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Post Info TOPIC: Started treatment


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RE: Started treatment
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So so glad youre on the mend. I was thinking about you today so its nice that you updated us. †

A



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

2 year post tx- dragon slayer†



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Hi hepc2,

So glad things are progressing now, and that you are feeling better about things.

Nice you are able to get copies of these reports from your nephro for your own reference. I think you are in good hands with this nephro.

Tig's link is excellent - cooincidentally, I had happened to have already studied up on this very site, on this particular facility and this group of doctors who specialize in parathyroid dysfunction, and found ALL of their info VERY interesting and good. I have also googled up many other sites that can teach you all kinds of things about funny iPTH's, but by far, the link Tig posts is VERY good in explaining things. (It's in Florida!) I know someone in Alberta who should be going there for treatment! But alas, out-of-county costs too much, out-of-state seems pretty cheap, and in-state is best rate of all! American health care system is unique alright. If i needed parathyroid work, this would be a place I would want to inquire with. I actually emailed one of the docs there with a question once and he was VERY good about communicating with me.

Good on you! to finish up that conversation with the nephro guy about your PTH, just leave further considerations of this to him - you are on his good radar now, he will follow you, and your kidneys, leave it with him, I am sure he is and will keep a keen eye on you.†

I am glad he is also keeping a keen eye on your RBC's/hgb (and of course all your labs and all of you!), you will get it all worked out (eventually) between him, the dietitician, and diet (including low dose sod bicarb intake) with their good following.

I like his comment ... "continues to exhibit ongoing improvement" ...†biggrinC.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Itís all sounding very positive and Iím pleased to hear about your progress! There is definitely some correlation between calcium stones and an elevated iPTH. The parathyroid glands are definitely a potential source of interest whenever a calcium kidney stone found. If you havenít looked at this webpage, take a moment and review it. Itís very informative.

Kidney Stones and the Parathyroid



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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Hi, yes, I feel like my old strong self again.

Was in an office a few days ago and one guy was having problems keeping his friend there. Think that the friend had early skin cancer moles but he didnt want to stay. LOL..."His friend turned to me and said, hey, you look really strong can you make sure my friend doesn't leave the office while i run to the loo"
I chuckled, oh, if he only knew :)
But it was good. Back on the moped, motorcycle boots in hand, ready to kick some a** again :)

Anyhow, my Nephro called me at home a few days ago and we chit chatted for 10 minutes whilst he told me how happy he was that I was doing so well.

I did ask him about that iPTH because it appeared that the number was a bit higher but he said I did not need to be concerned, it did not apply to me at all. I didnt get a chance then to ask why it didnt but will in future.
He did want me to start taking 1 pill daily of Sodium Bicarbonate. I believe it keeps acidity out of the urine...or did he say the blood. I can't remember. One of those anyhow.


Here are his recent "notes" as they might explain it better.

-------NOTE------------

At her last visit, the improvement of her renal function appeared to have plateaued. This was in the context of what appeared to be a symptomatic urinary tract infection with the presence of a nephrostomy tube. Her urine culture was found to be positive for pseudomonas, as well as Enterococcus faecalis. A prescription for CIPROFLOXACIN was therefore called in. In addition to this, we sent off a GN workup to make sure that there were not any other obvious causes of her persistent renal dysfunction.

Her symptoms improved on antibiotics, but then relapsed after the course was complete. A repeat culture was still positive for Pseudomonas and she was retreated with a longer course of CIPROFLOXACIN. Thankfully, since then her nephrostomy tube has been removed and she has no further irritative urinary tract symptoms. She states this is the best she has felt in many years.

From a metabolic standpoint, she says that her blood sugars started to rise while she had a UTI, but those have since resolved. She follows her blood pressures at home using an Omron automated upper arm device and finds that the average of 3 values typically sits around 116/63. She has no chest pain, shortness of breath, PND, orthopnea, or edema.
On physical examination, Her JVP was 1 cm above the sternal angle and her cardiovascular exam was normal, with normal heart sounds and no murmurs. Her chest was clear to auscultation and she had no edema.

She completed laboratory investigations immediately after today's visit, and her hemoglobin was 105 with a white blood cell count of 7.3, platelets of 278, sodium 141, potassium 4.6, chloride 110, bicarbonate 20, and creatinine 217, which is an improvement from February. Her alkaline phosphatase was elevated at 170 with a calcium of 2.45, phosphate of 0.94 and albumin of 43. Her repeat urinalysis demonstrates 0.3 g/L of protein and no blood. Protein to creatinine ratio has fallen to 46 mg/mmol and her albumin to creatinine ratio is down to 11.2 mg/mmol. Her PTH is 18.5, ferritin is 32 and iron is 15 percent.
continues to exhibit ongoing improvement from her severe acute kidney injury. Her blood pressure is well controlled, and her proteinuria has reduced substantially. Her complement levels, ANA, ANCA, and myeloma screen were all negative.
In addition, I am going to suggest that she start a low-dose of SODIUM BICARBONATE for persistent metabolic acidosis. Depending on her dietary assessment, we could also introduce IRON supplementation.

----------------------


For now....

iPTH - dont hold me to this but I think it doesn't apply to me, I believe, because most kidney stones are calcium based, whereas, I am pretty sure mine is the other type...of hand I can't remember the type exactly but it falls into a much smaller percentage of stones.† So, I think, but am not positive......that the iPTH only applies to those with calcium based stones??!!



-- Edited by HepCGtype2 on Monday 16th of April 2018 10:04:17 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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Hi,

Yes, as Tig says, a very good update!†

So glad our communal crossed fingers seems to be working, as far as no more UTI's! Let's keep that up! Aside from crossing fingers, we can take up knocking on wood too, if that also helps to disallow any further organisms to gain a foothold anywhere in your urinary tract! - we wish no further complicating infections to complicate your kidneys (and life!, life as we would normally know it!) - things for you have already been long way too unfair and complicated!†

Things WILL get better! The "tubes" although they were an important-thought intervention which might/may/could have been crucial under your emergency circumstance, and as part of your kidney treatment - can be double edged swords, as they in themselves may have innocently in an otherwise well-intentioned way, contributed (over time) being perhaps playing a part to allow infection, this can happen. BUT, you had no choice in the matter, they were trying to"safegaurd" you with the tubing interventions. Things, we hope, will all quiet now on the infection front. JUST KEEP DILUTING YOUR URINE.

Glad to hear the creatinine is going downward again from (prior/last?) 247? (I think that's what is was last), to (now, the most current) being 217. Very welcome news! The correct direction! A decent drop. I think you, with your nephro guy, will be seeing more and more improvements now, you have also removed other possibly complicating factors out of the equation (like possible obstructions, many meds, halting infections, and most of all you have regained a new balance in your health WITHOUT HCV†which affected all of you,of you, including your kidney health. You and your docs are all trying to do the right things for you now.

I hear ya about the meltdown! Sorry about that, most of us can relate to your plight (while hubby was also having his issues, all at the same time you are in midst of a series of long ordeals) - way too much stuff, anyone could easily "hit the wall" with a meltdown or two! I think you have held up (under very trying circumstances) amazingly well! Strong lady.

I am glad you are gererally feeling a little better (you mentioned) by just being without the HCV. And I BET it feels much better to be tubeless now, and without the distressing urinary-type symptoms! All very good things.

I only go on and on about the iPTHONLY because it presented along with your lowish hgb hx, quite a while back, and there is some association between lowish hbg, kidney issues and para-thyroid dysfunction, BUT MOSTLY I remind you because it's†just a thing†your nephro guy needs to discount/dismiss/put to bed, he may already have done so, but has not communicated this with you. Just a dangling rule-out thing for us. Para-thyroid influencing things I hear either are, or are not, PTH repeat testing is not always more telling, someone just needs to decide whether your para-thryoid could be or could not be part of your overall problem. I recall your first iPTH (in Nov?) was 16.2, similar to the latest 18.50 pmol/L you post today.

What IS your hgb?? - you didn't actually say what is was up to now, just that it was improved? Last one (Feb?) was about 99g/L. One other older one was at 106?

Good you finally got back to chasing down the elusive dietician trail.†Take your MOST CURRENT labs with you†for the consult (for her ease of ref) - don't rely on memory or on verbal only. Show her your (2 or 3?) most recent (2018) hgbs/platelets/hcts/ureas/calciums/potassiums (electrolytes and anion gaps).† She should be made aware that your serum potassiums have both been NORMAL the last two times?, now? (and back in Feb?) when your Feb report showed a "normal" potassium (within limits) at 4.8 mol/L, and as well, that your current calcium is showing normal. She should be made aware of your ureas (I think you have shown 2 abnormal ureas since Feb). You should also apprise her of your longer (than shown in 2018) hx of lowish hgb's. Hope she turns out helpful and worth her salt (heehee, pun!) - some indeed are!, some ... mm, not so much.

Glad you are back in the hands of your deducing nephro guy, and also have your very own GP now! Later, C.††



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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"Don't forget about asking nephro what HE thinks about your about your iPTH, and HIS opinion on (possibly related to iPTH)"


Oh crap, the ONE thing I did forget to enquire about.
But I see he gave me a test today for it and i see the results.
Guess he is looking at that possibility now I see it was tested for he checked my neck, for the first time and when I asked why he mentioned I think that he was checking glands.

