Hep C Discussion Forum

Cheddy · Moderator

RE: All aboard the "Harvoni" Treatment Train

Canuck · Guru

Yay George and Karyl - So glad george is back in loving home and hands. C.

5-1-18 · Guru

Karyl wrote:
Cheddy.he had surgery yesterday to remove the mass. His vet thinks she got it all . He has stitches and a cone bit seems happy

awwwwe, george is in the cone zone cry , but i'm glad the vet thinks she got it all

Karyl · Veteran Member

Cheddy.he had surgery yesterday to remove the mass. His vet thinks she got it all . He has stitches and a cone bit seems happy

Cheddy · Moderator

Karyl,

I love that you had a celebration dinner. How grand that it includes your daughter taking her next step. I think a celebration can mark an end to the old and a start of the new. Exercise always helps if you can do it.

Now George needs to do the same. Can he be treated?

I can't even tell you how boned I become with my creatures. It's a very vulnerable necessity.

Canuck · Guru

5,

Talk about getting your mind around something - being out of it, then waking up thinking you are in the morgue! Oh dear, alright. I think I recall you mentioning your "get-out-of-the-morgue-card" trip before! I tried not to giggle then, the first time you mentioned that morgue thing, but you presented it in such a profoundly serious but also oddly funny way!

Polo,

Also mind warp, to get your head around this new info, that perhaps you would have never expected to hear/know from this 90 year old lady! But, before you read into anything too much, and try to firmly reconstruct things, from way back then, the diagnosis "may" not have very been "firm", hepatitis, back then, was A or B or maybe non-A/B, took a while for C to surface as a label, meanwhile there could be other disease-process reasons why people could have "-itis" (inflammation of) the liver, including hepatitis or jaundice NOT caused by viruses.

Keep extenuating and unknown/further circumstances and info (from way back when), in mind, that the info shared by this 90 year old lady IS old, dated and could very well be incomplete, it would be interesting if there had been further/more, better/fuller info - but (I think), still, it is info I would choose to have in my repertoire to consider, rather than to have not heard it from this 90 year old.

These docs and hosp from that era may not have figured anything out correct about you, thus your Mom may not have had it figured out either, and nor does this 90 year old lady know for sure what you had and when, back when you were about 17! Sorry, it could still be a mystery - you can't base your findings on a 90 year olds memory.

Some of us just may never know (for sure) exactly how and why and when we got the virus, how do we not know we didn't get it during our dental/oral surgery for our wisdom teeth, or from a preventative gamma globulin shot they used to give people to people exposed to hep a, or from a scad of many routes we did not know hep c could be given to us!

Food for thought alright.

I echo 5, thank god for Gilead, freeing us from the viral burden. smile C.

5-1-18 · Guru

polo, that sure was a dif time cry .

i'm so glad you found your way to a cure.

when i got sick i was left in isolation for awhile, i was so out of it i don't know how long i was there.. they told me i'd be well in 3 months..

i thot i was in the morgue , i was out of it for a long time after that but didn't know the severity of the disease. they were so backwards in healthcare cry

Hoodietree · Senior Member

That information would definitely be shocking to me as well Polo.

I agree theres nothing to be done about it, but my goodness its just a lot to process, isnt it? Hugs to you. And happy b-day in a couple days!

polosilver · Senior Member

I'm posting in this thread since this is where I posted during treatment last year...I had to share that i have spoke with someone who knew my parents (who are both deceased) back when I was a kid and a teenager. This friend of my mother's is still living at 90 and told me my mother told her that I was in the hospital with hepatitis when I was 17. I was in the hospital a couple of times as a teenager, once for my wisdom teeth when I had trouble clotting and lost a lot of blood. I was in the hospital for I think 3 or 4 days. Another time when I had something that they weren't sure what it was and I was in isolation. This must have been when I had hepatitis. My parents never told me. Back then it was a different world. I know there was a day or so when I was in isolation and then later not in isolation. I think I was in the hospital for about a week. The hospital no longer exists, our family doctor from that time is long deceased. I thought I would never know anything and then I now learn my parents, at least my mother knew I had hepatitis and no one ever told me. There is really nothing to do about it all these years later, but wanted to share this. Its a bit of a shock.

ps

Hoodietree · Senior Member

Glad to see you posting again Karyl I love seeing Georges sweet face. Awww lookit dat face

Sendind healing vibes and well wishes to George =^..^=

5-1-18 · Guru

Karyl wrote:
Biopsy

oh no., dear george please get well, we need you

Karyl · Veteran Member

Biopsy

Karyl · Veteran Member

Looks like a cancer. George having a bioosy6on tuesday

Hoodietree · Senior Member

YAY KARYL!!

Enjoy those ribs you earned em!

5-1-18 · Guru

i hope george is ok

polosilver · Senior Member

Congratulations on EOT Karyl!! Wonderful! I get it on the pain on the right side. I had that for years too...and about 2-3 weeks into treatment it disappeared. Congrats on your daughter too...bbq ribs...a great way to celebrate all these marvelous things in your life, including yourself. biggrin biggrin

Hope kitty George is okay.

ps

Karyl · Veteran Member

Thanks everyone! Last night we had a celebratory dinner of bbq ribs to celebrate my EOT and my daughter's journey into therapy. Now to get some energy back by losing a few lbs and exercising more.

