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TOPIC: cirrhosis

cirrhosis 2 years 11 months ago #21066

  • PKQ
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Back in 2014 I had a biopsy that showed I had cirrhosis. Since then I've had 6 months of generic Harvoni. I have now reached EOT+24 and to celebrate this milestone, my GP gave my a bunch of blood tests and an ultrasound. These show I am now perfectly healthy. All tests are normal, right across the board, except for a little roughness on the surface of the liver. In fact, my condition has improved since I reached SVR12.

When I asked the GP what happened to the cirrhosis, he just laughed at me and said "There is no way you could get results like that if you had cirrhosis. Forget it."

I find this somewhat surprising. I thought once you had cirrhosis, you had it till death do you part.

For a fact, the great big specialist who committed the biopsy on me back in 2014 is actually a liver transplant surgeon in his day job. When he said "You've got cirrhosis and you're going to die", my first thought was "This guy is stretching the truth just a trifle to drum up business for his firm". Coincidentally, that was also my second thought. I did not actually debate this concept with him, on the principle that it is unwise to sling shit at someone who may someday have his knife in your belly. However it seems he was confident enough to sign me up on some kind of transplant waiting list without telling me. (He's a proponent of the Mushroom Principle of treating patients.)

So this leaves me in a quandary. Plainly the presence or absence of cirrhosis is going to impact my chosen lifestyle. I would like to get some sort of measurement of my fibrosis/cirrhosis. A few months ago the GP tried to book me in for a Fibroscan, but it turns out that out here in the bush, waiting times for a Fibroscan are measured in years.

Any suggestions on where I go from here?
GT 1a
cirrhosis (or not, take your pick)
2015 - failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem's sofosbuvir+ledipasvir
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cirrhosis 2 years 11 months ago #21068

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It does seem both that the surgeon exaggerated and that the zero fibrosis result is doubtful ... so yes you want to know. Don't know how soon you need to know though, that's up to your personal comfort level, and only you can answer that.

I'm guessing by your use of "bush" that you're in Australia and likely somewhere west.

Also, I don't know your financial position, but ...

A fibroscan shouldn't be too terribly much money to self-pay. However, if the prices are high there and you have money to travel ...

I got two consultations with a doctor, an ultrasound and a fibroscan ... (along with a transfer-van ride to/from my hotel) ... at Vejthani Hospital in Bangkok for less than US$250 and within 24 hours of landing .... (on a Saturday and without an appointment before landing) ... total process at the hospital took about 4-5 hours, and answers were immediate and in clear English.

Bumrungrad Hospital is the bigger, more famous medical tourism hospital there and someone else on the forum has used Samitivej Hospital. Prices should be roughly the same, maybe more at Bumrungrad. There are several more there you could search for, but here are three links.

www.vejthani.com/index.php
www.bumrungrad.com/
www.samitivejhospitals.com/sukhumvit/

Google flights says you can leave from Perth on the 2nd, round trip for US$227 .... or from Sydney for US$309. Check google... (be aware the discounters land at the older airport in BKK and the layover in KL might be longer too.)

If you're willing to walk a few blocks away from the skytrain, 3 star hotels can be had in the US$22-29 /day range. Farther from mass transit is less, but harder to get around ... stay within a few blocks of the skytrain. Easiest to get around would be to stay near Sukhumvit Road. (It's where all the giant, brand new malls are too.) Use an online booking company that has maps (Hotels.com) and look in the Asoke or Phrom Phong areas.

And who knows ... a few days eating Thai food might be good for your liver! :P
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cirrhosis 2 years 11 months ago #21069

Hi PKQ I had a Fibroscan done at the Royal Melbourne Hospital. Wait time wasn't too long at all. Your Specialist should be able to give you a referral. In saying that, I'm not sure where you live but as Klhide has said it sounds like your in Australia somewhere. Glad to hear that you are cured. I hope you get your answers sooner rather than later. :)

Cheers
Lynne
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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cirrhosis 2 years 11 months ago #21070

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RPA in Sydney are good too if you are anywhere near there. Don't know how long a wait for new patients but I do know that back in March when the DAAs came onto the PBS they were crazy busy (I imagine their job satisfaction levels would be pretty high right now)

