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.   C.

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

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    :(

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.

'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

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

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. 

1) Glad the ureteral catheter is out (the one that exited via your urethra) - but, have they also removed the other 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!  C.

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  

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 there’s some hidden liability their insurance worries about. Of course now you can wonder if they caused you.......oh, never mind. You know where I’m going. It’s vital to ask 20 minutes of questions during that 10 minute appointment. A lot of these docs are just learning. It’s good to keep them on their toes! It also helps their next patient avoid the same uh, confusion? 

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

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

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.

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... 

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.

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.

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

'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.

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)

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! 

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?  C. 

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 :)

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.  C.

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

Hi, 

If it is a ureteral catheter (or stent) then your procedural doc likely put it there for good reason (whatever the specific reasons for it's purpose is!) - there could be some really goood (multiple) reasons why he wants it there - hard for us to tell from here (and for you, as it was not explained to you unfortunately.)

Yes, although any kind of catheterizations can put you at increased risk for a UTI, simply just because of the mechanics of the situ, possible introduction of organisms etc., (but resultant post-procedural UTI's are not always the case), but this why with such procedures they may decide to put you on antibiotics prophalactically. We do not know if you had any UTI, or not, prior to this procedure (or anytime since your first Nov procedure), nor do we know for sure if you have a UTI now - only C&S's all along would best tell them and you this, and you don't have any labs showing that any C&S's were done, nor the results of same. 

I can tell you tho, that just the first equipment you had installed can create the feelings similar to UTI/stones, and this current procedure/catheter (possibly extending the length of your urinary tract from urethra up one ureter) can also mimick feelings of UTI/stones.

Keep drinking lots of water - it will be your best solace in trying to relieve these urinary discomfort feelings.

If it were me, and not knowing whether they are still seeking stones/or any form of calculi (or passage of same), I would be straining my own urine at home to look for evidence. (There is easy equip available for that at pharmacies, hospitals, certain labs and certain docs offices - inquire around - for where you can pick up a toilet urinary collection "hat" or "toilet pan", and a straining/sifting device).

Don't pull the string and thing out. If you truly think it is "dislodging" itself (it may just "feel" like it is), then go see any doc, your GP for instance, for advice/opinion in your nephrologists absence. You certainly might not be needing anymore antibiotics, especially without knowing if you have a UTI or without a conflab with your docs about C&S proof of UTI's, unless for some reason the nephrologist should want you further prophalactic antibiotics, or has some reason to keep you on long term antibiotics.

How is the old site healing up now (where the original tube was exiting your body into the bag)? Did they put a stitch in there, or some steri-strips or something? C.

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   :)

I hope you can get that out before you go nuts! That stent must be hard to deal with. Just remember, it’s in the Ureter, not the Urethra! You don’t want to be yanking it out...Ouch! You might pull your bladder out with it.   

We’re hoping and praying things begin to provide you the relief and resolution desired and certainly deserved. Let us know when you get those results. 

Hey there,

Glad to hear back from you and how Tues and on went.

I'm not clear on things yet though.

What did they see/find via the ureteroscopy? Did they tell you what they discovered for stones, or obstructions, or conditions?? How did they find the overall patency/condition of your ureter? Did they find any stoney evidence to remove/sample? I am assuming they removed your prior shunt/bypass/bag, and now your only pee route is via the urethra? Do they have you "straining" your urine output at home for evidence of stones?

I cannot figure out what device they have left in you, that goes into your urethra/bladder (or further) ... "string"?, so I can only assume (like you mentioned) ... perhaps something (catheter/stent? thingy) to ensure patency of urethra? I'm a bit stymied on that one. 

Macrobid - how many mg is each dose, how many times per day, and how many days is your course of this? 

Hope you have kept up on the water drinking and the flushing out of your water works.

Glad the procedure day went relatively smoothly. 

Be patient, wait and see what starts to come together as far as GFR outcomes and improvements. Good you are booked for the nephrologist again. The GFR is a handy important overall lab to refer to, but all your labs, in totality, tell the fullest story, (creatinines are part of the GFR). Many other portions of your labs are valuable data too. C.

