Dave said

Day 40

A bit of this:

Hi Dave,

It's possible you posted this last night when the date stamp becomes the next day because today, February 29 you should be Day 41 because I am day 21 and exactly 20 behind you.

See, we watch I hope you are doing well I hope the Riba is not too hard on you.

SF

Day 40

A bit of this:

... and a little of this:

... then there's this:

Thanks for checkin-in Scott, glad to hear your work trip went well.

Although omnipresent, the sides seem to tame a little ... either that or we just get used to them ... LOL

Take Care, drive careful and get back to us when you can.

Wishing you the best,

Dave

Hiya Syd,

You describe the Riba well ... You are so right about not being able to explain the mental effects.

Jo lives with me and is well aware that Riba has changed me since I've been taking it but like you say, unless one has taken it, they won't be able to comprehend the foggy, emotional roller coaster that we ride.

Simple things like trying to pay bills can become complex, difficult to navigate and an emotional affair ... I feel fortunate to be retired and able to just stay home through much of Tx. Oh, I go to local, small town stores etc but I know most everyone there and it's routine so not a big deal. Going to the big city and driving on the freeway is something I don't like even before Tx but on Riba it's a challenge to say the least. I don't seem to have any problems navigating and don't feel at all impaired driving (or I wouldn't do it), but the stress level is greater which makes it tough.

I think by the time I finish Tx +12 I'll be well versed in letting most anything go ... (like water off a duck's back).

Take Care and Be Well,

Dave

Hi guys,

its very difficult to descibe what Ribaviron does to your head to someone who hasn't been on it isn't It? I know it's clouding my thinking and that makes me feel very vulnerable. I know it's amplifying thought patterns I've always had. I don't know where the line between "me" and this drug is, which makes me feel as though I'm inhabiting a body I don't own. I know it's making me a bit paranoid and very irritable.

Now put yourself in a number of doctor''s surgeries and these people, with their air of entitlement and superiority, blithely making mistakes that mess up people's lives, are a bad combo.  I like your cattle/patient analogy Dave. And on another level I know they are motivated by a desire to make other people well. But that knowledge only comes in much later. 

And so we wait.... It's so hard when they are so completely oblivious to our feelings. I had my own viral load done yesterday - the nurse, finding it difficult not to cringe from me, said this might cost you $150. And I wanted to shout, I don't care, it's money I worked for forty years to save. I'm paying because I need to know. Now sanctimoniously pull your gloves on and stick that needle In my arm.

And then today a neighbour I hardly know from up the street mowed my nature strip. I went out to say thank you and burst into tears. 

Im okay, I'm okay... Just better hiding on my mattress than trying to deal with Other People from the depths of riba land.

Loved Tigs open door for dog clip. 

Syd

Scott,

That was from 1969 (Old, Old stuff ... like me), I think the lineup was the following:

David Gilmour

Nick Mason

Roger Waters

Richard Wright

SF, I am feeling better today.  I was a little manic.  Decided I am going to get into building models and went out and bought all this stuff and now I am overwhelmed and don't want to do it anymore.  Too late, I opened it all, I can't  take it back.  Maybe another day, I will try.  I have never done one before.  Never had the patience for it.  Maybe now is not the time with Riba rage.  I had 10 million ideas going on in my head but can't concentrate on a  single one for more than a second.  I have been like this my whole life when I am UP - I got used to controlling it but now it seems amplified. 

I hope everyone has a good weekend. 

Hey Tig,

"Look into my Crystal Ball (HepCfriends) to try to find some direction ..."

I think this qualifies ...

Dave

p.s. Maybe I need the newer model ... mine is from the 12th Century ...

Dave, Did that have some Atom Heart Mother in it.  That  is old Floyd.  I think the last song was off that album, I love that album.  I have a most of their old stuff during and after Sid and all the stuff up until Roger Waters left and David Gilmore took over the name and band.  I quit listening to either one when they are by themselves. 

Thanks for that though.  Great listen

Dave,

Buddy, you forgot to list the one thing that should bring hope. It doesn't disappoint!

Linuxter,

WHAT a terrible little person she is. It is hard enough without the likes of her. Horrid thing. She needs to ingest riba, and perhaps some other drugs.

