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TOPIC: Ariel takes the Plunge

Ariel takes the Plunge 5 years 6 months ago #22732

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Hi Ariel,
I haven't logged on for quite a while, but decided to see how everyone's going.
Firstly, glad you're SVR 24 wks. :)

I can relate to how you feel tired & the tinnitus thing, I also suffer from these since my last horrible Interfirin tx,
I'm sure it caused me many post tx symptoms.

Because you had the IFN tx, if you had hep B it probably would have cured it , the tx, as that happened to me.
It's easy to check with a blood test, but I bet you're OK, but for peace of mind maybe best to just check?

The loud screeching in the ears is bad, it got worse since taking my son J to see Black Sabbath!! :ohmy:
But you can kind of get used to it.

I went to a specialist about it & there's no real cure unfortunately, but he did recommend Yoga! also if you can afford it, sometimes special hearing aids can help, as he said it's caused form hearing loss.
Also "white music" when trying to go to sleep helps divert the mind from it, he recommended.

Nobody understands how exhausted I feel most of the time....although my young J IS 16, so a bit of a handful. :blink:
One day I dream of getting out of the City with its noise & stress, & hiding away in a relaxing environment....lush rainforests & beaches come to mind.... :)

But yes, I agree, the IFN tx did leave it's mark on all of us who went through those tx times.

So I understand how you feel Ariel, I really do, it's not fair. That bloody IFN tx was a real bugger.

If it'd help at all, PM me & I'll send you my number , sometimes it helps just to chat to someone else who understands.
I'm just in Sydney so not too far away?

Sending hugs,
Love Cindi x

I
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Ariel takes the Plunge 5 years 6 months ago #22734

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Ariel, Congratulations on SVR 24 sweetie!! :cheer: :+1:


Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 5 years 6 months ago by Greedfighter.
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Ariel takes the Plunge 5 years 6 months ago #22735

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Sucks to hear you have to sell your house. Damn, that really sucks....

Here for you, mermaid.
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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Ariel takes the Plunge 5 years 5 months ago #22777

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"Hello forum
Reporting in after SVR24 etc a while back because I have an important query
Now that's in my past and I have stepped back and re-evaluated my situation after losing my professional career to interferon after the patching up post cure such as $3,500 on teeth that were perfect pre peginf, having all scans and colonoscopy etc blah blah I have realised how much money this has cost me and I am forced to sell my home."

Hi Ariel,

I think it is hard to simply 'move on' after so much stuff having flowed under the bridge during a person's life with HCV. For me I lost a lot, and maybe have more to loose as well in the future. But having said that, in a strange, perverse and circuitous sort of way I ended up with the family I wanted and cherish so dearly.

I found it worse when using DAA's and feeling well again (factoring out old age) and realising what I had missed carrying this virus. No one really understood what having HCV was like - for that matter neither did I until I was rid of it for a while.

Still trying and looking forward to a SVR future whatever that holds for me. The only redemption (pardon the pun Dr Freeman) has been finding this site and getting treated even though the first time round it failed.

I don't know what to say about repositioning the impact HCV has had on one's life, post treatment. I think dealing with the emotional side of HCV is easier when you are fighting it - and you assess the damage after the battle is won.

I hope things work out for you, and again in a perverse way, you describing your distress has helped me make more sense of my own feelings and fears.



Yours


Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Ariel takes the Plunge 5 years 5 months ago #22781

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Hi Jeff
Yes sorry for the in your face post but I am an honest talker and don't sugar coat stuff unless it's to protect others from being hurt and this was worrying me. I'm actually starting to be able to talk more openly about the legacy of the whole thing but specifically the peginf damage to my overall life.
You have my empathy doing a second round of DAAs you know that I am sure.
I experienced relapse after a really rough peginf riba myself and well, it wasn't pretty let's say.
I'm building a new life yes, I have found I have no choice. Sink or swim and some days are just stay afloat. Personality comes into play, I am naturally hard on myself and also desensitised to medical stuff generally but lately have a heightened sense of foreboding, I think that you are possibly correct in that being unwell for a long time takes a time to get past.
Family I have are friends who know about what happened (only a few people) and my daughters that's it. I'm grateful for FHC forum
It's supported me and others greatly.
Today I sell a surfboard, in around half an hour it's going. I still have another one.
Then I can pay a bill.
I am also resigning myself to this type of stuff for a while but also know that at least I own resources to dip into.
My heart is with those who have nothing behind them
At least I have worked, educated my kids and can sell off stuff until a security comes back into my life.
Regarding your tx I am sending you peace and hope for cure.
Thankyou to all the people who have rsvp to my post
Hanging in
Change is hard when it's constant for over five years it's tiring but I am trying my darnedest to rebuild.
Sending lots of loving splashes to everyone affected by HCV
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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Ariel takes the Plunge 5 years 5 months ago #22798

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Hi Ariel,

You have been fighting so hard to overcome the things that life has thrown at you that your exhaustion is understandable. I think many of us are starting to realise the real cost of this disease to our lives over the past decades. You also have the added burden of a failed IFN treatment and the ongoing health consequences of that which just makes my head spin.

