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Post Info TOPIC: Started treatment


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Thanks Tig.

They have not mentioned the GFR to me so I will assume that is why, they are waiting for the stone to be removed but now i am aware of this, I will be watching and asking at the first Kidney appointment afterwards.
That is the problem, not understanding what to ask and/or always thinking of the right questions, after the appointment :)


It's very difficult i find to get the doctors to explain much of anything at all.
Will keep you all posted with more numbers once I know them.

Some of you should have been doctors :)

Sorry to hear that you have had so many surgeries. On the other hand, it offers me hope. Don't think it doesn't cross my mind quite frequently that i might not be here 1-2 years from now.
I had never really been ill before all of this. Rarely even had a flu bug. I believe i have had antibiotics 2 or maybe 3x in my life. Still have my tonsils, etc; so it has been a bit overwhelming having had so much to deal with at once.
Which isn't to say that i have been frightened, for I think so much has happened, the result of being so overwhelmed is that you almost ignore it because you dont know where to begin.

On the other hand, I am becoming aware from reading some of the posts here that this is rather normal but i for one haven't really been close to anyone thats been ill. One or two perhaps but overall my friends as far as i know are all pretty healthy so this has all come out of the blue.
Or maybe they just aren't telling me whatever issues they might have :)




__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Hi Shelly,

At 15, your GFR is concerning and getting in and clearing that obstruction is necessary, sooner the better. Your doctors have to be aware of it and is why you’re going in now. I’m glad you’re scheduled for the procedure, good job getting that done! That kidney isn’t feeling well (understatement), so clearing that stone and getting back on track is bound to make you feel better. If you can get your urinary tract back in good working order AND keep the diabetes under control, you may decide to take up sky diving or something unusually fun! wink

The anesthesia you mentioned is a common procedure and is safe and effective. I’ve had so many surgeries and procedures under general anesthesia, I don’t remember the number anymore. Just as fast as you start feeling a bit goofy, it’s over and you’re asking for some water! Dry mouth, yuck! 

This is another big step forward for you. Take full advantage of these opportunities to safely get your health back on track! We’re gonna be here cheering you on smile



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Not on Metformin any longer.
The Nephrologists took me off all pills except for one for Rovustatin, I believe it's called. They said that one was not processed through the kidney.
Whilst its recovering, they didnt want me taking anything at all unless an emergency.
I had my blood sugars tested when I was ill, back around September and I was in the normal range.
In emergency they did something they said would check blood sugar average over the last 3 months and told me they were in the normal range.
When I went for the failed shockwave therapy, beforehand they asked me if I had taken Metformin that morning and when I explained I haven't taken it in a few months, they pricked my finger and said my numbers were fine.

Not sure over Xmas I would have wanted to test that out though. I WAS BAD.....after 3 months of not eating, I treated myself to 4 weeks of anything in sight that had chocolate, etc in it :)
Now I am back on the "healthier" train, unfortunately :(

They took me off a pill for high blood pressure, I think called Perindopril? They didnt seem at all impressed that my family doctor had put me on those for even free of them for a month, at least by the time i hit emergency, my blood pressure was perfect and the doctors shook their heads and said mine was better than theirs.
That however was the pill that concerned them the most, believing it had been too hard on my kidney because it was unnecessary. The Epclusa, also but didnt concern them although they were glad by that time I had finished a week earlier for they believed it was best to eradicate the Hep C and deal with any problems afterwards.

These LABS were done on Jan 10th when I recently saw the Hep C doctor for the 90 day readings: Labs: AST 9, bili 12, Alb 43, Creat 280, Plts 315, Hgb 98, K+4.2, Na+ 138.\.br\

Dont see anything for BUN, or a serum calcium!

They said they were booking me with a dietician but that never materialized and over Xmas, to be honest, it was the last thing i wanted to think about....but hooked that up with a new family doctor 2 days ago. They are aiming to do so just after the operation.
I believe they want to be 100% sure first what the stone is made of.


**** via the urethra, right up the ureter into my kidney---YIKES you were awake for that? No, I will be put to sleep. This much I was told along with a tube in my throat for oxygen, which I suspect means to incubate someone? ( not sure ) Believe I was told it will be done with Fentanyl and Propofol.



Hope that was everything you asked for?
Tuesday is D Day :(

 

 

Only urine scan I can see was from Nov 4th in emergency so the numbers are a bit dated - nothing since

https://image.ibb.co/iVX4KG/urine.png

 



-- Edited by HepCGtype2 on Friday 19th of January 2018 08:33:32 PM

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Those images I see didnt work, so let me try this again


Here are what i see for GFR on Jan 10th 2018 (so recent)....Had the stent installed Nov 3rd 2017

ibb.co/h0Bdww


TREND:

ibb.co/fnsbGw

ibb.co/fW9TUG

ibb.co/jYpTUG

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Ok, now you guys are getting me worried, regarding this GFR but better I know if I need to know something.

A lot of questions so let me go through this one at a time..as I also have about 17 pages of tests that I have to go through :(


Here are what i see for GFR on Jan 10th 2018 (so recent)....Had the stent installed Nov 3rd 2017


<a rel=image.ibb.co/jZVtUG/Jan_10_2018.png">


TREND:

<a rel=image.ibb.co/jm3SOb/Sept_5_2017_Chart.png">


<a rel=image.ibb.co/cJFP3b/Oct_4_2017_CHART.png">


<a rel=image.ibb.co/nbHtww/Jan_10_2018_CHART.png">

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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So, you know me by now! More questions! Sorry.

Almost all these current tests we have been discussing ... (that you so kindly and laboriously shared) - GFR, hgb, Na, K  - they were all done about a week or so ago??

In these curent labs then, do you see anything like a BUN, or a serum calcium?

Do you have any urine sample labs, like 24 hour creatinine/clearence, or urine protein/albumin?

Maybe there was a serum calcium back when you had your iPTH test in Nov?

Very glad you were on it, about getting them to further consider your iPTH.

Are you still on metformin, are your blood sugars still good, how are your BP's generally?

GFR (glomerular filtration rate) is (basically) just the rate that blood is running through your kidneys being cleared of creatinine. It stand to reason if your blood creatinine is higher than normal, and your GFR is lower than normal, it just confirms your kidneys are not able to filter out the creatinine as effectively as a normal person. Just as the bypass partially solved your problem, so will the permanent removal of a ureteral obstruction such as a stone. 

