Hep C Discussion Forum

Hello to all my HCV friends, especially Tig and Canuck.  Just wanted to check in and say hi!  I haven't been on the board in a while, but recently had my one year check up and am still cured!!  ALT and AST are both at 17.  I'm doing great and wanted to say thank you once again for helping me to get through this journey!  I owe you all my sanity and could not have done it without your guidance, support, and love!  

Ya, both the links are good. They both list most of the MS drugs, including the interferon beta-la and lb, and copaxone (what Lamont has had I believe) and all are dif from one another. That was my thinking too Tig, an effective alternative with less cost? I don't know much about the dif drugs they use for MS. There was a bit of a description on the different actions in the first link as well. Maybe send your friend both these links, and see if she and her doc had already perused and discussed all the drugs and which ones might work best for her, considering everything. Maybe she and her doc have already explored and decided on the right drug choice for her, but then this still leaves her with the cost problem. hm. C.  

Tig and Canuck-Thank you both for your responses.  I pm'd Lamont and hope he may be able to give me some insight to pass on to my friend.

C, in answer to your questions regarding my polyps, I haven't actually seen my Doctor (NP) since I had the ultrasound as she didn't seem to think a follow up was necessary.  I received a call from the nurse with the results and was mailed a copy.  The pain seems to have gone away for now so I'm willing to take that as a good sign and not do anything further at this point!

Hope everyone is finally enjoying the springtime weather that we're experiencing here!  Nice to finally see the flowers in bloom!

Hi Linds!

It's nice to hear from you. I'll have to do some looking on that MS information. In the meantime, our member Lamont, mentioned he has been under care for MS, too. Here is his profile page, Lamont Cranston. He's very helpful and I'm sure if you send him a PM, he will respond. If anyone knows those ropes, it will be him.

I'm glad you found out about that RUQ pain. The polyps diagnosis is more common than many think. The only time they will remove your GB because of it is if it starts to obstruct the common bile duct. That's the same type of issue people experience with gallstones. Once that duct closes, the gallbladder gets very angry! If you don't need surgery, avoid it. We've all gone through enough! 

I'm going to enjoy a quiet Cinco de Mayo and go to a friends for dinner, maybe a trip to Waldog and watch a few Walmartians for fun. I will be watching the Derby, no picks yet. Looked like it was raining earlier. A muddy track always favors the longshots! Enjoy the day! 

Hey LM, 

Sounds nice  (your away). I am doing an "away" right now, not as fun though, 2 hour drive to the next real city over, staying overnight, going to the periodontist tomorrow to be gouged physically and my wallet. Wally-world on novacaine will be my version of a holiday before I go back home tomorrow.

Nice you got folks/friends in Texas to go visit!

Good you are back to see your doc, yup ask about the persisting RUQ, maybe it will turn out to be a very mysterious but nothing thing (I hope). I had a pain (for decades) intractable, mysterious, it grew over the decades, became constant, and just had to learn to live with it, just got worse and worse and never left, always thought it some kind of bizarre musculo-skeletal thing!, after cure, one day, and bit by bit, it just vanished!!!!!, completely! - you coud have bowled me over with a feather! I could hardly believe it!!, it just up and disappeared, vapourized, I kept waiting for it to return, but it never did. Man, was I EVER happy about that - my hep doc still does not agree with me that it had anything to do with my hep, I disagree strongly. I have had a good look at my imagings, no real bony reasons evident to account for such a profound turn-around in the pain. The only dif was the lack of hep, so that's my story and I'm stickin to it. I draw a straight line between that pain I had and the hep. I hope your pain just up and leaves all by itself one day too. In the meanwhile you are doing the right thing, and get your doc to keep checking it out.

Let us know what the doc thinks.

My dog would be completely passed out in the vehicle, we always hoped she would just keep sleeping on our 2 hours drives over to the next city, but nope, she would magically wake up, exactly a few seconds before we were trying to pass a lake she liked, no matter how much of a hurry we were in, she would somehow become conscious and make us stop. How do they do that?

So, do your eyes "feel' any dif? Did you give anymore thought to yoga? Nice to hear from you.  C.

Hi Linds,

I saw your Vosevi post to RC, too. How cool was his news? Yeah!

It’s always nice to see our longtime members checking back in. It has been kind of quiet around here and I miss the interaction with all of the friends made over the years. So, it’s a fine day when y’all check back. When you do, whomever you are, be sure to fill us in on all the particulars. Your success brings hope and confidence for those beginning their journey.  

You're right, Tig! I think it's still sinking in. But each day is better than the day before, so I'm getting there!  We do have a lot to be thankful for, not the least of which is all of you here!

OH PS!!  Thank for my songs!  I LOVE your choices and yes, the stars do look very different today and I am HAPPY!!  Thank you for giving me one more reason to smile today!  You have been a huge support for me and a good friend!!  It's all up from here!!

