Hep C Discussion Forum

Cheddy · Moderator

RE: Started treatment

HepCGtype2 · Senior Member

Quick Update:

Creatinine was 150 two months ago.
Everything else in normal range except for hemoglobin that was at 118. It was at 122 a year earlier ( still low) that took 6 months of Ferrous Fumerate to accomplish. Asked for another prescription 2 months ago but 2 weeks in, this time, I found it too constipating so stopped that after a week.
Using something called MegaFood Blood Builder now. Next test in August which will let me know if thats working as well as others claim it does. No other issues (*crosses fingers )

Other than that......Hope all is well with all of you!!!

HepCGtype2 · Senior Member

Wow.

Everyones still here.
Thought almost everyone would have had the Hep C treatment by now?

Hope all of you are well these days! :D

Canuck · Guru

Hey! HI! smile

So glad to hear from ya.

Nice to hear your good bits of news, the improvements, even the slow and long ongoing ones.

Very nice you have not had anymore urinary tract infections to complicate things! Hopefully all of you (you and your docs) will keep a good eye on your hemoglobin (and all your labs of course) and keep everything staying at a decent level. I am glad the oral iron therapy helped.

I am glad you have been more stable, and have not been having anymore decreasing kidney function nor increasing creatinines, like you were doing in the past. I am pleased no end biggrin that they have determined that you do now have some kidney function in BOTH kidneys (and not just one, as thought possible before) - the more function the better! Great news, as is the rest of your report, showing the stable-ness of you!

Sure glad to hear from you. Nice, you sound like you are doing better considering all. I am sure without having the hep c anymore, some of these other things that were going out of wack and out of balance and were so hard to deal with before, are going to cease and/or be able to improve more easily now. Always wishing you the best. : ) C.

Interesting report you found about the new GT4 and GT7 sub-types they found over there in africa, here is more on that - https://aasldpubs.onlinelibrary.wiley.com/doi/abs/10.1002/hep.30342?af=R

HepCGtype2 · Senior Member

Happy Holidays or Merry Christmas = whatever one's holiday is at this time of year!! :D

Interesting piece dated Dec 17th that I just came across that no doubt you are all aware of here. New strains of Hep C in Africa.

www.sciencedaily.com/releases/2018/12/181217105655.htm

Tig · Admin

Hello and welcome back! Your current situation sounds much improved and that’s good to hear. Your kidney function was so concerning, but your attention to diet and care appears to have set things on a smoother glide path. That has to give you a lot of hope for continued progress in that area.

I got a chuckle when I read your old person’s nap comment! It’s an easy habit to get into and you know what, if it feels good, do it! There are a lot of studies that show great benefit to them. Our neighbors to the south have the right idea, a good lunch and a siesta will always make you feel better!

We do tend to lose member participation after they achieve SVR, but it’s always a pleasant surprise when they check in and share their progress. I’m so glad you did. Keep in touch and watch out for those Avocados! wink

HepCGtype2 · Senior Member

"I've lost track of your 6 month VL check-up??!! If sig line dates are right, and SVR12 was around Jan 2018?, then is your SVR24 around now, July??"

What's that???
Is that another check for liver tests?

Hi all! It's been a while but I imagine many former C patients move on after they are cleared.

Short catch up:

I couldn't stand the potassium/renal diet as it was quite heavy on meat. Although I did eat meat, my preference was towards vegan dishes so when I reached 290 Creatinine, I think it was and the Nephrologist told me I would stabalize there, I decided to go whole food plant based.
Mainly so as not to stress the kidneys further with meats and/or processed foods.
I believe that was about last April?

They transferred me to a Kidney clinic that took care of everything surrounding the kidneys. Last stop gap I suppose before Dialysis and wanted to see me every 3 months.
I had complained numerous times to my earlier family doctor that I had little or no energy and when I mentioned it to the Neprho he tested my hemoglobin which was, I believe then at 60 ( extremely low)
I was given a 3 month course of Ferrous Fumarate. Unknown to me, at the end of that 3 months I was to start another repeat 3 months so I finished the one I had the first week of August.

Blood tests in August showed that I had dropped a couple more points on the Creatinine although I cant remember the exact number off hand as its a very slow process but that my Hemoglobin was at that point at 82.
That was about 3 weeks after I finished the prescription of iron. I feared it dropping but in November, it had raised to 122 so 3 months after the last iron pill.
In August, they told me that my iron was binding far better than they normally see so it appeared then to be moving in the right direction.

As of November my creatinine dropped to.......sorry, offhand I can't remember the number but I just hit the border of stage 3. The very low end mind you. Would be wonderful to get back to Stage 3A but surprised I have recovered even this much so that might be too much to wish for.
Originally told I would have a 50% chance of dialysis by 70, that's now lowered to, I think 16% but those are just random numbers and I am aware that any health problem let alone aging could turn that around negatively again.

So at this point, I am not on any medication. Everything from cholesterol to blood pressure is in the normal range but I do still have to watch potassium levels. They are fine unless I do a run of avocados ( my crack) so I try to stay far away from those.

I had improved enough that in November they booted me from the Nephrology clinic. They said very rarely do people become well enough to leave but in my case I was no longer in the threshold that allowed me to remain but they will check blood every 6 months.

Oh yes, they did some imaging again in August and it seems that the kidney has grown a bit in size and is functioning after all. I forgot to ask the percentage but got the idea that its not great, that the right kidney is still the much stronger one but yes, so it at least does somewhat function.

Yes, no more UTIs, nor had I ever had one before and never wish to see another one again :D

Feeling much stronger but never will feel as strong as I did at 40.
Having had such a low hemoglobin level for so long, some of the "weakness" can be put down to age and that if you dont use it you lose it...and so on.
Started walking again but its been a slow go, trying to get back to the sort of long walks I once did but come spring, perhaps.
For now I am grateful that I can walk 10 minutes to my local market without having to stop twice to rest. I can even carry shopping bags back again home without being tired.
But for the first time in my life I do now seem to require a old persons nap in the afternoon so not impressed with that :D

The comment earlier about appearing strong was meant with humour. People keep telling me that dont know me or my history....its the strangest thing that they say, that but I quietly chuckle for if they only knew.

