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Post Info TOPIC: Finally
Brian1412


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RE: Finally
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 I am just concerned about the time between visits so far. I mean really, my Dr doesn't know I have he results of the  test/type yet, and I would have to wait until what I found out to be my next appointment Nov 27 .. The facility allows lab /test results to be retrieved by  private account. 

 

Waking up this morning  with the level 8 pain in the liver zone  freaked me out. I have never had that before, and unless it was my gall bladder it is concerning to me. My memory adds to my concern . It is something new. 

So, it works out that to just get to the  Dr to get the order for load, and type, to my next appointment is about 8 months . If I can get her to write the orders, with a monthly  appointment with her, I would feel much better . 

 

I am approved to have  everything I need, but I am afraid that the  grant will run out before I even get to the point  of  getting on the train.. I want to stabilize, and get going  to the meds..  I am looking at options for the scan. 

Appreciate the listening and info..  I am going to need you to get thru this system. 



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Isiscat2011


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Hi Duane:

They have so many views of your liver they could probably draw it from memory!  I could do Fibroscans all day because they are totally non-invasive. If your health care facility has a fibroscan machine you could have had one and didn't even know it because they are like an ultrasound (only faster)! 

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Dzdayscomin


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That is my GI clinic .....funny they've done every flippin other thing to me....not that I need one.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Tig


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I've been trying to track down some additional information on the insurance side of the Fibroscan discussion and it's still being left to the carriers to decide. The patients need some advocacy assistance and I don't think we're going to get much positive help from the insurance companies. 

I did find one Minnesota GE Provider that has provided a CPT code (91299) and charge ($547) for their fibroscan services. So the discussion is developing speed, although slowly. This is just for reference, nothing more. Being associated with the ultrasound business, I can assure you that this price is outrageous for the complexity of the test! But comparatively speaking, the ease and cost savings to biopsy is light years ahead. Further searching I found an Atlanta lab that is offering the Fibroscan alone for $249 and with a routine liver ultrasound the price is $349. That's more reasonable and they will bill insurance using the CPT code mentioned. It's good to see progress being made, albeit slowly, but it's gaining ground...

http://www.mngastro.com/sites/default/files/Price%20Quote%20FibroScan-14.pdf

http://fibroscan502touch.com/reimbursement

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Isiscat2011


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Brian1412 wrote:

 Is there a private way to get a fibroscan? 

 

Hi Brian:

I don't know if most Insurance Companies are even paying for Fibroscans yet.  My last one was in June and doc said insurance still had not included them even though they were FDA approved in April of 2013.  Go figure.  

Anyway, yes you can pay privately and they cost around $300-$350 USD.  Here is a list of facilities that do them:

http://www.fibroscan502touch.com/find-a-facility



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Brian1412


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Yes, the Dr is excellent, but I am finding out that the " office/clinic" is very disorganized.. I finally got my g-type and levels,  so I have not had the opportunity to discuss them.  Thanfully, everyone   was able to get me up to speed.  It seems this is the way this will goas I don't see them reorganized any time soon. 

It was suggested I get biopsy/Fibro . I found out  today that my next appointment is not until  Nov 27 ( which I think is bunk because of the Holidays)... I guess my question is  this type of appointment " spread"   normal, or acceptable? 

I woke up this morning with pronounced pain  under my ribcage and in my back near kidneys.  First time with that.  I also noticed  that I have been having issues with memory.  I start a thought,  then I can't remember the subject.  This is something new to me. 

So  I guess I will have to get in touch with her  and get this stuff scheduled asap.  There is no problem with the resources of the Facility, it is excellent, but they have a history of letting people  in  the clinic " slide off the radar "  

it's  going to be my battle  .     Is there a private way to get a fibroscan? 

 

Thanks,

Brian 



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RMLARRYM


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Hi Brian,
Having a good Dr. that you respect and talk with is soooo important. I am luck to have one too. He is and infectious disease specials and is amazing. Gives me a hug when he comes into the room and spends as much time as he needs.have been in his office for an hour before..so take advantage
Good to know about the Pomegranate. Sounds like you are eating well and have plenty of energy..glad to hear that
Welcome to the forum. I am new also.
Larry


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Brian1412


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OK,  I have the lab report

HCV log 10- 7,37  Hep C Geno   1 a with I think it is RT? after the geno type    so 1 a rt.. I have a whole page of results for the blood test, so I don't know what else to include.  Let me know and I will post everything. I don't have a scanner

I guess I got the jack pot.  1a is the most difficult to treat?



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Brian1412


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Yes,  it could have been much worse.. almost was but she remembered me when I first presented at the ER, and she was able to close the ulcers etc as I had to leave the next day on Tour . She was amazed I made the whole tour..  So she decided to take me as a patient and got me the grant . Phew ! She has connection for the treatments also. The only downside is her case load  but I'll take it.

 

 

The difficulty for me has been my past heavy health issue of Testicular Cancer in which everything  is  Must happen now ! But I am adjusting to "see you in a month "   I am going to go try to get my  blood tests so I can post .  I am one who needs to know the big picture so I can still have some sort  plan to hold life together ..  Hopefully they will give them to me. 

 

 



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Tig


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Hey Rob,

Glad to hear it Brother! Nothing should make you feel better than an excellent doctor, the new drug protocols and a grant!! WOOT!!! Keep us informed, sounds like you're on your way to a hep free life! Good luck...

Tig

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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lilbit


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Awesome. It sounds like it is coming together for you. Hang tough.

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64 yo Diagnosed in 1991 with Hep C, Genotype 1a, VL close to 16,000,000, Tx Abbvie Topaz II 9/5/14, Wk 2 and 4 und. End of treatment 11/27/14 undetected.  EOT+4 und  EOT+12 und.  EOT+24 und CURED, EOT +52 now I feel really cured.
Brian1412


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Well, it took some time, but I now have a very good Dr, I did my  type, Viral  load  etc last week and I will have the results next appointment Nov 7..( I will get them from records before that ) 

 

 

 

 

My Dr is a highly regarded  Gastro, and I like her. she is the one that fixed my bleeding ulcers. 

 

At least with her,  I don't have to go out of State  and I can work. She  doesn't seem to be  overly concerned about anything so I will go with that . Also, with her, I am covered by  a grant thru the whole process,  meds and all as needed   which is a huge relief. Cancer wiped me out with that whole deal and my private insurance options not so good 

I feell ok, most of the time, and I am not at any sense of a normal energy  range,  but I do get a lot of exercise, and I am eating right. I found a fig newton will set off the pain in the liver, so I really just stick to no fat,  chicken breast veggies.  I am drinking alot of Pomegranate as she told me it is good  for Hep c Liver .  Taste good so I am with it. 

 

I do sometimes have pain in my side ,and I sometimes feel in a fog, but others  I feel great.

 

I have come to terms with all this, and I am sure I will need to  ask a lot of questions, but hopefully,  cure has begun. That is a huge relief for me. 

 

I am going to get my results today

 

Hanging in there

 



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