Hep C Discussion Forum

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

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 could’ve 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. It’s 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 aren’t 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.

 

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

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.  

I sure hope things start smoothing out for you both

A  

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

I’m sorry to hear about your partner. I hope you’ll 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 we’ll try! Pass on our collective “Get Well Soon”

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

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. :)

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.

 

Goodness! You’ve got a lot of things going on. I’m impressed by your commitment to getting your health back. You’re doing the right thing by educating yourself and finding out what’s going on. I’m 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

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

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 doctor’s description of puss blobs in your urine? That certainly raises my curiosity. If there’s an active bacterial infection in that lone kidney, it seems prudent to treat it. I would seek an explanation forthwith. If there’s a bug percolating or persisting, you need it gone! 

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

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

Well that went well LOL

Have been trying to reach this doctors office since last Friday to no avail.
Did so at 10:15am this morning but the only appointment i could get had to take place in 40 mins but i could not be there in time, otherwise he's out of the office for 2 more weeks .
Was told by the secretary that I have to keep the stent in, even though i explained that it feels as if it is expelling itself and have flank pain but was told until they have a CT scan and I assume another 2 weeks after that, will they be able to pull this horrid little thing out :)

In the end, i would rather do what's best for my kidney so I am going along with this but everything i have read on the web suggests otherwise.

That's where it sits for now and will let you know how the blood work goes next week.


One thing I will add that i find interesting and believe its a result of the HEP C eradication, that I no longer have any IBS like issues.
That all developed around the same time as the kidney stones, 1.5 years ago but went away the moment I took Epclusa.
It came back a bit half way through the full course of treatment but nowhere near as badly as it had been earlier.

I was almost sorry to end Epclusa believing that with it, the IBS problems might come back but since that time, all seems pretty normal in that department, as well as the energy levels went back to normal.

 

 

Just remember, its in the Ureter, not the Urethra!

 

LOL i am not the most presicse with language   :)

-- Edited by HepCGtype2 on Wednesday 31st of January 2018 10:37:39 AM

Yet to be told anything as to what they found. Was just told to see him in 2-3 weeks after a CT scan but phoning today as i want to see him ASAP bout this string/stent annyong device :)

Only "report" I see on file so far is this test which doesn't tell me what they found.
*Intraoperative fluoroscopy has been performed during ureteroscopy. Total fluoroscopy time was 1.93 seconds.*

I was never told they were installing a stent but had to look up on the web why I had a tiny string hanging down. Found this. (info at bottom of post)

This will sound grotesque but any female that used tampons during her periods, to suddenly have the tampon start to expel itself created a very uncomfortable position and one would have to manually rid themselves of it and replace it with a new one, placed further up, immediately.
That's what this thing feels like but 24/7.
I believe it might be placed inside to help avoid stones from scarring the walls of the Urethra, and to hold it open wider, allowing for clear drainage.

I wasn't told about this stent and was left to figure out i had one on my own.
In any event I wanted to rip it out several days ago but wasn't 100% sure if it was partly aggravated by the bladder infection or not.
I have a bit of a problem standing up straight. Takes a few seconds due to a dull thud in the lower back (kidney I assume) and a bit of a problem sitting down so hope to get in ASAP and see if this stent is really necessary any longer.
I am guessing that it was to facilitate any stone passage after it was broken up but i dont see to be passing any more but he's the doctor and would know better than I what to expect.

Macrobid - 100mg for 10 days, 1 in the morning and 1 at night...Understand it is the most effective for bladder infections. I told him that I thought i had developed one about 3 weeks prior to this surgery but he said its prescribed anyhow for the surgery alone will cause such infections.
So only 3 days left of these pills, including today but I feel as if there has been some improvement the past 2 but not enough that i can imagine 100% clearing by the 10th. Maybe i will need a second course. We shall see.

Am pretty sure now, remembering this feeling that I had such an infection about a year ago when I first started to complain to my family doctor and then a Urologist about a burning sensation when urinating but it went away and I guess it never showed up in any culture tests, nor appeared to when in Emergency this past Nov.
Understand now that its increasingly common during/after Menopause which fits the timeline correctly as i only went though that 2 years ago, rather late in life.

