Hep C Discussion Forum

UPDATE

I feel terrific today. Got my period before work at like 6am and I went all day with tons of energy - without even takng a nap in my car at lunchtime!!

I wonder if a lot of my fatigue and maybe even some of my brain fog are attributable to being peri-menopausal + HCV positive.  Im betting that combination is a special little circle of hell. 

So I apologize for being so melodramatic yesterday, yall I just did not feel good at all. You know that feeling of deeep fatigue coupled with the foggiest brain south of San Francisco? I really felt low. I knew I was being melodramatic and probably should have waited another day before posting that because today, Im literally a new woman!

:knocking on every single piece of wood that I can find:

No need to tell my boss YAAAAY!!! I was dreading that.

Thank You Thank You Thank You Thank You FOR YOUR AWESOME SUPPORT AND CARING   

Edited to add: 

Canuck wrote Don't play the stretching game of going until you break - hitting the proverbial brick wall, try being pro-active, and formulate a plan, in case you want to play a sick card with your boss in "some way".

What wording is already written on that note you got from your PCP?

This is really good advice. It was a verbal phone appt with my PCP the marvelous Dr Davis who I love. In a weird alternate universe he is my soulmate. Sadly that universe is not the real actual universe but I digress. 

Thanks for the pep talk Canuck and 5. I will plan to get that FMLA ppwk filled out so I can have it in my hip pocket if I need it. But I am optimistic for the first time in 18 days! maybe I wont need it, yay!

 

-- Edited by Hoodietree on Monday 13th of August 2018 11:30:45 PM

Hey, Isn't that funny hoodie! (Well, not FUNNY FUNNY, but weird/cooincidenta/funny. You posting this today and I was just recently wanting to ask you "how" work" has been going, how YOU were managing with work - and then ... you post about it! I had already decided I was going to wait until after Monday, maybe Tues or mid-week to ask you how things were going for you what with working and all, but now i don't have to wait - we have a pretty good idea it has not been easy and what bits are hard for you.

So, I cannot disagree with 5 one iota - you know best what your boss is like and what your co-workers are like - what it might take (words you "choose" to use/what "exact phrases" to say to them) to safely satisfy them. If your quest is to get them to be understanding that you are feeling under the weather, not able to be "on" 100% as usual, then make a plan about what to say to them that will work for you and still maintain your privacy and avoid stigmal judging. If you are battling an illness, they can either be understnading and cut you some slack, be on your side, should you wish some time off, or concessions - whatever it is that YOU decide WOULD help.  Maybe you don't need to address your co-workers hardly at all? - maybe it is just your boss you need to deal with for the most part - perhaps plan your explantion to him alone? - again, if you can see how he could be of some assistance to you (time off, being understnading, or cutting you some slack). Decide what it is you need and want, and devise what it is you are going to say to get it.

Don't play the stretching game of going until you break - hitting the proverbial brick wall, try being pro-active, and formulate a plan, in case you want to play a sick card with your boss in "some way".

What wording is already written on that note you got from your PCP?

If you are no good at formulating the right language - try some phrases (like 5 was suggesting) - maybe just that "your doc put you on an anti-viral until October" and you may not feel well on them, it may affect your performance. 

Then again ... you may start feeling like you are getting used to the epclusa in the next couple/few weeks, and will be able to muster through better in Sept/Oct.

Decide how you are going to hedge your bets and cover your arse (to the necessary perhaps varying degress) with your boss and co-workers. Would it really be the end of the world if you fall behind in the short term? Don't YOU be your own worst enemy and force yourself to perform under duress, when it would not be that tragic if things did not go exactly to plan (work plan) just for a short while.

Think on it a bit.

Consider this, rather than waiting and having this meeting with your boss at 1:30, perhaps ask to speak to him for just couple minutes at morning coffee time, or maybe first thing in the morning - just try to get a couple minutes with him prior to 1:30 - explain breifly that you just wanted him to know you've been put on some anti-viral medication that has made you feel not very well, that it has really knocked the ---- out of you, and that you apologize if it has affected your job performance, hopefully this will not happen further, and that you can bring him a doc's note if necessary, just in the event that you become feeling unwell enough that you need a day off, but that you hope he will have some patience with you for the next little while. 

You have got yourself worked up into a bit of a snit, and feel backed-up into a performance corner, a competitive self-employed corner, lots of pressure cooking going on in there, release some relief valve - it would be great if your boss had some understanding and cut you a bit of slack. You may be a more valued commodity than you realize at work, a valued long-term commodity worthy of some boss consideration.

The sides you experience may end up being really quite survivable, but with the self-imposed added stress you are going through it is too much to deal with - use this opportunity to try to cut yourself some slack.  C.

