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An observation 5 years 1 month ago #9842

  • oldie
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Hi everyone,

thanks for your messages; :)

i cant type much had carpel tunnel surgery on friday, only one hand.
appreciate the info.

I am going to see another oral spec. 16/2 re the bleeding tongue.

be back in a bit, when pain settles.

cheers
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 5 years 1 month ago #10247

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Thanks for your advice DT,

however I do not have any of the latest technology; my PC is 10 years old, still running windows xp; so browser is now unable to access many sites and I do not have, Skype, a printer, a scanner, or even a camera!

I am on disability pension and hubby hasn't worked for over 2 years, (no fault of his own), he would dearly love to be working; we have both worked since we were 14 years old, in fact I also left home at the same age and have looked after myself ever since. My story is one of poverty as a child, and then I went on to make my own mistakes, despite working so long, we have NOTHING! We rent our little unit, drive a 1998 car in dire need of attention and often have nothing to eat by the end of each fortnight. We live hand to mouth.
Enough said.
Needless to say, we are not, and will not be in a position to update our computer etc.
So I continue to try and research info. myself as much as I can, but I'm not a medico and don't believe in self diagnosis.

I just thought someone here might have heard of it and know something; sure didn't mean for the "Doc" here to help me out, just asking in general. I have visited the "experts corner" etc, I'm not lazy, far from it. If I hadn't followed up my own health re: Hep C, I'd be still "waiting"....well, I am still waiting actually, for Harvoni, due here Mid March.

Thanks for trying to help,
Cheers :)
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 5 years 1 month ago #10250

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Hi London Girl,

thanks for your input; Ditto here in Australia, re: Doctors just looking after "their" bit and no communication with other Doctors you are seeing etc; gives me the shits!

I don't think many of them know the meaning of the word "holistic"; when I can save a few dollars I am going to see a N.T., have done in the past and found them very helpful,.
Just don't have money right now; very grim on that front!

None seem interested in post tx follow up either, fail or cure, there are many side issues. :sick:

Then there's the fact we are getting on, us "Baby Boomers", as you so rightly said, hopefully all the crap we've been through will help many in the future.
Another reason Doctors should listen to us, we just might have some valuable insight to help others, after all, we are the ones that have experienced tx, sx, etc.

Good luck to you and I hope to chat with you more.
Cheers #love Oldie

Thanks again for your message, here's wishing you all the very best!
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 5 years 1 month ago #10252

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#flower Oh, how refreshing to hear someone else say exactly my thoughts, YES, tell it as it is, no sugar coating! :cheer:
I said it on another forum and was howled down for it. FFS. :ohmy:
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 5 years 1 month ago #10267

  • LondonGirl
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Hey Oldie, No problem and I also hear you re financial considerations. It's a tricky one re some Drs - State healthcare is so full of bureaucracy and Private healthcare are out for your money ! This is why I believe in thoroughly researching as much as possible before seeking advise. Some consultants in my experience are just happy to feed you a few rehearsed lines; have your questions at the ready, I take my (becoming rather infamous !) Large blue A4 note-pad to every Drs appointment , keep notes and records of all blood tests etc happily, I made the decision not to put up with this and that my consultant was not offering appropriate duty of care , so I changed. My new consultant is fantastic and so much stress has been removed from my life as a benefit.
Another reason Doctors should listen to us, we just might have some valuable insight to help others, after all, we are the ones that have experienced tx, sx, etc.
Couldn't agree more Oldie, I recently read about this official (and no doubt expensive) conference where they were discussing 'How to improve patient care' - Some bright spark came up with the idea that maybe they should 'Put patients at the center of their care' and 'Listen to patients more' - No shit Sherlock ! :idea:

You can read my recent story if you feel inclined, here : fixhepc.com/forum/patient-stories/544-in...kes-new-friends.html You are most welcome there :)
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 5 years 1 month ago by LondonGirl. Reason: typos etc
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An observation 5 years 1 month ago #10272

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For the technically challenged -

Find a friendly young person to do it for you.
Where there's a will, there's a way.

dt
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