Hep C Discussion Forum

Tig · Admin

RE: Just jumped on the Epclusa Train!!

Lindsmatt52 · Senior Member

Hi Tig-the laser surgery was easy-peasy. No need for sedation, etc. Just some numbing drops and a few zaps and voila! The most annoying part was waiting in a cold hallway for 45 minutes with a blue dot over my right eye to ensure the correct eye was zapped. I got a lot of weird looks from passersby! The laser zaps themselves were mildly uncomfortable but easily tolerable. I had blurred vision and a headache until the next day and am following up with prednisone eyedrops for 5 days. I just wish this would improve my vision, but alas, that is not a benefit!

Thanks for asking!

Tig · Admin

Hello! Thanks for the update. How did it go? I imagine it doesn’t take too long. Before you know it the other eye will be done and life will be good! No Hep and healthy eyes, woohoo! That’s a great way to start 2018!

Lindsmatt52 · Senior Member

Thank you for checking on me, ps! Laser surgery went well and am scheduled for the left eye on January 3rd. Next appointment I need to make is a steroid shot in my right hand, then ready to get back to a normal, healthy life! This age thing is overrated! biggrin

lm

Tig · Admin

That’s right! We’re waiting for your report. I hope all went well and you’re on the mend. Don’t spend too much time reading though, you don’t want to strain your eyes. Did they do one eye or both? Get well soon!

polosilver · Senior Member

GM LZ, Hope all went smooth yesterday and that your eye is recovering miraculously!

ps

Canuck · Guru

I'm with you LM, yuck to "early bird" hospital appointments, 6:15 AM, brother! Your opthalmology laser doc prolly gets early bird "sets" of time for the facilites he performs the laser work in (like many other various docs with certain "specialties" do) these docs with "hospital privileges" (for access to "special" clean rooms or equipment, staff, services) - get their time and space allotments doled out to them, to get their to do certain procedural work done.

You should have seen the hospital room they used for me (to have cervical biopsies done in, under a drug-induced amensia-state)! Awake, it could have been done anywhere, even in the doc's really-quite-nice office, but "under" (as I had wanted) they had to book hospital time, no special tools required, just a clean room and staff around because of IV prep, and then staff while you are "out", and for recovery.

Basically they used what looked like a very sterile utility/janitors "catch-all" slop room! Ha! Roll the pre-op stretcher, and me, and my IV into this tiny sterile stainless-steel "catch-all" room, I hop on to a proper surgical-type table (they have fitted with necessary stirrups, and assorted implements of torture at the ready), big O.R. light above, and away we go with the drugs. Obviously they use that room for "other" odd-ball sterile procedures. In that same wing tho they have many totally separate (from gyne) O.R. rooms dedicated for a (very busy), colonoscopy/gastroscopy/biopsy, and other surgical daycare and outpatient procedures. They obviously do very little "anesthesia-induced" gynecological biopsying, period, thus the lovely tiny down-at-the-end-of-the-hall shiny spare janitors room/broom closet - nice tho that they separate all the GI/bowel procedure rooms from this one tiny gyne procedure room! The only thing bowel and gyne pts share in common is the pre-op and recovery areas.

Unlike me, and the other GI/gyne pts I lined up with, you (on the other hand), can bet your bottom dollar that where you will be going bright and early tomorrow AM, will be the loveliest of "clean" rooms, nicely "dedicated" to house the very expensive clean laser equipment they use for opthalmology patients!

So, will it be be SAME "laser procedural doc" (who is doing the work on you in the hopsital), who will be the same one to examine you later (at the "office") that same day??

Oh, about "drug to drug" contra-indications of steroid eyes drops and epclusa? - that's not what i meant really, what I was referrring to (more so in general) was the use of "steroids" period, mostly the "heavy-duty" kind of steroids, with any pt who's immune system might already be altered. The biggest concern is in the use of "heavy-duty" systemic steroid therapy in people who are immune-compromised who may already be carriers of simplex or zoster or other diseases. Too complex to get into it all right now, but "potent" systemic long-term therapy with steroids (which may be 25 to 50 times more powerful than what might be found in eye drops), is a therapy worthy of considering and figuring out where your pt "is at" immunologically-speaking, especially if the pt has just finished or is having concurrent treatments for other viruses, cancers, disease processes.