Still drinking tons of water. I try to do about 100 ounces a day but on slower days, a minimum of 80.
Crestor, is that the statin pill?
My family doctor keeps giving me those but I keep telling her yeah yeah yeah ok but I dont take them.
My nephrologist chuckled when I told him for my cholesterol numbers are fine.
My general doctors just want to keep pushing whatever pills that they can so no, i haven't been taking any pills since last August.

Hope you are all well and everyone's getting cured easily?

Canuck · Guru

Hey!

Glad to hear from you! Was just thinkin of you the other day and wondering how all was going, so very good you checked back in.

And with a good report too, wonderful increase in the GFR (from prior 21 to now 23)! and very nice creatinine decrease (from prior 217 to now 198)!

Kidneys are such amazing animals, they can sustain so much abuse, and then still work so hard to repair themselves.

Ya, I wondered about the potassium diet thing (quite a while ago), as the potassium labs you had been posting prior had been normal (for a while).

Nice, nice, nice, no more UTI's!, fingers crossed it stays that way now. Could not be better circumstances right now, and yes i too believe you are going to see more and more improvements.

So, are you still taking sodium bicarbonate 500 mg by mouth every day? Still drinking lots of water? Still taking Crestor? Still taking ferrous fumarate??

What has your blood iron/ferritin and or hemoglobin increased up to now??

Your nephro guy was going to set up some testing/imaging for you wasn't he? - to test "actual" functional "ability" of BOTH kidneys? - that would sure be good to know, once and for all, how much ability each of your kidneys has.

I've lost track of your 6 month VL check-up??!! If sig line dates are right, and SVR12 was around Jan 2018?, then is your SVR24 around now, July??

Glad you posted. (BTW- I think you are pretty strong too, my lady!) ; ) C.

HepCGtype2 · Senior Member

We will have to agree to disagree with respect to my former doctor.

In any event, I had my first appointment with that clinic last week, as an introduction but it is set up to try and help keep me off of Dialysis for as long as possible, and/or if needed, one day, a transplant.
Blood was taken and as of a few days ago, my creatinine has lowered to 198 and my GFR moved upwards to 23.
Still far from perfect but its been such a slow climb back that I can only hope I can eventually get it to around 30, if not even a bit higher but time will tell.

Upon introduction they explained that no matter how well I do, something as simple as a flu could create another shock event and I could lose any gains so I have been asked to fill out a Power of Attorney and soon make a choice which Dialysis procedure I would want if/when I end up needing it.
And in case something happens and i am suddenly unable to make a decision myself as to my care.

For now I feel pretty good, strong, although not as strong as i believe I would have had any of this not taken place but LOL....I have had 2 instances of strangers recently remarking as to how strong I appear physically, not knowing that i have anything wrong with me.
Appearances can be quite deceiving it appears :D

My potassium numbers lowered into a normal range so I was told I could just go back to eating whatever i did before but have spent the past couple of months making everything from scratch and living on a plant only based diet.

No more UTIs, thankfully!
Man oh man do I empathize with anyone that suffers those on a regular basis. :(

So, I imagine that you will all soon run out of HEP C patients for if i am right everyone is now getting treated so imagine once the big rush is done, only those that later find out they have it will be patients??

In any event, do hope everyone is doing well and Hep C is being eradicated!!!

Cheers all!!!

Canuck · Guru

Just saying, if you are ever asked to have a lab, test/imaging done - just do it, in a timely fashion. Very important, even if it turns out to be nothing and a huge useless waste of time in your opinion, or in anyone elses opinion, even when you doubt them or believe they are barking up a wrong tree - we cannot know everything, and we also cannot read their minds, know the extent of their thinking, cannot always understand what their rationales are, nor what avenues they are wishing to explore - docs cannot keep assessing us if we are not there, they can't read our minds either, nor can they babysit us, or force us to show up when they want something, so, when all is failing, not being there in front of them (us frustratingly trying to communicate with them, sometimes repeatedly to no avail!) makes it all the important to have at least the hard cold data/lab trail. The doc you didn't like, was correct in the CKD assessment, and some docs do utilize statins for various good reasons. Many people also end up trialing or taking Metformin as was prescribed for you, and it helps them. (Your early sugar issues/early kidney function issues/intitial statin use - all of those issues - could have been related to your unresolved HCV as well, at least in part). Your above range alpha2glob could also have had to do with your kidneys, not just liver, etc. In regard to your old GP - her decisions regarding you may not have been much dif than some other GP's decisions about what to do with you. Your negative/false gyne Ca suspicion could have been as simply explained as bad imaging and an abundance of proactive vigilent assessement, a good thing (if you had had Ca!). I do not believe she "made stuff up", nor did these things treatment things with you, or referred you to a uro guy, gyne guy to harm you, or to just mess with you.

Whatever events caused harm to you kidneys in the past, and for whatever reasons you were showing some sugars, now being free of HCV, I am hoping this will only help on these fronts greatly. The silent burden of HCV can contribute complicating unanticipated (extrahepatic) effects and thus help create extra havoc and conditions for our bodies to deal with.

Will be really interesting to see how good this kidney clinic thing may turn out to be - I hope it WILL be a very good and useful thing. Fingers crossed. :) C.

HepCGtype2 · Senior Member

Ok, tired but i just looked at the results.

It was June 16, 2017 that that last blood test was taken. I had been sick in May but had a standing blood test order given to me by her about 6 months earlier to have done and I did it.
At that time my GFR was 44 with Creatinine at 117.

Now she called me 1-2 days later and said she wanted me to do another test and so I went to have one 3 days later on the 19th. Looking at those results now, I wasnt tested for Creatinine but Red blood cells, etc; and this test below.

Alpha 2 Globulin
HI
9.3
5.0-9.0
g/L
Increased alpha-2 globulins. This can be seen
with an acute inflammatory process.

And that was the last I hear of her for about 3 weeks by which point I was sick again.
That was when I told her i was to ill to come into her office,
3 weeks passed, I was still to ill so she suggested it would be easier for me to go to emergency than her.
Then I received that phone call about the Colonoscopy, had it and then started on the other 3 month regime.
If you remember, I was fine for that 3 months and then just after I finished became ill throughout October, finally felt fine and went to see her on Nov 4th for that blood test and then was hospitalized that night.

Ok I think that was the scenario.....So not sure what she was testing for with that Alpha Globulin but it appears that was what she was after.

HepCGtype2 · Senior Member

Just checking in ..