You have put out so much support and kindness to others on this site (including me) that I hope you know that we are sending it back to you in buckets and spades. You're juggling a lot here Ariel so one day at a time but be kind to yourself along the way. We hear you. #love xx
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Ariel takes the Plunge 5 years 5 months ago #22804

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Hi Ariel,

I have been trying to PM you but it doesn't seem to be working.
I don't know if I'm doing something wrong?!

Can you message me please?

maybe I can answer that?

Thanks,
Cindi xo
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Ariel takes the Plunge 5 years 5 months ago #22813

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Hi Ariel,
so sorry to hear about all the crap you're experiencing. Makes it hard when you are hoping for just the opposite after tx. Reading your posts is like going on a rollercoaster ride with you just sad it has left you feeling so low just now. Having said that I am hoping along with all your friends on here that you will be riding away from this bad patch to a more upbeat one. Am truly impressed that your wonderful sense of humour still shines through regardless!

My partner suffers from Tinnitus too and sometimes he can almost forget about it and other times it drives him totally nuts so I have seen how people suffer deeply from it first hand. My heart goes out to you and wish there was a magic wand out there to make this shit all go away.

Teeth Brrrrrrrrrrr won't even go there! At least you can count on being pain free once the tooth is out just horrible to lose them. Hope things start to get better real soon. One day at a time is great advce from Coral. Thinking of you and sending lots of hugs #love
Nadia xx
Diagnosed Hep C genotype 1b early 1990's. Treated 1998 peg Interferon/Riba non responder :-(( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016. :-))
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
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Ariel takes the Plunge 5 years 5 months ago #22826

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Hi Ariel,

I've sent you my email contact so we can chat.
....I think :unsure:

My memory's so stuffed from all the Interferon tx I've had in the past that I get muddled a bit, having trouble with my private messaging, sorry.

Keep strong girl :)

Love Cindi x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Ariel takes the Plunge 5 years 5 months ago #22833

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Hi Ariel, So sorry to hear the things you are going thru. I hope you feel better soon, and your situation will turn around.
I still have the fatigue, joint inflamation, and headaches, but to a lesser degree since my EOT. I never went thru the Peg/inf as you did, but would have only my MD warned me against it
since I went thru breast cancer tx earlier. I also have tinnitus, that comes and goes, but not severe.
I was saddened to hear you might have to sell things at this time. Hope you can manage and hold on to what has given you comfort and peace.
Take care,... Wishing you the best with good health and blessings for the future.....Fara #flower
HCV since 35-40yrs., GT 1a , Dx 2004; VL 4-5 mil, F2-3
Tx sof/led started 3/4/16
4wks VL <15
9 weeks VL UND, ; Alt-15,Ast-13
16 weeks VL UND Alt-20, Ast-22;
EOT 24 wks UND
SVR 4 UND
SVR 12 UND, Alt.15, Ast. 17
SVR 24 UND
Last Edit: 5 years 5 months ago by Fara. Reason: Wording
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Ariel takes the Plunge 5 years 5 months ago #22838

Hi Ariel I am so sorry to read that you may have to sell your home. Would payment plans be an option for your bills? Your health battles have been enormous, you deserve a stress free life from here on in.

I'm happy to hear you have SVR24! One positive in your struggles.

I have suffered tinnitus for as long as I can remember.....whether it is "caused" by Hep C I don't know however since finishing my treatment it abated (a bit quieter) for a while but is now as loud and raucous like it used to be. My hearing is not so good but mainly because of the tinnitus I would imagine. I do find that stress and illness make it worse.

You have always been so encouraging, funny and supportive to everyone on this Forum and seeing the posts of others just shows how many lives you have touched. I wish you well and hang in there.....Xxx #love
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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Ariel takes the Plunge 5 years 5 months ago #22867

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Hey Mermaid, Sorry to read you've got some ongoing life issues, It's such a relief to be SVR and we have been so focused on that for so long, the good news comes and then we have to face the other realities of life ....

Been so busy with otger life issues myself, will be in touch soon and sending BIG #love #flower

ps We have overcome this and now we must overcome that xox
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 5 months ago by LondonGirl.
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Ariel takes the Plunge 5 years 5 months ago #22906

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Thanks everyone for your love
I have a child in hospital in pretty high level care.
I'm so sorry I haven't logged in I simply have no time
I have around a three to four hours drive daily to the hospital plus the time there
Hey, 2017 has to bring something good!
Sending thanks for this loving family here and apologise to anyone who has been worried by my absence I am getting used to the routine atm and wish all the very best as I am well aware we all have lives away from here that can throw up a slippery slope when we least expect it
Xxxxx
Love and splashes from Ariel
I will try to catch up with pms during the coming week
To our American friends I wish you a happy Thanksgiving ❤️
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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Ariel takes the Plunge 5 years 5 months ago #22908

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Glad you had a moment my friend.

Our thoughts and prayers are with both of you.

Fitz
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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Ariel takes the Plunge 5 years 5 months ago #22918

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You and your family are in my thoughts, stay strong.
Keep writing I enjoy reading your posts! :)
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
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