I am seeing him again in 3 weeks only because he forgot to give me blood work for 2 months before today. So wanted to see me sooner than later, after blood work today.
Who knows, maybe he is looking at that iPTH thingie..
Off hand, if i remember correctly though but dont hold me to this, I believe that strikes people with kidney stones of calcium.
If so and if i have this right, I have the other type, the type that only a small percentage get.
For some reason, I have in my head, the idea that the iPTH only affects those with calcium related stones, BUT i could have that all wrong.
I will make sure to take that up with him in 3 weeks.

Parathyroid Hormone (PTH), Intact
VALUE
18.5 pmol/L
Abnormal

1.3 - 7.7 = Normal


Sorry but offhand i can't remember the number from last time and i dont see it trended in my chart online but I WILL remember to ask him on the next visit.
My Calcium is Normal

Calcium
VALUE
2.45 mmol/L
Normal

Anyhow, will let you know if it does turn into anything Canuck!


Hope all are well here?!
I haven't had a chance to peek around the site at others on treatment, for months.....

Thanks Tig :)




__________________

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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Congrats, I just love a good update! Things seem to be going in the right direction and thatís fantastic news. YouĎve been through so much over the past few years, itís time for continued success and happiness. You have certainly earned it!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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Yes, everything is improving remarkably fast over this past week since that tube was removed. I am not sure if that is coincidence or that those tubes become quite detrimental after time.

Saw the Nephro today.
Just got all the blood work in and so far, from what i can tell, it's all looking good.
Noticed, for the first time, my various red blood cells, hemoglobin, etc, which had all been extremely low for ages, have suddenly started to all move towards the normal mark.
Still a ways to go but on the upswing for the first time.

Creatinine has gone down to 217 from the high of 798. When I was in emergency, they said they hoped it would eventually settle at the 150 mark, the point in which they felt it all started to go wrong.
But they weren't optimistic after the nephrology tupe was installed. They felt it would drop from 798 rapidly but it didnt. That had them warning me then they were unsure if it would drop all that much.
Seems to be closer than further away.

No UTI, no cloudy urine. ALL gone!!! I tell you, I feel great empathy towards any females, or males for that matter, that would suffer that indignity on a regular basis.
I am really surprised no one has come up with a cure for that yet and personally hope UTIs never come to visit me again.

Asked to see a dietary nutritionist, specifically one dealing with kidney issues and he said, good idea and will set me up. No idea why I had to bring that up though. But he did confirm that proteins were not an issue for me, that i can eat meat if I wish to but just stick to low potassium diet.
My potassium is moving down again as well.
Still doing blood pressure daily a few times, averaging at about 113/65 so still no idea why the quack doctor put me on high blood pressure pills :)

So yes, it seems to be finally turning around. Fingers crossed. Sad at the loss of innocence. By that I mean, not being able to 100% celebrate the good news for now I fear what bad news might be just around the corner but after a few hits...you cant help but wonder what's next :)

Husband is fine and healing well, taking it easy as much as he can.
That was extremely bad timing.
As I was in the midst of those 2 UTIs, barely able to sit down, having to spend every day in the hospital for about 10 days.
The day before he came home I finally broke into tears at one point.
I was exhausted and out of that exhaustion, feared how my kidney healing progress might be hampered.
Fortunately, at my breaking point, he was met with news saying he was being released the next day taking a huge load off of me.

The Nepro did confirm today, that my increase of energy, general health, etc, to some degree would be kidney related but as I had been complaining about this horrific loss of energy for about 4 years before the kidney loss, he believes that was likely all Hep C related for according to him, I had perfect Kidney function at least 3 years ago.
The loss of energy happened before that and all those other little things here there and everywhere, so pretty sure yes, that that all healed due to the HEP C being eradicated :)






__________________

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.



Guru

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Yay! Tubeless, as you should be! Good news. I've got my fingers crossed for you too. No more UTI's are first on our don't-do list eh?

Good you are seeing the GP again to sort/organize things as best you can. Aside from R&M's, C&S's, GFR's and kidney function panels, make sure they keep following your hgb.

You will be seeing your nephro guy again, soon, I assume, and we'll see what's what with him then. Don't forget about asking nephro what HE thinks about your about your iPTH, and HIS opinion on (possibly related to iPTH) low hgb's.

I am so happy you are no longer packing HCV, OR the darned plastic paraphernalia anymore. Free!

Keep drinking that lots of water to keep creating a nice urinary tract "flushing" and to make only nice "dilute" colored urine!

Keep us posted, otherwise we'll be fretting after ya. How is hubby faring now?††winksmile†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Thatís fabulous, Iím so glad that youíre rid of all those extra parts and pieces. I can only imagine the relief youíre feeling right now. I donít think Iíd ever want to go through what you have. BUT... if I can be 40 again, Iím willing to try, lol!†

Best of luck and I hope you never experience another UTI as well. Youíve dealt with enough plumbing problems. With all of the improvements, I think the future is going to get brighter with each day. Enjoy every one of them!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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Thanks everyone!

Had it removed. They did an Xray first, shooting dye into my bladder to make sure it was no longer blocked, which it wasnt, and out came that tube.
I was on the 12th day of 14 days of antibiotics but still felt as if the UTI was present, the day before the tube came out but as soon as it did, the "residual" feeling of it abruptly ended.

I hadn't done any socializing for those 5 months. I was too conscious of that bag on my leg the whole time so it was a great pleasure to be free of it.

Have been running around the past 5 days and for the first time, aware of how physically strong I feel again.
Hard to believe feeling this good that I had lost a kidney and all of the complications that came from it.

So, I feel pretty damn close to how I felt at 40, for example. That i believe I can thank the HEP C cure for. Don't believe that that would be kidney related.
Have been checking my blood pressure twice daily in 3 increments each time and it's usually in the 111/68 area since it has come out, since the antibiotics worked so can see that all of that was stressing me out a bit, although I was still certainly in a good range for BP.

So FINGERS CROSSED no more UTIs.

I sincerely am in awe of woman that must deal with those on a regular basis, never having had one before, or anything like it.
I wouldn't have the patience :D

Edit: Sorry Canuck, I didnt see your post beforehand so my urine wasnt tested.† Pretty sure right now I am clear of it but do have an appointment later this week with my new family doc. Will likely do so then. Only seeing her so I can get a regular set up of blood tests, I suppose for every 2-4 weeks. That sort of thing. Trying to move forward now after all of this. Etc..



-- Edited by HepCGtype2 on Sunday 1st of April 2018 04:39:55 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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IĎm so happy to hear about your progress, Shelly! Removing that stent and getting your plumbing back on track, without foreign hardware in the way, should help quickly. Iím going to keep my fingers crossed for your rapid return to the ring!

Keep us informed and good luck...†smile



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

Hep C FAQ

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Guru

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Wonderful. Good job (geting them on it)! Finally, to be free of that thing and try to get things back to more normal. Good luck tomorrow, it should be way less stressful and traumatic (coming out) compared to the "emergency" state you were in when you had to have it put in!†

Progress! One less thing once that tube is gone.†

While you are there, ask the uro guy if he will test the urine for you (for everything) just before he removes the tube†- might as well, as you and your urine, your tube and kidney are all conveniently right there, handy like! See if he will send you to the lab as well (while you're at the hospital anyway) for a serum creatinine/GFR/hbg, etc.

Can't hurt to ask, to see if he will give you any of these tests. Tell him it would be good info to have these results now, on hand, in the interim, as you are going to be seeing your nephro guy next, and it would be useful info for him (and everyone - you and GP included). C.†smile



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Yes, tomorrow I am having this tube/bag removed. Finally!! :D

Phoned the doctors nurse last week the day they came back from a 3 week absence and it was apparent that she had not followed upon it. She got back to me 30 min later with tomorrow's appointment. They will do a quick Xray first and i have 2 days left of the antibiotic once its removed.

One thing interesting about this particular bacteria I am now fighting, according to scientific data, is that often a patient's blood pressure drops lower on it. In some cases, I am guessing so low, if they are that ill, as it can be fatal.

I test mine 2x daily, in 3 increment tests, as done in the doctor's office and I am generally in the 120/63 or 121/75 range but as soon as I discovered this bug I did notice that my BP started to drop.
I had had low BP as a child, all the way though I guess until about 10 years ago. I knew this for if i stood up too quickly, I would feel the effects of it for a second or two.

I felt that again 2x within the last 10 days and LOL'd for I remember how angry the specialists in emergency were with regards to my having been given a blood pressure pill daily for 2 years, yet my BP was fine that whole stay.( I had stopped taking it 3 months earlier when I became ill so my readings were med free)



So, right now with it having dropped a bit, it reads in the 114/62 or 110/64 area so watching it but i suspect it will get closer to 118 or 120 once this bug has been eradicated..

Speaking of which, I have to go back to finishing my taxes. Yes, brain is always strained throughout this process. Can relate. :D



-- Edited by HepCGtype2 on Monday 26th of March 2018 11:52:58 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.



Guru

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Good for you!, for persisting, and getting the cipro organized. Not easy I know. Good job getting past these people to get things done! - wish they were more on the ball (and faster) for you. Keep on them! See what you can do about the uro guy's work to remove the tube, maybe the nephro guy (or your GP) could be of some assistance to you, by them†both givng the uro guy a quick call to help prod and remind him .... that you are still WAITING!

Wrote you a PM and then LOST it - poof, just disappeared! oh well, it's late and my brain is fried doing books and numbers for the accountant/tax man! My excuse anyway.

Later. Hang in there. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Tig but there isn't any need for you to be sorry, this is not your fault :D

Damn, really had to pull teeth for 48 hours to get any help but finally both doctors phoned me 20 mins apart and had decided on the same course of action, Cipro 2x daily for 14 days.