Hmm. If I remember correctly my blood was taken on Oct 4, 2017 the day I ended the 3 month treatment and my Creatinine was 191, GFR 28. Then I became really ill and she called me wanting me to come in again for another test but I was to sick.

You have to understand that none of these numbers, at that point in time really meant anything to me. I hadn't had years of having blood tests, reading them, understanding them, so it was all rather Latin sounding to me, to begin with.
I had already been told for blood tests both months prior that my numbers were high, needed to be watched so when I was told in October that she needed to take my numbers again only a week later, she didnt sound concerned.
I told her I was to ill and would try and come in as soon as it passed bur from earlier experience i didnt expect it would be within the next 2 weeks or a bit longer and she said ok.
Had at any point in that conversation, I been told that it was critical that i came in right away, or that something was terribly wrong, I would have called an ambulance if I had been to sick to get in myself but I was never led to feel that it was an emergency.
That wasnt her fault though. Kidneys were not her area.

If I were to blame anyone, I would put the blame on my x family doctor who had told me I had stage 3 CKD a year earlier. Now, although that had been debunked by the Urologist, shortly after her diagnosis of Uterine cancer had also been debunked, I was without any trust in her.
So believing the Urologist, who I know, in retrospect did not have that information in front of home, another mistake made on her end, I had no reason to believe I had kidney issues.
She should have made contact with me for further blood tests, at the very least over that next 6 + month period for had she done so, I would than have had it confirmed that i did indeed have CKD.
But she didnt.
So about a week before I became ill the first time last May, I did have the first set of blood work done since that time in Sept the earlier year that were apparently abnormal, although at the time I did not know that or why.

She phoned me a week later to have me come into to discuss them. In retrospect I realize now she wanted to tell me about the CKD, that the numbers were worse and so on but she never did.
But I told her how sick I was, giving her the symptoms and she told me to come see her when I felt better.It was about 2 weeks later when I told her I still could not come as I was to sick she mentioned that i should go to emergency,

Had she warned me about the meaning of the earlier blood test, tat the symptoms I was experiencing while ill was indicative of kidney disease , or given me some sort of heads up, this might have all turned out differently.
All she said 2 weeks later was to go to emergency as it was closer to me than her office.

I was about to go but I spoke to another nurse about these symptoms a week earlier. She had asked me if I had ever had a Colonoscopy. I replied no and was told I would likely feel much better if I were to and booked me for one a week later.

That same day, or the next day, I felt fine again so by this point I assumed it had something to do with needing this Colonoscopy and didnt see the need for the emergency department.
HAD my family doctor only just once mentioned that the symptoms I was complaining of were typical of Kidney Disease, and that my numbers had gone up, then yes, I would have made it to emergency but I had to many people telling me different things and at that point didnt know what to think.

So yes, you and I had this convo before and I explained then that the only person I hold responsible for my not making it into emergency was that family doctor. I had lost all trust in her and i think she knew that I had. Because of this, I think she chose to ignore me, hoping I might go away, see another doctor essentially passing the buck where i was concerned.

I might not have mentioned it before but that same doctor had changed offices about 4x over the last 10 years and has just changed yet again a few months ago. I dont personally know why a doctor keeps moving from one clinic to another, losing patients each time she does but I have been wondering if there were some other problems with her perhaps + there was a reason that she was moving around so often.

So in the end, I have to blame myself for not going to emergency but I wasnt given the necessary information by her in order to allow me to make a responsible decision.
Had she given me at least a heads up as to the blood test, at that time and told me the symptoms i was experiencing were likely related to CKD, I would have known what to do but I wasnt told and by that time I felt fine so yes, it could all have been caught sooner i feel had i been given information at that time.

I know that another long term patient of hers, recently wrote a scathing report online about here. She said that she had been a great doctor for a decade but as soon as she had a few serious issues, that this family doctor completely failed her.
I read that after all of this happened and it sounded quite a bit similar to my own experience with that doctor.

That plus, ignorance on my end not really sure why I was so sick but at no point in time did I believe I was at risk for dehydration. Perhaps great naïveté on my part in hindsight but I had never been ill other than the odd flu and didnt have any reason to think that I woudlnt be ok.
I should add that during one of those periods, I briefly spoke to a doctor I know and asked him, as a neighbour if he felt I needed to go to emergency. He laughed and said no, that I was not ill enough but I guess he thought I had the flu as well or because I thought that, he had no reason to think otherwise.

I guess, in the end, i had to many fingers in the pie without the one person, my X family doctor pointing me in the right direction with the information that would have allowed me to handle a problem, I really didnt know existed, unfortunately.

Live and Learn.
Anyhow, all to late now so I can only hope to get my GFR back up to at least 24.

So yes, hydrating with water all that I can. I was sent info on Friday for that new Kidney clinic my Nepro spoke of and will be attending the first session in 5 weeks.

Ok....hope that helps. Cant think of any other info I can give you at this moment and I imagine that this post is much longer than intended anyhow :D

-- Edited by HepCGtype2 on Saturday 12th of May 2018 11:19:17 PM

Canuck · Guru

I am glad you discussed your lipid records with her - did she say your lipid numbers were actually high?? Reading lipid results and interpreting them CAN BE difficult, there you SHOULD always count on a doc to interpet them correctly for you. I would have been guessing but they did not seem out of wack to me. I do know docs DO have people on statins for other good reasons than just trying to balance out of wack lipids.

You have stabilized (comparatively speaking, from the hell you went through before!). Most importantly you feel better, with little symptoms, eating well and drinking lots of water to keep your urine dilute - these are the really important things.

You will now be keenly aware of any added symptoms and pay heed to them and present yourself to doc with them when need be (also important). If you are not feeling well, or start feeling less well, develop increased symptoms, or have new feelings or complaints, you will know to go to the doc.

From your April 2018 labs:

Bloods - your RBCs/hgb remain on the lower side, but you are on the iron now, so they (and you) will follow this and know when you can stop taking the iron.

Urine - showed only some leukocytes and slight cloudiness (which lots of water is so important for - you must always help keep your water works well flushed with lots of water from now on). Nothing else showed up - no trace of nitrate/blood - so very good indicators. Just keep making sure your urine is dilute and your system is well flushed.

Lipids - (the 4.9 you wrote) may not be out of wack (your doc would know and tell you if it was), probably not much dif from you prior 3.4 you said your Jun 2017 one was.