Any mechanical obstruction (such as a stone) in one's ureter has got to go! After that, we will see what they think about your iPTH.

Did you ever get to that dietician about a "kidney" diet?

I too have had a scope of my ureter done, via the urethra, right up the ureter into my kidney, but versus looking for a ureter stone  (for which I had no imaging evidence of) they were mainly just after a sample of urine directly from the renal pelvis. I was awake, but I wish they had offered me sleep, but I am sure they will sedate you and have that planned for you for the procedure (you will likely have a nice little sleep and recall nothing of the event). 

It will go swimmingly, for you and for them, I am sure - believe me, they are just a motivated as you are to find and remove the offending object, and correct this situ. 

I am familiar a little bit with some of these tests best from having some of these tests done myself, or from reading. Encyclopedia Tig on the otherhand, I think he has it all memorized! wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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When were you told you had a GFR of 15? Was that pre stent and nephrostomy tube? 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Estimated Glomerular Filtration Rate (GFR) - 15 mL/min/1.73m2 (Abnormal) - GENERAL REFERENCE RANGE >=60.........No earlier test for such in order to see change in numbers so no idea what this means?


Glad to hear that my sodium is fine.
Knew that the potassium had come down.
It was dangerously high when I went into emergency with the kidney failure and they were checking my heart every hour worried about heart failure but it was rather strong and soon dropped once I had the stent.
The sodium was the one i was in the dark concerning.

No I have not as of yet had a second PTH test.
Indeed no one has even mentioned anything about it to me.
So when I saw the liver doctor 10 days ago, I brought it up to him, He took a look and agreed it needed attending to, and an appointment with the right specialist will be set up right after the OP.
Yes, I need to find out what is creating these stones so perhaps that is why.


Well i hope your Magic 8 ball is spot on Tig.
I wouldn't go as far as to suggest that i an looking forward to the procedure for my faith in such isn't that strong these days - meaning, what else can go wrong...but will look forward to it afterwards, providing it does go well.
I read a post somewhere by someone that suggested they had such a procedure and were unable to find the stone.
YIKES...really dont want a worse case scenario happening here :P

Besides losing my "innocence" meaning, never being ill before, being hit with so much all at once, a part of me feels I have lost the innocence that 99.9% of my peers seem to possess.

But have learned that in 2018 its shocking that the hospitals and doctors aren't all hooked up to one another via a computer system.
Here you have one set of hospitals only that seem to be so I am now choosing to only deal within that one system, and related doctors.
Found myself a new family doctor but I was less concerned with how good she might be, rather than ensuring she was hooked up to this one system where they can ALL access my records in one spot online.
Had the other doctors all been speaking to one another, I dont think these mistakes would have happened, or at least as badly as they did, had each one known what the last one did and recorded.
That's the one point I would make clear to someone that comes after me, how important it is and removes the potential mistakes that take place when you have too many cooks in the kitchen, but none of them know what the other ones whipping up.

Are you all in the medical field or just extremely experienced with blood tests and the like? :)


__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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So glad you updated us smile, and so SO glad about your epclusa ride biggrin, but, what a rough urology ride you are having.cry

Good reporting girl!

Have you been getting any results in your labs all along that say "GFR"?

Would be informative to know what your iPTH has been since (since Nov). Your Nov one was ... "Was tested for Parathyroid Hormone (PTH), Intact: Numbers should be between 1.3 - 7.6 but mine is up at 16.2" ... Current/ongoing iPTH's and serum calciums would be good to know, IF they are on your labs. But I think you said you were waiting for another repeat iPTH?

Good your albumin, potassium and sodium are all normal.

I will be very glad for your your procedure coming up, to finally get this shat-disturbing mechanical obstruction of the water works dealt with, to lose that hardware you have had to pack around, and to let your body get back to sorting/fixing/healing things up in the after. You deserve to get back to feeling on an even keel again, to a less physically stressful norm.

Very good your creatinine has stayed down from it's origninal high. Good you are feeling (in other ways) the improvements you have noted - those ARE grand! I would be looking forward to the procedure (I know, I know) but it WILL be what gets you going down along this correct road. It may not be as bad as you are anticipating, and in retrospect you may find you are feeling very grateful and relieved to have that work done - you may not be aware/remember/be conscious of ANY of the procedure.

So glad to hear abck from you again.

Congrats on being "2-less"! biggrin C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Those are good numbers. Your liver enzymes are lovely! Good to see the Hgb going in the right direction, 76 was low. I know you must’ve been exhausted from that. It’s amazing how much better you feel with even small increases.

Then throw in the kidney problems and you probably felt like you were hit by the perfect storm! I had to see a Urologist years back and had a bladder scope, transurethral. No anesthesia... I was concerned too, but it went well and now it’s one of those old memories. Do your best to not worry. It doesn’t help and things will be fine, my Magic 8 Ball says so! I think this allows you to check off one more box on your list! 

Good health and happy living, that’s what it’s all about.



-- Edited by Tig on Thursday 18th of January 2018 05:23:00 PM

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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Well all I know is that I shall be put to sleep and they put a little camera up my Urethra....... (YOWWWWWW!)......at which point I tuned him out because I know that's going to hurt BIGLY and he lied and said it wouldn't :)

Not going to be fun - tube down throat, etc :(

Typed all that out below and at the end saw the doctors notes for Labs: (hope that is all the info required? If not, let me know what else you need )


Completed SOF/VEL 12 weeks for CHC Gt2 nave 10/27/2017. Unfortunately had renal colic with nephrolithiasis, R. ureteric obstruction, and acute renal injury requiring nephrostomy tube drainage. Failed lithotripsy, planned ureteroscopy next week.. Creatinine 280 today. Noted to have elevated PTH in11/2017, awaiting f/up.\.br\

Alanine Transaminase (ALT) - 4 U/L Abnormal (7-40 Normal) - November 5, 2017 it was 5 U/L

Aspartate Aminotransferase (AST) - 9 U/L NORMAL (5-34 Normal) - November 9, 2017 it was also 9 U/L

Hemoglobin (Hb) - 98 g/L Abnormal (120-160 Normal).....numbers below show that has raised from a low of 76

Trend for (Hb)
Nov 3 - 88
Nov 4 - 76
Nov 6 - 82
Nov 14 - 92
Jan 10 - 98

Not detected as reported by Public Health Ontario Laboratories (PHOL), 661 University Avenue Suite 1701, Toronto,ON.,M5G 0A3 PHL Report #....... HCV Viral Load Conversion factor: 1 IU/mL = 2.70 copies/mL.

