Hep C Discussion Forum

Canuck · Guru

RE: Newly Diagnosed and just cant stop thinking about it.

Tigerlily · Member

Tig......u da man! And I have no problem reading upside down. Awesome skill to have , I think anyway.

Tig · Admin

¡ʇɐǝɥɔ ı ǝsnɐɔ 'ǝɯ ɥʇıʍ sǝןzznd pǝןqɯɐɹɔs ƃuıop sǝʞıן ʎpoqou ˙ןןıʍ ʇɐ ǝןqɯɐɹɔsun ɹo ǝsɹǝʌǝɹ puɐ sןןıʞs pɐɯ ǝʌɐɥ ı ¡ʇɐɥʇ ɥʇıʍ noʎ dןǝɥ uɐɔ ı ¿ɔıxǝןsʎp wink

'ʞɔnuɐɔ ıɥ

Canuck · Guru

TL!

Man oh man, do I ever like them big fat zero's. F-0! it's just kind rolls off the tongue doesn't it, I love saying zero, thinking zero, being a zero, I have developed a taste for zeros. I have learned the new math (just about a year ago - never too late!) and 0 is an amazing number and my very favourite! You can do so much with it! You should be gloating about owning that 0, you have got the battle half won starting out with that score. It gets better yet, your going to get some more zero's to add to that one! 000000000000000000000 wheeeee! biggrin

Hey, remind me again ... when you went to doc (and came away with that req. in hand for you to go for the fibroscan, and, he sent you to the lab for more bloods ...

1) what were those bloods he sent you for - did he "re-do" your GT, do a VL, and LFT's? Did you, or can you, get those results? Did he tell you that first day of any of your prior labs that he might have had access to?

2) what else did you two cover that day? Because you were classed (as far as we know) as a GT1a, did he mention which treatment drugs choices he had in mind for you?

3) you told him about your 9.9 hep b immunity level - was he happy with your immunity "as is", as far as hepa/hepb, flu etc? Did he suggest any further immunizations?

Also good news, about how you are holding your own, and managing things very well, considering all. It IS a stressful time, I am glad you are trialing the celexa and have these kind of "back-up" buddies in a bottle (that what I call them), interesting the good bonus effects of the beta-blockers.

I think you are going to do very well, this will practically be all over, before you know it - just as soon as you get started with the biggest, baddest, bestest back-up buddy in a bottle of all - your hepc drugs!

Your virus's days are numbered! And boy do we ever have a special number in mind for him! biggrin C.

Tig,

Nevr tease a dyslexic, or d96.>'xo3=8z/l?<,=,gr^FG)-ia4w5%?\o]0'iU[;mm\|! wink

Tig · Admin

Leslie,

WOOT! F-0? That's hepatic equivalent of the Holy Grail! Congrats on that most excellent report! Let that bring a smile to your face smile

Yeah, I'm not sure about Canuck. It looked good to me, lol! She's always up so late! Poor thing. I better send her another Blizzard gift card. She needs a sugar boost and a reward for being a good doobie!

Canuck, xx

Tigerlily · Member

Canuck,

I have not heard anymore about an US of the abdomen. I will ask when i go back to see the Doc. As far as my fibroscan, they office called me back today just to let me know my Fscore=0. That's all the information she had for me but once again i will take it cause it is good news. As far as the Celexa, is it working? I guess in a way it is....I am still only taking 10mg a day and I seem to be doing okay. I am also taking a beta-blocker that also helps with the anxiety in its own way. So I am doing good on that front. Every now and again I get anxiety in a big crowd but everyday it gets a little better. I was given some meds for those kinds of "attacks" but I havent used them. Not yet at least.

Tig,

I don't know what Canuck was talking about I could read you loud and clear. lol

Hope all have a good weekend!!

Canuck · Guru

Ah. Yay! Tig is no longer speaking in tongues - plain ole english now - he's converted - I can read you perfectly now Tig. biggrin C.

Tig · Admin

Picky, Picky, Picky! wink

Canuck · Guru

Hey TL,

Thanks so much for your update! Good things, coming along, all in the right direction! smile

I am betting Tig was pleased with your update too, but I can't read his entry, as it is showing up in cyber-greek, or some such language that I can't read. wink

Waiting is hard I know, but it won't be long now! Nice tho that the pharmacy keeps phoning you. Too bad you have limited info from docs end, but yes, that IS very good news - NO cirrhosis is VERY welcome news, even if they did not tell you if you what you were F0, F1, F2, F3 etc., or what your kPa measurement number was - you can ask for that later. I can't remember, did they ever give you or offer you that abd. U/S as well?

