Home › Forums › Main Forum › Patient Stories › Ariel takes the Plunge
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16 November 2016 at 4:24 am #24313
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!! hmy:
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.
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 xI
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!!16 November 2016 at 4:44 am #24316Ariel, Congratulations on SVR 24 sweetie!!
16 November 2016 at 5:37 am #24317Sucks to hear you have to sell your house. Damn, that really sucks….
Here for you, mermaid.
18 November 2016 at 2:53 pm #24359“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
19 November 2016 at 1:16 am #24362Hi 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
A21 November 2016 at 3:30 am #24380Hi 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. xx
21 November 2016 at 12:25 pm #24386Hi 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!!22 November 2016 at 2:28 pm #24395Hi 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
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!23 November 2016 at 1:28 am #24409Hi Ariel,
I’ve sent you my email contact so we can chat.
….I thinkMy 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!!23 November 2016 at 5:18 am #24417Hi 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
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 UND23 November 2016 at 6:45 am #24421Hi 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
YMMV
24 November 2016 at 1:35 pm #24451Hey 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
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 HepC26 November 2016 at 1:27 pm #24493Thanks 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 ❤️26 November 2016 at 8:39 pm #24495Glad you had a moment my friend.
Our thoughts and prayers are with both of you.
Fitz
27 November 2016 at 10:37 am #24505You 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 7/2016Viral 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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