Bangkok - just over a year ago I booked a room overnight in the Sinsuvarn Airport Suites hotel for $30 approx. Own room with own bathroom, (noisy) air cond, comfortable bed the size of a small suburb, complimentary airport shuttle, no complaints
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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cirrhosis 2 years 11 months ago #21074

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Hi PKQ,

A biopsy is the definitive diagnosis for cirrhosis, at least for the area they took the sample from so if the surgeon stated he found it then the only argument is over what is going to happen next and it sounds like he has lost that bet. The good news is that the liver is an amazing organ and in many but not all cases once the cause of the cirrhosis is removed the liver is able to regenerate. The extent of regeneration will vary from person to person depending on any number of factors such as diet, lifestyle, your genetics and how bad and widespread the original scarring. When that occurs it should be possible to live a reasonably normal, healthy lifestyle afterwards.

But you need an answer as to what condition your liver is in now. The surgeon who diagnosed your cirrhosis put you on a liver transplant list so that is your first port of call. The lists are far too long for the number of available livers so if he can safely take you off that list he will be absolutely delighted to do so even if his previous bedside manner seemed like a used car salesman trying to make end of month targets :dry: and he shouldn't need another biopsy to do that.

Failing that, as the others said Fibroscans are available even in some regional centres these days though you will probably need to book ahead by a couple of months. The bush is a big place so if you can give us a better idea of which bit someone here may be able to suggest a suitable option. :)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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cirrhosis 2 years 11 months ago #21077

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Hi folks, thanks for your interest.

You've given me some things to think about. As a self funded retiree, I have enough income to support a modest lifestyle. Rapidly becoming more modest thanks to the economic policies of Howard/Abbot/Hockey. But not Turnbull, whose only policy seems to be to try to look beautiful and make everybody love him. However I don't think I can manage a trip to Bangkok. I can just imagine the conversation with the dear little wife:

"So long, dear, I'm just off for a week in the sex capital of the world"
"Oh, that's nice, dear, have a nice time."
yes

On the other hand, the dear little wife has friends in India she visits on occasion. From where we live in the quaint medieval town of Adelaide, there's not that much difference in air fares to either Bangkok or India, plus the Indian friends lend her a granny flat to stay in when she visits, plus the friends have already said they're happy to help me source medication or whatever. So, yeah, a trip to an Indian clinic seems a definite possibility, and probably easier than trying to handle waiting lists and referrals to try to go to an interstate clinic in Australia.

I'm not that keen on visiting India. The only time I've been there, I found it dirty, smelly and packed full of people, most of whom seemed to be trying to put their hands in my pockets. But maybe I'll give it a second try.

Thanks for your suggestions folks.
GT 1a
cirrhosis (or not, take your pick)
2015 - failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem's sofosbuvir+ledipasvir
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cirrhosis 2 years 11 months ago #21083

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Hi PKQ
Can GP2U help you?
Fingers crossed. I went to India 4 years ago and while it's a complex place and full of mystery it' can be tough for Western visitors.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
Last Edit: 2 years 11 months ago by beaches. Reason: typo
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cirrhosis 2 years 11 months ago #21084

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Hi Gaj, you make valid points there and by and large, I agree with you, but bear in mind this surgeon is not such a guy as inspires confidence.

So when he gave me the results, he started by saying the biopsy showed fibrosis and not cirrhosis. Then he went on to say that you really need a dozen biopsys and take the average to get a good result, after that he said he thought I had cirrhosis anyway so that was what he was going to diagnose, and then he went on about "You must start interferon therapy immediately or you will die". He didn't give me any reason why he'd decided to diagnose cirrhosis, and he refused point blank to give me a copy of the biopsy report, but every medical report he has sent to my GP since then has simply stated cirrhosis, without any mention that that was not what he actually observed.

You see why I'm a trifle sceptical about this diagnosis, particularly when it's flatly contradicted by another doctor.