You are doing all the right things, patience of Job, phoning your docs office, and are very ready. Not much more a human can do except keep on them to make sure all the i's are dotted and t's are crosed. Good to phone your doc again on Monday to ask what else needs to done, has everything been done, has he sent your fibroscan and all other test results that he insurance was asking for along to them, and, how long will it take for insurance to respond now?? You are flying around in that famous mysteriously misty stage of the pharmacy/insurance/doctor triangle - it will clear soon and your drugs will land.

How are you feeling? Do you think the celexa is helpful? We'll be right here, waiting to hear your news or anything on your mind. We're rootin fer ya! smile C.

Tig · Admin

Hi Leslie,

That's good news! Trust me, not having cirrhosis is exactly what you want to hear. After decades with this disease, the diagnosis of cirrhosis isn't uncommon at all. So count your blessings and look forward to getting your approval finalized. They typically don't wait long to inform you once they have the diagnosis in hand. Your doctor will most likely provide you with an F score or fibrosis score (F0-F4) 0 = No fibrosis, 4 = cirrhosis. Ask for a copy of the report and file it away. Get a copy of everything, it's valuable and informative information to retain.

Let us know what you find out Monday. You're one step closer!

Tigerlily · Member

Been waiting for news so that I could pass it along. Fibroscan completed. Called doc today to find out results. All they could tell me today is that there is no cirrhosis. Which I gather is a good thing. Doc wont actually be in office til Monday, when i will call back and get more information than "no cirrhosis". Special pharmacy has been calling regularly to let me know what is going on on their side. Last update was waiting for scan results to then go to insurance for approval. Still shooting for that June 7 start. Not sure it will happen but hey one can hope right..

Hope all are doing well!!

Leslie

JimmyK · Guru

Fantastic. Absolutely normal procedure. Things are proceeding as they should.

You are going to be cured! wink

JimmyK

Tig · Admin

Hey TL,

I'm sure they're waiting on the fibroscan. Every insurance provider I know of has required that first. It's easy. If the authorization were to come through the end of this week, you could have your medication by your target date of the 7th. Especially with the specialty pharmacy set up already. Good luck! smile

Tigerlily · Member

Got phone call from specialty pharmacy today. Waiting on insurance approval. They are in need of some more tests. I believe it is the fibroscan which is scheduled for Thursday. Wouldn't it be spectacular if I could get approved and have my meds before June 7? June 7 is the date the Plan A doc was to first see me, OR even on June 7!!! I am so glad I went with my gut and stayed with Plan B doc.

Thank you all for the well wishes on the TWINS. I still can't believe my baby (33yr old) is gonna have babies. I am still in shock!!

TL

Observer · Guru

That is fantastic news TL.

Twins will be such fun for gramma-ing (probably not a real word) biggrin

And I'm very glad that when you shared your diagnosis with your son, he was supportive...he obviously has a great momma who raised him right. aww

Alison

Canuck · Guru

Hey Tigerlily,

What wonderful news! - thanks for sharing it with us.

I'm so glad you told your son, hey, maybe he was just as nervous to tell you his news!

All and all, that is a very nice day, for everyone. There will be many more nice and exciting days to come.

Nice when you have some folk or friends who rally behind you, just like you, who will rally behind him and his new little ones to come. Everybody can do with a little tender loving care, consideration and suppport. Can make all the dif. smile C.

Tig · Admin

Congratulations, Grandma!! I have two grand babies and I can tell you without hesitation, they are great! Twins, too? You'll be a big part of their future, how lucky for them and you. Getting this virus destroyed before they're born. It will be a new, healthy future for everyone. It's going to be a year to remember smile

I'm so happy to hear your news was well received by your son. That's a difficult choice sometimes, but it's reassuring when it goes the way we hope. We fear the unknown and then find out the answer was easier than we expected. Life can be difficult... You did good and I'm proud of your son for making his Mama proud!

Tigerlily · Member

Hello All,

I found the courage to tell my oldest son about my diagnosis and he was very supportive. Something I was afraid would not be, but it is all good. AND he gave me more good news as well. Seems to be that I am gonna be a Gramma for the first time. But not to one baby but 2!! TWINS, how exciting. Just needed to share my positive day since I have had so many bad ones. AND I thought why not share with you guys as well.

JimmyK · Guru

Greetings Leslie.

The water thing for me was a challenge. As it was, I was not drinking enough in my day to day life but knew I had to while on treatment.

Watermelon, Coconut Water are very helpful. I would take 2/3 Coconut water and 1/3 Raw Cranberry juice and that for me was a great way to break the monotony.

Coconut Water also has the benefit of potassium.

High usage of just water can deplete a person of sodium. All my brothers and sisters here are Water Champions when it comes to treatment plans because it is PROVEN to reduce side effects. You don't want however to deplete necessary electrolytes and minerals because that too will leave you feeling pretty lousy. I believe the key is to be conscious of the increased water intake = increase in piss ( for lack of a better term ). So mix it up without a bunch of sugar. I found Coconut Water to be among th ebest for this purpose.

