Yes, I think I am sleeping enough, Tig thanks for asking. Im averaging 11-12 hours a day. Prolly 10-11 weekdays, but a solid 12 on weekends. 

Hi Hoodie,

Are you getting enough sleep? Even if you can’t sleep, try and rest with some white noise in the background. It helped me when nothing else worked. I also use Benadryl when the insomnia is less intense and Trazadone when nothing else does. Don’t push yourself to the point of exhaustion and don’t forget the FMLA time, if you need it. That’s what it’s there for. This is a one time thing, so get through it first and then regroup. Sometimes the thought of taking time off to care for yourself seems foreign, but you’d do it for your bestie or a loved one in a second. Think about taking care of my friend Hoodie right now!

Hi Tig, Im super fatigued. I have a theory: weekends suck for me because I isolate a lot. I think I get a little depressed on weekends. Weekdays believe it or not I am still super tired but less depressed so less BLAH. Does that even make sense? Going back to work tomorrow and its a short week. hallelujah. 

Hey Hoodie,

Where are you? Time to check in and tell us how you’re holding up. I hope things are going well and some of that fatigue has let up. Hydrate!!

good to hear you are resting as you ride the train to wellness

Thank you for asking after me my friends. Im super tired. Looong day. Gonna hit the sack now and will write more in the morning when Im fresh

nighty nite

In my opinion, the HAV vaccine is safe. All vaccines can result in a temporary reaction, as it encourages the development of antibodies against the intended disease, but entirely safe. Of course, it's entirely a personal choice, but for people that are afflicted by other diseases, we have to be proactive in preventing them if possible. I recommend everyone visiting our forum or otherwise, be vaccinated against A and B.

HAV Vaccine Safety

I'm a little concerned about getting the vaccine too Hoodie and personally won't even consider it until after treatment. (Trying not to have too many coctails in the body!)
Did you ever get your viral load test resubmitted? Or perhaps I missed your post on that? Wishing you the best
Bb, Iris

Hey Hoodie,

I want to know how you’re doing? Are you keeping up with your water intake? I hope the aches are letting up a little and work is going easier for you. How is the smoke from the fires affecting you? Stay in the AC when it gets bad. You don’t need respiratory issues right now. Each day is one day closer to the success you‘re working so hard for, keep it up!

Plenty of time to get your immunizations after you have finished treatment, Hoodie.

Youre doing great

Hoodie,

Go by what your doc suggests - as long a both you and he have discussed all of this thoroughly and know what you are immune to or not, let him dictate what immunization you should have had completed prior to your hep c treatment, or during treatment, or after. 

With anyone having hep c, as long as they have it, as long as their livers and health resources are compromized, being overworked, being taxed, are the reasons we want to ensure we are protecting oursleves from ANY other kind of infection or illness, or disease process on top of what we are currently already having to deal with, period. Got hep c?, well then, we hope that that same body does not to have to additionally fight and cope with a cold, flu, pneumonia, infection, any extra stressor period - your liver and body already being very busy/pre-occupied having to use your valuable health resources to deal with the hepc interloper. Catching another hep (or having another form of a liver effecting event) happening on top of already having hepc, is a recipe for disaster. It is a potentially lethal double whammy that should always be avoided if possible (catching another kind of hep on top of your existing hep). A or B on top of C can be very bad, or mono, or drinking, or certain drugs on top of C can be very bad for that matter!

The whole idea behind knowing whether you are immune and/or assuring that you are made immune to other heps when you have C ... is prevention.

Preventing any possibility of contracting another hep on top of your hepc. That is why immunity screening is done pre-treatment, and that is why immunization is done pre-treatment (or sometimes initiated during hepc treatment if immunization needs to be done and is started late), generally you are NOT afforded any extra protection (it is not preventative) if you lack immunity to another hep while having C, but instead opt to wait until after your hepc is gone, before increasing your immunity to A or B. Just doesn't make much sense to wait if your immunity is lacking (as far a prevention goes) to be seeking higher levels of immunity AFTER you no longer have the C. Jes sayin. 

