Hep C Discussion Forum

Cinnamon Girl · Guru

Even the finish line is complicated

singsong · Veteran Member

Someone theorized (JimmyK?) that taking the new meds makes many of us feel better because the drugs are carrying the whole load. Killing the virus and helping our immune system. Once we stop taking it, it's left to just our immune system to do everything now plus our body needs to start healing our livers. As our livers are getting healthier, we start feeling better. Makes sense to me.

Tig · Admin

Yepper, that was me! You sent me an SOS, and I was glad to " moleculize" you biggrin

While I'm here, I would like to hear from you, Syd. We need an update! Don't make me swim all the way to Australia. Hawaii's my limit, you might have to meet me halfway! I hope you're feeling okay. I know the post treatment period can be tough. Just know that it will improve and that tired liver will start the repair process. Decades of chronic Hep C have taken it's toll and your body is probably in a bit of shock not having to share immune function to fight that virus. You hang in there girlfriend and stay tough. This too shall pass...

Canuck · Guru

Hey - was that YOU tig??!! I asked, way back when, who just was that was who helped me (way back when) to get that dang thing posted ... so's I could say THANK YOU!! THANK YOU! Finally! (I shoulda known tho). Love, Chuck.

Tig · Admin

I remember having something to do with the Canuck molecule! Such a cute little thing! biggrin

Cheddy · Moderator

You funny, Canuck. I learn something every day around here.!

Canuck · Guru

Ched,

I will have you know that that particular molecular avatar IS my best side, it IS my best face forward - not merely my abhorrent DNA or RNA!!!, but the molecular structure of VEL - my new identity!! hee hee

Cheddy · Moderator

Yeah Canuck. I can go from a picture of the actual Cheddar to a picture of Marilyn Monroe! What will your DNA link (?) meld into?

BTW, MM and I have nothing in common, but I really like being Cheddy

Canuck · Guru

Hey! What the heck! Why does everyone look younger than me, an healthier too! Oh ya, I get it now .... i'll just dust off a pic from when I was 24 years old or something and post that! Actually, now that i think on it a bit - i could post just about ANY pic i want, and just SAY it's me, and none of your would ever know eh? Hmmm. Later. Must say tho, you boys ARE looking pretty good to me! And I do believe wmjl has put on some wgt!(I think) - which is very nice if this is true!! Nice smile, the dental work must be finished?? C.

wmlj1960 · Moderator

Canuck wrote:
is that tarnation pic really a pic of you wmlj?? hee hee (jus teasing!!) - you actually had a pic of yourself on-line here a fair while ago braveheart. I think some of us are just too shy, and, perhaps not so photogenic! C.

Yep that's me in my younger years - here's one of me now, not shy or photogenic but definitely in "tarnation". Lol biggrin

on deck 8-25-16 mod.jpg

Canuck · Guru

Hey all,

Speaking of our lovely beauties doing much appreciated "reveals" of late, at or after the finish line - (insert handsome in the case of tig or you guys) - is that tarnation pic really a pic of you wmlj?? hee hee (jus teasing!!) - you actually had a pic of yourself on-line here a fair while ago braveheart. I think some of us are just too shy, and, perhaps not so photogenic! smile C.

-- Edited by Canuck on Tuesday 6th of September 2016 05:58:03 PM

wmlj1960 · Moderator

Sydhanrahan wrote:
I saw a photo of Cinnamon Girl - beautiful red headed lady looking very relaxed beachside.
Syd

Tig56 wrote:
Hey Syd,
I have to agree, that picture of Jill was fabulous! Looks like life is really agreeing with her. She's beautiful, inside and out!

I agree. Very beautiful "inside and out"!

Tig · Admin

Hey Syd,

I have to agree, that picture of Jill was fabulous! Looks like life is really agreeing with her. She's beautiful, inside and out! smile

Sydhanrahan · Guru

Thanks for your comments everyone. Great to hear that you Singsong, are generally feeling better too.

I saw a photo of Cinnamon Girl - beautiful red headed lady looking very relaxed beachside.

Syd

RAGDOLL · Senior Member

Syd, congrats on SVR 12. What a journey this has been for you and what a great success story. So much improvement in a short time.... This is very encouraging. Thank you. Best wishes and continued healing as the days and weeks go by. Chris

JakeAms · Member

Excellent news! Rome was'nt built in one day, but if you continue to maintain a healthy lifestye you should see gradual improvements, and like others have said, the virus is not kicking your liver every moment of the day any longer so it really can only get better.