Regards

JimmyK

Tig · Admin

Hi Leslie,

Check the genotype off the need to know list! GT 1a is now one of the easier genotypes to destroy. Wasn't too many years ago it was the most difficult to treat. You have a low viral count, but they don't consider the quantity any sort of of obstacle. A viral load under 6 million, may qualify you for a shortened course of treatment (8 weeks instead of 12).

The fibroscan is easy. Don't stress over that. The hardest part of that test is the drive to the office to get it done. It's a reliable and quick way to find out what your fibrosis level (F score) is. Get a copy of the results when available and save it. Save a copy of everything!

Get a good portable water bottle, something that will keep your drink cool and start living with it. If you start sipping all the time, the quantity seems less of an issue and you'll meet your requirement easily.

You're already doing great!

Tigerlily · Member

Well my genotype has resulted. 1a. and VL is now 288000. (Sig line updated). Have fibroscan scheduled for Wednesday of next week. Still having trouble with social anxiety, but working on it. Trying "dry runs" of drinking a gallon of water a day, not having to much luck with that. But I am trying and hopefully will improve before I start any treatment.

Canuck · Guru

Hey TL,

Well, all that DOES sound very good!! Great you will get the fibroscan soon. Nice you like this doc and good if you can afford to stay with him - so far so good! Very important to feel better/safe with your doc, makes a big dif. Glad to hear the celexa is working out (what dosage per day?) - maybe this celexa WILL be of help - wait and see. It's always scary "new things", "entering territory we are just unaccustomed to having to deal with", isn't it. You have suddenly had a lot of new scary stuff and demands placed in front of you right now, but in hindsight, when you get a little further along in the process and as you are getting cured, and afterward you will fully realize what good, positive things you have accomplished. Things are looking up, you'll be rolling soon, it shouldn't be too long and you will start to get some of this stress behind you.

Did you and this doc ever get to go over your current immunity levels for hep a/b (or influenza or pnemoncoccal)? Also, ask if you can have an abd. ultrasound.

Hey, glad to see your sig line! Thanks for doing that. Stuff can be changed/added as results come in.

And thanks for explaining pre-certification - I was wondered if that's what it meant.

That's a good idea, Tig's suggestion, to check those co-pay/funding links and then with your doc, if see if there is any assisitance possible being that you are paying something out of pocket for this doc. Leave no stone unturned.

Hope you are feeling a tiny bit of relief, just seeing and liking your doc, and getting the process further rolling along. Good job! smile C.

Tig · Admin

Outstanding!

You are progressing in splendid fashion! Get all of these preliminaries out of the way and then get down to some Dragon stomping!

If you have any medication copays you will be responsible for, the blue link in my signature has a list of organizations and manufacturers that may cover those costs. Be sure to check with the drug manufacturer before your doctor orders your drugs.

Let's get ready to RUMBLE!!!

Tigerlily · Member

Yay!! Fibroscan scheduled for next Wednesday. It has begun I guess you could say. Canuck I will be staying with the "plan B" Doc even though he is Out of Network for my insurance (means I pay more out of my own pocket) and I don't mind. He made me feel very comfortable and safe. No results on Genotype or second VL as yet. Seems like everything takes a week. Also doing better on the AD (celexa) gonna stay on the lower dose I think. Hope all are doing well out there!!

TL

P.S. precertification for insurance- they let you know its okay to have it done and to pay for it. Or something like that.

Canuck · Guru

Tigerlily wrote:
Hello everyone!!
I went to see the GI DOC today and found that he is very knowledgeable and just all around good doctor. I was concerned about that. He has given me more hope. Ordered labs for genotype and viral load, check-done. waiting results. Calling for pre-certification of fibroscan from insurance. waiting results. Will know more soon. Guess all in all it was a better day today then yesterday when I did not have any energy to get off the couch. Any thoughts as to how to stay asleep at night. It;s like BOOM!! 0200 am and I am awake and cannot get back to sleep. Have started antidepressant, not sure how I like it. Makes me feel very strange. I started on low dose and am afraid to go up. EECK. Any thoughts about that?
I just to say all of yall have been very supportive and helpful with all of this. I truly would be lost if I had not found all yall.
TL

Hi TL,

Well, I'm so glad that visit went well. So, this doc did help (in various ways) but IS he going to be the one to continue on with you, or (due to your insurance), will you still be seeing and end up going with the original doc you were previously booked to see in June?? If you end up seeing the June doc for the rest of your care, just make sure all your results also end up going to both you and the June doc.

So, good, you got some more lab testing orders out of this doc today (GT and VL). But I am not completely clear about what you mean by "pre-certification" for fibroscan - you mean this doc ordered you a fibroscan, but you have to wait until insurance says they are OK with it, before you can book a fibroscan appointment? I'll assume so. Did he order any other labs for you (aside from GT and VL)?