Have been drinking enough water that i should be floating by now :)

The first couple of days after the procedure, I was thirsty 24/7 and although that has slowed down a bit to a more natural rate, still thirsty a lot but not diabetic thirsty, just normally thirsty. I dont recall being so thirsty in years.
I dont think my "water gauge" was working correctly before all of this took place but it seems to be doing far better now. Perhaps a sign of a better working system overall? :)

More blood tests next Monday and next Friday, the first appointment with the Nephrologist post surgery. Hopefully we will now see some improvement??!!

But besides wanting to rip this thing out of me...lol...am feeling pretty good otherwise. :)






www.ncbi.nlm.nih.gov/pubmed/25541339
PURPOSE:
Ureteral stents are manufactured with an extraction string tethered to the distal end, which facilitates removal after urological surgery. However, the string may allow for stent dislodgment. We report the stent dislodgment rate in a multi-institutional series.

While some patients with stents have minimal discomfort related to them, other patients will report symptoms that can range from being annoying to being severe enough that the stent has to be removed. These symptoms can include:
Sensation of needing to urinate
Seeing blood in the urine
Bladder spasms
Burning sensation during urination
Pain in the back during urination or when moving
Pain in the bladder

How long can a stent stay in?
In general, most stents should only remain in for no longer than 3 or so months. If a stent is left in too long, it can form stones directly on it, making removal difficult. 

I can understand the depressive nature of such information, but it’s better to know why and how to make changes that lead to improvements. You have a reason for that puny GFR and you are also doing something about it. Don’t get discouraged, that’s very important. Let all of this ignite the flame that lights the way out! You’re almost there and getting better all the time... 

Thanks Tig. Will do.

Good points made Canuck, about GFR rates = not knowing them earlier (although I did just get a CDs worth of medical tests by DVD I will soon review)

Unfortunately I always believed my body told me what was wrong.
I have come to change that by saying my body will tell me when something is wrong but it's usually something different than I believe it to be and no longer can I put my trust in doctors and have had to start learning advocating for myself, which the few of you here have been doing for yourselves these past many years.
I'm just at the start of learning.

All I can tell you is that about 1-2 years ago i complained of blood in the urine and what I felt vaguely felt like Kidney stones. I wasn't positive IF only because the episodes 18 years earlier were dramatically more painful so I mistakenly assumed ANY kidney stone would be equally so.
That mistake allowed me to pressure the family doctor more.
For when I was complaining of the blood, urination burning and side pain, that was when the cervical cancer diagnosis came out of the blue so who the hell was worried about silly little kidney stones any longer? :)
Later was sent to a Urologist who claimed they had all disappeared and that I didnt have anything to concern myself with and at no point in time was I made aware I must be, for by then the feelings of stones had passed.

A couple of week before I had this recent Ureteroscopy, I started feeling a pain while urinating, that I remembered having felt back at that time I complained to the doctor about blood in the urine, etc.
It appears now, just days ago after something TIG said, that its not stone activity as I thought but more likely, a bladder infection.
They gave me Macrobid, an antibiotic only for such infections, as they do any patient undergoing a Ureteroscopy. I know wonder if I had one all along these last 2 years which on its own I understand can cause great kidney damage.
I think there were many oversights and mistakes made and hard to pin it down to one event, or one cause but the end result is the same.


Other than that, I survived the ordeal.
Damn those drugs are good.
They couldn't figure out why I hopped out of the bed in recovery 2 mins after I arrived and was functioning exceptionally well. A few patients were a bit jealous at how quickly I bounced back.
I sauntered out of there quite proud of how easy it all went although my husband snickered and told me I was as high as kite.
I started to feel it many hours later, sadly :(

My poor lil lady parts are not so happy though.
A bit uncomfortable to sit down - and I couldn't understand why the first 48 hours I could barely make it to the Loo.
Then I discovered a string. Pretty sure there is a string there.
If so it means that after the OP they put a stent in that urethra tube to hold it open, allow stones to pass...Not sure how long my body wants this thing inside but was told to see them in 2-3 weeks.