Tig · Admin

Hey Sister Syd,

I like the sound of all those improvements! I wish we could bring back some of the youth and vitality lost due to this disease. Since we can't expect to find it hiding anywhere but in our memory, we can concentrate on new found health. I know we can agree that things are improving and I believe they will continue to. Never seems fast enough, but I've witnessed a lot of good things as a result of SVR. We'll get there! Dragon be damned....

Too bad Dave isn't around, he could take care of that Pergola for you! He just finished up a beautiful patio deck/pergola for his niece. I wish I was close, I'd take care of that for you. It would be nice to be able to do more for each other. I can give you a piece of advice, read the directions first! I have a bad habit of waiting until I'm half way finished and then realizing something is backwards, then read the directions.

Enjoy your magical haven!

Canuck · Guru

Singsong,

I too like syd's sayings, very much, i.e. "in a matchbox". They are always right on and so enjoyable. She "has her ways", and has a way with words, that's for sure!. Like, her comment "thoughts fly around your head before treatment like confetti in a wind machine", and many others, she really has great insight, perspective and very good means of expressing it. She does know how to best help herself and others. Glad she's here.

I am glad you are getting bits and pieces of wellness (both of you). This is not easy stuff ANY of us are doing here. I've decided ... we all get A's!! smile C.

singsong · Veteran Member

Hi Syd

As I said before, it's all wonderful news. I like your line "I am beginning to learn how to squash worries in a matchbox rather than just let them balloon into huge cumbersome ever present burdens".

Post treatment has been interesting so far. I go in for my EOT plus 12 on Tuesday. I had lots of energy on my 8 weeks of Harvoni. No side effects other than enjoying candy more than I had since I was a child. That has thankfully gone since EOT. I did have some "blah" days post treatment - not depression, but I knew if I just got to the next day it would be better. That has also gone by the wayside and I feel better by the day. Some days I get tired late afternoon and other days I don't. No complaints.

Sydhanrahan · Guru

Yes RC,

the ascites has virtually gone. Am still on a very low dose diuretic but more as a precaution I think. All the symptoms I had before, easy bleeding, clay coloured stools, cramps, extreme fatigue and depression, have gone. i still tire easily and think that's going to be a slow process as I don't love exercise and my body is still recuperating. Still have bad aches and pains and a lot of my hair as fallen out. But I would trade the old symptoms in a heart beat fir the new ones.

and yes, Tig, hurricanes don't sound like my cup of teA, and Spring blue skies are very welcome. I have bought myself a metal and canvas pergola. Just have to find someone who can screw it together for me and then cover it with a million led lights and turn it into my special magic haven. I could be lolling out there for the next 6 months.

Photos will follow.

thanks everyone.

Syd

robertsamx · Guru

Hi Syd- a 20 point drop has to feel good physically. Your liver is healing, I will bet the edema has gotten better? No wonder your feeling so good, glad to hear you head space is doing so well. RC

Observer · Guru

Fantastic news about your scan drop

and about your positive outlook

enjoy your joy

Alison

Loopy Lisa · Guru

Hey Syd,

I am so happy for you, you deserve it. Hep C is known to give all kinds of problems and that includes depression. I think that aspect is underplayed and it doesn't shock me it is lifting. A virus rushing all over the body causing as much havoc as it can causing inflammation, disrupting digestion, creating brain fogs among other nasty attacks it is going to have a knock on affect. Now your body is beginning to heal all these issues, you are going to feel better and better. Take a boulder of the shoulder and the body sighs with relief. Happy days Syd. :D

Canuck · Guru

Pretty impressive you are ole girl - all 'round, in every way! YOU ARE just the BEST news! Love it. biggrin C.

Ruby Red · Senior Member

Syd, this is absolutely the best news!! I'm in agreement that miracles do happen!!

R

Tig · Admin

Hey Sister Syd,

HOORAH - HOORAH!! That's a heck of an improvement, Syd. What did your doctor say about that? Surprised? Have them switch that up once in awhile with an MRI if they will do that for you. It will be good to have one to follow over time. Let the good times and good news continue! I'm thrilled to hear all of the joy smile

Congrats!

PS: I'll trade you your September Spring for our September Hurricane! Yes/No? wink

Phoenix17 · Senior Member

Awesome Syd! Congratulations. You are giving me hope. Reading your posts makes me happy for you and I know that someday soon I will be feeling the same. Thanks for the encouragement!

wendyo · Guru

That is terrific news Syd. Your attitude and mind set is so refreshing to hear/read. I am really happy for you.

