Hi Miriam,

2/3rd's of the way through, woohoo! Instead of your vacation being impacted by treatment, treatment is being happily impacted by fun and good food! My, how times have changed the landscape of treatment.

Two months into my second round of treatment found me confined to the house and wiped out. The progress of current care has radically changed the future for potentially millions around the world. 

Say hello to South Carolina, it's a wonderful place! Good luck on your final 4....  

Hi ya marjim,

North Carolina, South Carolina, Harvoniland - you get around alright girl, and they ALL sound like really nice trips! Last bottle - yay!  C.

Canuck,

       Just started  last bottle of Harvoni. 4 weeks to go.

       Went to our favorite  French cafe in Wilmington, NC.  Chef was more than happy to make my mussels  without  wine. They were magnificent!  This weekend  we go to Charleston,SC. Plenty of food to get without  alcohol. 

Lovely. A stellar und to add to your other stellar 4 week labs! That's the way we do it!

So nice for you. Finally, you will be rid of this C that you battled long and hard.

Good going! And speaking of going, I hope you enjoy that lovely trip you spoke about (all the more now).

Mopping up that tasty broth of life now sounds very delicious indeed - enjoy.

BTW - it does NOT apply to your tasty cooked mussels - but the "funky" organism I was trying to recall the name of, about raw oysters ... was "vibrio vulnificus", I may have little memory left, but I do write things down!!

I am happy you are having a good and quick response to treatment - you deserve it.   C.

OUTSTANDING, Miriam! Such great news and we knew it a long time ago. These are excellent treatments and you were blessed with one of the best. Keep it up, you're getting close to the station. Congrats on that undetected!

Don't forget to drink that water!!!

Yay, congratulations, I love that word, soon you'll be saying "Had Hep C" 

Nice going Miriam!

Always so great to hear that word "Undetected"!!

Congrats,

Linux

wendyo wrote:

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Now that's what I'm talking about. Congrats Miriam

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 Thanks

Now that's what I'm talking about. Congrats Miriam

Dr.'s office just call. VIRUS UNDETECTED,  LFT'S NORMAL!!!!!!!!!

wendyo wrote:

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keep you posted on glued shut, clunk and cracked. Wait till Syd reads this one!

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 Roger that Wendy. We have Medics standing by.

keep you posted on glued shut, clunk and cracked. Wait till Syd reads this one!

Well y'all know me, I just thought the timing of the article was hilarious.

Yesterday we are talking about, "sure no problem, should be fine, bla bla bla..."

24 hours later...

"What happened to my butt, it was cracked yesterday?!?"

LOL

JimmyK

Mussels and glue? This isn't going to glue our butt shut is it? If you hear or feel a "clunk" during that colonoscopy, you'll know there's something fishy going on, lol!

Thanks Jimmy, seeing as I made mussels yesterday and Miriam's on her way to some too. Thank God I have that colonoscopy in the 22nd

LOL, boy talk about timing!

Navy Study on Underwater Glue from Mussels 

Ha ha!

Awww I can't eat those bogey salty slimey tasting live Oyster critters - Yes, I know because I ate a few bogers as a kid... ;)

Nothing like Muscles cooked and prepared in France with white wine, garlic and herbs. YUM YUM.

Why do I always up up hungry on here? :D

Wendy...the broth is usually  so good that I could actually drink it.....actually I kind of do that....I save one of the half shells, and scoop up the broth to drink.....just wondered if cooking with white wine goes against  the no alcohol policy  since supper lyrics the alcohol  burn off during  cooking. 

Eagerly  awaiting  rest of 4 week test results

Tig56 wrote:

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I was told to stay away from raw oysters. They have the potential to expose the compromised liver to some funky invaders. I must admit to eating them on occasion anyway. Not endorsing it, just admitting I lack common sense when they bring out the Apalachicola Oysters. Should be okay for me (I think, I hope), I'm free of that pesky virus now. They are so good, little hot sauce, little horseradish and slurp..... 