Will take new blood tests late next week and have an appt with the Nephrology specialist the following week so at least now I know to be focusing on the GFR more so than the Createntine....and hopefully I shall have a better set of numbers by then. *fingers crossed*

Hope you are all doing well??!
Have been a bit too self absorbed in all of this to pay much attention outside of myself but truly hope you are all doing well!! :)

2-less,

GFR can just decline with age, period - that happens. There a lot of aging folk around with aging kidneys that do not sport a bristling GFR 90 (that they may have in their youth), and, if the kidneys are doing a "good enough" job, even if they are somewhat dysfunctional, so be it for a lot of mature folk. (Who knows what your kidneys were functioning like when you were 30, 40 or 50 years old - we are only working off the oldest known GFR/creatinines you have records of, and the oldest one only goes back to into summer of 2016. Your GFR decline could have actually started quite some time ago, and/or fluctuated/chnaged over time, we wouldn't know. Repeated attacks and injuries to kidneys (depending on cause) can be withstood by kidneys, they can have an amazing resilence to repeated insults, and can try to repair themselves to degrees, much like the forgivness we hope to see in our livers once the offending hep virus is removed from the equation. 

Technically, if you can go strictly "only" by "numbers", that some authorities "list" for (MILD) kidney dysfunction that is between 60 and 89.

The next level of (MILD to Moderate) kidney dysfunction is between 45 and 59. 

Your earliest Junish 2016 GFR at 44 had just barely reached the level of (MODERATE to Severe) kidney dysfunction, between 30 to 44.

At that time period your lady doc was correct to refer you to the urologist based on your hx and kidney function.

Your Sep GFR at 33 still had you remaining within the (MODERATE to Severe) level - 30 to 44.

Your Oct GFR at 24 showed a further decline which put you in the (SEVERE) level - 15 to 29. 

At that time period your hep doc was correct to be pushing you to have further labs.

We have had a fair number of people here approach DAA treatment who have lack lustre kidney function. DAA use is not necessarily contraindicated when someone has lack lustre kidney function, as long as they are followed attentively. There may be many reasons why your kidney function has declined from your prior 44 GFR while on treatment, from obstruction to the prior additional ace inhibitor use, to who knows what! You may have many (unknown to us) reasons for declining kidney function, as you were already showing a GFR 44 in 2016, and perhaps you were already having a much earlier/longer kidney performance decline prior to 2016.

When we are operating on "sub-normal" levels, what is "adequate" function for one person, can be a serious impairment for another. There are a lot of chronic kidney disease people walking around out there, in various stages, some quite markedly so, and not all of them have to have dialysis.

I am hoping after the sussing is carried out tomorrow, they can start to get to the bottom of this function problem, and undo as much of it as they can. 

I would take GFR 19 over 15 any day! I would like to see you back to at least the 30 to 44 level again asap. 

It will be a good forward day tomorrow, and you will have a lovely nap out of it too. Your urethra will hold up fine! It's far more elastic than you might think! Hope they have fruitful hunting for an offending object!  C.

 

-- Edited by Canuck on Tuesday 23rd of January 2018 04:58:48 PM

Your GFR is still very low, but it’s up from 15, which is good because it’s going the right direction. It’s nice to see your creatinine dropping too. You dropped from a 44 GFR pre treatment to 15 and now to 19. 90+ is normal for most, but diabetes, your CKD and renal function determine your GFR, among other things. As function diminishes, so does the GFR. Things just aren’t filtering right. Considering what you are going through, it’s good to see it climbing. With your level of CKD, the GFR could be at a stage the doctors are okay with. Since you’re dealing with liver and kidney treatment at the same time, your lab parameters are being monitored closely. It’s a balancing act. Just keep doing what’s best for all your parts and pieces! Tell the doctors that you want to be part of the decision making process. That way they know you’re interested. There are a lot of patients that aren‘t.

This is a very important time for you and I’m glad that you are participating in your care. It makes a big difference. You’ll be a new person soon! Just keep fighting...

Good luck tomorrow!

Had blood taken today :)

That GFR is now 19 - no idea what sort of number i am aiming for though...