Sydhanrahan · Guru

Hi guys,

i had my fibroscan on Wednesday. Prior to treatment it was 47 and now it is 27. im pretty happy with a 20 point drop in 9 months. biggrin

I am still very achy and sore but September is Spring here and already it is less bitterly cold which is having a positive impact on geriatric aches and pains.

but it's the head space thing that is most amazing for me. Sorry to repeat myself, but I hope this is encouraging for those pre or on treatment. Having spent my entire adult life suffering various degrees of anxiety and depression, the change in my state of mind post treatment is to me nothing short of miraculous. Simple sights, sounds and smells give me so much pleasure. The wonder of simply being alive knocks me out. I am beginning to learn how to squash worries in a matchbox rather than just let them balloon into huge cumbersome ever present burdens. I feel as though i have lived my life behind a glass darkly. Now that film has been stripped away.

maybe it's just typical survivor head space stuff but I'm choosing to go for the it's a miracle line.

Come with me.

Syd

Cinnamon Girl · Guru

Oh Syd, I don`t mind telling you I shed a few tears of joy reading this wonderful news, this is just so amazing and I`m very, very happy for you!!! biggrin

I understand exactly what you mean about stupid things we did in our past jumping out and catching up with and us, and those of us who survived those times and manage to rid ourselves of the Hep C Dragon are incredibly lucky. Any you`re so right, no-one can understand what that`s like as well as other people who`ve been there, which is why a caring and supportive forum like this is so very valuable.

Congratulations and a big hug coming your way, Syd!!! And how great it is to see your lovely face, at last... the face of a strong, courageous and beautiful woman!

Canuck · Guru

Strong, brave, gutsy and smart! You guys are the "real deal". You and tig ... taking it all off to reveal the truths! Nice. Beautiful actually! Oh, tig won't like that, in his case ... handsome then! smile C.

Observer · Guru

Yay congrats

Sydhanrahan · Guru

Thanks so much to all of you. I was just chewing Tig's ear off with a quick rave about how the tone of the forum must have changed since the old days when people were tortured on 48 weeks of interferon and Ribaviron for 48 weeks. So many of them still had it at the end of all that too.

So i know we are a very lucky bunch comparatively. However theres a number of goal posts that haven't changed. Left untreated it's a deadly Disease. The side effects creep on you slowly over time. The new drugs are so new that we're all pretty much Guinea pigs. The stigma, though not so bad, is still definitely there. For many of us it's being confronted by a stupid stage in our lives we'd hope we'd put well and truly behind us. People here often seem to understand better than our own loving families what we are going through.

Together we give each other strength and courage.

Syd

singsong · Veteran Member

Wonderful news, Syd!

derek · Member

Syd, that is amazing news. I am new to this site and I dont know to much about you and I am fairly illiterate when it comes to reading the numbers. But I want to thank you for sharing your victory, it gives me strength and hope. Once again this forum comforts me.

Congratulations.

Canuck · Guru

... just stumbled out of a boxing ring, being told I won on points but so bloodied up I don't recognise the person in the mirror ... pushing and pulling, cajoling, sharp pep talks ... big teary hugs ... destroying Dragon ... strength ... rocky journey ... killing ... mess ... battle ... beaten up ...learned the drill ... same boat ... pounded 24/7

Eeww, geyawd, feel like I'm all covered in wet gore from my dear syds' war zone!

"I love the smell of sof/dac in the mornin'!! (That was my impression of Robert Duvall in "Apocalypse Now" BTW).

Man, all of us together, we couldn't have better buddies in this war, eh? It's a very fine day, with you here syd! C.

Pablito · Senior Member

Congrats Syd. You deserve and have been a wonderful member of this forum.

Pablo

K8 · Member

Awesome news! This gives me so much hope. Thank you for all of your sharing and I, too, found strength on this site.
Getting my strength back too as I am 5 weeks post treatment....just grateful for each day and grateful you are SVR !

Sydhanrahan · Guru

Thank you everyone,

you know if I were here without you all, it certainly wouldn't be with the same head space.

You have all helped me more than I can say.

