie G I hear you   we all need to have some fun, something to live for and to fight for. My family taught me when I was growing don't ever give up. For when I do I am done. So now days my children are always pushing me to have fun ,laugh, and don't quit.   I also remember using the old milk jug with sand/concrete as anchor in the river in back my house. They were some nice day to day dream
       Lucinda Don't know should start new topic ? I live in south Florida and with  Chikungunya virus also Dengue fever and having HepC  if these would cause more damage to my liver I also go to Central America.   

          God bless Hope there surf tomorrow John

       

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Is it October 10th YET
« Reply #5 on: October 01, 2014, 04:39:41 pm »
Thanks for the info Surf - I sure like your nurse!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mike

  • Member
  • Posts: 999
Re: Is it October 10th YET
« Reply #6 on: October 01, 2014, 05:11:13 pm »
Hi John,

Make sure and double check with your insurer regarding when the policy ends and the new year starts.

My experience is with Ohio, which runs the same schedule as the federal insurance exchanges (Jan 1st thru Dec 30th, with changes in policy or carrier  declared in Oct and locked in on Nov 1st). A large number of states follow this same schedule.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Is it October 10th YET
« Reply #7 on: October 01, 2014, 08:38:28 pm »
MAKE IT 26 YEARS SUFER  one day at a time,, I know bill w too  great guy, can you imagine taking BILL andBOB on a surfing trip back then lol  ''just ''willie g

Offline Surf Till U Die

  • Member
  • Posts: 17
Re: Is it October 10th YET
« Reply #8 on: October 02, 2014, 04:49:22 pm »
   Mike thanks for heads up. I call my insurance provider she said yes I will be getting a letter from BCBS FL that my plan is still a go for next year. Get letter next day or two just wondering how much they will jack up the rates. Will stay on plan till I am cured. so I hope to be able to get started late October or first half November the good Lord willing.
    Hey Willie G if you ever come to east coast Florida near Vero Beach or Melbourne. I will you take to some meetings and show you around.
   Lucinda I want to say thanks to you and all who started this site
               Surfer John

Offline Mike

  • Member
  • Posts: 999
Re: Is it October 10th YET
« Reply #9 on: October 02, 2014, 05:13:10 pm »
Hi Surfer John,

My rates went up 10% from last year.

Any rate increases in premiums will be contingent on how well the insurer predicted costs during the first year of Obamacare.

Specifically, insurers we're asked (actually mandated) to predict cost increases  regarding "how covering those with preexisting conditions" will impact  overall expenditures (monies paid out) of the insurance company. This was done  without any data.

Since the insure cannot charge higher premiums to those with preexisting conditions, the increased costs (which were predicted) were spread across the entire pool (all those covered by the insurer).

If the insurer did a good job predicting the cost, and spreading the cost across the entire pool, premiums wont necessarily rise.

If the insurer did not do a good job predicting the increased costs of covering preexisting conditions (and spreading the cost across the entire pool), premiums will rise.

Insurers now have a years worth of data to review and will adjust premiums accordingly.

Medical Mutual (my insurer) did a pretty good job predicting future costs from last year and premium costs only rose 10% across the pool. This wont be the case with other insurers.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Surf Till U Die

  • Member
  • Posts: 17
Re: Is it October 10th YET
« Reply #10 on: October 05, 2014, 12:35:38 pm »
      Mike just went to BCBS FL my plan is going up 19% next year. There is no way that I will drop this plan over a 188$ increase per month. I can look at other plans after I slay the Dragon. The one benefit that the new health plans is with preexisting condition. Last year I was able to drop plan that was costing me way more at employer an had to stay on because of preexisting condition and  better Plan cheaper.   

   No surf today maybe tomorrow   John 

Offline Mike

  • Member
  • Posts: 999
Re: Is it October 10th YET
« Reply #11 on: October 05, 2014, 02:08:10 pm »
Good deal. I'm doing the same thing. My insurance went up 10%; but it is gold plan and there is nothing on the exchanges that come close to the benefits. I may, however, increase my deductible from $1000.00 to $2000.00, which will reduce the cost 10-20%.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Surf Till U Die

  • Member
  • Posts: 17
Re: Is it October 10th YET
« Reply #12 on: October 09, 2014, 08:37:35 am »
     Just got a call from my treatment  team at Mayo clinic FL. They said to expect a call in a couple weeks to get me started on  Harvon.  It will take a couple weeks to get insurance/protocol approval set up (Woo Hoo )   :)  We talk about my blood test was not complete needed  to get new viral load ect ect. Said I could get that done here in stead driving 3hr to clinic. After reading here the inaccurate test at some local places I said I would get it done there. Gives me a reason to see my Daughter who lives 10 miles from clinic in Jacksonville.  ;)
    God is giving me a good lesson in patience, one day at a time. I have lived with this curse for 15 years when I was first diagnosed with hepc , was infected 30+years ago. So  what's  a couple more weeks?           
                             BUT BUT Here it cones!!!

                               IS IT OCTOBER 10th Yet???

                        No waves today maybe tomorrow  John

                          PS it helps just putting this in writing


         

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Is it October 10th YET
« Reply #13 on: October 09, 2014, 10:56:45 am »
Wow - so happy for this Surf! I feeling like singing "Tomorrow" from Annie.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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