But being immune to hep A/B is good anytime, even if you don't have C - as there are unexpected outbreaks of A here and there and everywhere, and who knows exactly how a person CAN sometimes pick up hep A or B (just like sometimes we never quite figure out HOW we got C in the first place, B can spmetimes be a bit of mystery too!) - ya jes never know! So ... immunization is really your docs call. Some of us might have sustained high levels of liver damage even though we are cured of our hepc, holding good immunity to A and B is a very good thing, if you are a hepcfree but cirrhotic.

While you have hepc is when you are perhaps at the most vulnerable to additional ravaging damage that contracting another another hep could cause to your liver. You and your liver and body, as a whole, is compromized once you have hepc, and considering how much damage has already been sustained to your liver, any additional stress to it would not be good. There have been cases where an additional hep infection on top of C and or on top of an already damged liver, has resulted in fulminating conditions with poor outcomes. Never worth the risks if there is a way to minimize them. Anything a person can do to prevent another disease process from harming us and our livers, even one iota more, is a good thing.

Just discuss your immunities thoroughly with your doc and do as he advises. C.

Canuck wrote:

---

I forget where you are at, you mentioned (at first) you had no B immunity, then it was decided you only needed to bring your A up to snuff? Whichever it is, you can go ahead and do it while you are being treated for C. Ideal if all that (assessments and vaccinations, as required) had been done prior to your hepc treatment starting, but many have had their immunizations brought up to speed during hepc treatment.

---

You recalled correctly. Im not sexually active so I have almost no risk for B I think. Right? And I dont know what my risk for A is. I would like to wait on all my vaccinations until my cured status at EOT 12 weeks. It seems prudent to me given the risks but I welcome feedback on that. 

Hoodie,

Further to your query about hep B re-activations (after reading those articles in the other thread), it's a rare and unlikely event (B re-activation). The articles are bascially to reinforce that none of us ever want to be put in the position of ever possibly having more than one hep at a time (or at all)! Immunization to hep A and B are important, anyone with hepc or any other kind of liver disease/condition should be assessed for their levels of immunity to A and B, and if not immune they should be vaccinated to achieve immunity.

I forget where you are at, you mentioned (at first) you had no B immunity, then it was decided you only needed to bring your A up to snuff? Whichever it is, you can go ahead and do it while you are being treated for C. Ideal if all that (assessments and vaccinations, as required) had been done prior to your hepc treatment starting, but many have had their immunizations brought up to speed during hepc treatment.

I would just ask your doc if there is any urgency (at all) about how soon your tetanus needs to be done. Aside from my hepa/b immunity, my doc was much more interested in making sure i had some flu and pneumococcal vaccinations, tenanus never came up, at all. 

So, did you ever go in and start the hep a vaccination? And, find out how they think you acheived a sufficient level of immunity to B, maybe you were immunized in the past that you are just not aware of/recalling? C.

Hi Hoodie,

Stevia is a great sugar substitute. I’ve been using pure Stevia for a couple years and it’s better than sugar, as far as sweetening things like coffee, tea and on top of cereal, etc. I buy the store brand packets, nothing special, but look for 100%, not the blended varieties. I haven’t gone so far as to use it in things like baking and cooking, mainly due to the price. I drink lots of coffee, sweet of course and it really drops the calories and sugar levels. I’m not real worried about it, but for those that have to, diabetics, etc., need to. I think once someone avoids it, if they go back to using some of these things, their body revolts. The western diet is basically wrecking our bodies! Makes me want a Heath Bar Blizzard... 

PS: Thanks for the website, looks like they offer some good products. The green super food is an interesting supplement that I’ve been hearing good things about.

lamassu wrote:

---

I have been using Mood & Mind stevia in place of sugar  

---

 Thanks for the rec lamassu, that looks awesome! Ill order it on amazon. 