No FH liver disease or HCC

Labs: AST 9, bili 12, Alb 43, Creat 280, Plts 315, Hgb 98, K+4.2, Na+ 138.\.br\


Thanks - Re: Creatinine Reduction :)

Really not sure what all those numbers tell you though...Sorry Creatinine was 280, not 270



-- Edited by HepCGtype2 on Thursday 18th of January 2018 02:46:08 PM

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Hi Shelly,

WOOT! Big congratulations are in order on your SVR! Another dead Dragon carcass to throw to the frosty curb, hooray!

That‘s a nice reduction in your creatinine. Nice to know that once your procedure is done it will drop significantly more. I wish you could’ve been successful with the shockwave treatment. That would’ve certainly made things easier. Will they go after the stone internally or will they have to do a laparoscopy? Either way, it should be quick and you’ll start getting everything back on track, finally. You sound very upbeat and considering all of the good news, you should be!

The results we‘re typically curious about are your liver function tests and sometimes the CBC, depending on the treatment. If you have the ALT, AST, and HGB, that will tell us a lot. In your case, we’ve been curious about the Creatinine and all things “tinkle”. We already know what your last viral load was >>>Zero<<<. Yeah!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Oh, yes, it was asked of me to post some blood work results.

I intended to and still can but admittedly i became quite overwhelmed with a ton of tests, hence a ton of results and really didnt even know where to start.

Not sure what to post...

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hey All.

Sorry. I was busy pigging out over Xmas, not having been able to eat properly for 3 months in 2017.
Plus spending time catching up on all the things put off to the side while I was ill.


Good News, in that yesterday I received my 100% am free of Hep C from the 90 day mark, so at least that's one great thing :)
I am now truly NON-HepC2 lol


Everything else is sloooooow.
Went for shockwave therapy and of course, they could not do it. They knew the stone was there but were unable to accurately locate it.
I was to be operated upon 2 days ago but that was put off until next Tuesday.
Not looking forward to that :(

Createntine as of a week ago was 270 which is a marked decrease from 798 but I do remember them telling me in emergency that the bigger drop would take place once the stone was finally removed.

So the stent has been in my kidney since Nov 3rd a long 2 months plus at this point.
Getting kind of attached to this lovely bag, for at least i can see what's going on.
The first 2 months I had the bag changed every 7-10 days and all was perfect.
About 2 weeks ago I felt it needed to be changed at the 5 day mark. Urine colour is good but I can see little flakes of white things floating down the tube and about the 5th day the tube itself, although nothing is clogged, is cloudy white.
At the same time I became super itchy under the dressing on my back.
Ohhhh all I wanted to do was take a big scratcher to that spot but cant......I hear that this is normal, that one needn't be bothered by it for sometime and then suddenly your skin reacts to being covered, the glue, etc.
So for that reason alone I will be glad to see it removed.

Gottay say though, I have no idea where all this urine comes from...lol
I swear i never urinated as much as i do now - so good and bad in that :)

Aside from all of that very unsexy news, my energy level went back to normal so as much as i would like to suggest that the Hep C meds were responsible for that, I think now it was the kidney distress - or maybe a bit of both? Who knows.
Had so many issues show up at the same time it's impossible to pinpoint exactly why I feel better but overall I do. Even with this bag.

Waiting for an appointment to further check into the parathyroid levels - who knows, perhaps more surgery there.....very slow moving process all of this though  

So although I know without a doubt the Epculusa was a lifesaver and has helped me feel better, I am just unable to pinpoint exactly when and where but know that in the long run it was an amazing gift, to be able to finally rid myself of Hep C


Hope everyone else is ok here and everyone had a great Xmas, New Year, Hep C results and all that kind of stuff?



-- Edited by HepCGtype2 on Thursday 18th of January 2018 08:18:22 AM

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hey hepc2,

Where are you and how are you ? - we fret when we don't hear from ya.

Last we left off you were due to go and have kidney stone work done - how did it go, what has transpired since you posted last?

How are your creatinine levels, any GFR's results?

Hope things are going better. Update us when you can. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

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Hey hepc2,

I'm gonna have to start addressing you as NON-hepc2!! biggrin

Re: that number you wrote for your PTH result, can you please elaborate (what "unit of measure" is actually written on the lab report).

What is the "scale of measure" your lab is using?? - ng/L or pg/ml?, or a dif scale??

My books have dif labs using dif scales (ng/L or pg/ml, etc.) when measuring PTH, and, normal ref ranges (in those scales) show up as being between: 10 - 65, or 10 - 55, or 14 to 65 (depending on what "normal ref ranges" dif labs chose to go by).

Can you clarify the "unit of measure" your lab is using. I know labs use mmole/L measures as well, or mg/dL measures (for other things). Numbers can be converted when dif scales are used.

How does your urine look now? Are you being booked for your kidney stone, next week? - have a date yet? Did they describe how they wished to deal with your stone? What kind of installation route/method did they take anyway to get that "stent" bypass in there? After your stone is gone, will you come home again packing the stent/bypass, and a bag again, or ... perhaps just sporting a temp catheter, or maybe nothing? What's the plan? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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I will sit, think and devise a way to easily share these tests. Perhaps i shall create a new google drive spot, convert them all to pdf format and upload there. I shall try and figure it out later. U must understand that there are pages and pages of tests on my uhn site just in the last 10 days alone. It was a relatively lonely page until then :)


As for the creatinine not dropping in increment of hundreds, that is not speculation on my end but what the doctors spelled out precisely for me.
They would like to see my numbers return to ...Oh, I think it was about 112, offhand in August?
They are concerned the major damage was done this past month when i was ill, when those numbers raised to 798.

I believe they had hoped, that when the stent was first installed, my numbers would drop by hundreds and take me back to that place in or around August. But that they dropped in small increments only, suggested to them that my kidney function might only return to whatever the number was in September when the nurse wanted me to come back in, I was too sick and had to put it off for those 3-4 weeks.
So i can only go by what they told me. But sure, of course, we are all hoping that the recovering will be a complete one but wont be surprised if it isnt.

The emergency doctors were going to hook me up with a nutritionist only to ensure I was not eating foods that would harm the kidney but as of yet that hasn't happened.
Am drinking water, naturally but did ask if drinks such as pepsi would hurt, assuming they they would be was basically told it wouldnt.....which admittedly did surprise me. It was suggested ginger ale, in the long run might be a better alternative.
Admittedly I do love Pepsi so try not to drink it for i feel instinctively its an issue.

