Hep C Discussion Forum

Iris Dragonfly · Guru

RE: Mavyret and Me

Tig · Admin

Hey Shemp! It’s so good to hear from you. Congratulations on your SVR, I had no doubt, but it’s always nice to see it in writing. Kiss that Dragon goodbye!

I hope things will settle down and smooth out for you. It’s hard enough dealing with life each day without all of the extra struggle it can throw at you. My condolences for the loss. Last year was a tough one for personal loss, for many here. Looks like this year is starting out on equal footing...

Please do check in when you can. Are you still driving full time? Don’t waste all your new found health behind the wheel! I’m happy for you Brother

Observer · Guru

Yay Shemp

I hope you are noticing a positive difference in your energy.

Thanks for sharing your good news

sorry you have lost some people you care about

-- Edited by Observer on Friday 10th of January 2020 04:09:13 AM

5-1-18 · Guru

yay shemp! isn't it nice to move on in life knowing we are hepC free?

Cheddy · Moderator

That is fantastic, Shemp. Are you making a comeback from fatigue, or any after effects.

I'm thrilled that you grabbed ahold of the cure and throttled the foe. 40 years is a long time to be carrying this around.

All the best to you moving forward. You will be stronger for your victory.

Cheddy

Shemp · Senior Member

Sorry everyone for being MIA for so long.Work,family, passing of some close friends.But, there is a bright light that shines. I have finally made it to SVR 12. No virus,ALT 13 AST 16. Guess my liver finally get a break after 40 years.Thanks you guys, I'll try not to be gone for so long.

Iris Dragonfly · Guru

Shemp wrote:
Thanks for the input guys.I'm really not going to dwell on what my Dr.plans on doing.I'm taking 5-1's advice and going with the flow.I have a CT scan on Tuesday and I'll have my answers.I think my biggest problem is my brain can't grasp the fact that I'm not 25 anymore.But,on to bigger and better things.I got the results from my 12 wk post TX labs.
DRUMROLL PLEASE
ALT 11
AST 16
And of course NOT DETECTED
I want to thank each and every one of you who took this journey with me.I don't think I could have done it without you.I think I'll be sticking around,if thats ok with you.

So glad to hear this!! Congratulations, another dragon bites the dust!

Many blessings to you Shemp hope everything is roses henceforth! , Iris

5-1-18 · Guru

hang in there harry, we do end up feeling better, it can take even longer than 6 months; but the #1 thing is that we are cured and won't get further liver damage.

i'll have a year in june and i give myself til then to take score

Tig · Admin

Hi Harry,

I want you to give yourself 6 months before you give up the ship! It’s not uncommon at all for it take months to notice improvements. I can’t promise you will be 100%, but it’s rare that improvements fail to be realized in time. That is better than having no hope at all.

We have all suffered with this disease for years and/or decades. Many of us have significant liver damage and can’t expect a new baby smooth liver. We can’t expect that kind of damage to simply go away, but I can tell you that once the virus is gone, it will begin to recover. We don’t know how long recovery takes, but we do know it begins. Some have experienced damage as a result of years long viral infection and may not witness complete resolution of that. Just imagine how much worse things might have gotten, had you not gone forward with treatment? That’s why we are all here, to get better and to share ways to successfully expedite and ease the treatment process.

There have been others here that complained about post treatment muscle and joint discomfort, especially the feet. I don’t know why that occurs in some and not all, but it does improve for those that do. Treat it symptomatically, with your doctors approval. I think once your body adjusts to the viral clearance and is able to start functioning properly, you’ll begin to notice the positive changes we all strive to obtain.