Scott, 

Know what ya mean about your dry heaving and pain in your side being all in your head. Been presenting myself so long with minor seemingly unrelated and unjustifiable wee complaints, I was offered not once, but twice!, anti-depressants just in the last couple years before they finally accidentally tripped, stumbled, and fell over my hep c.

All of us it seems, have run into this "lack of help", or, the "kind" of help (that they think they are offering) that we DON"T need, at all!

The goldi-locks paradox - not too hot, not too cold, juuuuuust right - would be nice. Is it really so much to ask? Only allowed to present one complaint at a time per appointment, get a new GP every visit, trouble with continuity of care ya think! Never mind preventative health care! No wonder it's patient heal thyself. A big and lonely responsibility alright.

In self-defense I am drafting my own velpa war cry song/poem (because I can't seem to find thee velpa national anthem to sing along to, to soothe myself), and the second I DO get on ... I WILL BE chanting it!

Canuck 

"Every Rose has its' thorn".

Go for the Rose brother.

JimmyK

Dear SF,

Thank You, the oversight of Oreos in the Arsenal is Duly Noted and a new supply has been ordered, forthwith.

Hopefully they can send some, via courier, out to the Battle Field ... I just can't,in good conscience, tell my fellow Warriors that I have to go back for Oreos while they stay to slay fierce Dragons. (Just wouldn't be right if you know what I mean)

... picturing Knight in midst of bloody battle stopping to eat Oreos ... 'twood make a Nabisco exec cry, no doubt.

Dave

------------------ Onward ----------------- EOT ---------------------------------> SVR

Hi Dave / Scott

I am sorry you both had a bad experience with your Doctors. Today mine refused to have my VL done on my HVC at 4 weeks but I knew that was coming. (climbs in the boat with you both) not just a train.

Dave I know you will get through this, day 38 and you have all the right weapons as you say. I know you will use them. You are of course missing the Oreo ... Well I will let you away with it this time. \

Scott, I hope you are feeling better now. I am still counting and always will. I am waiting for the half way point and I will start counting down. I know my last pill is May 3rd.  Day 18. Actually I don't have to count, just look at Dave's and I am 20 days behind.

Everyone be well and have a great weekend

Day 38

I should be happy and excited as I approach the halfway point in Tx but due to several events lately (no doubt exacerbated by Mass Quantities of Riba) I feel little, if any joy right now. Originally I felt "In Control and Informed" regarding my Tx, now very "powerless and uncertain".

I suppose it's natural to feel this way, saturated with Riba and feeling several "non-existent symptoms", in limbo regarding knowing anything more for 18 more weeks but from a (loony) patient standpoint it feels like I've been stabbed, kicked hard in the ribs several times and left to my own volition in the mud on the battle field.

Rather than groveling about, throwing in the towel and crying desperately for a Pity Party  I think I'll make my way back any way that I can, Quench my Thirst and look about in my arsenal to see what weapons I have at my disposal.

Ah, let's see ...

Nourishment ...

Lots of Water ...

Examine my Options ...

Choose my Battles Wisely ...

Exercise to Regain my Strength and Bolster my Mood ...

Look into my Crystal Ball (HepCfriends) to try to find some direction ...

Drink More Water ...

Distraction, find Solace in Music and Entertainment ...

Enjoy sharing with Friends and Loved Ones ...

Count my Blessings ... (for I do have many)

Stand Tall, Don my Armor, Sheathe my Sword and Return to the Battle Field to Fight On ...

There will time to Party when the War has been Won! 

Oreos (on backorder)

Dave

Amsterdam 1969 Bootleg 

Spotify? Click the Headphones

Hi Scott,

Sorry to hear you're feeling down ... eat up, hydrate, take your meds and get to bed early tonight, tomorrow will be a better day.

I was under the impression that I was only going to be fighting a Dragon ... little did I know I'd have to fight to keep my sanity at the same time ... 

Take Care,

Dave

Dave, I have  been frustrated with mine too, saying that I don't feel side effects or my side doesn't hurt.  Makes me very angry.  Before I finally got treatment, I was dry heaving every morning for over a year and would tell the doctors that and I would say it was related to Hep C, treat me.  Oh no its not, its in your head. 

Very irritating.  Good job on holding your temp. 