Hey guys, Feel like a slug in peanut butter As our dear iris so eloquently describes it. 

Need some encouragement to keep putting  1 foot in front of the other. Feeling so damn tired. I need my energy back soon. Made a huge mistake at work on Friday and my boss has scheduled a meeting for tomorrow at 1:30.

I have not told my boss that Im undergoing treatment. My PCP told me that he had not seen any good results coming from that kind of transparency- just a lot of stigma and judgement. 

Huge deadline coming up at work in October, on the same day that Im supposed to complete treatment. And they keep putting other meetings in front of that deadline so I cant actually work on my project and Im falling further behind every day. 

I wish I could state accurately what Im going through and how I feel. I dont want to sound so dramatic all the time, but Im trying not to minimize the very real **** that Im going through. Argh I know that that is really Not a good explanation, does anyone know what Im talking about?! How Im feeling?! Am I truly going insane!?

This is all my fault, I could have postponed treatment. But I feel like that would have been stupid. And now that I am experiencing side effects I may have to come clean with my boss. I think people will say that I probably should do that but I have made up my mind not to be so transparent with people who hold my fate in their hands. My AA program has taught me to be rigorously honest, but the A stands for anonymous And Ive made that mistake before in terms of blowing my anonymity at work, so my new methodology is to look out for number one at all costs and  hold my cards close to my vest contrary to my natural tendency.

When you look at my numbers, Im actually really quite healthy. This might just be a mind over matter thing its possible I will be hugely successful in October. I always have been in the past even though its like cramming for finals and if I fail I lose my job and my livelihood and my insurance and my treatment options

 

Some addl details re: parvovirus test  

I was complaining to my doctor about joint pain in my hands and feet so he told me he would test me for autoimmune disorders like rheumatoid arthritis, etc.  so thats why I was tested for parvovirus. It was the only positive result from a gazillion tests they did  

Tig provided an NCBI article whic states: //By the time old age is reached, most individuals demonstrate seropositivity for this virus (5, 13). //

I really think this is nothing, but Ill try to remember to talk to my doctor about it soon. 

 

Ha, Ha! It’s okay Hoodie, I understand completely! Did you want to post the same thing twice? The “force” is strong..... 

Hoodietree wrote:

---

Oh my goodness, I WAS WRONG - MEA CULPA!! 

Friends, Im an idiot. I posted in another thread around here some advice to a new member. I said and I quote //a gallon of water is 64 ounces and Im drinking 75 ounces a day so Im good.//

But actually a gallon of water is 128 ounces!

Will report back if fatigue improves upon DOUBLING my water intake as of today. 

I really want to blame brain fog for this one, I feel like an ever-lovin idiot!  LOL!

                

 

-- Edited by Hoodietree on Sunday 5th of August 2018 03:40:42 PM

---

 

Hey Chuck,

Here‘s a link I sent to Hoodie. It helps to describe Parvo a bit clearer. 

Hey Hoodie,

Elsewhere today you wrote of GI troubles and fatigue, and, about fatigue below.

When in doubt about taking anything with your DAA, always default to finding out from your doc (like you tried to do), and/or a pharmacist and/or refer to the monograph (http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf), and/or use a drug checker perhaps one like this one (https://www.drugs.com/drug-interactions/sofosbuvir-velpatasvir,epclusa.html).

Like i was writing to Woodie the other day (he had the opposite gastric problem as you) but regardless of which ways each of your gastric pendulums have swung, whether these gastric changes are a result of the DAA's, in all likelihood they can be combated/counteracted in short order.

Like you say, it is a little odd, what with the good amount of water you are easily able to tolerate and take in, and in an ongoing increased intake fashion, I did not expect to see you become constipated. But it would happen to me as well while on treatment. As you will see in Woodies thread where we were discussing diarrhea and constipation, I already had a pre-existing tendency to constipation so i cannot necessarily blame the epclusa/vox for continuing bung-ups, BUT I do very much believe that the need for water in the body is deceivingly strong when were are taking these DAA's - if you ever had a tendency to become quickly dehydrated or constipated in the past, this tendency could be contributing to what has occurred now.

Rule out some other seemingly minor contributory factors as well that may have helped to push you over the edge into the bunged up zone - decreased physical activity, extreme heat, diaphorisis, eating something that is know to constipate people. If any of these factors might have added something to the dilemma, try to correct them.