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... 

The National Kidney Foundation offers some excellent information on everything Kidney! If you haven’t reviewed the website, it’s worth checking out.

GFR-Natl. Kidney Fdn.

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.

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!

Just found a test taken in June 2017 so this was a couple of weeks before I started the Epclusa.

You will see the differences from this one to later.....

image.ibb.co/iN3D1w/Screen_Shot_2018_01_22_at_9_16_46_PM.png

Should mention that at no time was I contacted about those numbers by the Quack doctor  :)

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

2-Less :)

I doubt this is diabetes related but if it were at all, perhaps just an added slight complication.
I can tell that my numbers were a bit higher over Xmas but considering what one eats at such a time not surprising.
But they will fall dramatically again once away from holiday food.
I have just reached the point where i can no longer even afford a small break, such as being bad at Xmas time though.

I was put on the Metformin because i said I had a marked increase in urine so I was tested and found to be diabetic.
What it did was show me that my food choices were no longer right for me and i cut out breads and pastas at which point the numbers dropped to normal.
But even if normal for a month, if I were to indulge in a tub of Chocolate Haagen Daz, just for example and then tested myself, my numbers would be drastically higher i would suspect.
Hence, if I were a doctor, I would want to have a patient take that same test a few times over the next year.

I watched my numbers for a year and noticed i was not high, and it was that very day that I told my doctor I was going off of the Metformin, that she told me I had Cervical cancer.....LOL.....so any thoughts of dropping the Metformin sort of fell by the wayside :)
So i kept taking them, figuring she knew best but when i became ill in July I stopped taking all pills, for no other reason than I was unable to keep them down.
By the time I got to emergency, they were aghast, judging by my low numbers that i had ever been prescribed those drugs in the first place.

I read something recently about Canadian doctors. Something to the effect of how enquiries here will not allow anyone to find out if a doctor is being paid by drug companies to promote drugs.
The article suggested that in the US and UK all f that is visible to anyone inquiring, but not here.
Haven thad time to follow that up but it suggested that doctors were prescribing unnecessarily.

The scope was because I had mentioned I was having IBS related symptoms, out of the blue.
Which went away super big time the moment the Epclusa began which I am sure most here have experienced? LOL
In earlier posts when I began the Hep C treatment, I mentioned what a pleasure it was to be able to go, rather well naturlaly again.
That stopped half way through and the old problems emerged but that was at the time my Creatinine was raising.
From the moment i received the Stent, I haven't had any IBS type issues leading me to believe it might have been a symptom of the Kidney problem, and/or perhaps even aggravated by the Hep C.
I did not need the scope and with all I have been through since I am glad i refused it for it would not have helped my situation.

I think that particular quack doctor, in hindsight did everything from statistics as if we are all the same but was unable to really listen carefully to the patient and what I was telling her.

Anyhow, D-Day tomorrow and my poor lil Urethra is already rebelling at the thought of that foreign thing being pushed up into it.

Will let you all know how it goes + hope all is well on all of your ends in the meantime :)

Cheers!!!

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. 

Hi Shelly,

The urine tests you asked about are the R+M, which is "Routine and Microscopic", it is the first test typically ordered. It looks at basic things and the microscopic aspect looks for bacteria present. If there is a UTI, the C+S or "Culture and Sensitivity" is performed. That looks at and determines the bacteria responsible for your infection and what antibiotic it is sensitive to. So the R+M is first, that determines if a C+S is warranted and a treatment plan is determined from those results.

Have you continued to hydrate properly? If you have a UTI, nothing is better for it than to keep flushing it out. If it's painful, they can offer medications to reduce that. There are even over the counter products, like AZO that can help too. Of course you must check with your doctor first before adding any medications, especially with your current state of affairs. You can supplement some of your liquids with cranberry juice. It really helps the urinary tract health (in my opinion). They make a sugar free juice product for those that are avoiding sugar. I think increasing your water is the first, best thing you can start with. You will benefit greatly by discussing this with your Nutritionist in the coming days. Life doesn't have to be boring just because you have these issues going on. Once you get these current problems resolved, and you will, things will smooth out. You're going over a bumpy patch of road right now, I have it from a good authority that there's some nice new paved road ahead! Never give up.....