Hey, I know it is early days, but it is still easier for people to converse and respond back and forth with you, when you have a "signature line", even if it is "incomplete" at this point (you can always update it as you go along, as more info comes in).

See the red link line (in Tig56 signature line) - the "how to" do up a signature line. Maybe something like .... "Age, sex, Dx on such and such date, GT still in process of being determined, one pre-treatment ALT was 78, AST 48, VL 485,569 (Log 5.69), still in assesment stage prior to treatment approval - no fibroscan or ultrasound done yet. Might have contracted HCV (aprox.) date (recently, many years ago, decades ago, whatever)" ...

About the anti-depressant - what did you get, and how much, how often? How were you instructed to use them? Well worth a try, obviously as both you and your doc thought you may be better off trying this, and indeed you may well benefit from them - no way to know unless you try them as prescribed.

Fatigue (and sleep disturbances/alterations can occur) - they are frustrating and counter-productive, not much can be done to combat these things - just the common sense things you can think of - with fatigue one can feel compelled to sleep, rest, nap during daytime and this can also disrupt your normal nightime sleeping rhythms - plus, just the stress alone, of all you are going through right now, affects how you would "normally" be sleeping/resting otherwise. Possibly, the anti-depressants may also be helpful in this disturbed sleep pattern thing, who knows! I hope so. For a long period my fatigue was so profound, there was no way to control my sleeping/napping during daytime, all my patterns of sleep were warped, but all on the side of waaaay too much. I was just too fagged (day and night) to remain awake for long periods during the night, even with all the daytime sleeping I did!. Everyone is different. Try to do what you think is logical and will work for you to relax, rest, deal with fatigue AND sleep through the night. Even on an otherwise unavoidable "altered" sleep rhythm, as long as you are listening to your body as far a trying to obtain "enough" rest, that is the most important. If you were a "normally" diurnal type person, just keep mimicing the same diurnal patterns you previously held, meals at same times of days, work/walking/activities during days, relaxation techiniques evenings and before you bed yourself. Just try to encourage your mind and body by whatever methods you can employ to continue "some semblance" of a normal pattern/routine.

PS - gone out of town for a test should be back, late tomorrow night? Later. Hang in there girl! - glad you got done what you got done today - good deal, progress! C.

Tigerlily · Member

Thanks Womyn for the info. I just started them, a week in....am sticking with it though. Will see how it goes.

womyn · Member

Hey Tigerlilly...I'm a newbie but have some experience with anti-depressants. I've been on them for quite a while but tapered off them due to Gaining 30 lbs...of course age probably had something to do with that too...and the tiredness I have. had to go back on them due to my "anger/aggravation issues which is one thing antidepressants fix...so this second time they prescribed me Cymbalta...it was great, made me calm, relaxed, helped with the anxiety and was not the kind to cause you to gain weight. but there was one side affect (the sexual kind) that I refused to live without so they switched me to Fetzima.

are you taking either one of these? If you don't feel right on them ask to change after you give it 4 to 6 weeks. All antidepressants dont work for Everyone.

they are suppose to be totally fine to take with Harvoni too. from what I've experienced , I'm glad to take them.....Anyways, hopefully some of this helps.

Try not to worry too much about being positive the treatment is soooo easy compared to what they had to do just a few years ago!

take care...

Tigerlily · Member

Things are moving in the right direction for sure. Just couldn't wait til June to see the GI doc and I am glad I didn't. As far as the ADs I will do as the doc says! Thanks JimmyK

JimmyK · Guru

Howdy TL.

Sounds like things are happening in the order they should and that is great news. Your Doctor is folloing the proven path to the cure.

Regarding Anti-Depressants there is no one here qualified to answer much in that regard. As always we advise to follow your Doctors instructions, in particular if you know you have a good Doctor.

Days are up sometimes and sometimes not. You have better days ahead as I see it. wink

JimmyK

Tigerlily · Member

Hello everyone!!

I went to see the GI DOC today and found that he is very knowledgeable and just all around good doctor. I was concerned about that. He has given me more hope. Ordered labs for genotype and viral load, check-done. waiting results. Calling for pre-certification of fibroscan from insurance. waiting results. Will know more soon. Guess all in all it was a better day today then yesterday when I did not have any energy to get off the couch. Any thoughts as to how to stay asleep at night. It;s like BOOM!! 0200 am and I am awake and cannot get back to sleep. Have started antidepressant, not sure how I like it. Makes me feel very strange. I started on low dose and am afraid to go up. EECK. Any thoughts about that?

I just to say all of yall have been very supportive and helpful with all of this. I truly would be lost if I had not found all yall.