The Nephrologist agreed with me that it was time for this nephrostomy tube to be removed for all of these infections have taken place since the ureteral stent was installed. The Urologist forgot to set that up before he went on a 2 week holiday but is back on Tuesday. I will be pulling teeth again to get any action done but will get this handled ASAP.
Would have preferred that it were taken out at least while on the antibiotics, hoping no other infection would set in afterwords. So we will see.

On Monday I had the bag changed as i do once weekly but this one seems funky and 3x this week it has opened up on me with the slightest movement, drowning the floor, my legs and feet in the meantime. Once in public. Fortunately it was dark out, no one was around, but cold and it took me about 20 min to get home, with a soaking pant leg.
Yes, not having an impressive week all round this time. :D

Anyhow, grateful for all the tube did but they seem to be really at the best in emergency departments but afterwards ...well, I dont know. It's a learning process, thats for sure.

Cheers, all :D

__________________

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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Good grief! You poor thing. Iím sorry youíre having such a hard time with all of this. Hospital borne infection is common, especially Staph. Pseudomonas is common when your health is diminished by other pathogens and can be hard to get rid of. There seems to be an almost perfect storm going on in your body. I hope you can find a single doctor that will work hard to get your health back on track. Protect that kidney at all costs. It sounds like you have so many irons in the fire and none of them are getting hot. Too many doctors and not enough answers. Raise some hell and make those people listen! Good luck, Shelly!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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So I was right and it was a bacterial infection rather than a yeast infection one can pick up from antibiotics. This ones not too happy sounding though :D

When I went to the doctor 2 weeks ago and he dipped a strip into the urine and said i had some bacterial infection and prescribed me the last round of antibiotics, I then went to a lab nearby, I likely won't use again, left another urine and that was the one that came back days later stating I did not have an infection but I KNEW that I did.

Finished the prescription a week ago today and by Sunday it was starting to flair up a bit again.
Monday I decided to go leave a urine for my Nephrologist at the hospital. Later that day, I thought i better go to my GP and just double check that it wasn't a yeast infection although I doubted it was.
She said I looked completely normal inside, took a swab and also dipped something into my urine and again, said yes, I had a bacterial infection and would prescribe antibiotics if/when the urine results came back positive.

She said i also had a bit of blood in the urine, but the blood, I have not noticed so it must be very minimal.



Todays Thursday PM and I received the results from the hospital yesterday morning. I have since tried twice to reach the Nephrologist for a new antibiotic treatment but can't seem to wake anyone up there quickly :D
If i dont hear by noontime tomorrow, Friday, I will call the new GP and try them but i also know they are difficult to get into.
I am in the largest city in Canada, and its just becoming more and more difficult to get in anywhere within a reasonable amount of time.

Anyhow once you see what bacterial I have, it would seem to me that its apparent that this Nephrostomy tube needs to be taken out of me. i am not a doctor but from my end, unless they tell me otherwise, it seems to me that the "cure" is creating more illnesses than I need.
I felt that way initially with the urethral stent, especially when I found out that he installed it, even though he was unable to locate a kidney stone inside for it left me open to at least 2 UTIs, and as mentioned earlier I have never had a UTI until now.

My understanding of this new bacteria, is that it is often picked up in hospitals, via the tap water but won't affect a healthy person but one either compromised and/or with tubes such as i have into my kidney, are prone to this affecting them.
I have also read, if correct, that nephrostomy tubes need to be re-done at about the 4th-5th month. Guessing they are only good for so long and mines been in now since November 4th, I think it was, so 4.5 months now.

Organism:
Pseudomonas aeruginosa


Qualifier:
>100 x E6 cfu/L
Sensitivities:
Ceftazidime: I
Sensitivities:
Ciprofloxacin: S
Sensitivities:
Gentamicin: S
Sensitivities:
Pip-Tazo: I
Sensitivities:
Tobramycin: S

Pseudomonas aeruginosa >100 x E6 cfu/L

Ceftazidime I
Ciprofloxacin S
Gentamicin S
Piperacillin/Taz I
Tobramycin S
_____________________________________________________________________________
Antibiotic Interpretation Key: S=Susceptible, I=Intermediate, R=Resistant, D=Susceptible-Dose-Dependant, N=No Interpretation



Lovely sounding bacteria isn't it? :D






-- Edited by HepCGtype2 on Friday 16th of March 2018 12:23:16 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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Yes, that is a very good educational lab link.

Here's another that can be helpful.†Normal Lab Values - another Guide

It is natural to be wondering how you got to where you are today! It would be interesting to know the opinion of your nephro guy, as to what and when and why you experienced the most critical decline in your kidney function, whether that it was mainly due to pre-existing conditions (HCV), or repeated past mechanical obstructions of your waterworks, or just everything that has occurred. What were the greatest contributing factors, may be hard to suss. He may have some opinions he could share with you.†

We cannot know causative reasons, but it "could be" that above all else being HCV free is a very important element (now out of the equation) as far a deleterious effects on your kidney performance, perhaps as much as being onstruction free. Who knows! - you nephro guy will likely have the best guessing here.

Good you are dutifully taking your BP, trying to eat right, trying to hustle the uro guy up.

Good you note less "UTI" type symptoms today. I too hope that will be the last of the antibiotics you need. Keep on them though, with them giving you repeat R&Ms and C&S's, your GP should be good for that, and, as well, she may also be useful in enabling you with any lab requisition you request - to have another set of bloods (creatinines, CBC/hgb, etc. and GFR) done prior to your next visit with your nephro guy, so he has ready assess to them during your appointment with him (for discussion/assessment purposes).

How is your hubby fairing now? Ok I hope. Hang in there the both of you. Things will improve. I am looking forward to your next nephro appointment, and hoping for no more 2 steps back for each one forward. We only want 2 steps forward!†

I would much prefer to be talking with you, than doing income tax, but I can't procrastinate any longer! Later.†smile†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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No, I hadn't seen that yet TIG but that's a keeper. Have saved it and will go through it fully when done here. Good stuff!

Finished the last of the antibiotics last night and as of this morning, all symptoms appear to have finally disappeared.
I noticed that yesterday afternoon and kept my fingers crossed, but so far, so good.
The idea that it was a yeast infection, I understand but the symptoms were completely different from the one I do remember having 40 odd years ago, nor when I looked todays symptoms up online.

I should clarify a statement I made earlier that I believe was misunderstood.
At no point did I suggest that the meds for Hep C were to blame for this kidney problem.
Yes, it exasperated it but I had been sick before i started taking them, which I clearly described here.
My only thought towards all of that was I wish in hindsight they had held off on the pills for a few months, as I had only the slightest scarring, and my numbers were low enough that the doctor told me that I really fell just below the acceptance line.
Had they had a record of my earlier kidney problems, I believe that should have been looked at closer before i started.

The doctors did not blame these meds on the CKD but an overabundance of medication thrown at me the 2 years prior.
Before that point, I rarely took even an aspirin.
So please understand that i am extremely grateful to have beat the HEP C problem for that unchecked, would have been diastarouns some point down the line on top of CDK but that i woudl have preferred to have had the CDK improved before i was given even more medication,
had all of my doctors been aware of what the others were doing.
BUT, if blame could be put anywhere, it would not be on the hep c meds but the unnecessary Metformin and the BP pill I was given for high blood pressure, which I stopped back in or around August.

Don't know if I mentioned it but i purchased an OMRON BP machine and have been doing my BP twice daily in 3 increments each time, just as the doctors do and my BP is in the normal range every single time.
Just as they claimed in emergency and were aghast that i had been given that particular pill. Can't recall the name of it offhand now but that was the one that concerned them, they felt that the kidneys could not flush properly.



So hoping, finally, that this UTI or whatever it was will continue to go away and allow me to continue the healing process for whilst this has been taking place, my creatinine levels have plateaued at about 220.
The focus has been completely on a low potassium diet and i have even learned to eat Tuna, which before now i considered cat food. :D

So thanks again for those Lab Values.
Now I just have to get the Nephrologist to give me blood tests monthly so I can see what works and what doesn't.

Oh and, I did call that urologist yesterday to see if they were ever going to call me about that supposed Xray I was to have before this stent/bag into my kidney removed but they are on holidays for the next 10 days now LOL

I can't win :D


__________________

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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Hereís a good resource on lab values and results if you havenít seen it yet.

Lab Values



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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I am pretty easy going and go with the flow which isn't always a great way to be but in this case, perhaps it is because I am not really angry, nor do I dwell on myself, or the mistakes but just consider this all interesting and another learning curve.

I was on antibiotics once as a teenager which created a yeast infection I will never forget. Never having been ill until now, I have avoided antibiotics ever since but at no point in time does this feel like a yeast infection.
It was a completely different experience then this.
That said, I will look into it for things do change and if anything I have learned these past 6 months is that no matter how convinced I am that my body is telling me its A, often its B so trying not to guess anymore :D

I did buy a Omron BloodPressure machine and my BP is normal which was what i was told repeatedly in emerg those 5 days i was there.


Anyhow will go read the PM and will look into that possibility for I have one day left on these antibiotics and i still have the same slight sensation as last time, near the end.
One way or another I will track down the cause.

Thank you for all your help here as a couple of you really helped me to learn how to read blood tests for all of this is new to me and a steep learning curve :)

__________________

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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Ah! Thanks, now I get ya- about the early CAT and getting the ureteral cath out. Good riddence to that cath. BTW.