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I believe it applies to all shell fish. I love um too but ya have to be very careful.

I do that too Miriam, I was trying to be silly and was envisioning you picking up the bowl and drinking it, like kids do with soup bowls or to get the milk after the cereals gone. LOL.

Wendy

   The broth is the best part. You dip your bread in it.  Ingredients  are mussels, whit wine, lots of garlic, some lemon juice steam in pot until mussels  open. Throw out any unopened  ones since those are dead.

  Got tickets to a show 8 Wilmington,  N Carolina.  Great French restaurant  nearby.

I was told to stay away from raw oysters. They have the potential to expose the compromised liver to some funky invaders. I must admit to eating them on occasion anyway. Not endorsing it, just admitting I lack common sense when they bring out the Apalachicola Oysters. Should be okay for me (I think, I hope), I'm free of that pesky virus now. They are so good, little hot sauce, little horseradish and slurp..... 

Miriam,

Glad you saw the order on your request form. Just confirms what we thought. It's always good to know such things and I'm glad we could answer your question. Enjoy the vacation!

Fully cooked should present no problem.

Raw? Like any "Shell Fish" they can bear Hep A.

I would be far less worried about the white wine. That to me, and in my personal opinion only, in such a case is a non-issue.

Properly cooked shell fish of any sort are not an issue but a lot of that stuff is enjoyed raw and that is not a good idea.

My 2 cents and my opinions are not those of or endorsed by this Forum.

Oh and I also like all forms of music, so there.

JimmyK

On the subject of mussels - I do not know. But I would think, cooked and in season, they would be just fine.

But, I have come across two (very obscure) different, interesting articles to do with "food induced" infections, and the articles specifically pertained to those of us who have HCV/HIV, etc., who's immune systems may be having a very busy time, and where an "additional" infection (of any sort) would not be welcomed as a "bonus".

It seems these "food born" infections are NOT common (RARE I would hazard a guess), but had to do with ingestion of "raw oysters" being the source/carrier/vehicle of transmission of a "particular" infective organism, and, peanuts being the other food vehicle, that harbours some kind of mold or such, both of which were mentioned as being bad news (additional) infections for those of us already in midst of battling HIV/HCV infections. 

I am only offering up this "vaguely related" tidbit of info just because the "food" subject was brought up, I assume cooked mussels would be just fine - why would they not? I have never read anything bad about cooked mussels!   C.

I don't think you are drinking the broth from the mussels (are you Miriam? LOL) so I would say eat the mussels. I am sure I had them while on treatment as I love them. 

Fasting is not required no. To this I agree. The interesting thing is fasting does have an effect yet differs between male and female.

http://jcp.bmj.com/content/67/6/529.abstract

All this really tells me is the test itself is quite sensitive and as such also tells me that levels fluctuate.

Again, I see no issues your numbers are very good!

Your Brother

Jimmy

Just pulled up the 12 week blood order. Fasting not required.  I assume  the doc will call once viral load numbers are in. The way I saw these numbers  was that I got an email  from Quest  saying  new labs were posted  on My Quest  which is the patient portal. Since doc's  office  is closed  today,  they probably won't see even this till Monday.    

Another  random  question. ....I know we cannot have alcohol. .....is it OK to have mussels made the traditional way with white wine and garlic?I heard the wine burns off.  Or better to stay away from it?

Miriam,

Some tests require it and it is specified before testing. Any tests that I had through Quest, if fasting was necessary, it was clearly stated on the request. If it was a requirement, they confirmed it prior to the draw. The tests you listed won't be affected by fasting. I didn't have to fast for my liver function tests. Remember, some medications will alter test results or be responsible for the elevations or reductions in them. Harvoni is known to raise Bilirubin and your ALP is only slightly elevated, which could be a result of treatment as well. Your doctor and/or Quest would have said something if fasting had been a requirement. You can call your doctor if you want confirmation. Things look good to me.  

Jimmy....