TL

Canuck · Guru

Tigerlily wrote:
C,
Thanks for all your kind words of encouragement. I cannot wait til Monday to find out what my choices are. I only just found out that the DOC is not in network with my insurance but I am going anyway!!! I think it is worth the additional cost at this time. Maybe he can recommend someone who is in network. May I just add how much I loathe insurance and how it all works. SO fingers crossed.
TL

Hey TL,

I've never mastered (exactly) how your insurance/doc systems work down there in the US, but I assume you have to pay to see this "Monday"doc (the Plan B doc) that you lucked into - just having to pay for him though is too bad! But I agree (even if you do have to pay extra to be able to see this guy, and can afford to pay), maybe it would help you, to at least to have someone knowledgable to talk too sooner than the June doc (the Plan A doc).

Perhaps he will help you sort what hep doc is best to go to (amoung perhaps you gaining other informational things), maybe somehow (again I don't know how it works there) there might be a way he will be able to continue seeing you? But, as back-up, (the origiinal Plan A) you do already have that "June" doc appointment, still booked and in the waiting - right? Personally, I like both Plan A and B, whatever helps and possibly speeds things along. If you already know, or are convinced this Monday doc will not be able to be the one to continue seeing you, then (Like Observer advised) keep your foot in the door for the June doc (phone and keep checking your name remains on their "cancellation list"), just in the off chance it turns out the June doc can see you (maybe) sooner than later.

Maybe this Monday appointment will at least enable you to walk out of his office with some requisitions in hand from him, to have an abdominal ultrasound and to have a fibroscan done, or maybe some more work-up lab work done (such as hepA/B immunity levels for instance if necessary) - things that may be required anyway to get the process moving along, and, anything you can get started/underway/or done (pre-requisite tests for treatment) then the easier/faster it will be for doc #2 to have these results sooner and to ultimately apply for your drugs sooner. Be sure any results (from any "tests" that doc #1 may order for you), will be made available to you, and ALSO, to whomever ends up being your perm. hep doc. C.

Tig · Admin

Hi Leslie,

An important thing I can share with you is, we have all been where you are right now. We were all shocked and a bit overwhelmed by the news that we had this scary sounding virus. I found out in 96 after a surgery. I suspect I was exposed by unsterile tattoo work or during my military service. It doesn't matter how we got it, but rather that we get rid of it. I was shocked and as I looked back I recognized periods of time when I felt awful. Many of those phantom and not so phantom illnesses were related to this progressive disease. As much as I was unnerved by it all, having to tell my wife about it and wondering if she or my 6 year old daughter were exposed because of me, were the thoughts that kept me awake at night. Then I met my Hepatologist and he explained this is a very difficult disease to give to your family, either vertically (mother to child) or through household exposure. It's rare, so put that out of your mind.

What you did in a past life is just that, in a past life. It sounds like you have a caring relationship with your family and as difficult as it seems to tell them, it will free you once you do. If you don't want to share what you think brought this on, don't. There's no rule that says you have to. The fact remains, a huge number of people never know how they were exposed. The importance of testing and treating is all that matters right now. The people that know and care for you will be concerned for you, just as we are. It's okay to be upset initially, but do your level best to not let it overwhelm you. This is totally curable now and fairly easily I might add. Share your concerns with your doctor, they can help get you beyond the fear in a number of ways. Education is your ally.

You should also know there are nearly 4 million people in the US infected with Hep C. Data indicates there are many more and 70% of them don't even know it. In the last 5 years, new cases have tripled. Suffice to say, there are more people around you that share this dilemma. Don't believe for a second that you're alone. That's why we encourage everyone to get tested and especially those groups with the highest probability. I wish we could get the medical community to recommend Hep B and C testing for everyone, regardless of risk category. When we have 70% of the current chronically infected people still in the dark, changing the approach to screening just makes sense. The antibody tests for B and C are cheap. Early discovery can save people from the problems many of us experienced after decades of progression.

So, please look upon this with new eyes. A day will soon come when you are happy that you found out. It may seem hard to believe right now, but trust me, after you get through this and your health is on the mend, you're going to have a big sigh of relief. I guarantee it. Been there, done that. You stay with us and if you feel like venting, crying or yelling, allow us to help. That's why we're here...

Jaggles · Senior Member

It was difficult at first for me I was so engulfed in thought and became really emotional. I wouls cry and get down about myself. I felt the same when out and about, like I was the only one with this and no one knew my deepest thoughts , what I was going through. I was tired and in pain, in the end I went off sick as my genotype progressed rapidly once I became chronic. I actually had forgotten what normal was like . I got so ill had to cancel a once in a lifetime holiday and on the day couldn't get on the plane. It was tough but I got a lot of advice here and realised I was not alone. I also called hep c trust in London who were great. i accepted that I needed treatment asap and that it was going to be a wait until treatment sorted. I'm not kidding, after 1 week on treatment I was starting to feel things change ...not so emotional, more energy and clearer vision, rational thoughts....my advice would be keep pushing for the best treatment ....in my opinion, Epclusa . I have had virtually zero side effects ....it's amazing and I'm nearly half wY through. be kind to yourself and eat healthy, drink lots of water and lay off alcohol totally....as soon as I knew what I had I didn't touch a drop. Stay focussed on getting treatment and being kind to self...try and laugh a bit more....sleep as much as you need. Be kind to self biggrin you're going to beat this !!