I have been down today.  Even after my great news, I just couldn't feel it.  But, I am on day ??? now, I quit counting.   I know that tomorrow will be different and I can let my good news sink in when I am in a better state of mind. 

Oh, and my calendar on my phone has become my best friend (actually second, this site and everyone on it is first).  I must look at it 5 or 6 times a day to figure out what day it is.  But no, that's not a side effect.  Ha ha. 

Tig56 wrote:

---

Species? How about "Medicus Idioticus"? Be through with her, she's the waste of money...

---

 LOL, love it ... Thanks Tig 

... wiping feet now.

Species? How about "Medicus Idioticus"? Be through with her, she's the waste of money...

Hi Mike,

I'm not Undetected. My labs said <15 Detected may be a subtle difference but Detected is still Detected.

Little doubt that soon I will be Undetected but I won't know that until 4-1/2 months from now.

My PCP is very thorough, however, hopefully she'll order a Viral Load test EOT+4, she'll probably want to know herself.

Hi Jimmy,

She actually made TWO comments about "wasting money", the other was regarding me getting Hep A&B combo shots from the Health Department ... she said "I just tested you last month and you are immune to Hep B, not Hep A and taking the combo shot is a total waste of money". The combo shots are what the Health Department has on hand and they are free to anyone in the county who needs them.

My PCP told me to get the combo shots and that was before the ID doc tested me so I was just doing what my PCP advised.

I'm not really sure what species the ID doc has lodged up there but she really should call an entomologist.

Dave

Congrats on UND Dave. Your ID doc is not really the one that needs to be handling your treatment. My ID doc who I see for HIV, and who has an excellent reputation reffered me to a hepatologist to handle my HCV treatment for a good reason.  But you'll be okay because you have done your research and you know what to look for. I have no doubt you'll be UND throughout treatment but a EOT+4 test would have been less turmoil on your nerves for the last 8 weeks before SVR-12. I would have liked an EOT+4 from my hepatologist too but it really doesn't matter. Yes your clueless ID doc is right about that SVR-12 is the one that counts. That's all I give her credit for.

Linuxter wrote:

---

"... I asked why I wouldn't be tested again until then and she just said "It's a waste of money". Then she said, "We're done here, I sent the order for the labs" ... and she walked out..."

 

---

 Greetings,

I am beginning to see a pattern here with Hep Doctors (such as mine) talking to the "waste of money" aspect.

Have picked up on several comments regarding "cost", "expense" and the like from my Doc regarding Harvoni.

In my mind the question has always been, "your cost?", "your expense?" just whose cost are you speaking of?

It is a fact there is little debate on the issue of "cost", and that the drug makers are in fact taking advantage of folks regardless of who those folks are. But the argument, or point should be coming from those that incur such cost and expense and not some freaking Doctor who charges literally thousands of dollars to utter the phrase, "say awww?

I have fantastic Insurance by nature of the facts that, 1) I have a great job with a great Company and 2) I pay for it as part of my benefits which means as part of my payment structure.

So I take said Insurance to the Doctor who literally charges them through the nose for the honor of his having said hello to the insured, and then have to sit there and hear him comment on "cost"?

Dear brother you did great in controlling yourself and I have spent years bringing my rage under control, but the fact is there are limits to the greatest of Saints and some of these folks should consider that their patients are in fact WARRIORS and unless they are willing to get their little white coats "ruffled" they should practice some of the intelligence they claim to have. 

I am getting kind of pissed off watching a dear sister to The North of me sitting waiting for some sign of an OK come on in. I am getting pissed off waiting at the station myself, waiting for my appointment to see the decider in Chief with how my life from here plays out.

Ok probably belongs in the rant and rave section I know, but I do not like it when a brother or a sister is abused.

Music Fix! ~~~>  https://www.youtube.com/watch?v=jvipPYFebWc

There I said it.

JimmyK

Yay Wendy!

EOT + 12, that's the one ... you got it ... Congrats on getting there ... wait until next week then wait one more time for results and no more waiting ... 

Thanks,

Dave

Thanks Gracie and Tig,

Your thoughts are appreciated.

In all fairness, I think she just want's to cure as many as possible even at the cost of running her office like a cattle farm and sending one cow after another through the line to be inoculated and that's it.