      Wasn't  told to fast before bloodwork. How would that change numbers

Hi Miriam,

Excellent looking numbers, your system is responding very well to Tx!

Stay complaint on the meds, drink LOTS of water, keep eating well and Have a special time on your vacation, you deserve it!

All is looking great,

Linux

Neither of the two numbers are of concern. Phase 3 studies showed some folks on Harvoni had a increase in Bilirubin. By the way did you fast prior to the blood work?

Jimmy

Hey Miriam,

I like the numbers! Excellent enzymes indicate a happier liver. Harvoni has caused Bilirubin elevation in others, it's not uncommon and returns to normal post treatment. The ALP is only slightly elevated and is seen in HCV patients, so yours is possibly a combination of that and Harvoni. I wouldn't sweat the small stuff. We routinely see fluctuations in lab values while on treatment. I think you have a lot to be pleased with! The rest will resolve after treatment and your doctor will monitor these as you progress. It's all looking good!

Jimmy..

    What are those 2 numbers came came High?

Do I like my gastroenterologist  any better?    She wrote out the Quest script for my 12 week blood work to be done in SC but I woke up during  the night and realized that something  didn't look right. Ran over to Quest in the morning  and Alex confirmed  that the office  had made 2 errors in writing  out the order and Quest would  not be able to run it.  So I ran back to the office hours before  leaving  for vacation.   They ran the same errors  on the baseline blood work form.  By now those girls in the office  should  know how to correctly  fill out a request.   Last week's blood was drawn in their office so i didn't need a form. 

Something  on the form still doesn't look right. Will have to check 

Wow talk about a happily resting Liver!

I am not going to ask if you like your Doctor any better but this my dear is working perfectly!

JimmyK

You guys are too funny

First batch of 4 week Harvoni bloodwork is back.....

   AST      20          For some reason Dr. Hadn't asked for it in baseline.

   ALT      18          Was 30

There are also a bunch of other things all in normal range that I don't see on my baseline bloodwork.

But two things came up in HIGH....Alkaline Phosphatae    133        range is to 130

                                                     Bilirubin Direct             0.3       range is to 0.2

I did't see either of those in the original baseline bloodwork.

The frozen results should be in at end of next week hopefully.

Hey Cheddy,

I have to set the record straight. Jimmy is the 6' 4" 250 pounder in muscle shirts, riding the Harley. I'm just a 6' 1" 210 pound Toyota driver, lol! As usual, our Brother Jimmy, has some very good advice!

... do have a wonderful vacation!

Linux

Well Tig, I certainly wouldn't mess with you!  

My spousal unit and I share important medical appointments, too.  It helps to have a separate set of ears and a loved one.  Is not up to the doctor.  It's my healthcare and she/he is working for me.

It's a lovely idea to disarm with the card and always a good idea to express appreciation. And if you're catching flys, I hear honey works.

You're a real gem, big guy.

Sage advice from our favorite star gazing Biker!

Thanks JK....            

JimmyK wrote:

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LOL you know, every time Carolyn went in to see the Doc, I was right there.

Carolyn is about 5'4" or so. Little bitty thing and makes the Doctor feel kind of tall coming in at about 5'8".

I come in at 6'4" 250 lbs and have yet to hear him complain about my presence.

He greets me gingerly, shakes my hand and says, "please have a seat.." This is the point where we generally see eye to eye. LOL

You know folks, we have all heard all kinds of tales about our specialists. Some are cool, some are not. Some listen and some don't. Just try and remember when dealing with them that they all will one day be in our rear view mirrors waving goodbye as each of us enter the new phase of life free of The Dragon.

This too shall pass. One great way to turn the tide while in a less than perfect relationship with a Doctor is to send them a thank you card between visits. Alone with the card is cause for them to momentarily reflect and I can almost guarantee the next visit will go better. 