Dont fret about the past, we cant go in that direction .....it's gone....stay focussed on changes you can make for a better future

it's scary but ...getting it now when drug regimes are easy makes us lucky ...stay positive

wishing you strength and determination xxx

-- Edited by Jaggles on Saturday 13th of May 2017 05:04:29 PM

Tigerlily · Member

When do you start feeling "normal" again. It seems like this is all I think about day and night. I can't seem to get going to get past it. I think about how I should have done things differently and I would not be where I am now. I really want to get on with my life but it is weighing me down. Went to my nephews graduation and I had to leave because I became so anxious "knowing" i was the only one in the crowd with C. I can't sleep, I can't eat, and it is really hard to get up and go to work in the mornings. they say ignorance is bliss and I totally get it. But I also know that it is better to know at the same time. Any suggestions on how to get past this? How do you forgive yourself for what you have done to yourself? I come on this forum and I see so many people who are so encouraging and it does help a lot. I have been to the DOC ad she has started an antidepressant but it makes me feel worse in a way. I know it takes time to work but getting to that point is difficult. Thanks in advance for letting me have a place to say these things without fear. Maybe if I can write it all out it will help as well.

Jaggles · Senior Member

Hi TL...glad to see you are getting through this. I too was terrified my daughter's could have it from me especially as when diagnosed we found out one of them was pregnant. They both got all clear...and my partner of past 15 years...got clear too...it's best to find out either way and know so treatment can commence. the stats that Tig mentioned were also a big help for me in terms of NOT fretting too much. The anxiety you had (broken heart) I really felt like that too..bless you I empathised with you so much....I .didnt know who to tell straight away and was scared of response and confrontation, rejection ... That time taught me a lot about love and trust ...I am now half way through Epclusa journey and undetected at 2 weeks with hardly any side effects.. I can tell you that I felt better very quickly and I'm sure you will too and soon. One day at a time but keep your mind firmly set on getting through this and doing what you have to do...don't fret about anything as that makes you feel worse and isn't good for you. rest. , take care and be kind to yourself.....big hugs and good luck Monday xx

singsong · Veteran Member

Hello Tigerlily, I was married for 35 years and had 5 children. None of them contracted HCV.

When I found out I had HCV in the '90's - giving blood, I originally thought I was a goner. I thought I'd never see kids get married (2 have). I thought I'd never see my grandkids (I have 5). If you have been diagnosed, this is the best time to be cured!! Anna

Tigerlily · Member

C,

Thanks for all your kind words of encouragement. I cannot wait til Monday to find out what my choices are. I only just found out that the DOC is not in network with my insurance but I am going anyway!!! I think it is worth the additional cost at this time. Maybe he can recommend someone who is in network. May I just add how much I loathe insurance and how it all works. SO fingers crossed.

TL

Canuck · Guru

TL,

Well good for you, being brave enough to share your load of worry and circumstance to your sis, AND, to tell your Mom given your limited relationship. Nice your sis responded appropriately. Sometimes people do not know what to do, how to react, end up being "not a plus" to you. It's a very personal thing, who you end up deciding to tell or share with, that you have an illness. Sometimes it helps (a lot), sometimes it doesn't (at all), sometimes it is just necessary. People always have the ability to surprize you or disappoint you, when presented with a situation. I have a very dysfunctional bunch of folk around me for family, I told not one of them, and likely never will. They would not have been of any help whatsoever to me, so that decision was easy-peasy, I spared myself that added burden, and I certainly spared them concern, and (I know) the flailing-around actions they would have tried to muster in response. My partner was my rock, I can't tell you how lucky I was (am) for him, in my circumstance! A really nice guy with his head on very straight. It IS really nice when you have at least one of these kind of people close to you to rely on when you need some "back-up". Glad your sis may work out in being there for you from time to time.

We have had others here who ended up being surprized at how good or bad it can be to share with others, employers/friends/family, etc., I love hearing about the (quite a few) ones that pleasantly surprized people (finding out who turned out to be open and supportive - it does happen! For some, it was their own sons/daughters who made them so proud of how they handled it all, and found their kids were were touchingly astute, beyond expectations!

It WOULD BE rare that any offspring you have birthed, partners or family you have domestically co-habitated with, could ever get HCV from you. Have a frank discussion about it with your doc for his advice on it.