The June 2017 lab:

The old June 2017 GFR44 and creatinine 117 you bring up, was the one we discussed, before, at length wasn't it?, it was after that that your kidneys really started their protest, and then the hep guy wanted you to have further labs, and you were too sick to comply? At that GFR44 point your creatinine was only about 17 points above a high normal, it was after that when the creatinines were rising to their highs and the GFRs were declining to your lows, but it happened mostly in an unobserved and unchecked free-fall fashion, without the labs to follow it (that is until about the time you hit the ER).

The good thing is that your kidneys now (for a while) have stopped being injured and insulted, and the GFR is improving - you do need more time for healing and improvement, and you are doing everything right to help them, eating right, drinking lots of water, owning dilute urine - all very important, so is time, kidneys can and do forgive, and they will try very hard to repair damage. You will have to wait and see how much you gain back, all that really counts is that your have enough function and that you feel good. So far, I would say you are doing pretty good! smile C.

HepCGtype2 · Senior Member

Hi Tig.

Ok, spoke to the family doctor today and yes I dont like this labs results set up but prefer the one in the hospital. :(

She did take another urine to test but less for her concern than I believe just to put rest to mine but she didnt seem to believe it was an issue.
As I said before, nor did I BUT I expressed to her that after having a number of worse case scenario UTIs as the only reference I could make as to how they feel, that I didnt want to write off a potential problem because it seemed small by comparison to earlier.
That was one of my mistakes a year ago I believe when I was found with the stone blocking my urine.
I do recall slight side pains but having had horrifically painful stones in 1999, what I felt a year ago was so slight by comparison, I wrote it off as being anything problematic.
But as of today she did not seem to be at all concerned that it was a UTI..... (what can I say? I cant tell anymore)

She did want me back on the statin and said that I likely have just inherited an issue with it but that it is caused mainly by meat and dairy which I dont think I eat much of but she said at this point, its unlikely that a diet change would alter the numbers anyhow. I guess due to genes so said the pill, statin, was the answer.
I think that she said that if I were without kidney issues, I might not need the pill but combined it was best to do so.

She wasnt at all concerned about my sugars from that test. Said that I wasnt diabetic but of course to keep my sugars down.

Beyond that, see you in 3 months.
I said that I thought maybe i should have my blood tested monthly but she didnt seem to feel that I needed to do so and i gather had spoken to the Nepro who agreed.

But yes, I would have preferred at this state, monthly tests to see if my creatinine was still dropping allowing my GFR to improve so I suppose the system is just to busy to accommodate my interests now I am no longer viewed as "critical",
or they dont expect it to improve much more anyhow... Who knows. :)

So thats it for now although i dont know if any of that really tells you much or that you learned anything more than you already do as you seem to be well versed in all of this medical jargon already...

So thats it for now. Cheers to all of you!!!

Tig · Admin

The way those results are listed are difficult to interpret without some guessing. I agree the cholesterol is worth discussing th your doctor, but it doesn’t seem to be anything cataclysmic. There are medications and lifestyle changes that can help with that rather quickly. Your GFR has been problematic for awhile now. It was slowly climbing after all of your initial troubles. I’m hoping your doctor will be monitoring that closely, or should be. As long as it keeps going in the right direction, you can be pleased. It’s very important to stay aware of those improvements and concentrate on the things that help your renal function.

The WBC’s in your urine can be the result of a UTI, or a slowly resolving one. You’ve had so many issues of late, I wouldn’t be surprised if that’s what’s going on. You’re so aware of that, you’ll know if it worsens just by the discomfort a UTI causes. The cloudy urine is another indicator. Your doctor will be best able to determine what’s going on. Be sure to bring up all your questions and concerns. I write it all down before going in. That way I don’t forget to ask. You have so little time with most of these doctors now, if you pause for too long, they’re gone!

Let us know what you find out. Good luck!

HepCGtype2 · Senior Member

Oh wait.......dont think I looked at these numbers on the other page of results until now. If I did, or posted them earlier, forgive me. Doing 20 things at once momentarily.

Lipids.
Will ask her today but for me, right now I am not familiar yet with these tests, or results, to interpret them.

image.ibb.co/fpmarJ/Screen_Shot_2018_05_10_at_7_50_28_AM.png

Edit: Quick Peek so I guess my numbers are high :(

Looking further, I do see one from June 2017 when I was taking those pills so at first glance it would appear I do need to be taking them again :(

Cholesterol/HDL Cholesterol

3.4

How depressing. I just noticed a panel from June 2017 when my GFR was much healthier

https://image.ibb.co/csxtdy/Screen_Shot_2018_05_10_at_8_04_52_AM.png

-- Edited by HepCGtype2 on Thursday 10th of May 2018 08:06:16 AM

HepCGtype2 · Senior Member

Sorry about that. Yes, ok, now that i look again, that 25 was from a urine sample, not blood. Now that i see that, it should have been clear but I am not familiar with the way they post these lab reports, as I am the hospital labs way of doing it.

There is the full result.
I am seeing the new family doc today but will ask about a lipid panel.

I did receive a CD from the old family doc recently and will go through it later, if i have time, to see if/what mention of Lipids were at that time.
Dont hold me to it but i seem to recall her saying it was more of a preventative action, for Type 2, than anything else..........wasnt anything that she focused upon, but will look later.

Hopefully one day I will be able to read all these tests as you two do :D

image.ibb.co/mBrTdy/Screen_Shot_2018_05_10_at_7_39_48_AM.png

Canuck · Guru

Hey,

When you first posted this ... "On the recent blood test, it did show an increase in Leukocyte (Negative) of Hi 25 ( was in the normal range 3 weeks earlier). Reading about this on the web, it appears that 25 is an indication of a UTI. I explained to him that once I had finished the antibiotics, I had a very slight sense of burning which still remains." ...

the "25" number you refered to (that was not adding up and stumping me and TIG), did you mean this result was from a serum (blood) test, OR, was it from a urine sample that was dipsticked??

It would make more sense (the 25 number) if you had been speaking of a urine sample result.

I may have misunderstood you, that you were speaking of a urine dipstick test (not a serum/ blood test).

Dipsticking is a good and easy tool, handy, and an important and useful thing to do, especially just when you have gone through repeated bouts of UTI's, to keep an eye on things - but it is a rough guide/indicator, which (depending on results) may justify/spur further more precise lab testing, should the dipstick results be firmly suspiciously indicating something.