She's a rude one and my providing any literature is not going to change her in the slightest, she believes what she believes and no one is going to tell her different so I don't think I'll waste the energy.

It's funny that you mentioned Healthgrades, that thought went through my mind in the parking lot as we were leaving ... she has a low rating, now I know why.

It's all carp under the bridge now, I'm on my way to SVR. I am glad I will be taking the meds for 12 wks vs the 8 wks and in 4-1/2 months I'll know more.

Only a hair over 6 wks and I'll be done with the Riba and life is bound to improve from that point.

I just don't handle rudeness and/ or incompetence well on a good day, on Riba I just shake my head and desperately try to move on, 'cause it's not worth raising my BP or living with the added stress.

I'll stay hydrated and I just made a nice smoothie to add some nutrients to the system, got to keep on keepin' on ... 

Dave

Awesome news Scott and kudos to you for not going off on nurse Ratched. I agree with Tig about Healthgrades....I did it after a visit to the poor excuse they call a doc...the woman that replaced my PCP who retired. 

Do not give her the power to spoil your celebratory news. 

I get EOT + 12 drawn next week. 

Hey Buddy,

Congratulations on holding your temper! Someone would've been posting my bail... She obviously has no understanding about the side effects related to Ribavirin. I might consider providing her some literature. It might save someone else the same nonsense. We know the problems that Ribavirin can and do present, obviously she skipped reading the manufacturers literature. Might feel good to leave an opinion on Healthgrades 

There is a school of thought that any viral load testing pre EOT +12 isn't necessary. While that technically may be true, it doesn't approach or consider the value it provides the patient's morale. After an assault by these behavior modifying medications, it does the mind good to know the viral load at the end of treatment. If they want to piss and moan about costs involved, reduce the damn price of treatment and medication. Quit getting rich at the expense of the patient. I would ask your PCP for an EOT and/or EOT+4 VL. If you're undetected at +4, you can be pretty sure you're golden. 

Don't let this ruin your day. It's not worth the inner turmoil. Might be a good day to purchase some new and appropriate music and zone out! Treat your senses to an audible escape... Hang in there and don't forget to hydrate. Nothing has changed except your opinion of her. The train is still on schedule!

PS: Congrats on the <15, that really is outstanding in 4 weeks time!

Hi Dave,

My hepologist also said end of treatment plus 12 is the only test that mattered and is becoming the new standard. It was the old treatments where 4 week tests mattered. That said, I did manage to convince her to give me a 4 week and a 4 week past VL test, more for my own sanity then necessity as it's still a possibility I could relapse between 4 and 12 weeks past. Small chance but still a chance. It would have been an impossibly long wait for 24 weeks of harvoni plus 12 weeks past plus two more for results, but as the oldies can attest, the wait was even longer than that on the old treatments, with way less odds. 

Keep trucking along my friend... One day at a time will lead us to SVR no matter what train or trains we need to take to get there.

Trip to the ID (Infectious Disease) Doctor was a total waste of time and energy.

She comes into the room totally wired out on something and asks me how are the side effects.

I told her about the Brain Fog and Mood Swings and she said "No, no, no, that's not from the meds, that's just a hold over from the Interferon days" ... I told her it's right on the drug company's monograph and I am having mood swings, she just said "Well you're not having mood swings from the meds I prescribed".

I didn't argue the point, but needless to say it just went downhill from there.

Next she told me that <15 VL is Negative and she ordered labs for 12 wks after EOT ... I asked why I wouldn't be tested again until then and she just said "It's a waste of money". Then she said, "We're done here, I sent the order for the labs" ... and she walked out.

Well, I pat myself on the back for not exploding with anger, I just said to Jo, "I'm just glad I'll never have to deal with her again".

If, for some reason my labs still show detected at EOT + 12 wks, I will not be going back to her, that is a certainty, she obviously doesn't know her ass from a hole in the ground. Bed side manor F-. Knowledge F-, Competence F- ... my faith in her ability 0% (... actually make that "Negative")

... total waste of time. 

... but, I'm home now, safe and sound, sun is out and the ID doc is history.

Too bad, I was hoping to know something sooner than 18+ wks from now.