As long as they know you currently do not have simplex or zoster in your eyes/head now, or have had a hx of battling that in the past, I would be surprised if they had any problem giving you the healing (low dose) usually very short-term steroid eyes drops to help with your eye healing, post-laser. Informing them that you have just recently finished epclusa for HCV, only gives them a clue as to your health and how your immune system may be operating right now.

So, good you and your docs are being pro-active and doing this procedure to try to prevent future pressure damage. I am of the thinking they would not be recommending this corrective procedure, if they thought it not in your best interests.

I had no idea what kinds of glaucomas there were and how they diagnose these eye things nowadays and found some good links, you likely had several dif kinds of tests (in how they can look at your angle openings and pressure) to diagnose your "narrow angle", it was interesting reading (for me)! biggrin C.

https://www.glaucoma.org/glaucoma/diagnostic-tests.php

https://www.reviewofophthalmology.com/article/managing-narrow-angles-and-glaucoma

http://www.southlandeyeclinic.com/FAQ/naglaucoma.html

https://www.brightfocus.org/glaucoma/article/peripheral-iridotomy-laser-procedure-narrow-angles

Lindsmatt52 · Senior Member

Hi ps-

Thanks for the positive thoughts and please keep them coming. My eye surgery is tomorrow morning! biggrin I'm not anticipating any issues.

lm

polosilver · Senior Member

Hello Lindz ---

Was thinking of you this morning and hope all went smooth for the laser procedure at the rise and shine time, whew, that's early for eye surgery. Let us know how everything went girl.

We are cheering you forward!

ps

Tig · Admin

Hi Lindsay,

When they place your chin in that rest and place that “thingy” against your eye, there’s a puff of air that blows against your eye. It measures the pressure in your eye and the results are listed from like 10 to 20 for each eye, but can be higher if glaucoma or something else is responsible. That’s just a generalization but you get my meaning.

It should be a quick and relatively painless procedure. You might have some post procedure irritation, but it will resolve fast. Eyeballs are notoriously quick healers, but Lamont might disagree with that right now! Different altogether though. I wish you the very best today and look forward to your report. Good luck!

Lindsmatt52 · Senior Member

Hi Tig-

I have no idea how to read these medical records so can't help you with the eye pressures! My doctor did not mention any other treatment option but did say that I don't have glaucoma at this point. I'm having the first surgery tomorrow morning at 6:15 AM (Yuck!), so will hopefully have good results.

LOVE your Santa photo!

Tig · Admin

Hey Linds,

Do you know what your eye pressures were when they tested you? My entire family has either pre glaucoma or full blown. I’m on a watch list for now, but they did find some changes around my optic nerve that alerted them. My Dad (90) has glaucoma and macular degeneration. He lost forward vision in one eye from that and requires 3 month injections in his other to keep it in check. Terribly expensive. They are controlling his glaucoma (pressure) with Latanaprost drops daily. My sister is doing something similar. Has your doctor mentioned that option versus the lasering? It’s worth asking about.

Lindsmatt52 · Senior Member

Hi C-Thanks for those important questions. I wasn't really thinking about contraindications with the Epclusa since I'm no longer on it, but did email my GI NP to make sure there are no complications.

To answer your question, I had no symptoms prior to the diagnosis and had just gone in for my regular checkup with my optometrist. He found the narrow angles and referred me to an eye surgeon. Considering the fact that I've had perfect vision and didn't have to start wearing glasses until 4 years ago, this is all completely new to me and somewhat annoying! But I'm grateful that they found it when they did and am looking forward to getting it corrected, I was kind of hoping I could have cataract surgery at the same time but apparently don't qualify for that yet!

The plan is to have my right eye done at the hospital and then immediately go to the doctor's office to have the pressure checked and then repeat in 2 weeks for the left eye (annoying that they can't do it at the hospital!). Then, I believe, I go back to the doctor's office 2 weeks after the second surgery to have my eyes dilated and confirm all is good! Shouldn't be too bad but will be happy to have it behind me. Apparently, I don't actually have glaucoma yet so hopefully this procedure will prevent that from happening.