Syd

wendyo · Guru

Syd,

when you said golden pass I envisioned the little boy getting the Willie Wonka golden ticket. My heart is happy for you. Long journey and here you are. Congrats. Like Lisa said, we did not get this ill overnight so healing takes time. Do something nice for you this weekend. You deserve it.

wendy

Loopy Lisa · Guru

Hey Syd,

That is fantastic news. Repairing is like losing weight, it takes a long time to get obese, and a long time to shed it all. You are now like Dr. Who, regenerating, fantastic! One year from now you will have so much change you will be dancing from the ceiling. :D

wmlj1960 · Moderator

That's fantastic Syd. Welcome to the world of SVR. You've had a rocky journey killing that dragon but you are free now to live without it on your back. I was also decompensated and have recovered very well so far and you will too in time. Just keep taking care of your body and the sky will be the limit. SVR Party time!!! Dance Dance Dance!!!

JimmyK · Guru

Sydhanrahan wrote:

I realize that you don't turn forty something years of chronic illness, a decompensated liver, into a pink floppy puppy liver in 26 weeks so some of my bloods are great, others not so good.

Greetings Sis,

This is the point you should focus on. You are SVR 12 and the damage done over the course of 40 years will not be something that will be undone over night.

But the fact is your numbers are headed in the right direction and will continue to do so. The Dragon is slain and now it is a simple matter of cleaning up the mess he made and you are now in the position to do so.

I am very happy for you Sis ! I don't mind admitting you had me worried for you for awhile there. Oh and I know you don't see things as I do, but I prayed for you anyway LOL. :)

Your Brother

JimmyK

Shadowfax · Guru

Syd,

That is really good news. SVR and it is the key to our livers improving over time. I am in the same boat so I feel exactly how you do. I as you know reached SVR and pretty good LFT's like you but my liver although functioning has a long way to go.

This is our next hopefully easy battle. We don't do anything to hurt it and now that the C is gone, it will not be pounded 24/7 anymore so we hope they will regenerate because that is what livers can do as you know.

I am really happy for you, for us, for all that will get here and have already and there are many.

You have helped so many people in here with your great positive attitude and sense of humour. We are all indebted to you as well. This forum is just the best.

I wish you all the best

SF

** My FS score is high like yours and I don't expect or want another test right now. I think I need to give it some time so it can heal after 40+ years of being beaten up. I am thinking a year from when I started treatment. That would be Feb 9th 2017 and now that the C is gone, I can actually feel I will be here then as well.

-- Edited by Shadowfax on Thursday 25th of August 2016 08:49:17 PM

Tig · Admin

Hey Syd,

WOOHOO!!! That's music to my ears! Congratulations is the order of the day from me, YE OLD SHERIFF Tig. I had you down for tomorrow, so you beat me to the celebration. How wonderful!

These treatments are so effective. We've got a way to go, but look at the changes in just 2 years. It's pretty incredible that we're witnessing a medical breakthrough. I'm thrilled you were successful in destroying that Dragon! No more worrying about that. Keep moving forward, good things are ahead. That's something to smile about smile

Cheddy · Moderator

Syd,

12 IS THE WINNING NUMBER!!!!!!!! SVR12!

Your ALT AST and Bilirubin are down. That's key. I'm not the best lab interpreter here so I will leave it to the better informed. I do know that his is fresh. It will take some time to find your old self. You've learned the drill already: healthy habits and hydration forever. Livers are remarkably resilient.

Treat yourself to something nice, celebrate, do the happy dance, wear a goofy hat. Tig's got some snappy Toni Lamas all polished up. Come one come all to the Cyberfest.

I want to thank you, too Syd, for all of your positive input here. You've added plenty to a grateful team.

Big hugs back at you.

Cheddy

Sydhanrahan · Guru

Hi all,

i just wanted to let you know that I recieved my golden pass yesterday. POST 12 SVR.

it seems like half a life time since I joined this forum last December and it probably would have been half the time I had left on this Earth without treatment. What a journey - I feel like I just stumbled out of a boxing ring, being told I won on points but so bloodied up I don't recognise the person in the mirror.

Thank you so much for all your pushing and pulling, cajoling, sharp pep talks, and above all kindness and understanding.

I realise that you don't turn forty something years of chronic illness, a decompensated liver, into a pink floppy puppy liver in 26 weeks so some of my bloods are great, others not so good.

before treatment After treatment

bilirubin 33 12

ALP 221 152

Ggt 164 76

ALT 220 25

AST 409 51

Albumin 27 67

My last fibroscan was, I think 37 so I hope that's improved a tad next week when I have the test.

Once again, I am forever indebted to so many of you. I'm resisting the temptation to name names for fear I've left anyone off, but you know who you are.

Big teary hugs,

Syd

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