Hi Hoodie,

Have you tried pure Stevia extract? It is a glycoside not a sugar alcohol so no worries there. Not the overpriced packets loaded with fillers you buy at the grocery store. I have been using Mood & Mind stevia in place of sugar for over a year. Some brands have a slight licorice taste; this one does not, closest to the taste of real sugar I have found with no calories. You can also get it on Amazon and a little goes a long way.

Iris Dragonfly wrote:

---

whaaaaaaaat. How on earth does this slip by. Honestly sometimes I wonder if some of these dr.s really have their ducks in a row. 

         

BB, Iris

---

 Thanks iris. This was the lab tech receptionists fault and I am considering complaining because I triple checked with her that all required tests were accounted for. So it seems odd to me that it was overlooked and I probably will lodge a complaint. she was pretty unprofessional TBH and I could tell something was not right, hence the triple checking. my doc had ordered the tests but she didnt print out the label for the vial so the flebotomist  didnt draw the sample. 

-- Edited by Hoodietree on Thursday 23rd of August 2018 11:10:13 PM

Canuck wrote:

Sorry work is so much work - how did your meeting with your boss go that day ... a while back, you said he had called you in for a meeting with him for something, just after you had made some "mistake"? I hope it turned out to be a non-issue?

How are things on the constipated and/or diarrhea fronts - i am hoping for a happy medium, resolved or at least things are now under control? 

Did you have any more nights of lack of sleep, or was it just the one night?

Are you feeling like you are turning a corner on "sides" that are interfering with your work? Do you still think you might benefit from time off work, or are you thinking you will just be able to continue as you are? 

---

Thanks Canuck, I really appreciate your care and concern. That work meeting turned out to be no big deal. I think I was being paranoid. Boss didnt even ask me about my mistake, thank goodness. 

I had 1 day of diarrhea and in retrospect I think it was because I used an artificial sweetener called xylitol with erythritol. I normally tolerate that very well, but I quit using it over a year ago and this time I had a full day of terrible diarrhea. Wont do that again. Also in retrospect those artificial sweeteners are aka sugar alcohols. So while I only had about 1.5 tbs I connected some dots on that after the fact re: alcohols. Not a good thing to add during treatment I imagine? 

No, no more insomnia either. Just the one night where my mind was perseverating on some family dynamics needlessly. I dont know why but I started dredging up past hurts and was getting all pissed off for no darn good reason. 

so to summarize I really do feel like Im turning the corner on side effects and will take your advice to get the VL test done pronto. 8/17 was only 3 weeks into treatment so if I get it done this week that will be a full 4 weeks. I do not feel the need for FMLA but still want to fill out the ppwk anyway so maybe Ill get to that this weekend. 

i wonder if I could get ADHD meds for the brain fog and fatigue. That is actually still a big issue. Im sleeping around 10-11 hours a day. God I love sleep. 

whaaaaaaaat. How on earth does this slip by. Honestly sometimes I wonder if some of these dr.s really have their ducks in a row. I showed up at my appt. and they looked at me kinda blankly. "so,...why you here today?" Whaaaaaaaaaat, really? I thought. I had labs! I'm here for Results! (sometimes that word comes out resluts, lol Oooooops  I always check for my bad typos!) anyhoooo "I'm taking the pills", I blurted out,  "Oh so your on treatment"...she says, CRAP doesn't anyone read their notes?

Seriously             

Hang in there girl. 

BB, Iris

Heyhoodie,

Just my 2 cents.

Obviously your doc had arranged an early VL for you (at 4 weeks), as well as the EOT one, so, even though the lab missed doing this VL - I would never be able to (nor want to) wait (until later) to get the missed VL done! BUT, that's just me, I would just HAVE to know where i am at. Yes, true, you could opt to wait and yes true it might not make much dif if you knew you were UND at 4 weeks, but personally I could just never opt to wait - your doc ordered it for 4 weeks, so, i would just go do it. 

Sorry work is so much work - how did your meeting with your boss go that day ... a while back, you said he had called you in for a meeting with him for something, just after you had made some "mistake"? I hope it turned out to be a non-issue?

How are things on the constipated and/or diarrhea fronts - i am hoping for a happy medium, resolved or at least things are now under control? 