Thanks for your concern and your always helpful inquiries!

lm

Canuck · Guru

Hi LM,

I saw (over on Lamonts thread) you were mentioning going for laser treatment on eye #1 for narrow angle glaucoma next week, you HAD metioned this before, the assessment and possible treatment, but now had added a curiosity about use of steroid eye drops?

I do not think steroid eye drops will be an issue with you (post-lasering), unless you have been fighting bouts of herpes simplex or herpes zoster while you were being treated with the HCV drugs, or if you have had a long history of doing battle with these particular viruses before, and in particular, if you have ever had bouts of either herpes in your eyes before.

Call the doc (or one of your docs and ask them just that) if getting the steroid drops in your eyes is fretting you, then let them reassure you - just relay to them (be sure they know) that you've just finished your epclusa treatment for HCV, and they should be able to explain to you whether they think use of steroid drops is contra-indicated. (I really doubt that steroids drops cannot be used). If you have ever done battle with bouts of herpes simplex or herpes zoster before, especially in your eyes (be sure they know).

They may give you MORE than just the steroid drops as well, all standard to the post-laser routine. Steroids can be a very helpful component for corneal healing, of that tiny speck they have disturbed by lasering through it.

Good deal you are pro-actively preventing any intra-occular pressure from increasing, building too high, by having this corrective laser surgery.

Did you have any eye symptoms prior, or did they just find your problem existed by tests?

Only 2 things I know about post-lasering, it that if you DO ever get a really, really bad eyeball ache (it probably will never happen) just after you have had the lasering done, then you need to go and have that eyeball pressure checked again right away. They want to make sure the pressure has been successfully reduced, remains low enough, pretty well right away - the other drops they might give you, might be just for that very thing, drops to make sure the pressure remains good enough during the healing period. They may even get you to hang around just after the lasering for an hour or so, just so they can do another pressure check, to double check your eye pressure before you go on your way. They will likely call you back in again, within a short period of time (days), to re-check pressure and see nice corneal healing.

The only other thing I heard, is that for people with bad glaucoma they are told to always remember to read labels on cold medcines and such, for "labeled glaucoma warnings" (certain antihistamines?, and/or maybe some other particular drugs), that might contribute to increasing intra-ocular pressure?, and so, not good it you already own increased pressure.

But, no doubt your good docs are going to fix your pressure imbalance problem by ensuring you have a nice teeny tiny proper opening which will allow good balancing of pressure.

I heard the procedure is not that bad and quick! Except for maybe the waiting bit. wink C.

Lindsmatt52 · Senior Member

Thank you ps! It was a great birthday and made so much sweeter after finishing treatment!! biggrin

polosilver · Senior Member

Happy Birthday Lindsay! (Belated) I realize we missed your birthday last week! I know it was a happy one at Club Zero!

ps

wendyo · Guru

happy liver.jpg

Lindsmatt52 · Senior Member

Thank you all for your words of encouragement and positivity. Canuck, I appreciate the explanation of differing lab results. Makes sense that it's possible to get varying results depending on where it's done. I am so grateful for Epclusa and how well I have responded to it. Truly miraculous! I am more than thankful every day that I didn't have to go through the old treatments as many of you had to do. I'm fairly certain I wouldn't have made it.

.

Observer · Guru

Congratulations....those are GREAT numbers.

* Canuck, RC or Tig correct me if Im wrong ) * ....I think the ALT and AST tests are measurements of bad liver cells being sloughed off the liver, so low is really good. Your liver doesnt have to get rid of unhealthy cells anymore. Yay

A.

Canuck · Guru

Hey LM!

Wow! Just goes to show you how "inflammation-LESS" you are, (you big record-breaker you)! So many people are now ending up with these dramatically low fast-crashing ALTs on DAA's (nowadays). Stands to reason, as (1) your current low ALT just goes to shows how beautifully your cure drugs worked on you, and (2) you didn't have sky-high ALT's to crash, to begin with! Pre-treatment 33 U/L, plummeting immediately into the 7-9 mark very early (starting as early as week 4 and 8 - and maybe even earlier for all we know)!!