Hahaha C!  You hit the nail on the head!  One minute so frustrated and angry and then when the good news comes, you want to send them flowers and candy!  My NP said I don't really need to see her now that I'm considered "cured" although I do need to check my LFT's every three months for the next year.  I may make an appointment with her just to go over anything I may need to know, but I think she's probably ready to dump me!  Obviously,  some practitioners are more empathetic than others.  I will probably bring them a batch of cookies on my next visit since I was likely one of their more "persistent" patients.

I'm going to keep checking in here because I feel as though this is a unique family that I want to keep in my life.  Canuck, you have a humongous heart and your ability to grasp the emotions and ups and downs of this experience are invaluable, not to mention your unique sense of humor.  Thank you from the bottom of my heart.

Thank you, Tig for your unceasing positivity, knowledge and support. I can't really find the words that adequately express my gratitude but please know how much I appreciate all that you do.  I am constantly amazed by the dedication that all of you put into this cause and will be forever grateful that I was lucky enough to find you.

And finally, thanks to all the other dragon slayers who have offered kind words and support during this journey.  I feel incredibly blessed to have such an amazing group of people in my corner.  I will continue to send positive thoughts and prayers to all the warriors, past, present and future until this insidious disease is eradicated.

xoxo

Congratulations fellow dragon slayer.

                ~Hear Ye, Hear Ye! Be it Known~

                              Warrior Lindsay     

                           Is Awarded This Day

                                     The Title

Thank you Tig.  Your guidance and support have been immeasurable!  

HOORAY!!!  Congrats Lindsay  

I know you were nervous, but I knew this was never in doubt. You exhibited every  sign of success along the way. I know when you’re talking about yourself, it’s difficult to be the concrete observer, but WE knew you were destined for SVR. These new treatments, done right, are the real deal. 

You did it and I’m so happy for you! 

PS: Glo knew it the whole time 

Whal shoot! The only recourse is to get even then! Plot some dastardly deed on par with what they are putting you through!

Still, take solace in knowing you have done everything humanly possible to orchestrate your cure, and that you did it (every minute of it) extremely well. Being very (justifiably) proud of yourself should take some of the sting out of them irritating and taunting you so with their screw ups. 

Personally, I did a lot of private gloating after that last pill went down my gullet. Quite a feat we have got through my lady! Hey, me too, I want a certificate!! I had to make my own.  C.

Hey Linds,

That really stinks! That’s my kinda luck. I don’t think you have anything to be concerned over. With LFT’s like yours, I’m confident of the outcome. Spend the time planning your celebration. It won’t be long and you’ll have your answer.

I have an idea. Here is my therapy fish, talk to her, her name is Glo. They’ll always help take your mind off things! She hates Dragons, too. My kind of fish....  

OK-I need to vent.  I had my SVR12 blood work last Tuesday morning.  In the past, I have gotten my VL results back in two days. but I understand I may have just been lucky.  I called the lab (Quest) on Friday and was told the test was still pending and the turnaround was 3-5 days, up to a week.  The rep said they probably wouldn't be back until Monday.  SO I called Monday and still pending and again today-same answer.  I finally convinced my GI's office to call the lab and they were told that the equipment used to run this test at their lab is malfunctioning and there is no eta on when it will get fixed.  I realize there are only a limited number of labs that run this particular test, so I guess I am at their mercy, but I am just beyond FRUSTRATED!  If I didn't have this annoying twinge in my RUQ, I probably wouldn't be as anxious, but I just want confirmation that I'm UND.  Grrrr...

Wowee Lindz!!

I'm with Wendy, never seen  nor heard of LFT's that low! How low can you go girl? You win the LFT limbo for certain! Congrats, Congrats --- what a wonderful experience to give HCV the boot! 

ps

Thank you, Tig.  I will try to continue to stay positive but it sure helps to have your support, encouragement and understanding.  

Me too LM, I feel grateful to be here and to know and appreciate everybody here. I can't begin to tell you how much this place and all the folks here have helped me. Who ever thought up this idea was brilliant! It is like family (sorta), better in some cases (heehee).  C. 

LM,

Hm, don't wind yourself up - counter productive - be soothed (for the time being) with at least knowing your continuing nice low ALT and AST - that has been a telling marker ever since you got your very first (early) UND! The UND's and normal LFT's go hand in hand - with your early ALT crash and VL crash, and staying that way since the get go (aside from the fact you have just done about the best curing drugs in the whole wide world!) this is why I am confident you are UND. I think you know it too, but i know your frustration while waiting, well!