Some dipsticks have many components they test for, other dipsticks used only test for a handful of things.

Had you been having very distinct urinary symptom complaints, AND at the same time showing blood/protein/leukocytes/nitrates in your urine via a dipstick test, then that would have spurred and justified a further R&M and C&S, which would be further telling whether you may or may not be developing/having a UTI. But in your case, without firm UTI symptoms to speak of, I can see why your nephro guy might have discounted a slightly high reading in (only) the leukocytes of your dipsticked urine, without any other indicators of infection.

Here is a PDF desciption (of one certain kind of preemo-deluxe-cadillac dipstick), about page 40, it shows you that 25 leukocyte number I think you refer to.

Urine test strips and microscopy - Roche Diagnostics

If you present to a GP with UTI complaints/symptoms, some GP's will dipstick, right at their office, as a rough guide, before deciding if further lab testing of your urine is required.

Doesn't really matter about the old, old hgb hx now, go with the newest ones you do have and have been sharing here, and going forward, just make sure they keep following your hgb to see if they slowly keep improving.

The old GP, that you did'nt like, that tried you on BP meds/metformin/statin, she might have a "lipid panel" (total chol/HDL/LDL/triglercides) record on you, or, you may have had a lipid panel done during your work-up for HCV treatment, or anytime since - just see if there ARE any lipid panel results in your recent records to be able to discuss them with your current GP, to determine if that is the reason statins were prescribed, or if statins were prescibed for other reasons.

My fingers are still crossed for you - NO MORE UTI recurrences, we are quite finshed with them I think! smile C.

HepCGtype2 · Senior Member

Ah yes, sorry, I didnt realize that Leukocyte readings were for white blood cell counts.

Yes, I did mention that first thing to the Nepro. I had looked it up on the web and it led to UTIs. Concerned i might have one after all, despite a clear urine 3 weeks earlier, I did ask him about it but he was unconcerned.

He basically told me that the slight symptom I was having could be written off to so many other things, a few of which, poor technical reading in the lab, faulty test strips and so on.
I had done that test, not at the hospital where i do most of them but at the same lab that a month earlier said i did not have a UTI but i clearly did, the last one.

In any event I will do another urine test next week when I see my family doctor for a follow up. Despite what the Nepro said, I understand his area is Kidneys and not UTI's so I will check it out with her as well but i dont really feel that its an issue, or at least one that is problematic.
But I couldn't help but notice that reading either.
I prefer the results done in the hospital, if for no other reason than I am more familiar with them, can read them easier, and each one also shows me a chart, a trend, so I can see if it has gone up or down. The other lab doesnt offer that.
But since the Nepro changed his mind from the appointment 4 weeks ago, wanting me to get tests done each month, to last week, being transferred to the other "area" I wont be getting tests there anywhere as often as i was.

Hmm. A thermometer. I haven't needed one of those in about 25-30 years but did look in my supplies last summer when I first became ill, although I never did locate it.
My temp is rarely raised but i knew last summer when it was. Suppose I should buy a new one. :D

Unfortunately Canuck, I dont have a history of these hgb tests to look at, to see what my numbers might have been years ago so I cant tell if they have always been low or not.
I do recall though when I first noticed it.
About 4 years ago. I went into late menopause. I had always had extremely light periods all of my life and not even on a regular basis. Some females have great complaints all of their lives every month but mine was never a bother.
But about a year before I stopped having them, I started to have extremely heavy periods. At one point it went on for about 4 months straight.
I kept asking my doctor but she didnt seem at all concerned and led me to believe that it was somewhat normal.
Indistinctly I knew that it wasnt but I was at that point new to dealing with the medial system for the most part and placed my trust in her, than myself.
Perhaps she tested me and my numbers were ok. I dont know but it was right at that time where i started to notice the great decrease in energy.
She told me to take B Complex which did diddly squat for me :D

Thanks for all the advice. I will read up on Statins before I see my family doc, get monthly blood checks, urine tests......and whatever else I need....and deal with whatever happens, good or bad :D

Canuck · Guru

Hi,

Ya me too! I also had questions about what you wrote previously regarding your leukocytes (or WBC) ... you had written:

..."On the recent blood test, it did show an increase in Leukocyte (Negative) of Hi 25 ( was in the normal range 3 weeks earlier). Reading about this on the web, it appears that 25 is an indication of a UTI. I explained to him that once I had finished the antibiotics, I had a very slight sense of burning which still remains." ...

Your leuk. lab numbers were not adding up for me either, but I chose to ignore delving into this as you do not sound overtly infected with anything, and because the safest and best and most reliable things you can do (to continue to safegaurd your health), and what you should concentrate on is, is having your urines followed regularly (R&M's/C&S's), go to doc to discuss any symptoms and to go over lab results, and to keep pouring on the water and taking that sod. bicarb (only as they direct).

OTC is "over-the-counter" that includes anything non-scripted (for coughs, colds, flu, pain pills, etc.) including AZO which I don't really know what all it may have in it aside from aspirin. Just like your nephro guy reminded you, always check before you take any drug - given your kidney function, "anemia", and hx. Just pre-determine (just ask your GP) what OTC drugs would be (or would not be) good OK choices for you, should you ever need to make a quick run to the drug store for OTC pain pills or cold meds.

- Keep getting your urines followed with R&M's and C&S's if and when you suspect anything could possibly be going on in the water works.

- Try to keep getting your creatinines and GFRs followed. They also use "Basic Metabolic Panels" (BMP) which should include - BUN, Calcium, Chloride, Total CO2, Creatinine, Glucose, Potassium, Sodium - useful additional info to accompany your creatinine levels and your GFR's - just to help keep tabs on how everything is.

- Have your hgb monitored in an ongoing fashion.

My partner had/has a lowish hgb, despite trying "some" low, slow, long and gentle iron supplementation, his hgb did eventually come up (a bit), he remains kind of on the low side all the time - he feels fine, docs are not concerned, some people, it seems, just stubbornly do not boast robust hgb's, we figure this current "low/normal" is normal (for him) - he probably just "normally" runs this way - everybody can be a bit dif.

If you want to rule in why you should (or should not) be on statins, then know what all your past and current lipid panels are, and discuss same with doc - we don't know if you were put on them to help with lipids or for other benefit reasons. Decisions like these should be based on labs and/or your physicians experience/opinion in the ways statins can be used to benefit someone. C.