I have actually done that and it really works well. Facing a 6'4" Biker in a tank top, tattoos both arms, and a buzzed head takes on a different appearance when the guy remembers the card just saying "Thank you for what you do". It allows him to consider the kindness of the card, or the prospect of pissing me off and amazingly, things go kind of well from there. It's a kind of Magic!

LOL

 

JimmyK

 

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LOL you know, every time Carolyn went in to see the Doc, I was right there.

Carolyn is about 5'4" or so. Little bitty thing and makes the Doctor feel kind of tall coming in at about 5'8".

I come in at 6'4" 250 lbs and have yet to hear him complain about my presence.

He greets me gingerly, shakes my hand and says, "please have a seat.." This is the point where we generally see eye to eye. LOL

You know folks, we have all heard all kinds of tales about our specialists. Some are cool, some are not. Some listen and some don't. Just try and remember when dealing with them that they all will one day be in our rear view mirrors waving goodbye as each of us enter the new phase of life free of The Dragon.

This too shall pass. One great way to turn the tide while in a less than perfect relationship with a Doctor is to send them a thank you card between visits. Alone with the card is cause for them to momentarily reflect and I can almost guarantee the next visit will go better. 

I have actually done that and it really works well. Facing a 6'4" Biker in a tank top, tattoos both arms, and a buzzed head takes on a different appearance when the guy remembers the card just saying "Thank you for what you do". It allows him to consider the kindness of the card, or the prospect of pissing me off and amazingly, things go kind of well from there. It's a kind of Magic!

LOL

JimmyK

Will post results  as soon as I get them

I hope all this hasn't ruined your taste for a decent holiday. Obviously your Doctor was having a bad day when you saw her first time. I think we forget they are human sometimes, but still, a lot has to be said about bedside manners.

Have fun, and enjoy! :D

Enjoy your vacation, you deserve it!

Hi Miriam,

So glad to hear your doctor finally figured it out! She obviously had a burr stuck in her butt the last time. We'll give her a pass this one time! I knew Quest would be able to handle your viral load at any of their accredited labs. Good to know they handle it at the same facility. It'll be fine and so will you!

Enjoy your trip and do some relaxing, you earned it!

Doc rolled her eyes and said, "you are perfectly capable  of understanding  everything  I have to say". Never had a doctor  say something  like that.  My husband  is also a better speaker than I am. He has worked  in the pharmaceutical industry for over 40 years and one of my other  docs even calls my husband  with drug questions.  He has no problems  dealing with the FDA and certainly  none dealing  with this lady.

I spoke to Quest.  This blood work  is frozen and sent to the same lab. So the parameters  should  be the same at any Quest.

Eagerly  waiting  for results. Leaving  for vacation.   

Hi Miriam,

Your doctor is a piece of work. I have taken my wife into every single appointment I had with my gastroenterologist for over 12 years as a second pair of ears and if I forgot to ask something or she wanted to know.

Looking forward to your 4 week results and you are still probably best to stick it out with this doctor while on treatment. Others may feel different. You don't want to have any interruptions so sometimes we bite our tongues. Please keep us posted and I am so very happy that the last visit was more pleasant.

** I don't see any reason why your blood work cannot be done at any lab however I tend to like to stick with the same one for consistency.

Harvoni is a good DAA.

SF

I met with my doc yesterday  and had the 4 week blood work.   This second meeting with my gastroenterologist was as strange as the first.  

LAST time, she was downright rude, rolling her eyes and making  an unnecessary  comment  about the fact that I  had brought  my husband  to this meeting  as a second pair of ears.  When I told her that we would be in South Carolina  during the 12 week blood work,  she insisted that I would just have to drive the 800 plus miles each way just to get blood  drawn (at Quest ).

Yesterday  was her first day back after vacation.  Sweet, charming. No problem getting the blood work done down south.  We couldn't believe it was the same petson.

She had me so upset  that I  didn't  want to even go  to yesterday's appointment. Spent days looking  for a new doc in Charleston. 

Should  have the results  back in a week to a week and a half. 

Miriam