So - good!, next, try to chase down that xray and the booking for the nephrostomy tube removal.

If you think you are brewing a localized overgrowth perineal yeast thing (maybe due to being on antibiotics), then just ask your doc to prescribe you something for that, even just an rx external topical ointment, or what he/she thinks best/suggests.

That was excellent advice your uro guy gave you - an ideal fool-proof way to ensure your water intake is "good enough" - judge by the color of your urine - it must be "dilute" - he is exactly right ... the worst thing a person (who is stone prone) can do, is to have concentrated urine in any way. #1 common mistake.†

Perform and submit as many R&M's and C&S's as they will give you repeat reqs. for - no matter where you may think you are with your organisms or antibiotics, the more testing the better, to keep an eye on things.

So, it will be interesting what your nephro guy might have to say about things (once you get there again) re: UTI's, 24 hr urine, and other abnormal urines (and by that time maybe your xray/nephrostomy tube removal) and even the iPTH. Hope you get further bloods (including hgb and GFR prior to seeing the nephro guy), then all can be discussed at your next appointment with him.

Sheesh you two have been going through a LOT. I PM'd you BTW.†biggrin†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Sorry Canuck, I was in a hurry.
Yes, my CT scan changed dates.
About 2 weeks ago when very tired from running back and forth to the hospital as my husband had been a patient for 12 days, the uncomfortable symptoms of the stent became even more uncomfortable.

Only a female might understand this description but if one has ever used tampons, sometimes that tampon will choose to half expel itself, becomes extremely uncomfortable, and you would have to take it out immediately and install a new one.
It was the same feeling x 50.
I called the urologist one day and told them I could no longer sit down comfortably, that the stent felt as if it were expelling itself, was too uncomfortable so they quickly fit me in a few days later for the CT scan and then the doctor's office several days later to take out that stent.
Why the confusion on dates.
While waiting for that CT scan, I was on the CIPRO at the time and those horrid symptoms lessened within a few days, before the CT scan so I can't say if the stent really was expelling itself or that was just the worst symptoms of the UTI infection causing it to feel as if it were.

1) when that stent was removed by the urologist 2 weeks ago, he told me then he wanted to remove the nephrostomy tube but didnt have the proper tool in which to do so. Said it would be too painful so was booking me for someone to do that and take an Xray first just to be sure no more stones showed up. I havent heard from anyone yet though.
He noticed the colour of urine in the bag at that time and said that although it looked a very pale yellow to everyone else, that it was still too yellow for me. Told him i was easily drinking 8 glasses of water a day and any more and Id float but he said it was important for me to make it as clear as possible to avoid future stones.
Held up a bottle of that clear antibiotic gel you wipe into your hands and said I wanted to aim for that colour.
LOL
No idea how one can pee completely clear but working on it in the meantime :)

3) Protein Electrophoresis, Timed Urine:
Protein (Conc)
VALUE
0.40 g/L
Normal

Protein, Urine
VALUE
0.82 g/CP
Abnormal
GENERAL REFERENCE RANGE
<=0.14

Urine Volume
VALUE
2050 mL
Normal

Tech Comment: Req#xxxx, Moderate amounts of albumin and other proteins present.

4) No more recent GFR, creatinine blood tests I suppose until April when I next see the Nephrologist (every 2 months) but I think I will have another doctor give me a requisition form before then as I woudl like to be tested monthly for now.

7) abnormal iPth: I forgot to ask the Nephrologist about that but did ask my new but as of yet non impressive family doctor and she phoned me to say she had spoken to some specialist who said that my numbers for that test were not at all abnormal with what I had been experiencing but i will remember to double check that with the Nephrologist in April.

No one suggested anything to be such as yogurt but I had never needed antibiotics until recently, other than one time as a teen and remember the wicked yeast infection it created. So a pharmacist friend suggested the probiotic pills, which I took (damn expensive mind you) and I have not had that lovely side effect from antibiotics as of yet but will eat some yogurt today. As mentioned earlier, I was avoiding it as its higher in potassium than I am supposed to consume.
I dont believe that this slight burning upon urination, and/or what feels like periodic quick slight stabbing of the clitoris is yeast related, although i did think of that but even if it had been, I believe that pro biotics are supposed to clear that up. In any event, had that been the issue, I assume that it would have shown up in the urine test?!

__________________

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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Ah, I see our posts crossed in the mail!

Will have to read/respond a bit later, have to be on my way out shortly.

Did you have any further answers to my questions (1 through 7)?? Ignore question 2, you covered that one well.† smile†C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Hi, great you posted some new labs.

From a previous post I made (in review of some of your old urine lab results) this was what I had noted about some of the abnomalities showing in your urine then:

...†image.ibb.co/bLaKMS/Urine.png†- just (in general) in a preliminary urinalysis result like this -†turbidity, the presence of blood (RBC's or erythrocytes), protein, WBC's (leukocytes), and nitrates†- would flag them to look for a UTI, but there can be also "some" other situations which can influence (to degrees) the presence of these things in a urine sample ...

So, coming to your most recent urine tests you have posted just now ... aside from the absence of organisms (good for the moment), there is also a (good) absence of previously seen amounts of nitrates, as well, your urine is no longer "turbid" as noted previously - it is now noted as "clear" and merely "cloudy" (also another good thing), but there is still seen some small amount of protein, small amount of erythrocytes (RBC's) and small amount of leukocytes (WBC's).†

So yes, your urines should still be watched closely and re-tested using R&M's and C&S's to ensure they keep all parts of your urinary tract successfully freed from any kind of organsim growth. That is the priority, making sure your urinary tract is kept free of organism growth. Push for frequent following of you via urinalysis's and ask for repeat testings with R&M's and C&S's.†

Now, about this Mar 4 CAT scan ... we already knew of your previous imaging and procedures, because you had kindly explained/covered the past events thoroughly - rather, it was the posts you made on Feb 8 and as well on Feb 11, saying you were booked to have a CAT scan on Mar 4 and then booked to see the nephrologist several days after Mar 4, that led me to inquire about Mar 4?? So do you have another CAT scan and nephro appointment coming up?

C.††



-- Edited by Canuck on Sunday 4th of March 2018 10:44:14 PM



-- Edited by Canuck on Monday 5th of March 2018 01:50:48 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Tig for the information.

Yes, I was taken aback by the result today from Thursday as I expected one of those 2 strains, identified on Feb 9th, to have been resistant to that 10 day CIPRO regime.

What I have experienced, suggests to me that a UTI is present so I do have a requisition form for another urine test, but at the hospital, whose test results I seem to trust more, I think than the lab that did the test on Thursday.

It might be a bit late to have it done, considering i began the Ampicillin late Thursday PM/early Fri AM so I will have to give thought as to whether its worthwhile tomorrow or not to leave one there.

"Google can be your friend or drive you crazy"

LOL† So true.

I am booked into these doctors once every 2 months but the problems are coming up much sooner than that at this point and i dont think I can afford to wait out a problem until the next appointment, hence, Google† †:)

I dont consume much salt although over Xmas I did go a bit wild with Avocado Sushi (soya sauce/salt) so I have had to cut that out and am in the middle of moving over to a plant based diet only.

The partner just had a few teeth taken out before Xmas, and was having surgery, and bone attached to one part of his jaw in order to fit in new teeth and 2 days later, they all went on holidays and he gained that infection.

Would not surprise me that one of the strains I picked up from him.† But during that, Xmas and January, we OD'd on easy Chili recipes = lots of ground beef which I have since cut out of my diet, and all red meat since.

Have been eating a bit of skinless/boneless chicken but seems I must cut that out as well and go plant based as much as possible.

Have spent a lot of time looking up food for Kidney disease.

Really quite interesting in that all the foods I ate that are considered healthy for most, aren't for me now.

For example, I am not a big bread fan but would at least eat high fibre multigrain breads but now discover I can't and must eat white bread only† † (YUCK)

Can't eat avocados and of course i OD'd on those until a few weeks ago.

Am in the process of moving over to a rather dull but regimented eating plan but it has taken a bit of time to read up on all I can and cannot eat, and reading potassium amounts, and so on.

Hasn't been an overnight process but am almost there.

Basically, if I crave it, then it isn't good for me, which seems to be the rule of thumb to live by with regards to low potassium lifestyle diet changes† † † †:D

Wish they could just feed me via IV it would be easier† † LOL

1st course of Antibiotics given to me when the stent was inserted, as they give to everyone, MACROBID for 10 days.

2nd course, about 10 days after Macrobid ended, I had the worst UTI symptoms to date, Feb 9th when they discovered the 2 strains, which led to 10 days of CIPRO which ended about 13 days ago.

3rd round, being this Ampicillin started Thurs PM/Friday AM.

So yes, each antibiotic different than the one before it.

Funnily enough other than one antibiotic about 2 years ago for a root canal,† I dont recall ever having taken them before, other than once when I was a teen.

Meant to add, I have only used the probiotic instead of Yogurt, which I normally love, 0% plain, even that is one of the higher potassium foods I was told to stay away from† † :(






-- Edited by HepCGtype2 on Sunday 4th of March 2018 06:06:40 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,

You sure have a lot going on there. Glomerulonephritis occurs ocassionally in Hep C patients, another one of those extrahepatic manifestations. There are similarities in it and other urinary tract maladies. Google can be your friend or drive you crazy. The possible answers are fairly large in number. The fact that you do have reported Pseudomonas A and Enterococcus F present seems to indicate a UTI, but both strains are known to be antibiotic resistant. Since you have been on antibiotics for so long, there may be a resistance to your previous course of antibiotics. Are you on something different now? The C&S shows what it may be sensitive to. Long term antibiotic treatment is hard on everyone and everything, particularly the gut. Canuck mentioned yogurt, good idea, even with your probiotics. The Entero. F is mentioned in dental infections. That couldíve contributed to some of this. Be sure you mention that to the nephrologist next time.