-- Edited by Canuck on Friday 4th of May 2018 10:24:29 PM

Tig · Admin

Hi,

You mentioned that your Leukocyte level was high at 25K or did I understand that wrong? That is another common name for White Blood Cells. There are several. Here in the US, the normal range for WBC’s is 4-11K.

Have you been taking your temperature regularly? If you should notice that elevating, and it stays that way, you need to find out why. Generally speaking, if you have a bacterial infection present, along with an elevated white count, you most often have an accompanying fever.

White Blood Cells

HepCGtype2 · Senior Member

Hi Tig.:

I wasnt aware that my white blood cell count had raised. Guess I need to go back and compare the recent test from earlier ones before commenting further.
Dont think that the Ureter is still healing. From what i can feel it healed pretty quickly.

Anemia, this is where this all began.
5 years ago before anything happened, I had a very sudden decrease in energy but doctors didnt seem to pay me any attention.
I was prescribed B complex vitamins which didnt seem to help so whatever this is, its been with me 5-6 years now.
I am physically very strong but in short spurts. The short length is abnormal but it was far worse before than now.
As far as I am aware I ate a lot of dark green leafy salads which should have given me all that i needed but I guess the dietician can go into that more with me but with the CKD I am not allowed those same leafy salads any longer ( high potassium)

I recall as a child/teenager my mother always commenting that she believed i was anemic but haven't ever encountered that again until a few years ago.

I dont believe I am starting to get a UTI. After I took the last round of antibiotics, I had a slight, very slight burning sensation afterwards which I assumed was just a residual UTI. I had a urine test and was cleared.
I still have that very slight burning. No better or worse than before. Its minor but will be watched but will look int that product AZO.
When I see my family doc next week, I will speak to her about the UTI if it is that and what needs to be done if they are going to become an ongoing problem for me :(

I was put on the Statin by my X quack doctor I believe as a preventative action but it was the only pill they did not have an issue with when in emergency and the Nepro said to keep taking them.
I havent. I have read too many negative comments about Statins but admittedly, I keep forgetting to look into it further. I am on a self-imposed strike from taking any pills I dont feel are crucial, at least until I know where my kidney numbers settle.

So much to look into: control of cholesterol through diet. ( on my list ) :D

Protein: I do eat chicken. Usually half a skinless boneless breast a day. Only meat I do eat though. ( Hate fish Argggh) :D
Ok, Lipids, I will get those tested when I see her next week. I probably did have tests when in emergency for that but that would be 6 months ago anyhow, so best to get new ones.

My heads spinning. I dont know how you guys keep up on all of this

Hi Canuck: :

I havent ruled out Statins in the long run but just feel I need to find the time to read up on them a bit more.
Sorry to say I have some trust issues with doctors wanting to give me pills. Just in case you hadn't noticed.

Yes, happy to get the scan come Aug 31 (that long away). I wasnt aware that there was any possibility that it could be be functioning again.
I didnt get the impression that he expects it to be, but that he feels that we just need to know where we stand with it, 6 months later with better kidney function than the ZERO he says i had the night I went to emergency.

OTC drugs. Will have to look that up again. Forgot what OTC stands for but will do so tomorrow.

Being bounced from my Nepro. It is what it is. He is so busy I understand that he doesnt have time to take new patients and one of his associates in emergency fought to get me into him but it seems we have hit a point where its now more of a social visit, so I guess he needs the time for others.

Yes, doing the soda carbonate each morning, drinking tons of water and now these Ferrous Fumerate pill as well...also with lots of water.

Ok, I see I have some more research to do. Phew. Will get back to you once I have done so as I have to also make a list of what to discuss with the new family doc next week :D

Pooped.
Will check in again soon and hope all is well with all of you!!!!!!!!!!

Canuck · Guru

Hi,

Keep on with the LOTS of water to always keep flushing your waterworks well, and I hope you are doing the sod. bicarb religiously (at the 500 mg. dose per day he recommended, or the amount he told you to do).

Does that sod. bicarb come in a pill form, via a pharmacy, via a script?

Keep asking for repeat R&M's and C&S's to be done by your GP.

Like Tig said discuss ALL with your GP:

- ask her to keep following your urines for infection

- ask for monthly creatinines and GFR's, if she will do them.

- discuss how "anemic" she thinks you are, and discuss use of iron supplements (versus diet only) further, ask for ongoing hbg blood test monitering.

I understand your caution and reluctance to take meds, period, with your kidney function being impaired, BUT use the GP to help you rule out whether it is to your benefit to be on statins or not. Look for all your old "lipid panels" (triglycerides, total cholesterol, HDL, LDL and the ratio between the HDL and LDL), gather any old lipid panel results you have found at home, take those with you when you see her and ask if she has any other lipid panels on you, if there are not many past lipid results, and if there are no recent ones, then ask her if you could have a new lipid panel done. Sometimes people ARE put on statins, not always necessarily because their lipids are very out of wack, statin use supposedly can have "other possible benefits" for certain people. Know what your lipid balance is and discuss all of this with your GP.

Same for OTC drugs, discuss what kinds of analgesics (or anything) the GP would wish you to take, or to avoid, given your kidney and other hx. Know in advance the best allowed OTC things that would be OK choices for you for things as simple as injuries/pain, colds or flu's.

I am ecstatic your nephro guy is going to have your other kidney re-assessed (that has been a silent question with me right from the start!) - this will be very good info to know come Aug! biggrin

Your fall in creatinines (among other things) are (sorta intrinsically) linked to your rises in GFR's, so yes, I too think you will see more of this, both going in the right and better directions!

This "clinic" he has joined you with, this may end up being a very good thing too - wait and see. smile C.

Tig · Admin

Hey Shelly,

Sorry to hear you've been given the boot from your favorite Nephrologist. Bummer! That's a sad day when you lose a doc you have come to respect and enjoy. Seems we have the same issues down here in the US as well. It is good that your doc thinks you're improving enough to start with the GP instead. Hopefully you'll get the same feeling with your new GP and have the same rapport. I'll keep my fingers crossed.

I wonder about the rise in your white count, too. Could be a number of things right now. If you're anemic or that ureter is still healing, that could be part of the problem. If you're developing a slight UTI, you could try an over the counter product called AZO. It's a product my wife and daughter swear by. I would ask your pharmacist if they have it and if it seems appropriate for your situation.