I forgot to mention it WEEKS ago, but after ONE week on harvoni I noticed that right side achy pinchy feeling was GONE. I have had this my entire adult life. I can finally sleep on my right side without noticing any discomfort. I wasn't 100% it was from my hep c as my reg docs kept telling me I pulled a muscle every time I complained. Now I know the truth! And I am set FREE!! Woo hooooooooooooooo.

I have to go get ready to take George to the vet now as he has a boo boo on his upper right hindquarter and we need to find out if he got beat up by Steve (daughter's cat) or it's something else. Never a dull moment............

sailing shoes · Veteran Member

Tig,

I try not to be an alarmist, and my first coordinator also recommended Benadryl for sleep, BUT there was an article in the JAMA recently (referenced here: https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667) advising against long term use of benadryl.

FWIW

Canuck · Guru

Lovely Karyl! - NO MORE having to take those harvoni pills.

Thank goodness for these DAA's, but aren't we glad when we don't have to take them anymore.

Wishing you calm and relief, and a happy and celebratory EOT.

You did, and are doing, very well under trying circumstances.

Wishing you calm and relief, and a happy and celebratory EOT.

Glad you are done. smile C.

Tig · Admin

HOORAY CAROL!! EOT is upon you, congratulations. You did it!

5-1-18 · Guru

oh happy day! one pill away congrats karyl

Cheddy · Moderator

Ex.cel. lent!!!! At last. That must be a relief. It's complicated, though, isn't it.

Good work Karyl.

Iris Dragonfly · Guru

WoooooHooooo the finish line is right in view!!!

You go girl,

Karyl · Veteran Member

One. More. Pill.

Canuck · Guru

Almost done Karyl, brave strong lady! C.

5-1-18 · Guru

about the nervous breakdown.hahahahahahaa yup

Hoodietree · Senior Member

Congrats Karyl! 4 more sleeps, woohoo!

polosilver · Senior Member

Karyl --- you got this girl!! Way to go only 4 pills,,keep drinking water and swallowing the magic for 4 more days...George looks like a sweetie to hang with...

5-1-18 · Guru

wow karyl, only four more pills to go~

you've had so much going on that the tx just got swept along with the rest of life.

kudos to you for being diligent with your pills

once again george comes thru for you; i know this must be a sad time for you saying goodbye to sweet chloe.

i'm sending loving thots your way.....and to george too.

Karyl · Veteran Member

Feels strange to not have to walk Chloe in the morning. We miss her. But George is right next to me. He was very caring the days before we put Chloe to sleep. He watched over her and did not once scratch her face. Animals know things.

4 more pills to go. Saturday I'll take my last one. What a ride this has been. So far so good. I'm amazed how good I feel without my supplements.

Canuck · Guru

Aw, how sad about poor doggie Karyl - I feel for ya. These are really hard things to go through and bear aren't they. I still grieve for mine. Tigs right, there is not enough time. C.

5-1-18 · Guru

Cheddy wrote:
Hey 5. My kitty's name is Cheddar (and subsequently known as Cheddy). He's the big boy in my avatar. Couldn't love him more.

biggrin biggrin biggrin

she was my only child

Cheddy · Moderator

Hey 5. My kitty's name is Cheddar (and subsequently known as Cheddy). He's the big boy in my avatar. Couldn't love him more.

Cheddy · Moderator

Karyl, What a crossroads. You are gaining and losing at the same time. Losing a pet is soooooo hard!!! They really are not here long enough. I'm so sorry for all you are going through - daughter, dog, drugs - 3D challenges. It's a tough time, indeed. I am very glad that you are on the road to recovery, though. Things will take on a different light when you are HCV free.

Rest. Bask. Pull yourself through. Write the best history book you can.

Cheddy

polosilver · Senior Member

Karyl -- you are nearly pulling into the station, and I am happy for you! Its an amazing journey and the healing process continues as time passes even after UND, Club Zero and all the treatments. You will continue in new ways after crossing the finish line.

I too am saddened by your prospects of losing a furry dear friend and family member...its a heartbreak losing them. May your fond memories comfort you...so much bitter & sweet in this life. Be well, and don't forget to drink lots of water these last couple of weeks!

ps

Tig · Admin

Two weeks will go by quickly and this will go down in the Carol history book. You’re almost there! The finish line is right in front of you.

I’m so sorry about your fur baby. I had to make the same decision a few years back with my Border Collie/Aussie Shepherd mix. He was my very best friend and I think about him daily. They bring such joy to our lives. Their time with us is way too short.... :/

5-1-18 · Guru

karyl, that is sad news about your furbaby. cry , my cat cheese will be there to greet dottie when she gets to the rainbow bridge. i'm glad you will be there with her.

congrats on the last 2 weeks

Karyl · Veteran Member

Thx everyone. Today is 1st day of last 2 weeks. Anxious to get this train ride over. Update on our dottie. She's doing worse every day and we will be making arrangements for a vet to come to our house in the next few days to send her to where good doggers go. We are sad but she's a very old lady at 11 yrs .

polosilver · Senior Member

Wow, Karyl!!! Woohoo...first step into the Club Zero...welcome...