No, was not warned off of meats at all which isn't to say I shouldnt be, but that i wasnt.
I am not a big meat eater to begin with but since I have left the hospital, combined with the sudden drop in weather, I have had a lot of meat stew and I felt i needed a burst of protein.
Hope thats not hurting for I feel quite strong right now, considering what my bodys been through?!

They seemed far more concerned with pills than food.
For example, being off of the pill for blood pressure, they are watching it to see how it is naturally.
So far so good. I dont know if I ever needed such a pill but some family doctors seem to throw every pill at you as a preventative cure once you hit 50, or at least mine seemed to do so :(
They dont want me to ever take an aspirin, for example, and I have since been tested for my sugar and am pre-diabetes so again, not really sure i should have had all those pills thrown at me either.
Right now, pil free except for one they wanted me to continue with at night time for cholesterol. ( wasnt aware I had high cholesterol, still not sure if I do or its a preemptive measure)

Regardless it is all rater fascinating and in my next time I think i wish to come back as a medical researcher :)


__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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With not very many labs (the whole picture), all the timelines and tying them all together to the events, makes it hard for us laymen to be guessing about your renal function levels. There are many tests from bloods, to urines, to imagings that would help to spell a fuller picture to speculate upon.

You seem to have "some", but only a few labs relating to renal health to look at.

This is why I could only be drawn to speculate about the persistant downtrend in your RBC's and the consistently upward direction in your creatinines, add these items to your overall hx of possible stone formations and the current stone situ, I was strictly ONLY guesssing about any possible parathyroid involvement - thus why I DID end up deciding to mention parathyroid to you, but I was reluctant to toss that guess into the mix of speculation, but ... with so little to go on, just what you have presented at face value (hx of RBC's and creatinines), I thought I better mention parathyroid, as I would have been surprised and disappointed if your kidney docs had not already been ruling that scenario out.

So I, for one, am glad to hear they DID do an iPTH on you, they will probably do a repeat of that one, and perhaps further tests like that (concerning thyroid/parathyroid) on you, and I am sure they have a scad of other tests results on you as well. All of your labs will be of interest, when you have them to share.

I will read that link next that you have now found via google, with interest.

So, next week you (hopefully) will be having the stone dealt with? I think you are right, you have show improvement already (as far a dropping creatinines), and I am confident things with improve further (on the renal front) especially after this shat disturbing stone is out of the equation, let them right the immediate problems and then work at any remaining conditions after that. I am betting you will see good postive directions on the renal front, now that you have their full attention.

BTW, did they instruct you about drinking water and perhaps not eating a diet exclusively high in meat proteins, in the interim?

How does you urine look now?

What a long haul for you, at least you have the comfort of knowing you are nice and UND for your EOT! You, your health (kidneys and all) are important to us! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Had my blood tests done today and the Creatinine is presently at 575.

Going down in the right direction which is good but it would have been far better to have gone down in increments of 100s.
Which isn't to say definitely that it will never gain its full capacity again but less likely to unless it starts dropping more and quicker.
One cannot be entirely sure until the stone is removed and then blood tested again after that.

Not going to go much further into this for this is all far away from HEP C the reason for this forum and the drug Epclusa.

I am waiting for the other shoe to drop after having seen one of the blood test results today.
I expect i will soon have a phone call about it.

Was tested for Parathyroid Hormone (PTH), Intact: Numbers should be between 1.3 - 7.6 but mine is up at 16.2

Sure i am not a doctor but a quick look around the web at what it is and the symptoms make sense and could very well be whats creating the kidney stones that is if this is right www.parathyroid.com/diagnosis.htm

I am ok.
I have long suspected that something somewhere was very wrong and have more or less dealt with the reality of what might be coming.

Just wish I were medically qualified to "interpret* these tests myself :)


Ok, give me a day or two and I shall look at that list above and post the numbers requested.





__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Hi Shelly,

It’s completely okay to concentrate on yourself right now and a good thing that you have. Without such attention, you may have suffered significantly more kidney problems. Even though the numbers didn‘t drop a far as you wanted, they did drop. You even said you’re feeling much better and I like the sound of that. Each day can be a challenge, but when those challenging days turn into pots of gold at one end of the rainbow, let’s consider that a positive event and seize the day, “Carpe diem”...

Continue the positive track and lets hope your next labs show good improvement! We’ll all be sending good vibes your way!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi All


Thanks for the comforting words, both of you.

I did get my report back and am definitely still HEP C free :)

I can let you know more tomorrow. Having my blood tested for the first time since i left the hospital a week ago.
TBH, they dont seem to be overly optimistic that the kidney shall repair itself fully and have prepared me for the likelyhood I shall need one of those machines in future.
The night i went into hospital, they believed I was going to need Kidney dialysis then and there, plus a transfusion so......I am still somewhat ahead at this point in time.
The one thing in my favour, which did tend to stymie them, is that i am very healthy in every other area.
When I left the hospital, they were a bit disappointed at how slowly my creatine had moved downwards. They had hopes for increments in the hundreds but 4 days later i had gone only from 800 to 690.
But I feel fantastic, which is the odd thing, just as i did when i first started that Epclusa. Energy is back to normal, etc.

I can post all that information you are requesting in 1-2 days.

Yes, I had hurt myself not going to the hospital 3 weeks earlier but I was so sick and this was not the first time, nor the first doctor to brush it off as my not being sick enough to bother going.
In July I was minutes away from going to emergency as well but in that 5 minute period, I received a phone call about a sudden appointment being given to me for the colonoscopy and thought that was the problem and would be fixed then, so I held off...had the colonoscopy but then felt great.