Harry · Senior Member

Hi Harry here hope everybody going well,while doing tx I would a lot of negative things regarding tx ,my liver nurse would tell me to ignore it and I just about did ,now I am about 5 MTHS poste treatment ,cure got rid of viral load I am really happy about that ,but I'm still really wiped out when trying to do simple jobs ,my knees ache all joints seem to ache still get nausea I'm more short of breath then I was pre tx I have numb fingers plus couple of toes I told my GP and she didn't have an answer so I went back to liver clinic. to try see a Dr no way that was gonna happen, I spoke to liver nurse all she said was you probley have the pain for ever but look on bright side no more hep c mmm, ifelt so much better before I took the epclusa ,I don't feel like putting up with these symptoms for rest of my life ,the clinic were so nice before I started once started an started to have hearing nausea ect it was like no support would not admit tx did this.im sic of waiting to feel better it's not gonna happen.this is just me hope all best for everyone thanks

5-1-18 · Guru

shemp, well that is good news about the gallstones. wow!

it's always good to hear from you

Canuck · Guru

Well, only one gall durned stone! Now, that's better news (well, certainly better than having multiple stones or you worrying about having to have your GB torn out/sucked out) - that's fer sure!

Ya, where do stones go? Slowly dissolve themselves teenier and pass their disintegrating piecemeal selves out your duct and sent along out the GI system for good?, oooor, maybe you feel a twinge or two and pass the big beasty stone(s) whole through your wee duct. Either way, yay, it seems most of them have vacated the office.

Being that you were F3/4 (what were your kPa's again?) ... I think just based on your pre-treatment F3/4 level, that you should not have too much difficulty asking for and getting 6 month U/S's (just for good post-hep "following" purposes), and just with the U/S's alone you should be able to keep a fairly good eye on the "count" and sizes of any stones in your GB as well, going forward. Insurance may force your docs to "justify" U/S's every 6 months, (even fibroscans they may not wish to be generous with) but in your case I think regular U/S's and future fibroscans are certainly justified on multiple counts.

Very good that you did get that CAT scan done, under your post-cure belt, they may not bite for another CAT any time soon, as things stand.

Regarding the CAT and the results - you didn't get a "dye" injection with that CAT did you?, and, did the radiologist or anyone happen to mention any GB wall thicknesses or measure a dilated duct?

I wish you felt 110% better, and that you could always sleep good, but you are right ... for now you just HAVE to gloat over killing that hep c beast - THAT is SO HUGE! : ) C.

Cheddy · Moderator

Hey Shemp!

Who among us sleeps wells. Rats.

Well, aside from the usual insurance frustration (in which they specialize) I'm so happy that you have good inerds. What a bonus with the reduction in gallstones, no matter the cause.

Yeah, the energy thing is another frustration but it's early still. You did say that you just turned 21, right? Still, I don't sit well with the age reason. Exercise helps a lot with that. Much of my own dragging is a matter of discipline and activity, but I still have to kick myself in the ass.

It's always nice to hear from you. Just keep getting better, ya here?

Cheddy

Shemp · Senior Member

Greetings from New Jersey,I'd post a pic but...WHY?My CT scan was delayed a week because the day before I was supposed to have it done,at 5 o'clock my insurance co.decided they wanted to have a peer to peer consultation about the scan.Really?They just laid out a boatload of cash for the TX,but we're gonna get confused about a CT?Anyway I had it done and everything looks fine.My liver looks normal,and the rest of my inerds as well.The only thing that's strange is I seem to have lost a few gallstones in the last 6 months.Before TX I had 4 or 5,now I have 1.Doc says it might go away on it's own.Ok,who knew Mavyret could dissolve gallstones?I don't know if that's the reason but I'll take it.I'm slowly starting to feel better,but still don't sleep much better.Everything in time I guess.I'll take my SVR and be happy.Take care everyone.

Canuck · Guru

Happy SVR12 UND Shemp! Big congrats on a job well done. We are all so happy for you that you are all cured up now. I like your sentiments ... "take that stupid dragon" ... , you beat that beast good. Lovely LFT's and yay for your imaging coming up too, all good things. Happy you have your official SVR12 behind you now. You earned this, very well. :) C.

Observer · Guru

Hurray Shemp.

UND

thats what we like to see.and those liver enzyme numbers are FANTASTIC...

Congratulations and enjoy the next healthy phase of your life.

5-1-18 · Guru

yay shemp!! you are a club zero hero

Cheddy · Moderator

I second what Tig said on all accounts.

I like that you are not getting stuck in medical worries. It's important to follow up on any concerns but going with the flow seems very helpful to me. After all, you have a HepC Free life to live!