 

Creatinine has dropped again to 237 so will drop lower, and was at 280 a month ago


image.ibb.co/dpexBw/Screen_Shot_2018_01_22_at_8_30_48_PM.png

-- Edited by HepCGtype2 on Monday 22nd of January 2018 08:34:56 PM

2-less,

Ya, we don't really know the root cause (or perhaps all of the contributory causes) of how you arrived at kidney dysfunction, whether it was/is being caused by something like being a diabetic or having high BP, or issues associated with parathyroid regulation, or many other influences that can seriiously mess with your kidney function, such as simple obstructions, thus why I was asking how long you might have had a hx of hypertension. Good to know you think you did not have a history of hypertension.

The A1C is kinda based on a long cycle, for many people who get this test, it is not often done more more frequently than every 3 months, so if you had one in Nov, maybe they will do one now, maybe not, you did have a blood sugar finger prick check since then, and your blood sugars can be checked periodically via other methods than the A1C. You can also be logging your own BS finger prick tests at home too, like you used to do?

Plain ole water does body good, no matter what your "stones" consist of, no matter what is at the root of causing them to form, it is always a good idea to keep your water works well flushed, to be passing NOT-concentrated urine anytime. Number one easy mistake in people with stones is not keeping their urine NOT-concentrated. Yup, cranberry juice is taken by many and sufficient daily water, and lots of "close to water" drinks, to keep your urine not concentrated. Good practise for anyone with anything urinary, from UTI to simple cystitis to packing hardware (catheters, etc.)

I only brought up the R&M and C&S (they may have already been doing some of these, I don't know) because it is a simply an easy thing to do, may not show anything at all, but when you are packing hardward and have vague urinary symptom changes, it's certainly not unreasonable to be checking R&M and C&S. Such an easy thing to do (at least from the bag) the other route would have to be collected normally. I was just thinking bonus if they also checked calculi type, if calculi presented itself in any sample. It is also an easy way to check for urinary ph, traces of blood, protein/albumin and other things too.

The urine sampling is really more of a safety kind of thing - as far as safety I am more concerned in your creatinines/GFR's right now. Increased BP does not "seem" to be an issue in you, and perhaps you have not/never did/do not have any huge upswings in blood sugars (I don't know) but you can always keep an eye (a log) on your own bloods sugars as well with home fingerpricks. 

Very glad you are getting that CD and will see what notes/labs/creatinines, etc. are in there.

Ya, hard to say exactly what a doc's thinking is, when they put us on "prophylactic" meds (preventative meds), it can seem mysterious to us, when we do not think we have obvious things for which would justify being put on "statins" when we don't really see any marked blood cholesterol weirdness, or being put on ace inhibitors when we don't think we have a hi BP, or being put on metformin when we don't really feel we are diabetic! But sometimes there is method to their madness, and reasons. This GI exam or "scope" she wanted to do, maybe it was partly for reasons of looking for esophogeal varices, who knows! Varices are something they look for in hepatitis.

Don't beat yourself up, and don't feel stupid, none of us are doctors!, we can't possibly be expected to figure everything out, we can only do and figure things out the best we can, as we go along, and that is just exactly what you are doing right now. So good on you, keep slogging. Tues will be a good day.  C. 

Thanks Tig for the info on R+M and C+S and will do so on Monday, get that tested.

Yes I do drink a ton of water but admittedly did add to that over Xmas with some pop and/or egg nog hoping that at least adding to it would be fine and never cutting back on water to make way for it.
Will pick up some Cranberry juice as well. Whatever it was has decreased by about 90% - so it might have been a reaction to stuff over Xmas.

It was brutally cold here during Dec and i made a few easy meat stews and meat chilis. Funnily enough i am not much of a meat eater but went on a binge of it.
Now i read in kidney groups that it's the worst thing you can do, eat red meats LOL

You have to laugh at it all.
Sadly :)

I sincerely hope that you Canuck, and Tig, and others know how valuable your advice here has been.

I think it's rather obvious to suggest that I have become really disheartened with doctors and yet just now, again you mention a UTI that I had not thought of, but as soon as you did, that tweaked and I believe you are likely correct.
Trying to make an appointment with the new family doctor on Monday, before the OP on Tuesday due to your comment.