Did you have any more nights of lack of sleep, or was it just the one night?

Are you feeling like you are turning a corner on "sides" that are interfering with your work? Do you still think you might benefit from time off work, or are you thinking you will just be able to continue as you are?

That's what I have been holding out for for you, hoping for you  - that you will soon be "turning a corner" on some of what you have experienced thus far, and will find the rest of the course of anti-virals less taxing on you. Hope so.  C.

Thank you Scruffy and Tig!  

This gives me a little bit of autonomy in a world where I have practically none. So I will figure out when I want to get some great news and that is when I will go in and have the viral load test done. I am slammed at work so I will probably do it when my time and energy allows me to do it easily.

I am not scheduled for a second viral load test till the EOT 12 week mark, so this just puts the horses reins in MY hands. And in this metaphor the horse is a beautiful Appaloosa mare, running wild and free with a long flowing mane and tail!! 

I wouldn't worry Hoddie. Your numbers look good. With the new meds its pretty much a done deal. I would wait until the next pickup. Years ago as tig said tests were done every 4 weeks.

There had to be a certain drop in VL along with an eye on other numbers or they would stop treating. They would access if the benefits of treatment were worth the risks. Thats where the 

big fear of being undetectable or almost undetectable at four weeks came from.

Scruffy

A viral load at 4 weeks is nice for a morale booster, but to be honest with you, these drugs are so effective, you’ll be undetected in the end anyway and the 4 week test is a look into the current situation. Sometimes you are undetected early, often times not until later in the process. If you can hold off until the next refill, I’m sure you’ll be (just as) thrilled with the results. Used to be a requirement to have viral loads every 4 weeks, now many docs do one before treatment and not again until the 12th week after Tx ends! Now that would be torture! It’s entirely up to you and if you’re the impatient type, get er’ done now and see where you are in he scheme of things. If your insurance is willing to pay, go for it! It might even save you biting a fingernail or two, lol! Either way, you’re going to slay this Dragon, I’m sure of it.

So the reason I did not get my viral load is because they didnt test me for it! The tech apparently made a mistake. So now I have to go back in and get that done. She said I could wait until I pick up the next round of pills, should I do that? Should I give the Epclusa (Appaloosa according to my iPhone LOL) more time to do its job? Or if Im undetected will I be undetected right now? I really want good news dang it!

Good point observer! Ive never wanted to be //normal// or follow other peoples rules for me - EXCEPT if it is to my benefit!! So thanks

love that lil bear btw!

Your numbers look great...I never was one that wanted to be normal much ................except when it comes to blood tests...

in normal range is simply wonderful...of course they might fluctuate a titch here and there but in normal range is all that really matters with those enzyme numbers.

Thanks polo, youre giving me lots of hope. Man, what a slog its been!

Those numbers are awesome! They are better enzyme numbers than I had post treatment and SVR! Healing is happening for sure.

LOL made me smile again Tig!!

You know what, I reversed the numbers! Numerically dyslexic I think. My impression stays the same, they are well within normal limits and fluctuation within those limits is perfectly normal. Do I need to get out my 8 Ball again?  Not to worry!

Tig in truth my alt is 2 points higher this time but Im determined not to sweat it. Off to yoga but I dont feel like going. Pushing myself. 

Im smiling now Tig, thanks for your awesome encouragement. Nap time for hoodie TTYL. Hugs to all. 

Don’t let your mind go into places like that, Hoodie! Both enzymes are lower than they were, albeit both normal, they are very good nonetheless. It’s a win when our LFT’s are normal, a BIG WIN. Your baseline VL was relatively low and could be why your prelim enzymes were down. It’s not always the case, but very often we see a corresponding elevation in both, when there is a viral load flare. You have no worries, trust me... 

If your concern gets too much to handle, let me know and I’ll whip out my Magic 8 Ball. It has never been wrong! Let me show you, just to comfort you. I’m asking, “Is Hoodie, golden?”

See!