Just for perspective (or ... perhaps just so I can add confusion, oh lets just settle on ... "for consideration" then, hee hee) I will outline dif ALT tests ...

Your lab (from one of your prior lab postings) shows their "normal ref range", what they go by, is between 5 - 30 U/L.

I had two dif labs (at the exact same blood draw) each got a vial of my blood to do their own ALTs on ... local lab #1 had me at 13 U/L and their "normal ref range" is stated ONLY in terms of being less than 36 (<36 U/L), so there is NO "lower end" of normal at their lab, so my ALT result from them will never be "F' flagged, or "L" (low), or "H" (high), or "A' (abnormal) unless my ALT gets to be over 36 U/L. At that exact same draw, where my other vial of blood when to a far way lab #2 ... they had my ALT result being 14 U/L, and that lab states their "normal range of ref" is 6 - 34 U/L.

If you were to go around the world you will find various labs using dif ref ranges, one of these days (maybe) labs will use same methods, same equipment, same guidelines, same thinking (about what "normal" is), we can only hope! There are a lot of labs tests that can differ widely from lab to lab in how they do the test, what units of measure they use ... standardization sometimes seems to be hard won in labs!

You have had a very good cure. Very lucky to get epclusa. My only hope now is that some of these things which you have been experiencing for a while were somewhat HCV related and will now improve for you. You can keep looking forward to your next UND, and your next, and so on and so on. Really well done. biggrin C.

robertsamx · Guru

Hi Linds. With those low LFTs Im thinking your liver is so healthy right now! Awesome numbers and congrats on EOT. Keep reporting those looooooow numbers!! RC

Tig · Admin

Hey Linds,

Congrats, Sister! Your ALT/AST are beautiful Those low numbers are fine, nothing to worry about there. You just finished treatment, so your values were still affected by it. Your EOT+12 tests will be closer to what normal will be.

Looks like we have a very dead Dragon on our hands.... WooHoo! Big thumbs up!

Next stop.... SVRVille! >>>All aboard<<<

polosilver · Senior Member

Congratulations!!!!!!!! That is awesome news Lindz, we doing the happy dance here. I'll let the gurus respond on your question, yet to me it looks as if your Liver Enzymes are very low and that makes for a happy liver...I'm hoping that is what it means. I'm sure the experts will tell us for sure.

Glad you are continuing to hang out at Club Zero!

Lindsmatt52 · Senior Member

Hello All! Just got my EOT results today. VL is still undetected and AST is 9, ALT <5. Report says that's low so not sure what that implies. I'm hoping it's still good news. Any thoughts?

Tig · Admin

Hey LM,

I’m so glad you’re feeling better and came to your senses early in your recovery! You can’t clean everything at once or you’ll end up going online and spending money because you’re bored. Trust me, it can get expensive. I’ve learned to save the hard stuff for the day I win the lottery and can hire a service! Ha, ha! I wish....

You do sound very upbeat and that’s cause you EARNED it! You also deserve all the happiness and pride that comes with successful treatment. It will keep getting better, too. Keep up the good work and stay committed to healthy living!

Just look how far you’ve come...

Lindsmatt52 · Senior Member

Hi Tig- Feeling great, thank you! I had a huge spurt of energy the first day free of pills and was like a whirling dervish cleaning house! I've since come to my senses and have settled back into my usual routine biggrin

Having blood work on Tuesday, followed by an appointment with the eye doctor to find out about the possible glaucoma. The fun never ends!

Hope everyone had a wonderful Thanksgiving. I for one have a lot to be grateful for, including the amazing people here!

Tig · Admin

How are you feeling Linds? Haven’t come back to earth yet? WooHoo!

Canuck · Guru

Ahhhhh, wonderful ... the sound of that silence, well ... if you could hear it over all that cheering, clappin' and fat lady's singing!! biggrin C.

Tig · Admin

That’s what I was waiting to hear!!! Congratulations, Linds! >>>WIN!<<<

wendyo · Guru

Linds - I can hear her!