There is a possibility of a contaminated sample during the first test you had done, which is why the second test was negative. Itís easy to contaminate a sample if the person doing the test failed to follow proper procedure.†

The high protein and white cell elevations do seem to indicate some type of UTI. The first thing I would reduce is my protein and salt intake. If you arenít already on a kidney diet, you might want to consider speaking with a dietician. You may obtain some good relief just by changing your diet. You may have one or two things you can cut out that make a world of difference. Recovering from the HCV and the healing underway following your recent ureteral stent removal, will hopefully provide you with some steady improvements.



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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'Whew girl! Sorry for all your trouble, but you are gloriously hepc free now"


Yes, you are right but how much further ahead i would have been had the liver doctor shown more alarm and had me tested when I first mentioned my creatinine raising, as you remember my doing so, several times.

CAT scan.† Had that done about a month ago and according to the Urologist, there are no stones present.

That seems to be the situation every time we look.

It was that way with the urologist 1.5 years ago† ( said they had mysteriously disappeared over night)

When I was sent 2.5 months ago to have the stones "spanked" they could not see a stone and i was sent away to await the CAT scan and the ureteral stent.

Apparently, upon that procedure, they place a camera of storts, inside of you and break up the stone but he said he did not see any then.

Why he inserted a stent then, causing a UTI is beyond me...but seems par for the course as of late† † :D

I am apparently waiting for one last Xray to be booked, to look again but just as a last step procedure before having this Nephrostomy bag removed.

I was told that 2 weeks ago but have not had a date set for that procedure yet.

@Observer:† Thanks and yes I was starting to feel as if this was going to be a never ending UTI but the report i just read claims no bacteria present, so momentarily stumped† †:)



-- Edited by HepCGtype2 on Sunday 4th of March 2018 01:49:42 PM



-- Edited by HepCGtype2 on Sunday 4th of March 2018 01:51:25 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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A bit confused ATM.

When I went to a doctor on Thursday to be tested for the UTI I gave him a urine sample, on the spot and he stuck something into it that showed bacteria was present.

He was not going to write a prescription without presence of something, yet the urine sample I gave at the clinic 2 hours later for a full test† (report shown below) suggests no bacterial present. IF I am reading it correctly where it says,

Culture Status Final
Culture Report Urine Culture

No Growth†

Will†keep you posted when I know more though

Interestingly enough, I just got my urine results online. It appears that I do not have a UTI if I am reading this properly.
Googling further, it can be a sign of something called Glomerulonephritis which does not sound good.

I took that urine test on Thursday noon.
A mistake was made and I took 1 antibiotic pill 3x that day but first thing the next morning, realized it was 2 pills at once so I have been taking 2-4x daily since Friday.
I was told by that doctor that the symptoms should go away within the first day IF, the antibiotics for a UTI are successful.
But I have had a mild sense of burning while urinating since, and a strange, almost sharp quick feeling in the clitoris a couple of times.
Funnily enough, that sharp feeling seems to be immediately reduced if I pop a pro-biotic pill i take when I feel the need.

One thing I am wondering though.
When I first reported what i thought might be kidney stones to my ex family doctor about 1.5 years ago, I mentioned some burning then.
Never had had a UTI before and that feeling went away.
Now wondering, if possible, if i had a fairly symptomatic free UTI which might have led to the failure of that kidney.
But, when in emergency in November, for this nephrostomy bag, they did all sorts of urine cultures then and nothing showed up.
From what I have read, UTIs can not go away on their own without antibiotics.
So...will contact the doctor on Monday and see IF what appears to be a UTIL is, unfortunately, Glomerulonephritis. :(

What is frustrating, is that I feel I am having to play doctor myself or things wont get handled.

Canuck, as for eating yogurt, I do know that trick but take a pro-biotic pill every 48 hours and was fine.
But 2x now I forgot to that the pro-biotic and got that sharp stab second pain in the clitoris-took a probiotic and it went away.

CANUCK:

Here is a copy of the urine tests that showed 2 strains, before i was put on the CIPRO on Feb 9,2018.

Organism: Pseudomonas aeruginosa
Qualifier: >100 x E6 cfu/L
Sensitivities: Ceftazidime: S
Sensitivities: Ciprofloxacin: S
Sensitivities: Gentamicin: S
Sensitivities: Pip-Tazo: S
Sensitivities: Tobramycin: S

Organism: Enterococcus faecalis
Qualifier: >100 x E6 cfu/L E. faecalis is generally susceptible to fosfomycin for treatment of acute uncomplicated cystitis.
Sensitivities: Ampicillin: S
Sensitivities: Nitrofurantoin: S
Sensitivities: Tetracycline: S

Pseudomonas aeruginosa >100 x E6 cfu/L
Enterococcus faecalis
>100 x E6 cfu/L
E. faecalis is generally susceptible to
fosfomycin for treatment of acute
uncomplicated cystitis.
_____________________________________________________________________________
Result P. aerug E.faecal

_____________________________________________________________________________
Ampicillin S
Ceftazidime S
Ciprofloxacin S
Gentamicin S
Nitrofurantoin S
Piperacillin/Taz S
Tetracycline S
Tobramycin S
_____________________________________________________________________________
Antibiotic Interpretation Key: S=Susceptible, I=Intermediate, R=Resistant, D=Susceptible-Dose-Dependant, N=No Interpretation



The RESULT of the URINE test from this last Thursday:

Urinalysis Chemical
Collection Date
01-MAR-2018
Collection Time
12:48
Colour
YELLOW
NONE/YELLOW
Appearance
CLOUDY
CLEAR
Specific Gravity
1.010
1.001 - 1.030
pH
5.0
5.0 - 8.0
Protein
HI
0.3
NEGATIVE (<0.3)
g/L
Glucose
NEGATIVE
NEGATIVE
mmol/L
Ketones
NEGATIVE
NEGATIVE
mmol/L
Erythrocytes
HI
0.3
NEGATIVE
mg/L
Nitrite
NEGATIVE
NEGATIVE
Leukocyte Esterase
HI
500
NEGATIVE
WBC/uL
Microbiology
Urine Culture
Specimen Source URINE
Collection Date 01-MAR-2018
Collection Time 12:48
Culture Status Final
Culture Report Urine Culture
No Growth



-- Edited by HepCGtype2 on Sunday 4th of March 2018 02:02:28 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.



Guru

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Hi there,

Wondered what was happening! Yes, you two have been VERY busy! (in very trying ways)!†

Well, I will give them a small benefit of the doubt, in that, there may have been other†(semi-related) urological reasons for utilizing the use of stents/catheters, even with no stones found.

It could have been for "insurance" reasons, to prevent ANY risk of urine not being allowed to escape the kidney period, whether it be to address "mechanical" reasons (stones in kidney impeding normal drainage), or, or stones in ureters impeding flow, or perhaps just damage to ureters themselves impeding flow, (resultant from stones passing through ureter),† ie. any issue†which might impede flow out of the kidney.

Lack of escape, "build-up" of urine inside the kidney can be damaging, not good. Your flows "could" have been impeded prior, perhaps repeatedly in the past?, thus helping to create/cause harm of kidneys - as well, it is feasible just passing stones themselves might cause harm to ureters?†Perhaps he did both your catheters for two "cautionary" reasons: (1) he wished to ensure patency, (guaranteed escape of urine from the kidney, no build-up of urine in kidney) by keeping the kidney draining "directly" (nephrostomy to the bag), and (2) by keeping the ureter patent as well (ureteral catheter exiting via urethra), thus also helping to guarantee flow with no back-up. But as well, maybe another reason for the ureteral cath. might have just been to help guarantee your ureter "healed to a specific good diameter"/a patent "size"? Jes guessin.†confuse

1) Glad the ureteral catheter is out (the one that exited via your urethra) - but, have they also removed†theother one that was attached to the collection bag???!!!

2) So, do you know the names of the 2 strains/organisms found in your urine?

3) Did you get the results of your 24 hours urine?

4) Any more recent creatinines/GFR's/ hemoglobins? (I think it was Feb 7 your Cr was 247 and GFR 18? And a prior hgb was still remaining low)?

5) Are you still going for your CAT scan Mar 4 (tomorrow)?

6) Do you have an appointment booked to see your nephrologist subsequent to the CAT scan?†

7) Don't forget to ask him if your abnormal iPTH (especially coupled with evidence of low hgbs, and prior hx's of stone formations) has any bearing on what may have contributed to getting you to where you find yourself today - trying to get your kidney function improved.

All these antibiotics you two have had to be on - did they suggest to either of you to eat yogurt?

Whew girl! Sorry for all your trouble, but you are gloriously hepc free now, and your nephro guy will get you straightened out. None of it easy, but it should get so now, more, in future. I demand and decree it!†smile†C.



-- Edited by Canuck on Saturday 3rd of March 2018 05:58:11 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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OMG...the expression It never rains till it pours or in your and your partners case...it never rains till a freaking monsoon downpours on you for weeks,months

I had months and months and months of utis that would not respond to the endless experimentation of antibiotics. I feel for ya. And teeth sheesh..nothing worse than infections in your face.†hmm

I sure hope things start smoothing out for you both

A †



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

2 year post tx- dragon slayer†

Tig


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All I can say is WOW...