 OK I just Checked for new messages from Kaiser and it seems that I do have my test results except for a viral load which I think that they are gatekeeping. 

My ALT is 25 and my AST is 21, Which isnt much different from what they were before so of course now I am mind****ing everything. 

Ahh, the poop report.  Try thinking of it in the same way you would if HepC weren't in the picture.  Immodium for the big D and fiber for the big C, for example.  Again, by nature, we monitor this process so closely that every sneeze is cause for concern.  What we know is that changes will happen during and after treatment.  Focus on the big picture (when possible) and try not to take it too seriously (when possible) as it all will pass (so to speak).  I know, it'a scary.

You are doing great Hoodie.  It's just hard to relax when you're on a roller coaster, isn't it? You've given your own best advice - Hang On!

I can't wait to see the labs.

Hey Hoodie,

I‘m excited to know what your test results will be. The one thing you’re going to notice are the improvements in your liver function tests. If you’re undetected, that’s an excellent sign, but don’t be surprised if it isn’t completely undetected. One thing will be apparent if it isn’t, is the dramatic decline in your viral load. I let everyone know that an early undetected test is great, but doesn’t mean much if it isn’t. It will be. 

I mentioned in the Constipated page, the big D isn’t uncommon with these DAA’s and you can check with your doc for permission to use something like Imodium, if it doesn’t let up. Avoid high fiber foods while you’re having the problem, just don’t go in reverse and get blocked up again. 

Thanks Cheddy thats very sweet of you to say

Everything seems to be doing a 180 for me right now.

Where before I was constipated now I have diarrhea

Where before I could sleep 12 hours a day I actually had trouble sleeping last night and only got about five hours. 

Maybe this is due to the power of Epclusa. I think its doing its job and Ill be cured soon. 

So I cant complain. BUT along with the energy comes a feeling of anxiety which SUCKS. 

Im just holding on for the ride at this point  

I got the on-treatment bloodwork done on Friday 8/17 so I should know pretty soon, probably in just a couple days, if Im undetected. 

Hey Iris and Hoodie.  I love the way you two are taking care of each other.  

What a team - the whole to of us, too.

Iris Dragonfly wrote:

---

 I don't know if you meditate but I'm trying some affirmations and visuals within the meditation that has me well and full of health life. It's a bit of struggle sometimes because of the PTSD but little by little right?

Blessings, Iris

---

Thanks for the blessings Iris

Why yes in fact I do meditate!  I have this app called Insight Timer on my iPhone and there are tons of guided meditations and affirmations. I really love this one guy named Kenneth Soares. Check it out if you can! I think its only $1.99 or something. Its totally worth it. Let me know if you get it, we can friend each other and recommend guided meditations and stuff. Its pretty fun. Anyone here who wants to be my friend is more than welcome. Or not! Im not trying to promote it. A bunch of my AA friends use it tho and it can be really motivating.

yeah, I hear you on the PTSD. No fun at all. You doing ok? Hows everything at home, getting better I hope? 

Hey I get it, trying to get it all done, right?

I get that fear, what if, why does 'what if' even have to exist??? And that's a really good question, what are the variables to relapse? Is it specific to a certain genotype? male/female? geographic area? duration of infection? duration of treatment? where are the studies??? Is anyone researching this?

Hop on the roller coaster girl! lets go for a ride! Up and Down and a little twist and turn, exhilarating! and then a little nauseating! Whee Oooo, Ugh. then all of a sudden >PFssscht<(air brakes!) and then the real healing begins, we'll shake off the drugs, jump in a pool, ocean, lake or river and be washed clean. I don't know if you meditate but I'm trying some affirmations and visuals within the meditation that has me well and full of health life. It's a bit of struggle sometimes because of the PTSD but little by little right?

Blessings, Iris

Thanks for your wonderful update Tig! Have fun with those little rascals

Hey Hoodie,

You‘re right, don’t overthink these things! A little is okay, but don’t let it keep you up at night, lol! One day wouldn’t have mattered, but you’re right, following treatment by the book is what we should all strive to do. That removes any question. 