I'll talk to my PCP and see if she can order a Viral Load perhaps EOT or shortly after and explain what went down, but Doctors don't like to hear bad things about other Doctors so I will probably only mention that she said any testing between now and 12 wks is a waste of time and I disagree. After all, it's not my insurance refusing to perform the test, it's the ID doc.

... think I'll drink a gallon or two of water and get some fresh air.

Dave

Yay! So glad for ya Scott! Canuck

Fantastic News! Another one bites the dust!

JimmyK

Excellent News Scott!!

YaaaaaaaaaaaHoooooooooooooooooo!!!

So glad to here it, smooth sailin' from here on to SVR!

The pup is Timber, the Best Friend I EVER had, and I don't say that lightly.

Unfortunately he is no longer with us but we do have two of his sons, they are both 10 yrs now.

They are Wolf Malamute mix.

Dave

p.s. Gotta run, Doctor's appointment in Vancouver (40 mile trip).

Looking good Scott. Keep doing what you've been doing. You will get accustom to seeing that UND but the first one is exciting.

Thanks, yes this does feel great.  17 years of an itch I couldn't scratch.  It finally  doesn't itch so bad today.  I woke up a little down today but this definitely brought me back up. 

Thanks again. 

Hey Scott,

Congratulations! That first undetected viral load report is worthy of framing. This is just the beginning of all the good news your future holds. Celebrate the day and remember it as the first day of your new Hep C free life!!!

Way to go Scott.. Hitting the UND mark feels good!!   RC

YAY

Narrative

Hey Linuxter,

Somebody said your ass was dragon! 

But, I corrected them, informing them -  it was your dragon who has been knocked on his ass!

Alas, the evidence I directed them to, to prove my point, was gone! - you've dragged that fallen dragon carcass off your avatar spot!

Please introduce us to your very fetching new avatar friend!  C.

 ... "in the wind" ... always glad to have that goin' for me at such times!

(I quickly learned not to make broccoli green smoothies unless it's a windy day ...)

Live and learn,

Dave

Linuxter wrote:

---

The Riba still has it's moments but at least now I know they will soon pass, 

Dave

---

 Like a fart in the wind brother!

HiYa Tig,

Thanks, second meeting with my ID Doc tomorrow, it's supposed to be @ 6 wk point but the only appointment available was a tad early. Works for me, I'm curious to see what she has to say, I can only imagine she'll be very pleased. At this point, I'm more interested in when my next Labs will be and what the plan is from now to SVR.

Another partially sunny day here and FedEx brought my next 14 day supply (two more shipments left which has a nice sound to it). Sides seem to have hit a plateau and are a relatively small annoyance now compared to early on.

The Riba still has it's moments but at least now I know they will soon pass, especially if I drowned them in mass quantities of H20 and ...

All is good, can't quite see the light at the end of the tunnel yet but I know it lies ahead.

Hey, I see you're goin' ZZ Top there ... How, how, how ...

Dave

Happy Week 5 anniversary my friend!!!

Hiya Wendy,

Thanks, yes, I'm layin' low today, slept in this morning and plan on getting in a little exercise this afternoon (stationary bike or walk), it's a beautiful sunny day out ... nice change from many rainy ones.

Got another batch of meds ordered yesterday so they'll come in tomorrow (always a relief to have a new 14 day supply so I can relax about that).

My second official appointment with the Infectious Disease Doctor on Thursday which will be informative (find out when next labs will be and a little more of what to expect for the rest of Tx and beyond).

Day 35 (wk 5) .... Onward to the halfway house ... no, that didn't come out right ... closer to halfway to EOT ...

Life is Good! 

Dave

Edit: Got out for a leisurely 30 minute bicycle ride, short ride but it got the heart goin' and me breathin'.

Glad you made it home safely Dave. Take care of you today. 

Trip is usually not bad as long as I time it to avoid rush hours, but there's always the 27 idiots who think its more important to talk on their cell and get to wherever it is that idiots go faster than everyone else ... than to get home safely and not endanger the lives of others.

Yup, it's "Floyd Time" ... 

 

Dave

That sounds like a harrowing trip! Good grief, what an awful thing to have happen with a body full of Ribavirin. That trucker is lucky you didn't return the favor. I'm glad to hear you made it back. Time for some Floyd....