You deserve a big break (brake) on all this stuff. I truly hope you can get this last UTI cured and gone. Having that stent in for no good reason would piss me off. I imagine thereís some hidden liability their insurance worries about. Of course now you can wonder if they caused you.......oh, never mind. You know where Iím going. Itís vital to ask 20 minutes of questions during that 10 minute appointment. A lot of these docs are just learning. Itís good to keep them on their toes! It also helps their next patient avoid the same uh, confusion?†wink

Keep it up, youíre sounding more positive every post. I see success on your horizon!



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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Hello everyone.
Have been busy this end, no time till now to say hello but have been super busy.
We all have problems, eh? :D

Got the results back of that original UTI and turns out I had 2 strains.
Just a guess but believe 1, first strain got around Xmas time and 2nd, likely picked up when they put in that urethral stent, as it is common to do so.
Was put on CIPRO for 10 days but on the 10th, felt it was 99% gone but not 100% and a week later, was hit again so just started on more antibiotics yesterday, Ampicillin but this time feels about a 2 out of 10 but when I started the Cipro, felt like a 15 out of 10 :D
Assume Cipro eradicated one strain but not the 2nd, fully so hope this time it will, otherwise i might have to look at IV antibiotics next.
F**kin hell. Only recall having ever taken antibiotics maybe 2x prior in my life, that i am aware of.

When it rains it f**king pours LOL

So yes, the partner had oral surgery 2 days before the Xmas holidays. They had to build up some bone in his jaw in order to apply a few teeth he had taken out weeks earlier.
An infection set in but dentists were all on Xmas vacation and no one could help.
He was in agonizing pain for 2 weeks.
Sent to emergency dentists who could not perform a root canal so given 2 rounds of antibiotics as the first round did not kill the infection.
Was not given proper pain meds, only given 10 x Tylenol 3 every 2 days, which meant, ill, tired, in pain, frustrated, he had to go back to the clinic every 2nd day for 2 weeks, until the holiday ended to get more 3s + proper dentists were back to work and he was operated on that first day back.
This wore him down, not to mention me.
One of the strains of an UTI I picked up, if googled is a strain known to happen to people that need a root canal performed on a tooth that had a root canal done years earlier ( rare but that was his issue)
It would have been within days of that to a week later that i got my first UTI so a guess might be that I somehow picked it up from him.† The reports on myt strains, mention one, which when googled is the same strain that those with his root canal problems develop?!


10 days ago, one day after i finished Cipro I had the ureteral stent removed.
That alone was a trip :D

Thinking I would lie down on a bed, the urologist asked me to drop my trousers, stand over a garbage can while he yanked it out. LOL
Maybe it's just me but the very classy manner in which it was pulled out had me chuckling.
INSTANT RELIEF WOW.
Turns out from the earlier CT Scan, all my stones have disappeared so the stent was installed even though with a camera he thought all the stones were gone.
Sort of tried to fix one problem that seemed to no longer exist and helped to create another.
Me? Just having a trip trying to follow all of the comedy behind all of this and really wonder if any of them truly know what they are doing.

The day after the stent was removed, the husband was released from the hospital having had surgery to untwist the upper bowel that twisted (scar tissue)
A few days after that the UTI that was not fully wiped out returned so just trying to get on top of these UTIs so i can heal the kidney, try to get the creatinine even lower and the GFR higher.
More tests and results yesterday.

Gonna be a pro at reading these tests soon, much of which I have all you to thank for having started my understanding of them all

Other than that, just hunky dory!!! Hope you are all doing much better than I LOL



-- Edited by HepCGtype2 on Friday 2nd of March 2018 12:29:38 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.



Guru

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Oh, just another thought ... from the folks where you picked up the 24 hour jug ... just phone and ask them if they could also provide you with a toilet "hat" for easier collection, and if not, then maybe ask them to arrange for you to get one from the hospital where you are now (unfortunately) having to frequent, or failing that, just on your own ask at both the nurses station and the lab (at the hospital where your hubby is at) if you could possibly get a hat from them.†

Once you start in on your 24 hr urine collection, if you are required to be on the road (for hubby as necessary, or for whatever reason) just remember to always†pack a portable container with you, in your purse, just in case you have to go "on the go", so you can bring it home with you again for your contribution to the jug. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Iím sorry to hear about your partner. I hope youíll have some good news for us soon. These are the times we hope to avoid but when they occur take them head on. If we can help, you know weíll try! Pass on our collective ďGet Well SoonĒ

Take care of #1 or #2 will be unhappy! You take care of each other...†wink



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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Oh poor dear! Concentrate on the tasks at hand. Sorry about your buddy. Let us know about things only when you get a breather. Some people only have trying things happen to them in threes, whatever happened to that kinder rule! Grab a few zz's, fer sure. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 forgot to ask him this time about the prior iPTH test. So many questions that one always falls through the cracks.

That said, the day before my new family doctor called me at home. I had asked her 2 weeks ago to give me a referral to an Endocrinologist. She spoke to a team and they told her that under my circumstances, that my numbers were not at all unusual and didnt feel it warranted a closer look.
I will double check that next time with him.

Yes, most recent GFR is 18 and Creatinine 247.

No, you are right that my recent A1C does not look outrageous but it still shows that my sugars have increased over Xmas as i expected they had.
Been learning a lot these past 3 months as to what increases it and what doesn't.
That said, I prefer them in the under 5 range, as opposed to 6.6.
I could be wrong not yet positive, but i think that this "irritation upon urination, as well as a feeling of it present 24/7 beyond urination" seems to fluctuate higher with higher sugar counts.

24 hour pee - just said to keep it in the refrigerator during collection and up until the time I drop it off at the hospital diagnostic area.
All I received was a big jug.
Laughed and wondered if I were to urinate in my hands first - where was the little thing to pee in to put into the jug for it stated clearly do not urinate directly into the jug :)
Am sure I can figure out a way around that one though :)

Will post more urine test results that came back to day ASAP.

When it rains it pours and last night my partner who is very healthy, had to be rushed to emergency.
He had a hernia around his naval 10 years ago which seems to have developed a scar along a tube which has created a very painful backup as something is "sticking" to that scar tissue for the first time.
A bit difficult to deal with now with my health not at its best but i have been up and down at the hospital 2x already these past 24 hours to watch over him. Back home just here and there to sleep a few hours.
On my way down there again now hoping he's a bit more comfortable than he was earlier. They are barely medicating him properly.

Out for now. :)


__________________

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.



Guru

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Ah, our posts crossed in the mail.

So good, by the time you see him again, when he has your CAT images, he will also have your 24 hour urine results too. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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Hi,

Thnaks so much for all that work you have to do to post your labs.

I like am liking the sounds of your nephrologist too. He is doing lots of looking.

Don't forget about this - just make sure he is already aware of your (prior) iPTH test. (I am betting he is already aware of it, or has records of that test in his files and/or has access to it, but be sure you mention it to him specifically, so he knows you have had that test done and that he knows the result of it). This is what we have discussed in a prior post ... "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?" ...

Your first lab link (there is no date - but I assume it is from the nephro appointment?) :†image.ibb.co/bLaKMS/Urine.png†- just (in general) in a preliminary urinalysis result like this - turbidity, the presence of blood, protein, WBC's and nitrates†- would flag them to look for a UTI, but there can be also "some" other situations which can influence (to degrees) the presence of these things in a urine sample. I am sure they must automatically do further C&S's following a urinalysis with these results so watch for a further C&S report on this same sample date.

Good you are having a 24 hour urine collection done, (1) did they instruct you that you have to keep the bottle on ice?? Maybe you do not have to, but when I had one done years ago, I had to keep the collection jug inside a bigger bucket full of ice to keep it cool (2) do you have a special "hat" for the toilet bowl to pee in (always left in the toliet) I had one so that i would not "forget" and pee by accident into the toilet and screw up including every void! (important that every drop coming out of you go into that 24 hr collection).

Good he is looking at your past (and forward) bloods (and urines) thoroughly, especially given all your prior blips seen in bloods and urines. We will have to leave it to him to suss which bits are the most telling. Your hgb remains lowish/blips in hct, platelets, and clotting (aPTT) seen. He will follow this.

Looks like your most current (Feb 7?) GFR is 18 and Creatinine is 247?†

Your A1C does not seem outrageous, your potassium seems within normal limits. Rising ureas/bicarbonate/anion gap balances are all things he will follow.

Will be most interesting to see what shows, and what he is learning about you from the culmination of all this testing/data and the CAT scan at your next appointment with him.

When is your next pre-booked appointment with him?? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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 Tig. Yes, numbers are all starting to make a bit more sense than they did when I began the Epclusa and both of you would ask for my numbers.

Canuck: "Also wondered why it takes until Mar 4 to get a CAT scan done?, but, regardless, when you do have that CAT scan done on Mar 4, has the nephrologist already given you another pre-booked appointment to go and see him, so you two can suss the CAT results and see what his plan for you is? confuse C."

Just the way things seem to work but yes, I have an appointment with him 4 days after the CT scan at which point I will find out what lovely procedures are likely next in store for me :) *fingers crossed, none but no better to assume the best these days LOL


__________________

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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Goodness! Youíve got a lot of things going on. Iím impressed by your commitment to getting your health back. Youíre doing the right thing by educating yourself and finding out whatís going on. Iím interested in your updates and agree that your GFR is a primary concern. Until you get this all stabilized you do whatever it takes to succeed!†

One day at a time



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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'The statement that the white globs in your urine stream were clumps of white blood cells seems peculiar. Is that your doctors description of puss blobs in your urine?'