I am surprised they are not just routinely doing R&M's and C&S's on both of your "streams" of urines, just to keep an eye on possible UTI's, or to assess if the flakes are "calculi" or not, if calculi, then your GP or docs might have had the "type of calculi" identified by now? Dunno.

It is too bad there is and has been such a confusing complicated cascade of events, that cloud what the most concerning hints should have been paid attention to - namely the first lady doc who ever became concerned regarding your first known abnormal GFR or creatinines, the one who came up with "stage 3 kidney disease" for you - abnormal lab findings should never be ignored, until they are fully investigated, normal again or at least proven as inconsequential.

Did you actually pass stones in 1999?, were they ever "seen" (collected), or, imaged while they were in you? If you had documeneted "proven" stones in 1999, then the best care would have been that your kidneys should have been routinely followed for same, and function, since then.

For now, your A1C's will be a good method to see how your body is handling blood sugars over long term, aside from other periodic blood sugar tests they may also follow you with.

I am more concerned with the gaps in time (of your kidney following) tho, since the time of the "stones" of 1999. Even the recurrent vague-ish urinary "frequency" things you noticed 1.5 years ago just prior to going on metformin, and then also, MORE SO, what really stands out as important to me is the 1+ years ago (about Sept/Oct 2016 time frame) after your "familiar pain/symptoms/urine blood", when then lady doc finally said she found stage 3 kidney disease - that WAS the biggest discovery that SHOULD have been ruled in or out as accurate for you! Doesn't really matter if you were "told" stage 3, or stage 2, or stage 1 kidney disease then - (any stage of kidney disease, any time) is a problem and not good, not to be ignored, especially given your hx of all things urinary and on again off again stones, etc.   

It's hard to know what your urolgists had in his files for you (as far as a GFR or creatinine levels for you), why he saw stones and then no stones, but as it turned out ... better late than never, it was very good thing that your hep doc finally made you attend to being re-tested for your upward creeping creatinines.

I have a gut feeling this has been a slo-mo car crash, perhaps at least since the time of the 2016 lady doc (who came up with telling you "stage 3 kidney disease"), who probably had evidence she WAS on he right track. Delays in sussing any organ/system being distressed is not good. 

Only wish we knew what every one of your creatinines have been since 1999! Wonder what they were with the lady doc in 2016?

Diet? - Just ask them, I would assume a "ordinary, not heavy, not extreme, boringly normal, well balanced, nutricious, light diet that does not overload you with huge amounts of pure solid meat proteins" - can't go wrong with that, until someone informs you otherwise. The not eating/drinking enough or eating poorly could possibly be just as harming as the eating of something unknowingly forbidden! Ask.

You didn't give me the timeline of your BP issues - how long had you had hi BP problems before you started the ace inhibitor, when did you start the ace inhibotor, and at what dosages? All I can figure is that the BP med stopped around 2 months into the epclusa? With kidneys not up to par it may have been the BP drug that could have done more harm than help (depending). 

1) Just concentrate on your needed Tues procedure.

2) Next time you need to have your equipment attended to, ask if they do (or will do) an R&M AND a C&S (from both sources of your urine) and why they cannot also strain/collect a sample then for examination/typing of the flakes (if  the flakes are calculi). Mind you, surely they wll be typing what ever calculi they may find in your ureter on Tues! Never say never tho, make sure you ask them to type whatever calculi they find in you on the Tues procedure! 

3) Just ask if there is any food/foods (renal-wise) you need to be avoiding, until you are told otherwise.

4) Maybe start creating a really accurate written log of your daily fluid intake amounts, and a really accurate log of your exact daily output(s) of urine (hm, at the moment this will require 2 logs for each urine source) - so you can accurately show docs changes.