As for 25, I'd love to be 45! Sometimes when I'm feeling old, I have to admit that I'm just need to get stronger. It's harder now, but exercise is a great elixir.

CAN YOU HEAR ALL THAT DRUM ROLLING??!?! I'm thrilled for you. I can't believe you kept working. I guess you are just driven -

Good to hear from you, Shemp. Thanks for the good news

Tig · Admin

If you find out how to get that 25 year old thing figured out, please let us know! I remember thinking how happy I was at 25 because my car insurance rates were cut in half! I thought I had everything figured out. Took me another 3 decades to realize I was very uninformed. wink

I do hope you’ll check in when you have time, Shemp. You’re an important member here and we’ve all grown close to you. Your personality and motivation have been a great addition to the family!

Your LFT’s look outstanding next to that word we never tire of reading, “undetected”!

Shemp · Senior Member

Thanks for the input guys.I'm really not going to dwell on what my Dr.plans on doing.I'm taking 5-1's advice and going with the flow.I have a CT scan on Tuesday and I'll have my answers.I think my biggest problem is my brain can't grasp the fact that I'm not 25 anymore.But,on to bigger and better things.I got the results from my 12 wk post TX labs.

DRUMROLL PLEASE

ALT 11

AST 16

And of course NOT DETECTED

I want to thank each and every one of you who took this journey with me.I don't think I could have done it without you.I think I'll be sticking around,if thats ok with you.

Canuck · Guru

Hey shemp,

Re: the GB issue/worry ... well, you'll just have to see what your doc says/thinks ... you say he "sees" 2 large stones in your GB?, so ... how long ago was that imaging (that stones were first ever seen in your GB) and was that "by U/S" that these stones were imaged?? How many imagings have you had done (by U/S or any other type) that have shown your GB and stones? How long have "stones" been seen in your GB? Do you currently have, or have you been having in the past, any bad GI symptoms of any sort which are strongly and directly attributed to a unhappy/complaining GB? Have you read the written radiology report describing what your GB and stones look like? That would be good info to share, maybe, to know if your GB walls are very thickened up, and other potential signs of a hx of GB distress. How have the some of your LFT's been that may relate to GB, like bili, AST, alk. phos.

Sometimes docs take a tact of leaving things alone if they are not bothering you or anything else.

Maybe ... if you have not had symptoms, nor funny labs, nor any imaging of your GB for quite some time - maybe you could just start with another round of imaging to see whats what in all things GB. That's where i would start if i had not had any imaging for a while.

I hear getting your GB out nowadays can be a breeze, tiny incisions and they just suck the offending thing out. And better to have a diseased or malfunctioned GB out proactively, rather than being inconveniently pained whilst dealing with an upset GB/waiting for a "hot" GB to calm down good enough for surgery. Food for thought.

If everything works and does not hurt, and you are not having any major malfunction, maybe your doc will just sit on your GB until further notice. I don't know.

I guess I am very happy you are feeling OK (enough) though, to be working like crazy! : ) C.

5-1-18 · Guru

oh shemp, no one wants more procedures , but if the bile backs up too much it can also affect your pancreas i think so just go with the flow.

i also heard that ppl get rather goosey after gallbladder removal blankstare

we are all excited with you about your labs

Tig · Admin

Hey Shemp,

Whats happening old friend? Sounds like you’ve been entirely too busy. It would be difficult for me to get back into that kind of routine again. Before I was forced into retirement, I was working 60-80 hours a week, with an occasional 100. Not that I enjoyed it the hours, but I absolutely enjoyed the paychecks. That was back in the early 2000’s, when the defense department contracts were smoking hot and I was welding aircraft systems. Retirement dollars don’t come close. I gave up my CDL or I’d offer to sit in your co-pilots seat and give you a breather!

I already know what your viral load will be, so let me congratulate you early. You should have those results back before the weekend. Plenty of time to arrange your party! If you jump in Ft P., I’ll jump over here and we’ll get this state rocking!

