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Post Info TOPIC: !8 months post tx


Senior Member

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RE: !8 months post tx
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MaxiePoo3 wrote:

Hello Paul B,

This is Max. Cuddy and I are very new to site. I as well am very glad to hear you are doing well. reading your signature says it all.
I have a question for you if you please. In regard to your mental function. Cuddy has been struggling with poor concentration, memory poor, irritability, loss of flow in conversation. Brain fog. Forgetfull. Its pretty bad. Doctors have recommended phsyc. therapy.
His ability to remain employed has suffered terribly. At 48 yrs old, this is tough, no where near retirement. He has exhaustd unemployment benefits, his employer laid him off kindly enough. He picked up odd jobs here and there, as well as he could. We are told No way SS would consider. He is on Epclusa, 5th week in. Dr. did give him temporary disability while on treatment.
What is your thought on this Brain Fog getting better with successful treatment. I have read some things saying it comes with the disease progression, some that its the treatment. Some a combo of the 2.
He is in the construction field, so between severe fatigue, and mental capacity issues, I believe its unsafe for him to continue in this. Matter of fact, I know it. I cant imagine him on a site some days tho fog is so bad.
It was off and on for at least 15 years, he was able to come out of it. This last 2 years before treatment , he has been unable to come out of it for any extended period of time...
Any thoughts on this is appreciated. Temporary Disability is 3 months at best. After that we are a bit in trouble with lifes expenses.


 Hey all

well that just sounds super tough. I'm glad I'm not in that position.  Well, in as much as I paid for my house and don't have debt.  So moving forward, I am relying on fortnightly income from the govt.  But it is quite different here in OZ.  If you qualify for a benefit there is no real time frame for its expiration. For me, I am quite happy to live the life of an early retiree.  
Regarding the brain fog and general mental malaise, well, I am struggling a bit with that.  A lot actually.  So much so that it is difficult to think through an answer to your question that would be of any use.  But in saying that, I think that in itself would give you a bit of an idea of where my head is at.
Hi to all and nice to see you are all still active and helping the newbies. Pity Melani is not about.  But he did contribute a lot over a long period & he is no doubt filling his time doing the things he enjoys !!
Those new drugs sound like the go eh!!  The previous protocols were just crazy tough.



__________________

57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

Tig


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Hey Max,

I don't want to hijack Paul's thread, so I'll send you some info on HCV and disability in another message.



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Member

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Hello Paul B,

This is Max. Cuddy and I are very new to site. I as well am very glad to hear you are doing well. reading your signature says it all.
I have a question for you if you please. In regard to your mental function. Cuddy has been struggling with poor concentration, memory poor, irritability, loss of flow in conversation. Brain fog. Forgetfull. Its pretty bad. Doctors have recommended phsyc. therapy.
His ability to remain employed has suffered terribly. At 48 yrs old, this is tough, no where near retirement. He has exhaustd unemployment benefits, his employer laid him off kindly enough. He picked up odd jobs here and there, as well as he could. We are told No way SS would consider. He is on Epclusa, 5th week in. Dr. did give him temporary disability while on treatment.
What is your thought on this Brain Fog getting better with successful treatment. I have read some things saying it comes with the disease progression, some that its the treatment. Some a combo of the 2.
He is in the construction field, so between severe fatigue, and mental capacity issues, I believe its unsafe for him to continue in this. Matter of fact, I know it. I cant imagine him on a site some days tho fog is so bad.
It was off and on for at least 15 years, he was able to come out of it. This last 2 years before treatment , he has been unable to come out of it for any extended period of time...
Any thoughts on this is appreciated. Temporary Disability is 3 months at best. After that we are a bit in trouble with lifes expenses.


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9/29/16 Alt 123, Ast 62, Bili. 0.6, Alpha 2, Fibrosis score F3 many, Necroinflamation 0.76


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Hi Paul,

I am glad to meet you here, and congratulations on your hard won UND and lovely ALT, 18 months after that triple! 

What a long sprint you have had to tough out to get to the finish line. Very admirable, the fortitude you must have mustered. But as we can see, like your cycling discipline, you got yourself through all this time, to the prize. So well deserved. Indeed.

I am so glad to know your story, and hear your words. My only lament is how hard the race has been. I wish you could have had the newer DAA's we are now getting. The pain of winning is still so sweet in the end. There is nothing better than to achieve the goal. 

20,000 km's! O-M-G! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Senior Member

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Hi Paul, This is great news and I'm impressed with your cycling! Triple treatment was a big hill to climb and glad you made it over the top. Thanks for the update and wish you the best for next year!

__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"

Tig


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Hi Paul,

That's a great update, mate! Let me tell you, you're not alone in that loss of mental function. There are days (weeks) when I can't remember the guy in the mirror! It isn't as severe as it was and I hope you'll similarly gain some clarity sooner than later! I'm having a few of those moments Jill so accurately described as "Senior". I silently tell myself, "smile and deflect" when I forget what I want to say or forget what I'm doing. 

I was on the same treatment you were prescribed, just 28 weeks though. It was a rough 7 months for me and has had lasting effects. You did 5 more months! It took me quite awhile to recover, more than the 18 months you are currently at. Give yourself time and keep telling yourself that you did it! It'll work out..

Good luck with your cycling. How many times have you rode around Oz (figuratively of course)! I couldn't do the 25%, so I think you'll still go down in the cyclers record book! Just keep enjoying life and going for the Gold!



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Guru

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Hello Paul, how good to hear from you!   smile

Your ALT of 27 is fantastic, and it sounds like your energy levels have really increased over the last 18 months going by your cycling target for this year!  Wow, that`s really impressive!  I remember well what an ordeal it was for you to get to the end of your 48 weeks and there were times when I thought you were about to give in... but you were determined to see the job through and I really admired you for that!

I sympathise with the mental slowness and lack of patience, I often have the same difficulties.  `Senior moments` I like to call them!  I think the important thing is that you`re enjoying your life, knowing that you beat the virus and have successfully moved on, that really is something to be very happy about.

Thanks for stopping by with your news, take care of yourself and do keep in touch! 

  

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Well 18 months since I finished 12 months of triple therapy hell.  Had blood done a couple of days back. First time in a year.
ALT is 27.  Happy.
Mental function is pretty poor. Thinking is difficult and I have little patience.  But I'm not complaining.  Back into cycling pretty full on at high intensity.  On target for 20,000 kms for 2016.

Might cut that back by 25% next year as it is pretty demanding for anyone, let alone me at nearly 60.
So all is well. Though I wish I had been able to delay treatment for one of the new drugs.  Happy to be cured all the same.

Hope you are all doing very well.

 

Paul



__________________

57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

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