2 years ago when i FIRST reported what i thought were kidney stones to my quack doctor with mention of blood in the urine and other symptoms, that is when......somehow, she decided I had cervical cancer.
To be honest, there have been too many doctors in the mix and they have all had me bouncing from one wall to another.
Its only been since then I have signed up with a hospital that records everything online so in future, whatever doctors i am dealing with can see my records in front of them. Too many doctors in the mix is not a good thing. :(

Still waiting for an appointment for the stone to be removed.
I must say though, i am very impressed with these specialists.
I have a great team of Nephrologists and they even phone me at home to see how I am :)

I feel special, although i am not sure i wish to feel THAT special, which might imply I am a far gone case they feel empathy towards...lol.... but i can deal with a bit of attention for a change from these doctors. lol

Short story is that 2 years ago at the time of that crazy cervical cancer diagnosis, that same quack doctor prescribed a pill for high blood pressure, Coversyl.
Turns out I have better blood pressure than all the doctors put together so they took me off of that pill immediately and believe on top of a kidney problem, it might have been the one to have created all this damage.
I am sure the Epclusa didnt help, in the long run but on the other hand, without it, I might never have had my Creatine tested and could have dropped dead one day not knowing i was in acute kidney failure.
Isnt life funny the way it works out sometimes?

Ok, will check back in once I have blood work done tomorrow....Hope everyone else is doing well??!! Afraid i have been a bit too busy this end to be able to be anything but somewhat self absorbed with my own issues, momentarily but do hope all others are well..




__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hepc2,

Reserve judgement on the prognosis of your kidney situ and function - you may just end up being pleasantly suprised (over time) how much your kidneys recoup from the insult(s) they have been dealt. Kidneys (like the liver) have an amazing ability to withstand a great degree of punishment/insult and can forgive, recoup and recover quite well, especially if they are given prompt attention and the offending circumstances have been removed/curtailed/corrected from the equation.

Never again delay/wait, for any reason, when they tell you to have blood sample or tests done right away. Three weeks of not getting to the hosp/clinic/lab for your kidney tests only delayed being assessed, and allowed the condition to continue/worsen. When your hep people saw your creatinine remained to not be trending down again about Oct 6?, they did the right thing and set up for you to go right away, a few days later, for futher creatinines and proper assessment tests by Oct 11?, but you ended up delaying having those done until Nov 3?, more than a 3 week delay, by which time your creatinines had increased from the former 112, 118, 191 umol/L range to a higher level of (what you posted) 790 - depending on your particular labs ref. range you should not be getting higher than about 132 umol/L. I figure you would have been better off, ahead of the game, had you gone 3 weeks earlier for your kidney assessments like you should have. 

I have no idea which kidney may have been suspect for stones (prior). But in this hosp work-up obviously now you say they found a 1.4 cm stone occluding the output of your Right kidney. If it was true that "many" stones were visualized at one time prior (whether that was your left or your right kidney, if they were small enough stones, a size much less than (aprox) 1/2 cm, then it is possible that they "miraculously vanished" due to them being small enough to be passed, therefore gone, not visualized later! Larger stones may well not pass, and in certain circumstances can formulate themselves "fairly" quickly. Imaging/visualizing calcifications are not 100% guaranteed either, depending on what method of imaging they chose. Larger stones, ones anything over aprox 1/2 cm, should be easy to image if they are not obscured for some strange reason. A larger stone indeed may stay put and not move (depending on the type of formation), and nor will a too large one pass, it's 50/50 bigger ones might pass depending on the diameter of your ureter and the size of your stone. Yes, generally your Right kidney stone would be too large to pass measuring in at 1.4 cm.

Do you have some actual paper labs to post re: the bloods you mentioned, ie creatinines/potassium, etc., and any of your other kidney function tests, urines? What kind of imagings did you have done?

Posting all of those kidney function labs (plus their units of measure) and the labs "normal ref. ranges" would be helpful for discussion purposes.

If your potassium was 5.6 (I have to assume you are meaning mmol/L as the unit of measure) then without knowing what normal ref. ranges your lab uses, I have seen ranges going to 5.2 mmol/L as being normal - so at 5.6 you are not terribly high - 7 mmol/L would be on the dire side. So far that was your only high potassium, the 2 others you had done prior were normal or low i believe.

I am guessing your admission creatinines (and other kidney function tests) have already improved drastically (in comparision to your discharge ones, or what they may be right now) due to their interventions, do you know what the creatinine (or any other kidney function tests) came down to before you were discharged?, thus why no dialysis was required? Wait and see, dialysis may not be required in future either.

All depends on how you respond to having the problems corrected (as they are and will be doing).

They may come up with possible reasons as to why you formed this (or other stones), could just be as simple as bad luck condidtions. It's unlikely but being that your creatinines were increasing as your hgb was downtrending, get them to rule out para-thyroid influeneces.

I'm no doc either! But that's all i can think of.

Sorry for what you are going through, not nice, wish it wasn't so, but just want to tell you it may not turn out as dire as you are anticipating/speculating - wait and see.

In the meantime if you could share all your renal function tests we could try to suss them a bit as laymen, for whatever good or harm that may do! C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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HepC2-  I am so sorry all of that has happened to you.  You sound incredibly strong and resilient but that would be tough on anyone. As one who has experienced the pain of a kidney stone numerous times, I hope that little sucker stays right where it is until they can remove it.  You have been through some difficult times and I hope better days are ahead of you.  Good luck and please keep us posted.



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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I am not blaming the HCV meds themselves but am presently somewhat angry with the doctors as I did ask clearly in the beginning, should i be taking these with an earlier kidney stone problem?

Again, I am a patient, not a doctor.
In retrospect i do believe that someone should have been listening to me far better than they seemed to be.

Its interesting.
Something i have said to every doctor and anyone i have spoken to, is this strange occurrence i had been noticing for the last few months.
I love water but when I would get into this "sick cycle" my body just did not want any water.
It was almost as if water itself was too heavy on my stomach and would immediately cause me to throw up.
Hence, why I had problems taking pills and was at first concerned before i began this HCV treatment, that if i became ill again, I might not be able to take these pills.
Fortunately, although i did become ill the last 3-4 weeks, it wasnt anywhere as bad as it had been in July, so I was able to at least get the pills down, perhaps because i had learned how to at least get away with that much water, without being made ill.

The kidney doctor told me that that was my brains way of telling my body I had too much sodium, couldn't process anymore, hence why I felt that the water was too heavy on my stomach.
IF only someone had been listening clearly as I am a firm believer in listening to what my bodys telling me, even if I am not medically capable of interpreting its meaning :)

The stone will be removed in a couple of weeks.
One just hopes that it does not move in the meantime as i really dont want another trip to emergency but they believe, at least up until now that its too big to move and too heavy, hence, why i was not feeling any pain.

In any event, It is what it is and there is no point in crying over spilled milk.
I am aware that I have a shorter lifespan and one that wont be easy once i need dialysis but on the other hand, I could have died a few days ago so..........what can I say?