I had my gallbladder removed back in 2001. I had a polyp in mine and they also discovered when the GB filled with bile, it wouldn’t squeeze and release the contents when needed. That amounted to it blowing up like a balloon and it hurt like hell. They removed it using a laparoscopic approach. It was easy and didn’t really cause much discomfort. I went back to work after a week, but was on limited duty for a few weeks. It’s not like the old days when they cut you like a fish. If they decide it’ll fix what ails you, I would go for it. I felt brand new afterwards, but I will tell you, it has caused me to be a bit looser in the bathroom ever since. It has something to do with the constant release of bile, versus it being released as needed. Not really a problem, but it took me a while to realize why I was sharing bathroom habits similar to some of my neighborhood muscovie ducks... Loose as a goose is a real thing!

Shemp · Senior Member

Greetings everyone,sorry I've been MIA the last month or so.Been working like a dog.I go for my 12 wk.post TX labs today,and I have a sneaking suspicion my Dr. is going to want to pull out my gall bladder.I have a couple of large stones he talked about before TX but decided to wait till after I was done.I don't have any pain but I think bile is most likely backing up in my liver.I don't know if I really want to say good bye to my gall bladder or not.I understand recovery takes a while,which is why I've been working like a dog.I know some people here have gone through this and if you could enlighten me I would appreciate it.Other than that,things are good.I don't exactly feel 100% and I'm thinking it might be the GB issue.I'll keep you posted.

Shemp · Senior Member

Hey Hoodie,great to hear from you.Congrats on your SVR12.My last labs aren't until mid March,soooo... I keep waiting.How are you doing?Feeling better yet?

Hoodietree · Senior Member

Shemp, Happy to hear from you, so glad youre feeling better. Man, that weather is brutal! Hey just let us know when to bresk out our dacing shoes for your 12 week labs.

Harry, How are you holding up? Have you gotten a break from that blasted heat yet mate?

Love to all

Shemp · Senior Member

Hi Tig,no worries.Everybody doing what they got to do.Hard times don't last,strong people do.Getting ready to go back to the freezer.The things ya do for money.We'll chat soon.Take care my friend.

Tig · Admin

Hey Shemp,

Good to hear from ya, Brother! It has been a wild couple of months for all of us, sorry I haven’t kept up with your progress. That trip of yours into the frigid North doesn’t sound like a lot of fun. My buddy lives in North Dakota, they had -50 or lower temps and more snow than anyone might want. I have to admit, the 48 degree temp we had here in south Florida was cold enough for this old boy, lol! I’m glad you made it back and are feeling better.

Observer · Guru

Harry,

I am of the belief that treatment definitely affected my nervous system. Still I prefer some nerve pain and tinnitus to all the hideous symptoms of having long term HCV smile .

Shemp,

its so great that youre starting to noticeably feel better... hurray. Some symptoms just seem to melt away. All of a sudden you realize...whoa I couldnt have done that a year ago .

Harry · Senior Member

Would like to swap places Shemp.this heat does your head in as the cold would too I guess.think you mentioned numb fingers toes at times after tx 2weeks I get results I don't know if it's the hep or.the.heat crap lungs funny cigs or old age just wish would Go away, guess I'm lucky to be still around.most my friends didn't get this far..take care mate stay warm (I'm sweating lol//)

Canuck · Guru

Nice you are feeling some better Shemp. It is a amazing how much just a little more sleep can help (or, how much a break from too much weather, or from too much of anything can help)!. smile C.

5-1-18 · Guru

hi shemp and harry, good to hear from both of you

Shemp · Senior Member

Hi Harry,I could use a day or two of 100 degrees.When I left up north it was 8 degrees.Today with the wind chill it's -50 below zero.Absolutely brutal.I had a nurse advocate from the drug company while on treatment.No matter what I told her as far as side effects went she would tell me she never heard of that before,but she would make a note.I think a lot of Drs.are struggling for answers because the treatments are so new.Really no study as to the long term effects.So for now I'll take undetected and be happy.Hope all goes well with your bloods.