-Meaning he is investigating it to see exactly what it is before prescribing antibiotics or whatever is needed to get rid of it, once he is absolutely sure what it is.

-Dont hold me to it but I thought he meant that those were white blood cells fighting an infection - think that is what he said or might have just been talking aloud until he knows exactly what they are?!


( deleted as rest of the post was repetitive info from above posts)


When I left, on the way out downstairs to give blood and urine he asked me if I had enough urine to give him a quick sample as well, which I did.






-- Edited by HepCGtype2 on Sunday 11th of February 2018 12:49:06 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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I was also given a package to do a 24 hour urine collection but I wasn't told what this one was for specifically but the nurse that drew my blood told me that I could do it in a few days - No specific rush, etc.

All it says at the bottom of the sheet with it, is this.

If you are having a 24hr urine test for 5-HIAA please avoid eating AVOCADOs ( and other things i dont eat) for 2 days prior to collection. ( I just stopped eating Avocados yesterday, sadly)

If you are having the 24hr urine test for Cathecholamine Metanephrine V Ma restrice caffeine...24 hours beforehand, etc

If you are having the 24hr urine test for 17-Hydroxycorticistueriuds restrict all drugs for 72 hrs prior

If you are having the 24hr urine test for Hydroxyproline, a controlled diet free of gelatin, jams, ice creams and other foods I dont eat are to be eliminated at least 24 hours before collection


No idea off hand which test if the 4 this is for as I am just looking at the paper for it now



__________________

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 did a couple of urine tests when there on Friday but the Nephrologist said it would take a few days to get the results.
I have some results back already and always do within 1-2 hours but I believe one particular test he is waiting upon.
I did ask him if he should give me some antibiotics first, but he said no, he wanted to wait a few days for the test results to return.

My GFR result went back down to 17 from 19 and as I mentioned, ON THE TEST DONE EARLIER THIS WEEK, NOT THE ONE DONE FRIDAY, the creatinine from 220 to 260 but he said those numbers were minor and is less focused on the GFR than the creatinine, I believe.
He explained there is such a small difference from 220-260 that the concern only comes in if it doubles by the 100, etc and that it will fluctuate but generally, overall he seemed pleased with how its progressing downwards.

Yes, he wants me to do the 24 hour BP result test. He also suggested I do daily BP tests.
When I was in emergency they all told me that my BP results were better than theirs and are usually pretty normal but i didnt catch the number he said it was on Friday but i think it was just slightly elevated?
Guess i need to buy an at home BP thingy and figure out BP daily results next :(

Now, I have just spent all of yesterday looking up what i should and shouldnt be eating and wouldnt you know it, EVERYTHING I have been eating since XMas has been bad for me LOL

Acocado
Tomato Based sauces
Eggs
Dark leafy lettuce
Melon
and the list goes on.

Everything i am learning about a low potassium diet seems to contradict everything I once believed was healthy :(
www.kidney.org/atoz/content/potassium

I assumed that when the doctor said "we will get rid of it" he was saying we will get rid of whatever was going on. i had assumed it was a Bladder Infection because the Urologist gave me Macrobid but the Nephroligist wasn't convinced and thought it might be a kidney infection but wont prescribe what is needed until he knows for sure whats going on.
But yes, his main interest at this point is to find out what is wrong and to deal with it, hence the tests.

Here you go-test results so far but I think there are more to come?! You might be sorry you asked :)

Urinalysis, Routine

Spec Gravity
VALUE
1.010
Normal

pH 5.5 Normal

Protein 1.0g/L Abnormal, General Reference Range - Negative

Urobillinogen 3.2 mol/L Normal

image.ibb.co/bLaKMS/Urine.png



Antinuclear Antibody (ANA) Screen:
Negative
MDSS Comment:
All antibody levels for systemic autoimmune disease are below pre-established cutoffs. MDSS outputs of "Negative" or "No Association" do not rule out autoimmune disease. Patients with Rheumatoid Arthritis may result in an SLE association from MDSS, thus MDSS associations from patients with RA should be interpreted with caution.


Phosphate, Plasma
Phosphate 1.22 mol/L Normal


Activated Partial Thromboplastin Time (aPTT)
Activated Partial Thromboplastin Time (aPTT) 20.6s Abnormal (23-30 IS Normal)

Calcium Total, Plasma
Calcium 2.53 mol/L Normal


Magnesium, Plasma
Magnesium 0.83 mol/L Normal

COMPLETE BLOOD COUNT

Hemoglobin (Hb) 99 g/L Abnormal (120-160 is Normal)

White Blood Cells (WBC) 9.5 X 10e9/L Normal

Platelet (Pit) 454 x 10e9/L Abnormal (150-400 is Normal)

Mean Platelet Volume (MPV) 3.35 x 10e12/L Abnormal (3.9-5.6 is Normal)

Hematocrit (Hct) 0.299 L/L Abnormal (0.33 - 0.47 is Normal)

Mean Cell Volume (MCV) 89.1fl Normal

Mean Cell Hemoglobin (MCH) 29.5 pg Normal

Mean Cell Hemoglobin Concentration (MCHC) 331 g/L Normal

Red Blood Cell Distribution Width (RDW) 13.5 %CV Normal

Neutrophils 6.32 x 10e9/L Normal

Lymphocytes 2.43 x 10e9/L Normal

Monocytes 0.46 x 10e9/L Normal

Eosinophils 0.26 x 10e9/L Normal

Basophils 0.05x 10e9/L Normal


†Bicarbonate, Plasma†
Bicarbonate 19 mol/L Abnormal (23-29 is Normal)


Prothrombin Time and International Normalized Ratio (PT/INR)†
Protime 11.8s Normal

International Normalized Ratio (INR) 1.00 Normal



Electrolytes, Creatinine, Profile

Sodium 139 mol/L Normal

Potassium 4.8 mol/L Normal (3.2-5 is considered Normal so I seem high on that)

Chloride 108 mol/L Normal

Creatinine 247 umol/L Abnormal (50-98 is Normal-but we know that is is high but getting better)

Estimated Glomerular Filtration Rate (GFR) 18 mL/min/1.73m2 Abnormal General Reference Range >=60

Estimated Glomerular Filtration Rate (GFR) (African Descent) 21 mL/min/1.73m2 Abnormal


Urea, Plasma
Ureal Plasma 10.8 mol/L Abnormal (3-7 Normal )


Hemoglobin A1c
Hemoglobin (Hb) A1C 0.066 Abnormal (0.04-0.06 is Normal)

This means my Diabetes rate at present is 6.6 which does not surprise me at all.
I knew i was a bit higher than normal - as its a 3 month test and I knew i blew it over Xmas and Jan - so having to get back on trackbut can always feel when its up and told him I thought that it was, hence the test.

In the US, 6.5 is considered Diabetic, so I now will get that down again.

The last 3 month test in November i was average, so i cant do Xmas goodies in the future :(

†Anti-Neutrophil Cytoplasmic Antibody (ANCA)†
image.ibb.co/jqCzMS/Screen_Shot_2018_02_11_at_8_34_13_AM.png



Anion Gap

Sodium 139 mol/L Normal
Bicarbonate 19 mol/L Abnormal (23-29 is normal)
Chloride 108 mol/L Normal
Anion Gap 12 mol/L Abnormal (5-11 is normal)





-- Edited by HepCGtype2 on Sunday 11th of February 2018 08:54:02 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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I would be interested in knowing what a UA C&S shows, too. The statement that the white globs in your urine stream were clumps of white blood cells seems peculiar. Is that your doctorís description of puss blobs in your urine? That certainly raises my curiosity. If thereís an active bacterial infection in that lone kidney, it seems prudent to treat it. I would seek an explanation forthwith. If thereís a bug percolating or persisting, you need it gone!†



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

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So, please do let me know if your have (or get) any urine C&S lab results. I would be interested to know the dates and results of any C&S's you have had done since Nov.

Is there any current GFR results, since your last one of 19? (Good you relayed your most current creatinine of 260 from a couple days ago).

Can you post all the blood tests they did 2 days ago?†

Worth it to do the 24 hour BP monitering he suggested, so they can know what your BP is doing.

When you two were discussing Macrobid and "possible" infection ... what did he mean when he relayed to you ... "we will get rid of it". Is he saying you DO or do NOT have a kidney infection?? Does this mean he is considering putting you back on some form of antibiotic?? Without the benefit of documented C&S's (showing infection, anywhere in the whole of your urinary tract - kidney or bladder) - is he indicating then that he is already sure of infecton in your kidney??†

Good he simplified any diet restrictions for you.

When any results do start showing up (when you have access to them), it would be good to know ... (1) last bloods done/GFR/hgb, (2) any urine C&S results, and (3) if there is any "radiologists report" (radiologists impression/interpretation) of the imaging you had done during the operative procedure.

I too wondered about the wisdom of being put on Macrobid. Same as I am wondering about this absence of urine C&S feedback.