I will keep you posted when I get the full numbers in........but yes, I do at least expect that the HEP C has cleared LOL :)

 

 

PS: I remember being told something to this effect.....that in the future i will no longer be able to take aspirins or anything for pain....not that i ever really have but would need Hydro Morphone?   So, seems I will at least have good drugs if needed    :)



-- Edited by HepCGtype2 on Wednesday 8th of November 2017 08:29:00 AM

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Yikes is right! I’m sorry to hear about all of these problems, too. You‘re obviously quite strong, but this must be miserable. You got hit with it from every angle, seems like anyway. Do you know what your calcium level is? My Dad was a stone former and his calcium levels were always elevated. He also has evidence of small stones (micro) in both kidneys, but are just watching. Like you, he has elevated creatinine levels. No wonder you’ve been having problems. I do hope they can get this resolved without too much more hardship for you. I’m sure that shunt and bag are more than enough. Any word on how long you’ll be tethered to that? What about the big stone, are they going to remove it? Too big to zap, so why not take it out. I hope they can do something soon. 

After all of this, I’m counting on you being undetected following your next blood draw and forever after. Who knows, maybe, just maybe, you’ll begin to witness many overall improvements, as you heal and recover from all of this. You certainly deserve it!

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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YIKES and OMG

You poor dear.  I am so sorry and sad to hear about this! It certainly explains why you have been so sick. 

It sucks that the HCV meds probably worsened the whole mess....all I can say is I sure hope they have got rid of the hep C .

Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



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Long story, as usual :) (wish i knew how to tell stories in one paragraph or less but i dont )



Just before I started the Hep C drug, my creatinine was 112, or something, which I have spoken of here but before I started it, I had been very ill for one month with what seemed at first to be a flu.
Then I was advised to have a Colonoscopy and I never felt better after my system was flushed beforehand, bowels emptied, etc so we assumed was the cause.
I had one doctor during the illness in July suggest that i go to emergency, that i likely needed a colonoscopy but that same day a Urologist phoned me with an appointment so I did not feel there was any need for emerg and would go to that appointment.


As the med for Hep C progressed my Creatinine increased and they seemed worried.
I asked them a few times if I should stop the drug as I felt they were focusing on this increasing number but not really telling me why.
Their reactions were causing concern on my end.

Last month as mentioned earlier I was told it was high again, and I needed to have my blood tested, but I had become too ill again to move, with what again seemed to be the flu.
I spoke to a friend, an emergency room doctor and he said i was not sick enough to bother with emergency.
So I finally started to feel better last Thursday and Friday morning I went to the Liver doctor to have my blood tested, came home and within an hour was called and told to go to emergency, that my Creatinine was now at 790, dangerously high.

I was admitted and at first told that my Kidneys seemed to be in acute distress, that i was likely going to end up on dialysis that night and it was up to them to try and save my kidneys.
They all seemed very confused because i was not in pain, was chatting, energetic, functioning, etc,
After many tests they determined that i had a 1.4cm kidney stone that was too large to go down a tube and was sitting right on top of it, causing urine/toxins to flood into my body, essentially, explaining why i had been ill.
My potassium levels were high, about 5.6 and I understand that can cause heart attacks.
They finally determined that my left kidney had shrunk but essentially no longer worked, the right kidney was the one working, with the Kidney stone but it was putting it into great distress.
To save this kidney I underwent a procedure where they put a stunt into my left kidney and at present i have a bag attached to my leg and will do so for the next few weeks allowing that kidney to drain.
Its been full of blood and sorry to say, 50mls of pus.

They watched me for a few days until I stabilized.
So far not in any pain because the stone is too big to move, they say.
I was released yesterday and have an appt in a weeks time for blood testing again plus another appointment at a Stone clinic.

Unfortunately I first described symptoms of stones to the Quack doctor 2 years ago, and was sent to the same Stone clinic.
I was told I had hundreds of kidney stones and that they would have to zap them.
Brought me back a week later, took an ultrasound and determined that they had all magically disappeared.
This was at the same time the quack doctor misdiagnosed me as having Uterine cancer.
I have spoken of that in earlier posts, and believe they had someone else file.
A stone this large did not develop overnight so I might have to assume that they missed it 2 years ago.

Not a very good situation at the moment.
I've been told that I will very unlikely ever gain full control back on the left kidney but that it will go back to where it was about 4 weeks ago.
Whether that is true or whether that is the doctors covering themselves, I dont know.
I have been warned that I will be looking at dialysis in the future :(
Its been alluded so far, although i dont think yet proven, that my body produces these crystals and if so, I would not be able to get a kidney transplant.

It would appear that had this been found before I started the Hep C treatment, I might have been ok but on top of an already undiagnosed kidney problem, it seems to have really hurt me.

Still processing, not yet sure of it all but thats where it stands for now.

Had my blood taken last week and they said it would take about 10 days for it to let me know if in the end the Hep C has still cleared my body, and then they will test again a few months later.



-- Edited by HepCGtype2 on Wednesday 8th of November 2017 03:56:59 AM

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Bummer! I hope you’re on the mend. Yes, no? A trip to and inpatient visit in any hospital is best when it’s over. Sorry to hear about this. Please let us know more when you can.

Big congrats on finishing treatment! SVR is next!!  



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi Everyone...


I will update you tomorrow.
Unfortunately I was in the hospital for a week.
Will explain all when I pop back tomorrow..

But yes, am finished Epclusa :)

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hey Hepc2,

So, how's it goin?

With your new revised EOT date (Oct 28 I think)? ... you said you were going to try to gear up for getting to the lab for your EOT labs (and the other bloodwork they were wanting from you) to see how all your blood values were doing - did you go?? Please do let us know how you've been, and what any of your results are (that might be back already). Congrats on finishing your epclusa! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Thanks Wendy and Tig-  I do enjoy the Tazo brand of ginger tea and will check out the pills.  



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi Linds,

I buy all my vitamins/herbs from vitacost. Good quality products and I want more in one capsule so I don't have to take 2 or 3 pills. Besides ginger I take turmeric and boswellia to help with inflammation and joint issues from my working out and getting older. 

The ginger tea can be an experiment as some are too strong or bitter for me. I like Tazo brand which you can buy in grocery stores, the green ginger as well as I order a black ginger from a company called Stash. I have a jug of it in the fridge as ice tea as well. 

Personally I did not care for the ginger chews. 