I had to be vigilent with the water, fruit and fiber (every day, without fail) - I wasn't eating large hoards of meat, but I found a really heavy bolus of protein meat meal like that could help bung me up for sure. For others they say cheese can bung them up. I took additional metamucil-like powder in my cereal (often shredded wheat) every day to try to prevent bad bung-ups. My ongoing "on-treatment" diet had to be LOTS of (really high) high-fibre diet and water, or else! If I screwed up on just one element, say ... traveling in the car all day to get to an appointment, then staying over out of town, I could easily become dehydrated, before I knew it  ... and would pay for it for getting on the too-dry side. 

Once you are at that bunged up stage (you will figure it out, what is needed in the immediate, and then in an ongoing fashion, through trial and error) but also give some consideration to the humble glycerine suppository - on occasion this lowly little thing helped me from time to time and facilitated getting me going when I was stuck!  

You and others had lots of good ideas of how to unbung yourself, try the least offensive, effective method that you think will work for you.

Like Tig said the stronger fatigue feelings you have right now may pass, IF the increased fatigue feelings is a result of the new-to-you DAA's working within you, it may be a stage, you may (later) easily get to feeling quite OK while you are on Epclusa, everyone is dif. - wait and see. The constipation issue is also a wait and see, if you fix EVERYthing else and have NEVER EVER had a prior tendency to constipation then I would say perhaps you will have to remain vigilent with your diet and intake right through treatment to prevent further bung-ups. I had profound pre-existing pre-treatment fatigue, unfortunately I did not realize any improvement in fatigue while on the epclusa/vox, but that was just me - everyone IS dif. 

Hope things start improving quick for ya. C.

Thanks Tig. If I can help Ill be more than happy to!

Hey Tig, Would it be possible to move this thread to the On Treatment area?  Just curious, if its easy to do, Id like to do it but if its a pain in the butt then never mind Thanks in advance either way

Hey hoodie,

Good for you. You are doing such a good job with everything. Water dept - check. Making sure you get all the labs/tests and immunization you need - check. Listening to your body re: fatigue and modifying sleep and exercise accordingly - check. I am glad you rolled up your yoga mat just for the moment. Guard your energy, dole it out with care, especially that you are working. 

One week done already! I know you said you were having troubles with energy (prior to starting the epclusa?), but I take it the fatigue is worse now?

I too had fatigue prior to treatment. While I was on treatment my fatigue certainly did not decrease one iota. Lucky are those who do start to have some degree of feeling better or more energy before treatment is over (it can happen)!, just didn't for me. It took me quite some time to see the fatigue improve, but it did and does. Everyone is different. Early days for you, pace yourself and see, you may yet gain some energy as you go along.

Don't fret and worry and push yourself to get things posted just for us, good that you got all these labs and tests done/accomplished, results will be forthcoming, post when you have spare time, extra time and extra energy - we are not here to make extra work for you! Altho you know we are most interested in you, your well being and all your labs, etc., we are happy to be patient and await the results when they are conveniently available.

Between deciphering what the U/S technician was trying to say, and what the radiologist might glean from reading your U/S, it should prove interesting what everyone sees. A giant kidney!, well, maybe it was just a few ounces too many in the water dept? heehee

For now, just do what you are already doing (so well), conserve your energy - portioning it out for work, getting as much rest as your body is demanding, and good on the water. You are taking good care of number one.

Yes, you could start an "On Treatment" thread, but you would have to ask Tig how to move all this thread over there (if that's what you meant) - I don;t think moving large threads over can be done or done easily. 

Later, C.

uh, did somebody say "beans", like ... kidney beans or sumpin?  

 

::DYING LAUGHING 5!!!::

Question: should I move/copy this thread from the New Members area into the On Treatment Area? Probably doesnt matter but I did have a hard time finding it to post tonights update. Oh well. ::

Thanks for all your wonderful replies and the beautiful support you all give me. Nothing new to report except that I drank about 100 oz of water today and have been peeing like crazy.

5/1 - Glad you like the screenshot idea. Silly me,  I was so proud of myself for thinking of it LOL. 

Nighty nite,

hoodie

-- Edited by Hoodietree on Friday 27th of July 2018 11:28:24 PM

hoodie, the screen shot is such a great idea , happy epclusa day to you

I have already had 25 oz of water and 2 giant cups of coffee and it is not even 8am!! 

I have 25-oz glass drinking bottles and my plan is to chug 1 every morning, noon, and evening/afternoon (at least 2 hours before bed). 

I double filter my water using a double-decker britta pitcher that I customized. Then I pour it into my glass drinking bottles using a funnel. The bottles are from Gerolsteiner fizzy water from Trader Joes (a popular store in the USA). 

So my water is pure clean and awesome. I really love it

Oops gotta pee - TTYL! Have a great day everyone!