I did develop very slight burning when urinating but an awareness that it was there, even in-between urinating about 4 weeks ago.
Perhaps around the time this urine first started to become a bit cloudy and my line a bit clogged.
At the time i instinctively felt perhaps my sugars had gone up over Xmas and they had a bit but I wasn't overly surprised.
I had lost 25 pounds being ill, had been permanently hungry those 3 months so I did enjoy my Xmas goodies this year but it appears maybe my body couldn't handle it well.
The realization perhaps that i can never have fun again with food is sinking in and that it's going to be an utter bore from here on in :)

When that happened, I did reach for some probiotics and took a couple over a weeks time and cut right down on anything I imagined might be heightening my sugars.
That "burning" sensation has gone down about 90% and i dont feel the need for Probiotics but still am aware that I am not 100% "perfect" there at the moment.
I thought it was perhaps the stones breaking down, causing that burning.
I dont remember ever having a UTI before, although I must have at some point in time, if not years ago.
But I have felt that something was wrong, instinctively and that this clogging was more than just stone fragments or skin.
Think you have hit the nail on the head!!!

I feel like such a dummy but again, all of this is either new to me and/or so much at once its hard to remain focused upon one issue long enough to remember before the 2nd, 3rd, and 4th pop up, causing me to forget about the 1st :)
Up until this point, I think I have only had antibiotics 2 or maybe 3x in my life. I just never needed doctors and was perfectly healthy, or so I thought.

Going to go in again on Monday if i can and have them test me for a UTI.
Reading up on this I understand it can also cause Kidney damage if left untreated.
When I had the feeling of kidney stones 1.5 years ago and blood in the urine i did mention to my family doc about the burning but i dont know if she tested me but it went away.
This is the first time I have felt it since but both times seem to coincide with stones = so I was thinking it was stone activity.
Will let you know if you were right. :)

I will see if the family doctor will test the

I will ask them to do a R+M and a C+S from both sources of urine as well. ( What does R+M and C+S stand for though?)
I will also ask to have an uptodate A1C to see where the sugar numbers lay.

The quack doctor is presently sending me a CD with my medical history on it so as to give it to the new doc.
I will go through it if i can and see if there are any earlier tests that today I will recognize what they were looking for such as earlier Creatinine tests.

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

Yes, it was all very confusing.
The Urologist, 1.5 years ago laughed and told me I was his mystery patient as he was unable to understand what happened to all of the stones from a week earlier but the imaging that first showed hundreds, came from the same lab that apparently saw Cervical cancer.
I wonder in hindsight if that was the issue, that had HIS medical lab been the ones to have seen the hundreds of stones, it might have been taken more seriously.

This came only a week or so after I had been put through specialists, who rushed to do various tests on me to see about the Cervical cancer, believing that I was in bad shape.
Once it was discovered by them that I did not have it, one of them told me I was a very lucky woman and to go out and buy a lottery ticket that day.
So I had 2 people now telling me that i was both a mystery patient, buy a lottery ticket and without saying so, it seemed they thought that the initial family doctor was a quack.
I recall one even politely saying he had never run across a doctor that included such intensive notes. One could sense the grimace behind his words at the time :)

All the quack doctor wanted to do after all of that was give me a test whereby they send a scope/camera down your throat into your stomach, at which point I balked, no longer trusting her and wasn't in touch with her again but she always called or emailed me when I needed tests, yet i did not hear from her.

I apparently did pass stones in 1999 but i never saw them, or caught any. I was told to drink lots of water but was never questioned further.
The frequent urination? Having watched the bag since the stent, I am now more inclined to suggest that It wasnt that I was suddenly urinating more than I should, but perhaps I had been urinating less up until that point, so what seemed like a lot of urination, I think now was actually the correct amount I should have been doing earlier.

Much of this will be my fault for honestly, I was led to believe that the kidney stones in 1999 was a brief period from which I had recovered, and i forgot all about it, until a year ago when I vaguely felt a smidgen of the pain I had felt in 1999.
As soon as it arrives, I will see if i can find anything to do with tests showing creatinine levels.

Please understand that aside from the 1999 issue, I have always been very healthy and wasn't really one to see a doctor regularly. I didnt need to. I showed up to do yearly exams but everything always was fine.
Until 4-5 years ago with the sudden energy loss - and then a cascade of small things as mentioned earlier.