I did not know I had been packing HCV for over 40++ years, so when I found out, of course I was concerned about my partner of 30++ years (even though I had quickly leaned how rare transmission to family would be). For him, it was simply "a matter of fact" thing, to have an antibody test. Of course he was negative for the antibody, the only thing I ended up feeling bad about was that the doc (mostly just to protect me) brought both of our immunizations up to date (to the max), so we both had to have the full series of hep A/B immunizations, pnuemoccocal and influenza vaccinations. He was already up to date on pneumococcal and influenza, but we both did the A/B series together.

HCV packs stigma, and it shouldn't. It is simply an unfortunate infection that can be dealt with, family members around you are required to do little, except maybe be tested for the C antibody, and maybe they might be required to bring their immunization up to date (just to lessen risk of giving you any other infection that they may happen run into).

We had one fellow here labouring over telling his girlfriend that she should have a C antibody test, because he found out he had HCV (it ALL ended up being just fine), but during his initial struggle with it, I suggested this dif. scenario for him ... imagine "what if" ... she tested postive for the antibody, "what if" she found out she indeed had HCV, "what if" it turned out that she owned a totally dif genotype than he had! It's just an infection!, so many people will NEVER know for sure how, when or why they got it - there should be no stigma associated with contracting hepatitis - it is simply a potentially serious infection affecting you and you liver, whether it be A,B,C,D,E,F or G!, they are all unwanted, with the drugs we have at our disposal nowadays to quickly cure the C variety, the only burden should be in obtaining the C antibody test! C antibody testing is simply "a routine, wise thing to do", everyone should know whether they do or do not have antibodies to C (I think) - and only the antibody test will tell that.

I'm so so glad you got that earlier appointment with doc on Monday, I hope he/she is nice and helpful. Take or discuss ALL of your own immunization info with the doc, as well as your son's (whatever you have, or know) and talk it out with him (specifically) about having your son tested for the C antibody and any immunizations that "might "need to be brought up to date (for either of you), ask if you or your son need to have your immunity levels for A/B tested for, and what immunization you both might plan on getting (including influenza or pneumoccocal).

Also, write down and take with you, for the appointment, a list of your most burning questions for your doc - you may forget things once you are in there - you still don't know your geno-type and sub-type, and what drug "choices" he may already be considering for you - ask if you can please have an abdominal ultrasound and a fibroscan, and ask if you can please have all copies of your results (past, and future) for your own records at home.

Your young man may just surprize you, in just how blase and unstigmatized this newer generation is, in understanding/knowing how people now are commonly being tested for C antibodies. And, as a bonus he may just surprize you with some empathy for what you have been going through, worrying about him! Oh a Mom's job is never done eh?!- no matter how old they get, they are still our babies, always to look out for them - even if they are 6'2", it's a given. wink

Hope you are trying to sort everything into perspective to help you feel better about things. smile C.

Tigerlily · Member

Tig56, thanks for that information. You guys find the best stuff. Makes me feel quite a bit better about it. One can only hope he is free and clear. Just having to have "the talk" Is also wearing on me. But day by day I seem to be coming to more terms with the situation. Thanks again! Would be quite lost without all of you guys and gals.

Tig · Admin

Here is some additional information you might find useful. The risk of passing this to your son is very, very low. In my four years here, I can remember one or two people mentioning that they thought they had contracted it in childbirth. Those odds are somewhere in the 5% range according to research. I believe that number to be much lower. We just don't hear much about it occurring. The test for HCV antibodies is easy and can be done at the doctors office in many cases. It is available here at the local pharmacy for an easy DIY test at home. One of the hardest parts of this is what you're mulling over in your mind. Do your best not to go there. I believe he will be fine. When your thoughts go low, think of the absolute rarity presented here and consider the positive!

HCV & Women

Vertical Transmission

Tigerlily · Member

Hey C.

Son is 22 years old. He is the only kid I have left that lives with me. I worry about him the most. He is post "past regrets" the first three are "pre-regret" if that makes any sense, without going into so many details. I have told my sister after great heartache wondering if she would disown me, and she didn't which is my saving grace. She has been very helpful and my rock. I don't know what I would do without her. While in hospital I did tell my mother, I am still not sure if that is a good thing or not. We have been estranged for a while. I am waiting to see what the GI says about the boy though. I am sure that he will need to be tested.

Heya Observer,

To know that your children and partner are free and clear must be of great relief. Stress what an ugly word. I am trying to remind myself that I cant change the fact that I have this crappy dragon to start with but that I can be rid of it.

Everyone on this forum have been especially supportive. Glad I found it!!

Observer · Guru

Heya TL,

I gave birth to two children after getting my tainted blood transfusion (having my first child), I breastfed all three, shared bites of food, shared baths (no privacy for mom... wink ) ect. So...when I got diagnosed, I too was very worried so I had them and my partner all tested. They are all fine, luckily.