Ah, lovely! Sweet dreams Hoodie! You got the best back-up-buddy-in-a bottle EV-ER on your side now. First pill past the lips. This is a wonderful "day 1". Sleep well, with a feeling of relief (I hope), knowing that this is the end of that old part of your life and on with the new you, free of this virus. 12 mere weeks. You are going to do well, I can just tell, you are a clear-headed logical, methodical thinker (despite feeling tired/fog/and those sad feelings you have been bothered with) despite all you have organized yourself extremely well and efficiently. Be proud of the good job you have done getting yourself here to this day. It will be all right now, you'll see! 

Good on you, to pursue the U/S, and good on them to give you one - in my book it is just good practise. My partner and I got sidelined fighting with a hwt tank, so I could not post as much as I wanted to, but I was going to give you some ammo to argue with to justify the U/S, but not necessary now - you did well and got it all sorted.

Your fibroscan - did it happen to have a CAP score capability? (It is kind of a measurement level of fat in your liver). Let us know if you had a CAP with your fibroscan. Not everyone gets a CAP, I never had one (just at the mercy of my doc old fibroscan equipment), but the U/S can also indicate fatty livers a bit too (among mnay other useful views of things!). U/S and fibroscan are great non-invasive things to have done IMO.

Us GT3's have a tendency to have fatty livers (sometimes) perhaps moreso than other GTs, so, good on the U/S. Post some of your old labs if and when you find any of them out - like bili's, AFP, chols, and whatever else you may be able to get records of.

So, when you went to see them, did they immunize you, and with what? - we had been discussing it in your old thread, but thought I would just wait and find out which immunization shoe dropped where, after your Thurs. appointment.

Are you able to have late night snacks with no problems, if you are taking your epclusa at bedtime, it might be an idea to have a late night snack with it (a med content fat snack) - even though epclusa can be taken with no food, taking food with it food is sometimes a good idea just on principal, and a moderate content fat meal will help it's absorbtion. 

Of, course the most important thing is water, water, water and consistency in taking your daily dose on time, same time everyday, that, and striving for that gal of water per day. Dilution is the solution to pollution (kinda). 

Just concentrate on you and the basics, you have to expend energy at work, so leave the pressures of all the other things we query you with last - you got everything very well covered - just try to relax into the routine of your treatment, treat yourself really good, adhere to the neccesary. We are all here for you if we can help, questions that come up or whatever. 

So glad you got your start!  C.

Wow, you ever dredged up our dear ole buddy Pablito for a hiya, he was my running mate in our trial, we both did 8 weeks of Vosevi (epclusa+voxilaprevir). So good to see a post from that man. 

is this happy first day?

Good luck, Hoodie! It will go fast. Trust me. I can't believe I just had my 8 week blood work done the other day. I think I'm down to 24 beans left.

From what I've learned through all this is to think only good thoughts, take one day at a time and, of course, drink lots of water. My journey has been pretty smooth, so I am thankful for that. You are in a good place here on this forum. You are surrounded by good people.

JB

tic tic tic...tomorrow is almost here!

Go Eclupsa.  I did it 2 years ago in the UK and it worked a treat.  Easiest (albeit stressful fretting about the result) 8 weeks of my life.

WOOHOO!!  

Good for you for asking about the ultrasound. Everyone imo needs to get that done when they are diagnosed with any form of liver disease. A baseline exam is just good to have on record. They aren’t expensive and they only take minutes to accomplish. 

So Thursday’s the day you plant the first magic bean huh? Yeah! You might have a few days of some weirdness, but it will be totally manageable. You‘re taking a powerful drug and your body will naturally respond to it. If you have any side effects at all, they are generally mild. It’s not like the old days when we administered chemo drugs to accomplish this goal. You’re blessed to be treated with the very best. Don’t worry, you’ll have this lizard on the run in less than 48 hours. It’s already packing it’s bag...

Great news Hoodie...... Hopefully the journey will be a nice smooth one.

 

Your turn for a stint at Dragon Slaying!

Magic Bean number 1 will soon be in the bank!

Got this text from Kaiser this morning: Your prescription is ready for pickup at the Kaiser Oakland Main 1st Fl Pharmacy. 

This is for Epclusa!! Wow, I really cannot believe I might someday slay this beast! Thank you God. 

Ill go in on Thursday at 1:30 for my appointment and start taking it right before bedtime to sleep thru any possible side effects.   

Ultrasound update: they said for people with an F0-1 fibrosis score they wont do an ultrasound. I said I want one anyway. NP said she will talk to the doc. Appointments for u/s are into aug - sept she said. Thats cool I said. Ill take the next available appt. Im pushing for it but if I cant get it I wont fight. Too tired to fight.