I’m still here with my daughter and the grandkids. They do keep me running! It’s about time to get them up and start the whole day again. I don’t know how my daughter does it by herself! 

Oh, here comes my grand daughter tromping down the stairs! The day has started before my first cup of coffee.... ready-set-go

Water report and a question about relapse

Yes, I have been drinking at least  a gallon a day. Its not hard for me, though, I actually like drinking water and staying hydrated. Or maybe its just the one thing in this crazy world I feel like I CAN control

Im reading here about peopke who for some reason the DAAs are not successful ... or the virus comes back (wtf virus, dont be a jerk just leave!). Do we know why that happens and/or how to prevent that scenario? Is it just how certain bodies/genotypes respond? Is there ANYTHING I can do to improve my chances for success? Continuing to avoid alcohol frex? Ive asked my hep/GI doc and the NP and the HepC pharmacist (who looks approximately 12 years old btw) and they all say theres nothing to do. Just take the medicine as directed. 

Do they really not know how relapse happens?! Are 10% of us really just unlucky?! I wish there was a way to ensure success. Im frustrated by this. 

ETA my heart goes out to all of us still suffering   and happy Friday!

-- Edited by Hoodietree on Friday 17th of August 2018 08:17:37 AM

Hiya Tig, thanks for asking! 

Things are ok. I had that one great day, and Im really hopeful that those great days will start stacking up. Im super hopeful

I went and picked up my 2nd round of Epclusa today because the prescription was ready 1 day early. I could have gotten my first round of on-treatment blood work done today while I was there, but I realized that my ppwk specifically states to get that done on 8/17 (tomorrow) and what if I got the blood work done and it was not favorable, you know? Then I will have wished I had waited until the proper day. Apparently I just really love overthinking things and making multiple trips to Kaiser! . Also, I really need to get a life. 

How is everything in your world? You spent some time with your little grandson? That sounds really lovely !!

Hey Hoodie,

How goes it girlfriend? I’m hoping you’re continuing to have more ”better“ days, than sh***y ones. Are you keeping up with your water intake? Chug a lug Sister!

Thanks Cheddy! That is really interesting how we monitor ourselves so closely for any and all ups and downs when were sick and on treatment. I will be so happy when one day I wake up and find that Im no longer putting myself, my moods, and every little ache/pain under a microscope. Thanks for your kind encouraging words!

Hoodster,  

Interesting to hear from so many how closely we monitor our day to day on and around treatment.  I don't think I do that as much in my "normal life" but sure did back then.  

Back then (note rearview mirror) many moods and moments seemed eternal and permanent and sometimesl unbearable.  Really intense sometimes (could have been Riba?)  Speaking for myself, the whole experience was indelible, in a good way - strength, compassion, durability, more.  And look at the friendships.  Who knew that "Virtual strangers" would become valued friends.

I hope the good days will propel you forward and this whole business will take on the perspective of an 8 week (?) journey, after which you help others keep perspective.

You're attitude is great!!

Bestest of wishes, for you.

Cheddy

Thank you Tig Iris Cheddy and EVERYONE

Interesting to read that it will go up and down. I guess I was expecting just a pure upward spiral. Sigh. Today isnt quite as great as yesterday. Must be feeling the the contrast between having a GREAT day vs just a normal day. At least its not a BAD day. Ill pray to God to Dog and all the dieties that my Bad days are in the rearview mirror for the foreseeable future.

Peace out   TYYL, will check back later. 

Hi Hoodie,

Glad you’re back on track and all things are better in your world! The FMLA is there for a reason and there’s no reason not to consider it if your energy levels drop to non productive levels. People get sick, people seek treatment and people need time to regain their strength, that’s what the act was designed to provide you. Take advantage of it if necessary. Don’t wait to stumble before reaching out for that support! 

oh hoodie! there is no such thing as melodramatic here on our HepC forum

and wow.. pms on top of daa's... omg,omg,omg! 

i'm so happy to hear you had good day and are still planning to get that fmla in your hip pocket in case you need it for next months pms... or other

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