Still it looks like I may have some options for a third opinion!
GT 1a
cirrhosis (or not, take your pick)
2015 - failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem's sofosbuvir+ledipasvir
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cirrhosis 2 years 11 months ago #21093

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"So long, dear, I'm just off for a week in the sex capital of the world"
:evil:
:whistle:

Okay, seriously, yes I'm completely aware of that tired characterization of the world's third most visited city, after London and New York. I guess the combination of my being single and being Rational Temperament enables me to be fairly easily dismissive of the judgement of others .... basically fuck-um ... if that's the limited depth of their thought process, what do I care what they think?

However, you're married, so the perception matters.
Easy solution, costing maybe 60% more .... take her along. It's an amazing city.

And mark my words .... the next Asian Tiger will not be Indonesia, Malaysia or the Philippines. The next Asian Tiger will be Thailand. Get there before they get rich ... these rock bottom Medical Tourism prices will not hold forever.

Warning: Spoiler! [ Click to expand ]


Anyway, the hospitals in Thailand have highly trained doctors, (mostly fluent in English,) with spacious, comfortable and nicely decorated waiting rooms, the latest medical equipment, and an over-abundance of staff in their perfectly pressed uniforms with hardly a hair out of place and a professional, courteous, even friendly attitude, (ever-ready smile) ... all prepared to make your visit as smooth, fast, efficient and painless as possible.

They put most American hospitals to shame.

Compare that with Greg Jefferys' description of his experience in Chennai.

Yes, there is still poverty there, with (small numbers of) the expected touts, beggars and occasional corrupt cop ... and yes, if you go looking for them there are plenty of women available too. Just don't go to those areas and you'll be fine.
Last Edit: 2 years 11 months ago by klhilde.
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cirrhosis 2 years 11 months ago #21098

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PKQ wrote:

..... and then he went on about "You must start interferon therapy immediately or you will die". He didn't give me any reason why he'd decided ....."

"You see why I'm a trifle sceptical about this diagnosis, particularly when it's flatly contradicted by another doctor."

!


PKQ hi there you and I have different stories but that bit is the same.

And I was F0 but he never bothered to test me first just pumped me full of that stuff I am now very deaf from. Etc.
I heard the exact words you quoted. It nearly killed me the old tx not HCV. I feel your frustration fully.

I'm almost broke too now. Hanging onto my farmlet. No career because of the pain and deafness.
Sending you a hopeful vibe anyway from here, I have other friends in SA who are not getting support either
Cheers
A
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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cirrhosis 2 years 11 months ago #21109

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Khilde, you make a powerful case. I've always associated Thailand's medical industry with cosmetic surgery and the like, I didn't realise it was more extensive. Either way, I'd like to say thank you to you for putting me on the right path. I didn't think about travelling overseas for treatment, even though that was my first thought when I was diagnosed and found I couldn't get treatment in Australia. So, thank you.

Ariel, some doctors seem to have an unhealthy affection for interferon therapy. I get the distinct impression some of them have the idea that "hepatitis c" = "depraved dope fiend" and they conciously or unconciously see it as their duty to make the sinner repent, rather than simply treating them.
GT 1a
cirrhosis (or not, take your pick)
2015 - failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem's sofosbuvir+ledipasvir
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cirrhosis 2 years 11 months ago #21110

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PKQ wrote:
Ariel, some doctors seem to have an unhealthy affection for interferon therapy. I get the distinct impression some of them have the idea that "hepatitis c" = "depraved dope fiend" and they conciously or unconciously see it as their duty to make the sinner repent, rather than simply treating them.

You are so right PKQ, and dog help you if you have any pain condition and you ask for pain relief. It's almost worth doing, just to observe the reaction :P :lol:
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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cirrhosis 2 years 11 months ago #21111

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You nailed it PKQ
I agree with that attitude in regards to the person who decided that he would pop me into that unnecessary hell. He's a charmer, not! :-1: :sick:

Yes Beaches how dare anyone be needing pain relief I have a script it saves me from the new interrogation by someone young enough to be my child regarding the details of the pain and associated questions which are ridiculous! Lucky my GP is understanding with that one: the pharmacies are crazy!!
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 2 years 11 months ago by Ariel.
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