Lindsmatt52 · Senior Member

Image result for animated gif fat lady singing

It is over and the fat lady is singing!!!! WOO HOO!!!!!

polosilver · Senior Member

Knock, Knock Lindz --- doesn't matter if its red/blue/orange/green/white -- just one more pill and you are FREE! Congrats on your EOT at 9PM!!

Image result for blue pill or red pill meme

Tig · Admin

The “end is near”....

Canuck · Guru

... 1 !!!!!!!!!!!! and she's DONE, they said! biggrin

I'm just imagining some confident pill tossing down the gullet going on, hope you're wearing one of those almost haughty,"we are most pleased" smiles on your face.

The best part of epclusa ... is the silence.

But don't you go quiet, kick up your heels a bit, don't strain your back tho! Treat yourself in some special way today and tomorrow just to celebrate your new-found freedom from pill duty! biggrin C.

robertsamx · Guru

WAY TO FINISH LM52. CONGRATS!! RC

Lindsmatt52 · Senior Member

Thank you ps. Your support and encouragement have been a lifesaver for me and I am so grateful that we could go through this journey together. We are warrior sisters forever smile !

polosilver · Senior Member

A mere 2 pills to go Lindz and you are a double Club Zero member. Zero pills, Zero VL....WTG! You are rockin' it sista'--

Grateful you are joining us here at the Club! Lots of thanks to give on Thanksgiving!

Lindsmatt52 · Senior Member

Thanks Tig! I'll have a lot to be thankful for on Thanksgiving!

Tig · Admin

WOOT!!

I‘m excited and I haven’t been swallowing the Dragon Decimators! We’re all so happy to be part of your successful treatment, Linds. You’ve been a solid trooper throughout and a good friend to everyone while doing it. This is a great moment for you and I’m so glad we get to share this achievement with you!

Time to pack your bags, this train ride is coming to an end. EOTville Station is the next stop on your journey. We’ll meet you on the platform. We’re the ones with bells on, jumping like fools, lol!

Lindsmatt52 · Senior Member

HAHAHA! Oh C-you made my day! My timer says 1 Day, 12 Hours and 41 Minutes, but who's counting? ME!!!

We are part of a very exclusive club and only those of us in it can truly understand the meaning of the "countdown". I can't begin to tell you what a comfort it is to have my fellow warriors by my side during the final days! Thank you, thank you and I thank God every day that I found you!

Canuck · Guru

3 !!!!!!!!!!!!!!!

Whaaalll, I guess ...taking into account the night shift on duty here, time warp, day-life-savings time, and making sure no pills are left standing (and, by the time you read this), you will be approximately ...

2 !!!!!!!!!!!!!!

Enjoy the last lonely sounds a mere couple of pills make rattling around in a bottle, so near! to be finally finished!, but it is that last one (that lovely complete silence) that is golden - no sound of pills, and that dead silent virus! biggrin

Tig · Admin

Hi LM,

4 more? I had you down for Thanksgiving, but went to the calendar and corrected that right away! Exciting times for sure. EOT is a moment we as Warriors, past and present, understand like no other. I have my dancing shoes polished and ready!

wendyo · Guru

Thanksgiving will be a real treat for you then Linds. NICE

Lindsmatt52 · Senior Member

Thanks C- Guess what? I miscalculated and my last pill is actually Wednesday, 11/22! It's like finding a ring in the box of Crackerjacks!!! So today I can say 4! Woo Hoo!!

Canuck · Guru

LM!!!!!!!!

5 !!!!!!!!!!!!

Canuck · Guru

Oh good! (Well ... not good, but you know what I mean!)

Ya, I thought yoga would be a safe class for me (never mind a lack of choices of classes), and generally the class IS good for me, but I can still manage to do weird things to myself via yoga, wgt room can be even more dangerous, or (for me) just walking across a room is sometimes death defying! Ya know what they say ... most accidents happen in the home!

My buddy and I realize we are getting older, when medical appointments, hair/mobilty/vision complaints and in-home fall injuries are discussed with other white hairs, like it's a normal topic, over a dinner out.

Glad the aleve and heat is helping. C.