5) Once your Tuesday is done, in tandem with that outcome, then finish finding out about any bearing the iPTH holds.

That is about all you can do for now. I think Tues is huge good, it is really going to help, you will get way ahead in figuring all this out.  C.

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

2-less,

Ya, I wouldn't want another ureteroscopy wide awake! I was more than miffed how that all went down, but I suvived. Nice you will get sleepy-byes for your procedure, I think everyone gets sleepy-byes for these things nowadays. Those two drugs should be a very good combo for you. I was given a puny 5mg tab of valium, and believe me, I was wide awake. You won't remember a thing and will awake/recover quite quickly. 

Sorry about the million questions, but what a grand job you have done combing through everything! I was sure they must have had more than one GFR on you. Having that trend info (between Sep 5 - GFR33, through Oct 4 -GFR24, and Jan 10 - GFR15) is very good data. But your other blood results were all telling too. So good job on digging them all up. Even the urine (even though bloods are more informative than urine) it is still useful, in (mainly) at least showing that you had a higher than normal amount of protein/albumin making it through and spilling out via your urine. Just more possible confirmation of your kidneys not doing their normal good job. 

Some of the other blood tests you have been having (all those we have been asking about and discussing) ARE part and parcel and mimick some of the info contained in and/or derived from a GFR, so not to worry, they have been following your kidney function via various methods. 

So, (to me) it seems, (if I have the timelines fairly correct), with your epclusa SOT of aprox. Aug 5 and EOT of aprox Oct 21, that you were taking the BP drug right through Aug and Sep - BP med taken about the first 2 out of 3 months of the epclusa. So, yes then, being that those BP ace inhibitors are excreted via kidney, and, at the same time your kidneys were having to deal with the sof part of the epclusa as well, and, as well, as not knowing how long you may have had a mechanical blockage of your urinary ststem and what deleterious effect that had on your kidneys, I would guess your first while on epclusa treatment was a hardship on your kidneys for various combined/compounding reasons. 

But this is not to say that you did not already have some kidneys function stuff going on "not perfect kidney function" to begin with, before you ever got put on metformin, ace inhibitor, or epclusa. THAT would be very interesting to know, what your GFR's "might have been" long prior to the Sep 5 GFR of 33, but, that's water under the bridge now. We are (after the fact) at this late date trying to piece the lab bits together, that being easier to suss at this point, in retrospect, than it is trying to figure out where your kidneys were at before Sep 5, or before any of these meds. 

I do remember you saying you had been on the metformin for a good while, and that your blood sugars had been stable/good for quite some time, so that is good.

BTW - the blood sugar test they described as "covering 3 months" ... is called "A1C". You may have had this test done before and were just not in the know of it being done. 

I don't recall you speaking a lot about high BP problems, or for how long your BP's were abnormal, and how long ago you had been put on the ace inhibitor - that would be good hx info to know, and, what kind of doses you were you taking of the perindopril.

I do recall you speaking of an old (the original) "here and gone again" imaging of stones, how long ago was that ?, the "original" looking for stones imaging done? 

Did you say (one time) that you had experienced a prior problem with one kidney once (a long time ago maybe)? I forget - if you ever did mention anything like that, but, it seems to me you might have mentioned something about having one "not so good" kidney, maybe I'm just making that up, remembering someone else. 

Don't fret, first things first, everything they are doing are the right things to do, off meds that your kidneys have to deal with, following your kidney function, rectifying any mechanical obstruction of the water works. Tuesday will be a good day! Then see what next they say about your iPTH, what your stony bits are comprized of, what creates them, and what has created the kidney problems for you.

As far as dietician, in the interim, just ask your doc(s) if you should be on a diet that is not "overly-heavy" on loads and loads and loads of heavy meat protein - like ... don't go on an all exclusive "meat-only" diet for some reason.  

Keep us posted, we will be waiting right here for you to come back with your good news, that they resolved any ureter blockage for you.  C.