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

Tig


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Hey Lindsay,

Here's some information on Ginger. Health Food stores have lots of it, and I'm betting Wendy will have some good suggestions on what's best.

GINGER



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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You’re almost to the finish line, hooray!! What a relief to have finally gotten your nausea down to a manageable level. The thought of throwing up a $1000 pill is something nightmares are made of! I’m glad you‘re feeling better smile

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Wendy-I didn't realize they made ginger capsules. Do you get those from a health food store?



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Glad youll be finished your treatment Saturday.

um...about that ensure...is there any way you could drink a smoothie instead of drinking that chemical laden stuff?  I understand its convenient and is fed to people that are not up to eating but its ingredients are quite scary nutritionally . 

Wendys right about ginger..its the absolute best for nausea 

Alison

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



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Hi all :)

Nope, there was some miscalculation in the beginning for this coming Saturday will be my last pill YAY!!!!!!
I was at least very fortunate these past few weeks in that the nausea was just a 1 out of 10 compared to a 20 out of 10 in July or I never would have been able to keep this last months pills down the hatch.
So even the darkest moments have their upsides :)


Emergency - Doctors. You'd have to be here. I have learned that it doesnt pay to be so sick to live like this but not sick enough that anyone will take you that seriously, meaning, real hospital care.
Compared to many out there, I am not sick and those people must be dealt with before me.
So all that an emergency room visit would mean I suspect, is hours and hours of discomfort without any positive outcome. Just not sick enough, in the end.

Overall this time was much easier than it was in July. Back then i was throwing up 5-6x a day. I remember one day a piece of my hair fell across my lip and that alone sent me to the toilet throwing up for 15-20 mins.
I did not suffer this time as I did then.
But last time, after a month of being really ill, I just woke up one day and started to crave some good old junk food.
Think it was McDonalds that time.
Damn a 1/4 cheeseburger never tasted as good as it did that day.
This time unfortunately I just can't seem to find that same passionate moment, of suddenly desiring something, anything LOL
Yesterday I had 2 Ensures, 1 banana and 1 chocolate cream donut, of which i would never eat but now's not a time to worry about bad food choices.
And I struggled to eat THAT MUCH lol


Anyhow I am not really complaining, despite how it might sound for there are people here far worse off than I.......but i anyone ever tells you that ENSURE can sustain a persons strength for a month on end, I am here to tell you not to believe them :)

i SUSPECT by next week I will be able to do my bloods and have a better idea of where it all stands for the 90 Day mark!!!!!!!

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hi HepC2-  According to your signature line, today is your last pill-HALLELUJAH!! I hope this means you will be able to concentrate on your other maladies and get them taken care of.  I can't imagine being ill for as long as you have with no break.  That will certainly take its toll on your body.  Good luck!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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As I have suffered from nausea for years and they have done every test known to man on me and found nothing wrong, I have to tell you that ginger is the only thing that works for me. They put me on a Rx and it made me constipated so I explored natural medicine and fell in love with ginger. I take a ginger capsule every morning as well as 1 0r 2 cups of ginger tea and I am good to go. If/when it flares up I take another ginger capsule. 

Got my flu shot about 3 weeks ago. 

Wish you felt better!

 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Awe darn, I was hoping youd get through treatment and your other issues would stop affecting you so much...

I cant remember if I asked you before but is there any way it could be food poisoning? 

I really think you should get to a hospital when youre suffering so much and let them try to help you get diagnosed. If it is a twisted bowel you do not want to wait til January.

Glad youre almost done the treatment so you can concentrate on figuring out the bowel/digestion stuff.

A



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



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aw, this is too bad, like Tig said - it IS bad timing to be ill like this, but, there would never be a good time for stuff like this.

Like last time, this time too, you felt "too ill" to get to a doctor? You just holed up at home. Can you not get someone to take you/assist you to see one?

At least, at minimum, I would have gone to the ER, to waste hours on a "visit" with an unknown satisfaction level, you might have been lucky enough to have been offered a gurney to lay down on whilst they drew bloods of all sorts (incuding the extra ones they wanted you to have). They may have done a quick hydration of you via IV, checked you out a bit, maybe given you something for your nausea/vomiting, a rx for home, or advise you on how to combat your symptoms ... I think it would have been worth a try being that you are miserable anyway.   

Yup, eventually, you are going to have to present yourself (likely repeatedly) to all these docs for their time consuming office appointments/assessments, and their thoughts on your repeated bouts of illness. You may need to be "re" - referred back to the GI person again, through your GP. Would be nice if you could directly book your own appointment with the GI person. It would be nicer still if docs and labs just made house calls!

On the bright side you did manage to keep your epclusa doses in, you are just about finished your course, and you will have that HCV off your back. I am sure as well that you are (eventually) going to get to the bottom of and relief from these illness-bouts you have been subjected to. Better days are ahead. Do keep us posted, hate to think of you languishing in this state. Hope you get out to some docs soon. C. 

PS - We got our flu shots already (last week) - available about mid-Oct at some pharmacies (in BC anyway). Some pharmacies tend to come out with flu-immunizations clinics just a wee bit quicker than the Public Health Clinics start it seems. I prefer to get mine "early", ASAP, (just my own theory ... that generally, flu shots are not made available early enough, for some, into the higher risk-season.) 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Sorry to hear about all of these issues right now. That has got to be miserable. Why, if you’ve got a twisted bowel and have had repeated illnesses as a result, won’t they correct it? I couldn’t live like that. I don’t know if some kind of surgical intervention is possible, but I’d willingly go through a laproscope procedure to untwist it and staple that sucker to prevent it from happening again! I hope you get some relief soon. There isn’t a good time for any of this, and certainly not now. I know you’ll be more at ease after you’re done with treatment. At least that will be one thing out of the way. I wish you the very best.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Oh I do get flu shots yearly and never get ill.
I honestly dont remember being ill since childhood, for the most part, until this year with the bowel nonsense.

As far as a flu shot boes though, dont hold me to this but I dont think they are yet doing them for the year?
I haven't heard a peep about them?

I seem to recall that they got last years completely wrong.
Again, dont hold me to that, as i am a bit fuzzy at the moment but I think i am right about that.

So I dont think I could even get a preventative flu shot for a bit of time yet??

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Hi all.

I have not done the extra testing.
I have been ill in bed for 16 days straight.
I did venture outside today for 10 mins and saw the sun.