Boy, (generally) most of you guys seem to get your VL results back so relatively fast!. I sometimes had to wait for weeks, and I understand how gruelling waiting can be! It was my pet peeve, more than a pet peeve, it used to make me very angry. And of course even though i KNEW I was going to UND, still, it's will not feel official until you have the results, so it can leave time for your mind to fantasize. Don't go there, stick to the facts you know, you have been UND all along, LFT's normal, and you will be perfectly UND, again, now, and from now on. You've already won!

Start preparing a little something for you and your partner to celebrate the day you get this UND result back, think of something special and appropriate - it will help distract you today. Go out and buy him a congratulations card or some other weird idea like that (I am full of weird celebratory ideas!) maybe pick up a couple gallons of maple walnut ice cream, build a cake, you could sit down write a long good-riddance and good-bye letter to your virus, but you might have trouble addressing the envelope, as the viral occupant moved on and disappeared long ago.

You already entered into the beautiful territory of Gilead's "no trace camping" rule forest.

I mostly got very mad when they kept me waiting weeks for my results. Phone AND email them again tomorrow, maybe the results will be in by then, if not you got the weekend to practice partying.

It's a good day to practice that 4-7-8 exercise, and WTH, splurge, do it with your eyes closed!  C.

Look forward to your results Lindz!!

ps

LM, 

Who in the world would have EVER dreamed we would be SOOOO looking forward to having painful spikes driven into our arms for bloodletting. It's times like these that only make sense to us!

It will be a good day, another milestone to show for all this hard work you have had to do.

You will be UND again my dear, and will stay that way. You and Gilead have done it.

H2 antagonist or H2 blocker is the "Pepsid" you are on. They switched you from ... something else ... to the Pepsid when you started your epclusa, and I think? you are still on it?? Just wondered, if you were still having reflux probs, or were thinking you needed to switch back to what you were formerly on, or if you noticed any dif/improvement in gastric/acidy reflux probs in general or if it was still about the same level?

Ya, if I don't "religiously" take the fiber cereal WITH extra fiber on it, AND have enough water intake, sure as shootin, I end up bunged up. Those three simple things alone, keep things working for me, as long as I do them pro-actively every day.

The lady who often ends up on the floor beside me in yoga class, is a riot, she grunts and groans and carries on, she always makes me laugh, we make each other laugh actually, much to the instructors chagrin sometimes. But boy has she ever got the relaxation part down pat!, she immediately starts snoring the instant we start on the total relaxation parts of the classes. She woke up, and asked me, is it over yet? (The class she meant)- thats' how deep she goes in just a split second, she couldn't tell how long she had been out! My instructor has another type of yoga class, I've never been to that one (yet), "Restorative" yoga, and she says VERY often she has people who fall to sleep in that class!

For these breathing/relaxation exercises you are practising - they say you should practise them with your eyes open, not wide open, but not closed either, just open or slightly open, you will get used to doing the breathing with your eyes open, and this will help you to not fall asleep but to continue with the relaxation and breathing exercise. You can also pracise the exercise sitting up, versus laying down, this may also help in not falling asleep. 

EOT+12, is a very good place to be! When you get your UND back, it will be one more layer of well-deserved rest and relaxation to waft over you.  C. 

Don’t you worry, Linds! You got this....

Ya! ya kint be tooooo karefull. Hurt myself worse in the weight room one time (well ... actually twice. I've always been a slow learner)! I am NOT physically adept, at all! I have hurt myself at "boxer-cise", regular-cise, yoga-cise too. She-et, I can hurt myself walking down a hill, or often just by steppin the wrong way, in my own house no less! 

The thing I have learned to do best at the yoga class? ... I take a bottle of water with me, and I usually finish it before the class is over! I do think tho, just going, the concentration, the effort, is rewarding in itself. But I HAVE actually made "some" small but important physical gains with the yoga classes, even if it is not enough to be a "sufficient" amount. Winter around here is seriously getting old and getting in the way of my other form of "walking" exercise.

I am wondering LM, what with both you and Lamont having such bad past wrist injury/fracture thingy's, it may be a bit hard in a yoga class to modify your hand/arm/shoulder wgt bearing positions so as to not strain stuff. I have to do that for my wrists most of the time in any class, and for one shoulder that I can tweek if I am not careful. We come with handicaps and stuff that have to be worked around. Worrisome in how to allow for a L1/2 herniated disc I guess. 

So, us epclusers and super-dooper-epcluser-plus people, being lovingly cured by Gilead of the scurge virus - await the final outcomes on ALL our health states. I (for one) have found I cannot get by without "regular" (pun) hydration, fiber cereals and fiber sup/additions to my diet, otherwise, bunging will occur! Nice (other than the farting syndrome Lamont) that your GI appears regularly "happier" overall.

LM, are you still "making do" with your H2 antagonist for now?? Do any gastric/acidy conditions seem changed, or unchanged so far?

I sniff spring, it's juuuust around the corner, the sun will be shinin, de fish will be frying (or flyin) and health investments risin.  C.