Lindsmatt52 · Senior Member

Hi C-

No worries. My doc's office actually got back to me very quickly and said the Aleve was fine and it has helped a lot. I know I did it Sunday while reaching behind a couch to plug something in and putting my body into an unnatural position. Kind of felt a "pop" and didn't think too much of it, but for some reason, yesterday afternoon it began to cause great pain. I did some gentle yoga before that, so may have just exacerbated it. Have had a heating pad on it today and I'm sure it'll be fine. On the grand scheme of things people are suffering from here, this is itty bitty!

Thanks for your response!

Canuck · Guru

hmm, you wrote this 9 hours ago? Oh dear, well ... me, being late into the game here, I can only say I hope you did not have to delay (be in pain) for a long time before you found some relief! Without the benefit of your docs opinion, I would have just said ... go ahead, don't be in pain if you cannot get a quick answer from your doc's office - take your aleve if it is very painful. Likely can't possibly kill you (that's just me "guessing" about what all your other particular health issues may be) - I would take an initial modest dose of a pain killer (no matter whether it was OTC aspirin based, or tylenol based) and then get the more definitive preference recommendation from your docs office before you take another dose of pain killer..

Painful traumatic injuries justify analgesia, and hands-on local measures, rest, ice, heat, and then see, try to figure out what you have done to yourself that has created this pain to know what is best in how to treat it.

If you have really "ripped"/ torn something (muscle fibers/ joint/ligaments) fall/injury then a local application of ice might be good to prevent swelling, by tomorrow (if you suss in retrospect) that it seems just to have been more an over-stretch/strain/tight complaining muscles, then heat may be in order to try to relax/soothe the area and increased healing circulation to the area.

What do you think you have done, and how?

Lindsmatt52 · Senior Member

I have apparently pulled a muscle on my right side and it is quite painful, especially when I take a deep breath. So my question is, can I take one Aleve? I'm also emailing my doctor's office but don't know when I'll get a response.

Canuck · Guru

Ya, that Tig, had we got the memo earlier ... I would have asked for a king, outside suite with balcony please. Wish now, at times like this, I had some kids who were good surprize gift givers!

hm, yes, my best guessing (from my ureteroscopy experience), is that any item, like those stones or gravelly things trying to course and scrape their way into, along and out a narrow tube (not meant nor designed for such treks of solids) can create an exquisitely special excruitiating kind of pain. Even the such tiny looking things my friend passed caused her really, really terrible pain! Yet, oddly, you hear of others who have felt nothing! (or nothing to write home about) and yet they were sporting big ones in their kidneys, or those giant horny-type ones near completely filling up their renal pelvis area (blessedly unaware it was even there)?

And ya, BTW, don't do what I did! Stupid me, not knowing better, blindly showed up for this tubing torture, not ever discussing if it might be quite a painful thing. We never discussed the possibility of doing the procedure WITH short acting amensia drugs! I stupidly figured ... it can't be much worse than a urethral catheterization! I shoulda twigged, when they gave me a miniscule dose of valium about an hour before the torture! Man, I woulda given anything for some serious drugs or a weapon for a couple minutes there - hated that guy for not taking a kinder method. They did it to check patency and to collect a truly sterile urine sample directly from the renal pelvis.

ew, poor you, 25 years ago, they weren't blasting stones into nicer, more managable, smaller bits and pieces to make the passing of them possible or easier, so you must have rid yourself of them the old-fashioned hard way, the grit your teeth and moan method eh?

You've certainly had your fair share of hard things to get through, my sis in law (not so long ago) also had to go through what you did masectomy/rebuild, another sis (on the other side) did years of tamox following. What we have to do to survive! And we do it, and, we do. After your EOT, when you long past SVR12 and SVR24, it will be interesting to view back and muse of which were the hardest things!

Like jen said, what does not kill us ... well, you know ... but also it gives us such meaningful perspective, objectivity, and wisdom beyond what we would have EVER expected to gain, had we not gone through these things!

Pyelonephritis is just another name for a "bad" kidney infection (a tough little version of a glorified, well-involved/entrenched/deep-seated kind of kidney infection) - so, never say never, if you have had bad kidney infections in the past, it could well have been called or "classed" pyelonephritis.

Hey, what are you talking about! It's only 9 days, 20 hours and about 15 minutes, 3 secs, but who's countin eh?! heehee. C.

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