Harry · Senior Member

Hi Shemp ,glad your feeling better and sleeping.better, wow sounds so cold over there I've never even seen snow ,really hot over here in Australia today s supposed to be over 100deg very hard to cope with we have a 3 fan house ,portable air con doesn't do much except up my power bill lately I've been getting numb fingers on left hand an numb toes on left foot don't know if it's from treatment or hot weather smoking for yes no one seems to know much over.here every time I go to liver clinic the nurse says never heard of that.side effect before strange thing is when I read up on.some forums numb fingers can be common the nurse said same thing about hearing side effects , hopefully all just a temporary thing ,my Dr doesn't seem to know much about the new meds, she just rings liver clinic an nurse tells her same thing "never heard of that before, "gets bit frustrating I'm sure lot of drs think your just after extra meds (maybe 40yrs ago ) anyway get my final results back 2weeks fingers crossed it will be finally gone I hope ,been a long 6 MTHS stay well and warm cheers

Shemp · Senior Member

Hey Y'all,Just returned from the frozen north.Man,it's cold up there.I'm happy to report that I've turned the corner.It's now 7 wks. post TX and I'm really starting to feel much better.The fatigue is starting to fade away and I'm sleeping much better.Last night was the first time I slept for more than 8 hrs.in years.I believe thats what has been holding me back from feeling better.The last week has been the best I've been in a long time.5 more wks for my labs.The anxiety of waiting isn't as bad as it used to be.I see the light at the end of the tunnel, and for the first time in my life,believe it's not a train.Thank you all.I couldn't have done it without you.

5-1-18 · Guru

take it nice and easy shemp; rest,food, water and good self talk

Shemp · Senior Member

Thanks for the tip Obs.I'll be up all night thinking of words.Tig,in your case you could name all the different types of welding.That should keep you busy.Back to work today after a month off.I still don't feel like working but that powerball thing just ain't working out for me.I just wish I could put two days together where I felt the same.I would like to welcome all the newcomers to the forum.This place will make your journey much easier.It did for me and countless others.

Tig · Admin

What do we do if we can’t spell? Now I’m awake.... wink

Observer · Guru

I read about the coolest trick for focusing your mind to fall asleep...

its a little word game

you choose a word like bird, lamp or with....

then you think of as many words that start with the first letter until you cant think of anymore,

then you think of as many words as you can starting with the second letter...etc etc

The university professor who invented it said he had hundreds of his students use it and it was amazingly affective...(I cant remember the percentage)

I can never get past the first letter

Canuck · Guru

OMG shemp, what you said!! ... "my mind is all over the place.It's really weird,kind of like I'm going in two directions at once.Overactive mind is an understatement"...

That's me all over, and I'm YEARS cured!! What does that mean? uh, but... mind you, maybe I was that way before I got treated too! ( uh, oh ya, I am a Gemini as well)! And how did I manage to just do all that?, between and while I had all that profound fatigue!!

And OMG 5, what you said!! ... "freaking out is part of eot" ... , it seems I am always (still) freaking out!, oh dear, and what does that mean!

Seriously, i do not just tease you, but I am trying to make light of myself and what happens with me, these disjointed/discombooberated feelings are hard to do or understand at anytime - I'm with you, I'm just gunna go with the flow for now and see what happens next! confuse C.

5-1-18 · Guru

freaking out is part of eot cry

Shemp · Senior Member

Thanks you guy for the advice and the kind words.I know I can always count on you.I understand I've been through a lot,and maybe thats why my mind is all over the place.It's really weird,kind of like I'm going in two directions at once.Overactive mind is an understatement.I guess I just need to learn to go with the flow.I know this too shall pass and better times are ahead.I'll try to not be so much a stranger.

5-1-18 · Guru

hi shemp,

my month eot was one thing after another along with the aches, pains and fatigue.

i am about 6 mo. eot and my energy levels are better, the leg rash is gone... i am working less and still have to get a lot of rest.

but i am cured so what ever i have to balance is worth it

i can go go go on my days off for 3 days along with 8-11hrs rest/sleep and still need one whole day of bed rest in order to make it thru my 3 day work week.

i def have to schedule the rest time or i'm no good for the rest of my ife.

i make sure and get as much done as i can on my 3 days off so i can get that one day of just rest... and i don't do much on my working days except work , or grocieries and gas up the car after work.

over the past few months i am able to do more for longer periods than i did ot; i can exercise again and i like that

my face gets a rash if i don't get the day of rest... so that's the best incentive for me

so be easy with yourself, you just went thru a life saving treatment.