Stress isn't going to help you so please take care of yourself.

A

Canuck · Guru

Hi TL,

Believe me, we can ALL be our own worse enemies, it is so easy to do! Best enemies in the world can sometimes be ourselves! The hep C foe is actually overrated IMHO!

Sorry you are going through so much stress. This whole deal IS stressful, but you will see, in the end, when you are finally cured, how much energy you had to waste in fretting while you got to where you needed to go. The routes our journies take us are sometimes just unavoidable, and we all deal with it in our own ways, either accepting things or labouring with them all the way, sometimes both at the same time! (I always tend to mix things up a bit, before I'm through with them)! I had at least one major melt-down on my way to treatment!

Sorry you got the stay in the hospital, but so glad you got that connection to the hep doc that way! Weird silver linings!

How old is your son? Other than him, do you have others you live with? Have you shared your recent news with anyone, other than us and your medical people?

You just keep coming here, we will always try to help in whatever ways we can. smile C.

Tigerlily · Member

Yes, Google is my down fall. I am afraid that my past actions are going to affect my son and that is what I think about day in and day out. I have read the chance of passing it on to a child is low but it's still a chance. I do appreciate all the support from all of you. Just knowing someone who is going through this as well kinda helps me. I am my own worst enemy.

Tig · Admin

The realization can be intense for everyone. Do your best to understand you are way ahead of someone that doesn't know. The treatments are easier and waayyy more effective than ever before. You will get rid of it, the odds are highly in your favor!

I'm glad you're able to visit the liver specialist earlier. Get those tests completed and get started as soon as your doctor says you're ready. Your cardiologist assured you that your heart is in good shape, that's good to know!

Anxiety can be difficult for anyone. I hope that has improved now that you understand things clearer. If we can help explain things at any time, just ask and we'll do our best. Don't "over-google", much of the information can be dated and inaccurate or in a gray area considering the new, more effective and shorter treatments. Don't worry!

Tigerlily · Member

Thanks JimmyK, trying my best to do just that. ð

JimmyK · Guru

Try and calm down, you got this. wink

Tigerlily · Member

Well, just spent 2 nights in the hospital due to chest pain related to the stress of finding out about the hep C. Apparently there is a thing called broken heart syndrome and I have it. However the good news is that the cardiologist I saw recommended a GI and now I ave an appt on Monday instead of June!!!. AND it is good to know that my heart is working correctly, it just doesn't like all the extra catecholamines that were messing around. So on to Monday and to start getting on to treatment!! Glad there is somewhere I can relate all of this too. Thanks all.

JimmyK · Guru

Wow, good stuff. wink

Canuck · Guru

Hey TL,

Great - your hepB immunity level is over 9.9, 10 is the "technical" minimun required (we have up here), but 9.9 is extremely close, basically same thing, near to 10, and so, is great news (you DO have immunity) just how much is a nuance your doc(s) can decide they are comfortable with. The thinking is, that for some people, who were previously immunized for hep A and B, they can find the immunity levels can wane over time. Most people do not even ever know this (if their immunity levels have waned over time) as so few get ever get their A/B immunity levels checked again. There is an importance to know (for those of us with HCV) that we do have immunity to these other infections, as another infection added to what we are currently dealing with is very unwanted. Even with waning B immunity, you are still afforded protection, as most often we hold immunity "memory", just by the fact that we were immunized and hold some retained memory of the required antibody response to exposure. So, worry not, your doc will decide whether 9.9 is good for him and you - it may well be good enough in his book.

I was never immunized for hepA/B my whole life (until I discovered my HCV in 2015!), but I did have an actual bad bout of hepB in the '70's, I gained some B immunity the hard way, but still, when my immunity levels for A/B were checked in 2015, my B level was too low, think it was 5.6 or 6.7, so, I had retained some immunity by way of my prior exposure/infection of the '70's, if I had been exposed to B again my antibodies would have mustered some recogniion of this unwanted foe. It was found I had no immunity to A at all, so my doc wanted me to have a complete series of A and B (and influenza and pneumoccal), we eventually convinced my B level to increase (sluggishly) to be up to about 17, after 6 months of the A/B series, and I gained immunity to A as well. My docs decided to give me some "double dosed" (extra insurance) shots of B to ensure they took, and as quickly as possible. The 6 months of the whole series of A/B innoculations DID not impede my entry into HCV treatment, they were started before HCV treatment and competed during and after HCV treatment. So do not fret, if they say they want you re-immunized for anything, it is a good safe thing to do and will not impede your treatment start.

Look at those people in the store and count your very lucky stars, that you have found out you have HCV, and will be cured! Many, many folk do not even know they have it, can't possibly do anything about it. You are on the right road, you have been given the opportunity to get cured and safegaurd your future health, and at a time, thnakfully, we have the very best drug treatments ever! smile C.

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