BP issues?
I dont recall ever being told I had BP issues.
Indeed doctors always told me my BP was fine.
I believe that my doctor felt it was a preventative action. I believe she said that high BP could be a result of Diabetes, hence put me on them to ward that off.
She was the doctor so I didnt question it. Assumed she knew what she was doing.

Diet = obviously a light diet is necessary + what I usually consume anyhow although I was badddd over Xmas :)
I did ask and in amongst that conversation was told that Pop was ok. Pepsi not the best, ginger ale better....at which point I sort of tuned out for I would have assumed both to be quite bad.
The diets are quite different from one another depending on the stone type so waiting for that but have read and learned far more online about what to eat, per type of stone, than any doctors pointed me towards.
But still have an upcoming appointment with a Nutritionist regarding a specific kidney diet after the OP.
To be honest, I am not putting my eggs in that basket but willing to listen. Just believe i can find better info online in groups for kidney disfunction, just as you guys here offer far more than the doctors will tell you but important to know the type first.


you guys should have been doctors - you guys offer potential reasons for this, or for that but i am finding out that with most generalized doctors, it seems you have to hand the direction they need to look at, on their laps directly otherwise you fall through the cracks :(

Ok, will be in touch with whatever i find out.
Hopefully in all of this they will also cure my inability to write short posts LOL

TIMELINE since you asked for the Gory details but again, as you know, I cannot write a short post :)


Had about 4-5 kidney stone attacks in 1999 that were excruciatingly painful.
My mother had just passed away only 2 days before the first one and I was in possession of her meds.
She had just been prescribed a bottle of 5 mg morphine which she had not needed and when I found myself at emergency, not knowing what it was, the doctor told me to hold on to those moriphone for i was going to need them.
He was right, it was THAT painful.

About 4 years ago I noticed a very marked decrease in energy and my brush seemed to suddenly be much fuller of hair than I felt it should be, although otherwise, one could not tell.
I was asked to give a urine sample and then told i needed Vitamin B +
I was just led to believe that I was going through menopause all explained by such but my energy never improved.
All around the same time, I started to have numerous dental problems out of the blue, despite having very healthy looking teeth and numerous skin cancers. The easy kind that are just burned off your skin ( i have freckles/fair) and all of this was just put down to aging, although I thought it was about 20 years early.

 

1.5 years ago I did mention to one doctor I felt i was urinating suddenly too often and they said it must be diabetes and was tested and showed that I was. Put on Metformin, etc but in hindsight I had had a huge desert and a tin of Pepsi the night before the test. Once aware of that, I stopped eating breads, pastas and my numbers went back down but they seemed to really go back to normal about the time I started Epclusa on a regular basis. Before that my numbers were about 5.2 in the morning and went higher if I ate bread, pasta, etc. By the time I was put on Epclusa, I felt I was no longer diabetic although I am aware over Xmas I might have pushed it a bit eating stuff i dont usually but I haven't eaten in 3 months through 2017 so wanted to enjoy some good food.

Then nothing until about a year + ago.
I had some pain and symptoms that were familiar, along with blood in my urine.
I wasn't convinced it was stones because it was not that painful, not as i remembered but went to the family doctor who tested my urine, along with a pap smear I was due, etc.
It had just been a couple of months at that point that I had been put on Metformin and the other pills.
Until that point i had not taken anything.



2 weeks later I went in for something really minor but when there was told I had Cervical cancer and it was apparent she thought it was metastatic.
You know the story there. Wrong records I assume but it took 6 weeks or so to have it confirmed that I did not have it and all was fine.
BUT, when I was first told, I didnt really believe it, for instinctively I did not feel any problem was there, but at the same time I almost remember a bit of relief, as if finally I had been proven right, for i knew something was off in my body, that I had been right, although it seemed no one was listening.
This took place about Sept/Oct 2016.
While waiting that 6 weeks, I was called in to her office one day and told to forget the cervical cancer diagnosis that she just discovered that i had Stage 3 Kidney disease and that was a bigger concern.
At which point I thought, she's a quack and waited for a brain cancer diagnosis next :)

All around the same time I started to develop problems going #2.
Could go for a few days without any action there.