None of this would appear to be HeP C related.
I believe in that fog of Fentanyl that day i had that *routine* I heard her say *twisted bowel* but dont hold me to it.
It might explain all that's happened though.

I was doing super fine the day of the procedure, almost 3 months ago when they gave me a prescription to empty my bowels.
Never felt so great.
And with the Epslusa it appears that my *system* was working really well for some time.

I think time works against me and my system starts to *block*
Once you start becoming nauseous, you can no longer hydrate properly for to do so incurs nausea, nor can one take RestorLax as religiously as earlier.
So one little bump in the road, or in this case, an intestine throws everything out of whack and there isnt anything i can do until it decides to fix itself.

I have spent 3 months now sick this way since May.
I am just not sure when/where I start to feel better as i am not able to take in food so that weakens you further.

Anyhow, it was far worse in July then this time.
But something has to give.
I have ZERO quality of life ATM when this acts up.
Seems to start off as a flu bug but 7-10 days in than it switches over to the symptoms I had earlier.
So not sure if the flu is kick starting it or just what seems to be a symptom.

Monday I will be phoning that surgeon and asking her for another round of that bowel emptying muss.

Whatever the cause, this does not appear to be going away on its own and i suspect surgery is down the road to fix something :(

Otherwise, still have about 1 week left of Epclusa.
Sorry if I dont seem excited about that.
I am , I really am but just overshadowed by this other illness.
Sure you can understand.

Will pop back once i get my numbers at the 90 day mark done, I think?!

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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I'm so sorry, Hepc.  That sounds awful and I'm sure you are terribly weak after so many days of throwing up.  My doctor told me to wait on the flu shot until after treatment but I wish now I'd had it before I started.  I hope you're at the tail end of this and can start drinking some water and perhaps Gatorade.  Good luck and feel better soon!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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The nurse wants you to drink a lot of water to hydrate you. My veins are deep and I always need to hydrate the day before and the day of. They requested I Hydrant.   RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Hey, You and me got some kinda ESP thing going on here,  I was just poised with my fingers hovering o'er the keys to ask you how your extra labs you were due for, went. 

I see, it has not happened yet.

Yuck, whatever it is you have - so sorry, really not nice - and certainly not needed right now. Dratted timing alright. Sounds dreadful, hope your hubby is of some help.

It DOES sound flu-ish alright.

Did they tell you to get a flu shot prior to to HCV treatment, or perhaps you already do go for annual flu shots? Just wondering. I was told to do so, and I had NEVER had a flu shot before in my life! They told me to get pneumoccocal too, which i did, as well as having the hep A/B checked and done. 

Well, being that you have been "down" with this new event, for a while now, i do hope it has just about run it's course.

So sorry you had to deal with this on top of everything else. It's gotta get better. soon. Keep trying, and work on keeping the hydration up as best you can. (I know, not easy under the situ, but, important, as you already know). Fingers croseed that the worse of this flu-ey thing is finished?

Don't be freaked out too much about the extra testing, it's a good thing they are doing their due diligence - they are supposed to be doing so, all part and parcel of taking good care of you and following anything that needs following regarding any aspect of your health. You may be experiencing temporary (passing) things. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Oh, the clincher, the nurse asked me to drink lots of water before doing this blood test, to ensure the results would be better.

I understand their needing to have great numbers but no one seems to hear me.
I have given up trying to explain to anyone that whilst i am sick like this, I can only sip a bit here and there, otherwise i will throw it all up.

Anyhow, must my Friday rant.

I am not impressed with doctors at the moment :(

__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 



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Afraid that I am having an extremely rough last week.

I was supposed to go into the hospital this past Wed and have my blood redone, as well as give them a Urine sample due to these high creatinines they keep trying to freak me out about.

Turn out a week ago Wednesday I appeared to come down with a Flu bug. Aside from a heady feeling one gets with such bugs, as if you are underwater and not presently all that sharp, it just seemed like a basic flu and i wasnt concerned.
Figured it would pass within 5-7 days.
Around that time it appeared to change all and became another instance of how sick i became just before I started these pill.
I had already spent 2 full months since May of this year very sick and was not at all interested in going through this again.
I am not a doctor but I am almost getting the sense that this is easily triggered when my body is off.......and i become sick again.

Fortunately its nowhere near as bad as it was in July or I would no longer be able to take my pills.
Back then the slightest sip of anything had me nauseous for hours.

I had one day earlier this week where i did throw up within 2 min of taking the pill but it was quick and I just seemed to throw up the water.
I didnt see or feel any pill that came up. For some reason water when I am ill seems really heavy on my stomach and its easy to toss.

I have had to reschedule and cancel twice since.
I am sure they are frustrated that i am unable to get in for blood tests but I have been far too uncomfortable.
If they want my blood that badly, they can send someone up to my house to take it but I have not stepped outside once in 9 days and am not about to do so for them either.
I am not really in a good mood about this, this week.

I just spent 2 hours violently shaking and shivering, which created a headache as i was unable to get warm.
I had a huge warm hoodie, long johns on and was under 3 exceptionally warm and heavy blankets and i could not not get warn and stop shaking.
Finally I had to run an electric heater directed right at me for about 30 mins to warm down.
1 hour later, I was too warm and stipped down naked, perspiriring so they haven't a hope in hell of believing I am going to go into the hospital to test my blood during this period.


I threw up one other time, about 6 hours after I took a pill.
Again i didnt see or feel a pill in there, just liquids but every other time I have managed to keep the pills down just fine.

No idea what's wrong.
Im in a busy city so my next appointment with that doctor isnt until Jan.
I could be wrong but I believe I heard speculation of a twisted bowel.

Not impressed at this point in time that I am being made to wait so long to find out what is wrong and how we go about fixing it.
But so far grateful that this illness is no where near as bad as it was in June.


But i am not presently impressed with the concern they are laying on top of me about this Creatinine.
I dont know if my kidney is being damaged and I am just too sick this last week to find out anything.

So, did i mention, that i am not in a good mood this week? :)



__________________

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

 

Tig


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Hey HepCat!

Dude, it's good to hear from you! Glad things are still going good for you. Lot's of slayed Dragons since we last talked. These new treatments are the bomb! Dragon death in a once per day pill. Man, times have changed since you and I went through the wringer!

How is life treating you old friend? Still in SC? I think that's what I remember. If I'm right, we know the brain fog is still at bay. If not, well, blame it on age, lol! Stay healthy and I hope to see you around the old stomping grounds. It's nice to see you here again. smile



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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