Canuck · Guru

Copied my post to you, to be over here - wasn't sure which thread it should be on - just happy for ya! : )

Hey Karyl,

Big congrats on your first UND! Feels good eh? Good for you to have gotten yourself here. Milestones! You are leaving this HCV in the dust and on to better things. It won't be long now and you will soon be finished. Your treatment, like mine, was only 8 weeks, but we know how long things can feel, don't we (considering all things).

Tig mentions (that if your EOT is about Nov 18) then, 12 weeks from EOT would be early in Feb 2019, and that's when your EOT+12 week labs should be due (for your SVR12).

But if your doc wants to see you earlier, for anything else, at all, I would go. Many docs do choose to see pts. and may well wish do various labs at EOT, in addition to seeing you and doing labs at EOT+12 weeks - so, if she wishes to see you earlier, I would go, the more labs they have on you the better (I think). Just make sure you do (at minimum) get the EOT+12 week SVR 12 labs done in Feb.

I hope things are going a little easier for you around your house right now. Very good news, your lovely UND and nice dropped ALT/AST's! : ) C.

Cheddy · Moderator

Terrific!!!!

Tig · Admin

Fabulous!! Congrats, Carol

5-1-18 · Guru

woohoo ,

Karyl · Veteran Member

At doctor's right now. Lab work says no virus detected!!!!!! Woooohoooo!

5-1-18 · Guru

i'm so glad you got your lab requests and that you kept on it!

Karyl · Veteran Member

Just called the dr's office and the nurse told me she DID order tests but the office ppl dropped the ball and forgot to call me. oy vey. So I guess I'll dash down to the lab so she has the results on Monday

Iris Dragonfly · Guru

Hey Karyl what a bummer about your head, wonder why now? You have been under more stress lately, I'm sure that contributes. I take aspirin, it's my favorite pain reliever. It's really unfortunate when our Dr.s are not on top of things, I tend to keep a flame under them or I swear, they would forget to follow up completely. I had the gal from the Pharmy who sent the meds call for a final follow up, when she asked for a rating of the program I couldn't give her all the stars, she was supposed to have checked in on me but didn't. She did however answer a ton of questions before treatment, and I had dr's and the Pharmy on call if I had any questions, or I could have called the gal but I didn't. She did however report my weird side effects.

The water was hard for me to keep up on and maybe that is why the sides were so weird but the pharmacy said it was not imperative that I drink so much water, maybe slack off a bit (by a glass or three) and see if there is a difference? I know this is counter to what everyone has said, but if it is a problem....um...ok, please don't everyone kick me at once.

Keep on top of those guys... sometimes I think they make their money on co pays anymore.

BB, Iris

Karyl · Veteran Member

In the middle of my 5th week. I have daily headaches now and also feel like I'm floating down the river with all the water I'm drinking. On the plus side, my skin looks so much better these days. Annoyed with my dr. I called her office to ask if I'm to get bloodwork done before my appt next week and I haven't heard back in 3 days. Will call again today. I do NOT want to have to pay for 2 high co-pay specialist office visits to have her tell me to go to the lab then come back for the results.

Canuck · Guru

Really too bad karyl! For everyone - there will never be any good time for these upheavals - as you said you have done everything within your power to help her - you need to concentrate on yourself right now. Steel yourself to do whatever is necessary to take care of yourself first (you can always decide to try to help further/assist/intervene with them in future) but, for the time being, you are your patient whom you need to take care of.

You are right (you can't make her) and Shemp is right (until she is ready she is on her own journey), under these circumstances, for her AND you, this physical separation sounds best. Disappointing and sad, frustrating and crushing (I am sure) for you, to have to go through this, and for you to see them going through this, but it is what it is and you are the one who is forced to act appropriately under these conditions - protect number one, you are in a vulnerable position of transition. Now is not the time you should have to be caring for her or dealing with her stuff. You need to concentrate on your health and well being.

You will later be healthier, stronger and better equipped to try (and try again) with them in future as you decide. You need to adopt a self-preservation pose for now. C.

Hoodietree · Senior Member

Hang in there Karyl it's gets better I promise.

Have you considered Al-Anon for support in dealing with active alcoholic family members? I can't understate the emotional roller coaster treatment has been for me, so if you're anything like me you might need to take extra good care of yourself, and that may include getting outside support If you're not already getting it.

It wasn't until week 10 that I started to feel better, but you might start feeling better sooner. But even "feeling better" just means I have more energy, so that's problematic because I have to scale back on the coffee otherwise I get anxious. It's a constant balancing act dealing with the fluctuations in energy and adjusting sleep and exercise if and as appropriate. good luck keep up the great work.

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