Also wondered why it takes until Mar 4 to get a CAT scan done?, but, regardless, when you do have that CAT scan done on Mar 4, has the nephrologist already given you another pre-booked appointment to go and see him, so you two can suss the CAT results and see what his plan for you is?†confuse†C.†



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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One thing I am learning, is that no matter how strongly I believe I know instinctively what's wrong with me, I can almost promise you that i get it wrong every time. Meaning, I dont have a clue and must leave it to the doctors :)


Seems i do not have a bladder infection but an infection he believes of the Kidney. When asked how, he said that with the kidney stent, open wound, an infection can get onto the skin and inside that way.
From Nov - Jan, I only had to have the urine bag changed every 10 days. About 3 weeks before this recent procedure, I noticed what appeared to be cloudy white flakes that would float down the tube and attach to the sides.
I had asked several nurses, as well as my new family doctor and each one said not to concern myself, that it was either stone activity or flakes of skin ( flakes of skin from inside? Had me wondering)

As soon as I had the procedure, and was given the Macrobid, it cleared up whilst on the antibiotics, but once finished, came back again.
That suggested to my Kidney doctor today that it was not a Bladder infection, despite the burning while urinating but the Kidney itself infected.
I felt the same thing 1+ years ago when I was misdiagnosed, when I still had 2 kidneys so we took urine tests to see.
He told me that in no uncertain terms, in future was i to let any doctor or pharmacist give me any medication without them being reminded that i have a low functioning kidney and not to assume they will remember my issues.
He didnt come out and say it exactly but I grasped that he wasn't happy that the Urologist had prescribed Macrobid without taking this into consideration and/or investigating further.
So he said that the "white stuff" would be white blood cells fighting the infection but that we will get rid of it.

I had blood taken a few days ago and my Creatinine had gone from 220 up to 260 which he said after a procedure and/or considering the circumstances is to be expected but once i am sorted out, it will lower again.
Today they took all sorts of blood tests, even testing me for Lupus but I see that came up negative.

He has put in a request to see the CT scan himself. He made it clear that he did want to review it himself. I dont think he wants to leave my case fully with others without his input and i do so far trust this doctor far more than any of the others.

My potassium was a bit high again. Not critically but to be watched.
I told him that i was finding it a bit frustrating for I was being given so many different diet directions that I wasn't really sure exactly what I should be eating as everyone said it depended on what kind of stone I had, so he pointed me towards the National Kidney Foundations Low POTASSIUM diet and said that is the only one I needed to follow.
Of course, at the top of the list for highest Potassium was Avocados which I have been eating daily since Xmas....LOL Ooops :) Bye Bye Avocado :)
With the higher potassium comes slightly higher blood pressure.
Wants me to wear a machine for 24 hours that monitors ones BP and then tells them exactly whats going on. Wants to perhaps prescribe one medication that will be safe for me that will keep that down while we sort all of this out.

Otherwise, I feel great.
Asked him seriously if I need to prepare for any "bad news" in the near future.
Told me no but that I do have a 30% chance of one day needing dialysis, but not for several years yet but wants to do whatever is necessary to hold that off, if not forever, at least as long as possible.
Said that if I were 80 or 90, wouldn't give it another thought, that I would die of something else before that time but at my age, I have to be aware that I have a 30% chance of this happening.
Kind of gave him the sneaky eye and said Oh really? You're just trying to brace that with good news, so tell me the truth, should i be preparing myself sooner but he said no....but lets get this kidney working as best we can.

Posted the only report that has so far been uploaded from that day.
Said not to focus on where the stones went to or how they disappeared, but accept that they have but let's focus instead on keeping the kidney healthy.
Said he might decide to biopsy my kidney at some point, to see if there is any swelling but that he didnt think there would be......and for now just left it at that.

As much as I dislike this Nephrostomy bag, at least i can see what is taking place. Will be happy when its finally removed but with that will come a bit of insecurity not being able to if there is anything wrong, such as these white flakes/white blood cells fighting the infection, etc.

Just another day as of late it seems :)



-- Edited by HepCGtype2 on Friday 9th of February 2018 04:57:52 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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Good to hear back from ya!

ah ha, very good to know you STILL have the original bypass equipment in situ, as well as the new equipment - man yer sure packing girl! All to a well-intentioned end though.

You and me both, looking forward to this appointment with the nephro guy tomorrow, to see what he has to say, and what the plan is.†

Good to the CT scan (I thought that was going to happen prior to your appointment with the nephro guy tomorrow), but you say now the CT is not until Mar 4?

Nice you posted the actual "operative" report, good info. I am thinking you might also request the "radiologists" report from that same day/same procedure - the imaging they did that day may also have a radiologists report (that may or may not have been done, in addition), if so, the radiologists report may also state their own info, impressions or observations about the look of your kidneys and water works (not just the procedural equipment placement).

There are no recent urine sample results in your labs? to see it they have been checking for C&S's, or, have any new bloods been done - GFR's, creatinines, hgb, no further recent general bloods etc?

It is possibe for stones, gravel, calculi to dissolve themselves, depending.

Good you are trying to strain the urine to see if anything can be found, but you can also view for any very large obvious things via the bag, viewing and straining are best (although straining may be a useless task if no calculi is there!). Could be, the imaging and exam of the day of the procedure was correct, no large calculi found, CT may also show interesting things or perhaps confirm some things. It could be your "old" imaging WAS also correct (back then) when they saw stones, and then did not see stones - it may be true that the calculi "come and go".†

Good it is a "little less" uncomfortable (your equipment), still, all of this has been a very unwanted, disruptive, stressing turn of events, all of it - you could have well done without having to go through this, any of it.

Hang in there, one way or the other, they will get closer to figuring out what has happened, what is happening and what they can do about it.†smile†C.



-- Edited by Canuck on Thursday 8th of February 2018 08:48:32 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 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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LOL no, i wouldnt have actually pulled that string out although it was very tempting.

2 weeks later and its far less annoying but I dont see him until March 4th, for a CT scan and then I suppose he will let me know.

Funnily enough he just uploaded his notes from that day and it seems they never saw any stones, anywhere inside :)
LOL
I am beyond trying to make sense of what's taking place.
At one point he suggests that because i am taking Potassium Nitrate, that maybe the stone has disintegrated.
hahaha but I told him 4x before the operation that all the nephrologists had said i could not take Potassium Nitrate and I refused it.
The Nephrologists told me that I was right for not having done so.

I still have the original Nephrostomy bag attached to my leg though.
Have had that since Nov 4th.
Thought I would have lost it that day of the operation but no, the lovely thing is still with me.

I see the Nephrologist tomorow and hope he is able to clear some of this up.

"If it is still present, then she will likely need another trial of shockwave lithotripsy using contrast dye or flexible ureteroscopy. The other possibility is that she had dissolved the stone. Nevertheless, the CT scan will be helpful."

WTF knows :)

Still think I might have a slight UTI as there is slight burning and lower back flank pain.

Again, will ask the Kidney doc tomorrow.† Beyond me at this point, all of it† †:)

Oh, I did try straining urine several times to see if i could find any stones but nothing seems to be showing up.

It's possible I need a proper "medical strainer" and will look into one tomorrow.

-- Edited by HepCGtype2 on Thursday 8th of February 2018 03:39:04 PM

This was the Urologists actual note just submitted:

The patient was brought to the Operating Theatre and the surgical checklist was performed. The patient was given a general anesthetic and intubated with an LMA. Preoperative antibiotics were administered. The patient was then prepped and draped in the usual sterile dorsal lithotomy fashion. We began by inserting a rigid cystoscope transurethrally. The bladder was entered and examined. There was obvious abnormalities seen. The right ureteric orifice was identified and cannulated with a 5-French open-ended ureteric catheter. Through the catheter, a straight guidewire was advanced into the kidney. The proximal end was seen to curl within the upper pole calix. A nephrostomy tube was seen on x-ray. If we are unable to identify a radio-opacity in keeping with the stone. The cystoscope and ureteric catheter were then removed. We then inserted a semi-rigid ureteroscope using the wire as guidance. We entered the ureter and traversed all the way up to the ureteropelvic junction. There were no stones identified along the entire course of the ureter. We were able to see nephrostomy tube curled within the renal pelvis, as well as the wire in the upper pole. Again, we did not identify any stones along the ureter or within our limited view of the renal pelvis. We then performed a retrograde pyelogram through the ureteroscope and did not identify any filling defects in keeping with a stone. The patient has been on POTASSIUM CITRATE and it is possible that if this is uric acid stone that it may have dissolved. At this point, we removed the ureteroscope and proceeded with ureteric stent insertion. A 6-French multilength ureteric stent was placed over the guidewire using Seldinger technique. The proximal end was seen to curl within the renal pelvis under fluoroscopy. The distal end was seen to curl within the bladder. This was left in with a tether. The wire was removed. Fluoroscopic images were saved. The patient was awoken from general anesthetic and transferred to the Recovery Room in stable condition. She will be discharged home with the ureteric catheter on guide wire as well as her nephrostomy tube. We will arrange for a noncontrast CT to see if we can visualize the stone. If it is still present, then she will likely need another trial of shockwave lithotripsy using contrast dye or flexible ureteroscopy. The other possibility is that she had dissolved the stone. Nevertheless, the CT scan will be helpful.


Seems to be a slightly comical repeat of where I was a year ago when this all began.
One day a scan picked up hundreds of stones, apparently.
A week later scanned again and the Urologist (different one) was stumped.
Couldn't figure out where they all went to for i was not in pain either and declared me fine and i never heard from doctors again about any of it, until emergency a year later



-- Edited by HepCGtype2 on Thursday 8th of February 2018 03:41:25 PM



-- Edited by HepCGtype2 on Thursday 8th of February 2018 03:43:01 PM



-- Edited by HepCGtype2 on Thursday 8th of February 2018 03:46:08 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.

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