As far as your medication and the statin you've been prescribed, that's another question for the new doctor. If your cholesterol isn't a problem and is something you can control through diet, I'd rather try that first. The dietician should be able to advise you on iron supplements versus dietary intake. If you can obtain it via a vegetable based solution, I'd rather do that too. Since you're a big vegetable eater, you should be able to handle that easily. Some of those iron supplements aren't easy on the liver anyway and are less prone to absorption and clearance can also be problematic. I know we used to see a lot more high ferritin levels in people around here, but haven't heard too much about that recently. I think some of the old treatments caused issues with that. The newer drugs appear to be easier on the whole, than the old SOC's.

Have you considered other sources of protein, in addition to meats? Dairy or some of the protein drinks come to mind. If you can choke down Tofu (forgive me), you should be able to handle just about anything. That stuff doesn't work for me. Not to say you shouldn't try what works for you! I know some people swear by it, my niece uses it in a lot of her cooking. Do you like fish? That's another consideration. I think discussing all of this with your new dietician is going to be the best way forward. I know you'll figure it out. Look how far you've come already. I want to think the best is yet to come!

HepCGtype2 · Senior Member

Its all interesting, this view of our health care and how they system works, never having used it before all of this happened.

I was booted from my Nephrologist yesterday. Apparently I am no longer "critical". No more bi-monthly appointments. I was told I had "graduated" to a clinic of sorts, I think, more of a group that will encompass everything, including diet, etc but that I will more likely attend once every 6 months.
When I asked how often my blood would be tested, that too appeared to be in the 6 month range.
Hmm.
Not good enough for me at this stage, I still want to be tested monthly, at least until I know where my numbers will end up plateauing, but I suppose, for now, he doesnt feel there is a lot more that can take place.
Like myself, he's hoping my numbers decrease even further but I am guessing that there is little doubt that the GFR itself will change drastically for the better.

He's arranged at the end of August to have another scan to see if the left kidney, the one they said was not working at all last November, has started to work again.
He's not suggesting that it has, nor is he saying it hasn't but simple, an update is needed in order to see what is visible today, months after my function was at zero, whilst in emergency.

I was told that I have a 10% chance only, of ending up on Dialysis within 2 years. A 30% chance within 5 years but a 50% chance by the time I am 70.
When I asked him how they had determined those percentages, had the successful group been on a low potassium diet and the unsuccessful, not...I was told they dont know. LOL
Scratched my head a bit on that one for its almost like telling me, that all of this struggle with a low potassium diet could be for naught :D
Then to put further red roses on that statement, suggested that 70 was kind of old anyhow :D
I dont know about him but I dont consider 70 old...so I scratched my head further and determined that in the end, no one really knows that they are talking about :)

On the recent blood test, it did show an increase in Leukocyte (Negative) of Hi 25 ( was in the normal range 3 weeks earlier)
Reading about this on the web, it appears that 25 is an indication of a UTI.
I explained to him that once I had finished the antibiotics, I had a very slight sense of burning which still remains.
On a scale of 0-10, i consider it a 1, whereas the UTIs I had when I had that 2nd stent installed, I would have put in the 30+ range.
Seeing that, I assumed the slight burning I had might be signs of a very slight UTI forming again but he said no and explained without greater symptoms, its best not to treat and build up a tolerance for antibiotics but that the number 25 could really be due many other things.
Later in the day my family doctor phoned, wanting to see me in 10 days, to go over those tests. I will then enquire further as I understand past menopause for woman, UTIs can be monitored better. So, at this point, Who knows...

Yes, plenty of water and 2 glasses per day of that Diet Cranberry Juice, which I love the taste of but am not convinced it really keeps UTIs at bay.
For now, just the Sodium Bicarbonate 500mg and I am supposed to be taking a Rosuvstatin pill nightly, which admittedly I have not been doing for I am on strike with all medications unless absolutely necessary, or until I get a better idea of whether these statins are really necessary.
That was the one pill my quack X doctor put me on but the only one the emergency doctors said would not harm my kidney and suggested I remain taking.

I was also advised to start taking Ferrous fumarate to boost my iron levels. One tab daily at bedtime, then up to 2 tabs, than up to 3.
At present, my pharmacist wants to talk to them for he disagrees with the dosage and believes I should be taking 1 in the morning and 1 at night as they are hard to handle.

Beyond that.....nothing else and still waiting for the Dietician to get in touch for an appointment.

My only need, at this point, with the dietician is to just check out a few ingredients I use but more so, to get a better handle on the potassium of veggies as the information out there differs from one spot to another.
Generally speaking, I consider my diet very healthy but because I do eat a lot of veggies, there is some concern that its very difficult to stay within the safe boundaries of potassium.
And lastly, I haven't ever been a big meat eater and often substitute organic tofu in place of meat but now I am told that i can in fact consume protein, which everywhere else, suggests at my state, I shouldnt.
If its right, that i can....skinless boneless chicken, for example, than which of the two is less harmful in the long run, the chicken or the Tofu.......that sort of thing. Thats what i need to tidy up.

So, thats it for now, I have been bounced from my fave Nephrologist. I am no longer considered a special case it seems LOL :(

Canuck · Guru

Hey X-hepc2!

I'll take THAT anyday! (current GFR 21) - good/BETTER, heading in the right upward direction! biggrin Especially compared to the last GFR (in Feb?) of 18, and when compared to the lowest of lows, prior to that at 15! A GFR of 21 today is very welcome news. As is your creatinine, not increasing from 217, positive things indeed. I bet you WILL be seeing more gains in GFRs!

heehee - you bad! - making nephrology jokes - (piss poor) LOL. More like ... pissed off, or having a piss-up? Anyway, just glad your GFR is upward bound. smile

That link IS interesting, but IS really best geared to people who HAVE been definitively diagnosed with having this para-thyroid problem - you have NOT been diagnosed with such. On the contrary, as you have been expressing to us, that it was your nephrologists opinion and other doc opinons (expressed to you) that your parathyroids are not an issue.