Cheddy · Moderator

Well said, Tig. It does take some time to readjust and reprogram. I was remarkably better in 4-6 weeks.

Yes Shemp, we do like having you around here. I'm really sorry to hear that you are dragging. I'm glad, though, that you went to the doc instead of assuming it's treatment related. It may be, and may not be.

I'm not very good at sleeping either. I don't find Ambien to be agreeable with me. I use melatonin with some success if I don't take it all the time. Occasionally, I use alprazolam if my brain is over active. It is meant to treat anxiety, though my brain activity is not negative or fearful, just busy. The best medicine I know is SLEEP. But how do we get there? Would you describe your state as one of depression? I had to treat that post TX and wow, it really helped me reboot from long habits of malaise which were probably HCV and TX related.

I will say that I'm all better now and expect the same for you. Don't go missing, though. You're not done with this yet.

Best to you, Shemp,

Cheddy

Tig · Admin

Hey Shemp,

Thanks for checking in. I wondered what kind of trouble you were getting in! Recovery seems to be a process. It was for me and seemingly it is for most others. Some experience an easier transition and others experience some joint discomfort and malaise. What I have noticed, is most people start to feel somewhat better 4-6 weeks after treatment. I believe there’s a period of time needed to clear the drugs and reprogram your mind and body. Think about how long you packed that beast around?

You took some powerful medication and rewrote your future health. Imagine the adjustment that your body is experiencing. It had an immune system battle going on for decades! Now it has the job of correcting the years of damage done and it takes time. Once this period of correction is well established, I think you’ll notice the benefits and improvements you’re seeking.

Don’t be a stranger! We kind of like you around here... wink

Shemp · Senior Member

Hey ya'll,I've been MIA again.I don't mean to be but lately I'm feeling really out of sorts.I still haven't gone back to work since before Christmas.I really just don't feel like it.Still not sleeping well.My pc doc says I should stop taking sleep meds.Really?Then I wouldn't sleep at all.Some days I have a lot of anxiety.I don't know if it's TX related or not.Maybe it's that a month post TX I think I should be felling better than I do.Anyway,i just wanted to check in and let you all know I'm still alive and well.

5-1-18 · Guru

ahhaha, a shemp report

shemp , that is one of my biggest health probs always.... sleeping well enough cry .... but yea, 2018 saw us cured!!

may 2019 bring us all the deep peaceful restorative sleep we deserve

-- Edited by 5-1-18 on Monday 31st of December 2018 07:29:47 PM

Tig · Admin

Hey Shemp,

Good to hear from you, Brother! Christmas and now New Years, is being spent with my daughter, her hubs and the two grandkids. 2 and 4... They’re killing me, lol! So much fun though. It gives us a chance to concentrate on some good old, family time.

It may take you a good while to get back on track. The most important goal has been achieved, to decimate the Dragon and improve our quality of life, virus free. It does happen though, Shemp. I wish I had the answer to make it easier. I’m a firm believer that the worst days of our disease are over. We’ve been allowed to change our future. Let’s make it the best.

Happy New Year!

Cheddy · Moderator

Shemp,

We share that sleep pattern: dead tired, wide awake. I've haven't been good at sleeping for a long time. I wonder if fatigue isn' an inadequate form of rest that throws the body clock off. I'm getting better at it but it's unreliable. Are you getting enough sleep?

Good that the tooth has settled down.

Lots of people go MIA in December. It's a set up. Says so right on the calendar of traditions.

I'm glad you are getting better post treatment. It's a long haul, alright but entirely worth it, right?

Thanks for joining us this year. It's always good to hear from you.

Cheddy

Shemp · Senior Member

Hi y'all,I've been MIA.Hollidays...you know I love 'em.Been home since before Christmas,just taking it easy.I haven't had any dental problems,antibio's cleared the infection.I'm starting to feel better after TX,but still have a sleep problem.I had it before treatment so I don't think it relates.What's really strange is I feel fine all day,around 7pm I get so tired I can hardly keep my eyes open.It lasts a couple hours and goes away.I can't figure that one out.Guess it's another bump in the road on the way to normal.I really like your new avatar Tig.Wishing everyone a Happy and Healthy new year.

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