Then sent to a Urologist along with a scan I had had elsewhere a week earlier and was told I had hundreds of Kidney stones, and was booked back a week later to start the process of getting rid of them.
Had a second scan before that appointment a week later and the doctor was mystified. Told me all the stones had disappeared in one week and he was unable to tell me why.
I asked him then if he could confirm that i had Stage 3 kidney disease and he looked at his files, told me he had not been sent any information stating such but from what he could see, No I was not stage 3.
I do know at that point both kidneys were working. That was looked into while i was in emergency this past Nov so it seems just in the last year, the left kidney shrank and stopped working.
So I believed at that point onwards that i did not have any kidney problems.

Got sick, out of the blue for several weeks in May. Couldn't keep any liquids or food down. Chills. Slight temp and thought it was the flu.
3-4 weeks later felt perfect again.
Became sick again, same symptoms through July.
Thought this was weird to have 2 flues so soon together but dont recall kidney stone pain.

Asked one doctor I know if I needed to go to emergency and he said no, i was not sick enough, as he assumed I had a flu.
Became better again after 3 or so weeks in June and was fine 3 weeks later.
I was too sick to go to my family doctor who told me I should go to emergency if i were too sick to come to her.
I was debating going on but then received a phone call that i was having a Colonoscopy in 4 days and was sort of half led to believe that this might be the answer for it seemed I might have a bowel obstruction?

Who the hell knew at this point but it seems that a doctor sort of intervened both times I might have gone to emergency otherwise.
But by that point was feeling great again so 5 days later went in for that procedure and 2 polyps were found.
Started the Epclusa about 2-3 days before that procedure and when I came out of it, I felt great, it was as if my body had had a reboot and suddenly I had more energy.

Then 30 days in the Liver nurse first noticed my Creatinine raising but wasn't alarmed at that point but did say she needed to see what it would be 30 days later.
It was at that point I discussed it in this thread and mentioned a few times i was concerned about it raising and asked the Nurse a few times IF i really should be on this medication if I had had earlier kidney problems.
Knowing what i do know, i would have insisted on a closer check of my kidneys at that time.......bt live and learn.......and you know the rest.

Where a lapse might be, legally, was that I had it tested in early October and it was high again.
A few days later I became ill for the 3rd time and could once again barely think of moving and she phoned me and asked me to come back in and repeat the blood test to see my Createntine.
I explained that i was way to sick again with what seemed like a flu and would do so as soon as i were able.
Personally, I think they failed me at that point in time again and should have realized some kidney impairment was taking place, that this was not a Flu, etc and I might have crawled there.

3 weeks passed by and i finally felt better and the first day I did I went into test my Creatinine and went home. 2 hours later they called me to tell me it was 798 and i had to go to emergency. That was Nov 4th and i had finished the Epclusa one week earlier.

1 day before that emergency, I did notice on my right hand nails that i suddenly had developed some ridges. I could suddenly feel them although they were not visible. I had just taken off some polish that had been on for a week so sometime in that week they must have formed.
I suspected kidney damage at that point - which helped to push me into the blood test sooner, rather than leave it even a few days longer but never in my wildest dreams did i realize i was in acute distress nor had lost one Kidney all together.

For 2 months I had the stent changed weekly but about 10 days ago I started to notice the tube getting cloudier about the 4th-5th day and instinctively went and had it changed sooner than the 7 days and they cleared the line with saline, into my kidney.
I expressed concern then. Why the change from 7 to 4 days, was my kidney still working well, etc? Nurse said urine colour was great, no problem, etc.
4 days later gut feeling told me I was not going to last 7 days this time either and went into have it changed again.
That was last Mon/Tues.
Again I was led to believe I might be overreacting when I showed concern and they said no all seemed fine.
Around the same day here or there I noticed something new on my nails. www.webmd.com/skin-problems-and-treatments/guide/muehrcke-lines-of-the-fingernails
It was at this time that i also developed an incredible itch under the bandage, for the first time and it was all red, the skin but the entry point was fine, so was written off to just my reacting to the dressing, skin tired of being covered up, glue, etc.
5 days later, earlier this week, had another bandage change and although still a bit itchy they said it had improved a lot due to medicated cream they put on the skin when changing it but all was looking good.

As the sign of ridges in my nails 2+ months ago happened when I went to emergency I went to a new family doctor several days ago and showed her this new set of lines but was told I needn't worry.

Not neurotic and if anything the opposite in that I react too slowly but I am not entirely comfortable at this present moment that my kidney function isn't quite as good as it was for 2 months after the stent was put in, or what was suddenly causing the line to get cloudy, along with the nail change as of 2 weeks ago.

I mention that only because it seems to me that change happens very quickly in my case and I dont trust that the doctors pick up on these changes and act accordingly.....so at present, a bit nervous about having this kidney stent removed.
Perhaps its irrational but I feel almost safer knowing that i can see what's taking place, which I won't be able to once the stone is removed, along with the stent.
Will i be producing more stones and not be able to tell, thereby placing this one remaining kidney in great distress again?

Have been watching this bag very closely the last 36 hours.
I dont feel i am filling it up quite as much as i was the past 2 months.
It's 600ml i suppose and I woudl fill it about 4-5x daily which was a good output.
Every night I would go to bed at 11pm with an empty bag and by 2-3am wake up aware that the bag was full and I needed to urinate ( I still urinate the old fashioned way as well..lol)
Would urinate, empty the bag and go back to sleep.
By 7am I would wake up aware of the bag again and need to urinate and empty if out.

Once or twice I was too sleepy to get up and would try to remain in bed but than would have crazy flashes of the bag getting too full and the urine going back up the tube into my kidney...LOL Yes, irrational I understand but enough to force me out of bed to urinate and empty the bag :)

2 nights ago I thought i might have to get the bag changed again soon, around the 5 day spot again, rather than the original 7 day but didnt feel it was necessary yet.
Last night I noticed that the bag was not as full as before...although i felt a bit more pressure to urinate the old fashioned way which was fine but mild alarm that the bag might be clogging up and if so WHY?
i had mentioned this to the new family doctor 3 days ago, she looked at the bag and colour of my urine, said that was looking good although she did notice little white flakes coming down the tube, as i had pointed out.
She didnt know what it was. Guessed it might either be small bits of the kidney stone or flakes of skin. I was not convinced but I would not be able to get into the kidney doctor before the operation so just had to live with it.
Tried earlier to get an appt for tomorrow for it to be changed but they are fully booked and can't do it until Monday. The operation is Tuesday. Told me to phone in the morning and see if there are any cancellations.

Know it's time to be changed.
Went to bed tonight at 11, woke up at 1:30 with a strong urge to urinate and again, the bag is 1/4 full.
It feels to be as if its getting clogged and not as freely flowing into the bag but applying pressure to urinate the old fashioned way instead :)

In short, I instinctively feel its not doing quite as well as it was the first two months before any cloudiness took place.
Is it the food I am eating?
Is it just that when I had the stent put in I had barely eaten much for 3 months prior, hence, am I somehow hurting my kidney with what i am eating today? Etc.

I have another form in which to have some blood taken from the kidney doctor- the last results for him were done about 5 weeks ago.
The recent createntine results were from Jan 10th from the Liver doctor.
Will try my hardest to get tests done tomorrow or at worse Sunday and see if there is anything then to be alarmed with.

I am concerned about this cloudiness and new nail change - ( Muehrcke's lines )...I dont know if the appearance of this set of lines is from past damage or indicative of something taking place as this cloudiness, white flakes in line stuff has been happening, the last 2 weeks.

No one told me i was not able to eat meat, likely because no one knows what type of stone it is so far.
I have only just started to read up that meat might be an issue but I was never a huge meat eater anyhow but admittedly over the past 2 months have been eating quite a bit of Kidney stew and meat stew ( lean ground beef) due to the frigid cold weather here.

Anyhow those are the gory details, since you asked :)

-- Edited by HepCGtype2 on Saturday 20th of January 2018 02:57:42 AM

-- Edited by HepCGtype2 on Saturday 20th of January 2018 03:04:36 AM