When you first started posting here and you were going through so much troubles, we did had a few labs from you, but really we were ALL in the dark as to what many things "might" have been causes, to all that had and was going on with you. At an early point, you had mentioned (in relation to your hx of kidney stones) a hx of low hgbs, and a positive ipth - there could have "possibly" been a relationship there that needed to be excluded from further consideration, it was simply a matter of ruling out what contributing factors (such as a parathyroid problem), and/or other problems/conditions, that might have been affecting your renal health. This has been done for you, by your doc(s) - ruling out parathyroid influences - that was the only reason i pushed you to exhaust this unequivocal answer from your nephrologist - just to lay any parathyroid theory like that to rest.

If I had a parathyroid problem, then the website would be interesting to me, as I would be exploring this group of surgeons for their expertise. But ... being that I do not have parathyroid glands that need to be removed, then I am just interested to read about these guys because I am a nerd that way. wink

Good no more UTI's! Fingers crossed. Keep doing the water drinking. "Dilute/not concentrated" is the nice urine color we are after.

What exactly do you take (now), for you to comply with you nephrologists rx of "low dose" sod. bicarb??

Diet - I do wonder how much help the dietician will be?

Keep getting you hgb's followed (I'm sure they will).

Thnaks for sharing and being such a good reporter! C.

HepCGtype2 · Senior Member

Thanks all .

I dont understand all of this focus on iPTH though?
Yes, I mean, I understand the concern, naturally, but I have had the Nephrologist tell me twice that it doesnt relate in my case.
I have also had my new family doc speak to an Endocrinologist, who also said in my case it wasn't related, should I be questioning their responses?

Anyhow I just had another blood test as they will now be done monthly and my creatinine is still at 217 but my GFR has gone up to 21.
I understand that a GFR of 21 is still piss poor...lol....but it beats 15 at least.
To date, all increments have moved very slowly and being that I was last tested just 3 weeks ago, I would hope by next month there is a slight improvement again.

The most difficult part at this stage is finding recipes for meals that are low in potassium but....such recipes also call for a lot of white rice and white bread.
Crazy eh?
You spend your life avoiding white bread + white rice for more nutritional versions and now are told white bread/rice is the way to go.
I spent the last month adding both into my diet, briefly, but as soon as I do, I see my blood sugar numbers elevate a bit, but I wanted to test it, to see if maybe the eradication of Hep C had changed anything in that area, but i dont think that it has.
I just have to stay off anything with sugars but on the low potassium diet, that tends to add another complication.

So taking all of that into account, I have definitely been taking in more potassium than I should have but more so due to finding that right balance.
For instance, instead of white rice with veggies, I will use cauliflower rice, but then you have to measure how much, so as not to turn low potassium into high potassium, due to larger portions.

So, just trying to find the right balance and it takes time to figure it all out properly.

Some of you have been unfortunate in that you required a Liver transplant, despite for most, that working out for you in the end, but i dont think I would be entitled to a Kidney transplant if it came to that ...so have to take care of this one I have :)

I will go and read that link of Tigs and think about it further. In the meantime, I do hope you are all doing well???

And......NO MORE Utis thankfully *phew*

As far as getting reports online, from both the Nephrologist, as well as my blood counts through the Family doc, I made a point in choosing a network of hospitals that all do that.
Maybe i am fortunate because i am living in a large city, perhaps smaller town hospitals dont offer that but yes.......I like having access to my results within an hour, and/or at my fingertips whenever needed.

On that note, hope you are all doing very well, or at least as well as possible.!!!! *waves to all* :)

Observer · Guru

So so glad youre on the mend. I was thinking about you today so its nice that you updated us.

A

Canuck · Guru

Hi hepc2,

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

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

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

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

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

I like his comment ... "continues to exhibit ongoing improvement" ... C.

Tig · Admin

It’s all sounding very positive and I’m pleased to hear about your progress! There is definitely some correlation between calcium stones and an elevated iPTH. The parathyroid glands are definitely a potential source of interest whenever a calcium kidney stone found. If you haven’t looked at this webpage, take a moment and review it. It’s very informative.

Kidney Stones and the Parathyroid

HepCGtype2 · Senior Member

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

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

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

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

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

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

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

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

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

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

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

For now....

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

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

Canuck · Guru

Hi,

Yes, as Tig says, a very good update!

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

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

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

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

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

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

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

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

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

HepCGtype2 · Senior Member

"Don't forget about asking nephro what HE thinks about your about your iPTH, and HIS opinion on (possibly related to iPTH)"

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

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

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

1.3 - 7.7 = Normal

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

Calcium
VALUE
2.45 mmol/L
Normal

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

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

Thanks Tig :)

Tig · Admin

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

HepCGtype2 · Senior Member

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

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

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

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

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

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

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

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

Canuck · Guru

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

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

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

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

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

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

Tig · Admin

That’s fabulous, I’m so glad that you’re rid of all those extra parts and pieces. I can only imagine the relief you’re feeling right now. I don’t think I’d ever want to go through what you have. BUT... if I can be 40 again, I’m willing to try, lol!

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

HepCGtype2 · Senior Member

Thanks everyone!

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

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

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

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

So FINGERS CROSSED no more UTIs.

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

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

-- Edited by HepCGtype2 on Sunday 1st of April 2018 04:39:55 PM

Tig · Admin

I‘m so happy to hear about your progress, Shelly! Removing that stent and getting your plumbing back on track, without foreign hardware in the way, should help quickly. I’m going to keep my fingers crossed for your rapid return to the ring!

Keep us informed and good luck... smile

Canuck · Guru

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

Progress! One less thing once that tube is gone.

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

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

HepCGtype2 · Senior Member

Yes, tomorrow I am having this tube/bag removed. Finally!! :D

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

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

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

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

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

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

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

Canuck · Guru

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

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

Later. Hang in there. C.

HepCGtype2 · Senior Member

Thanks Tig but there isn't any need for you to be sorry, this is not your fault :D

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

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

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

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

Cheers, all :D

Tig · Admin

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

HepCGtype2 · Senior Member

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

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

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

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

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

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

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

Organism:
Pseudomonas aeruginosa

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

Pseudomonas aeruginosa >100 x E6 cfu/L

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

Lovely sounding bacteria isn't it? :D

-- Edited by HepCGtype2 on Friday 16th of March 2018 12:23:16 AM

Canuck · Guru

Yes, that is a very good educational lab link.

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

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

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

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

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

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

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

HepCGtype2 · Senior Member

No, I hadn't seen that yet TIG but that's a keeper. Have saved it and will go through it fully when done here. Good stuff!

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

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

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

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

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

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

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

I can't win :D

Tig · Admin

Here’s a good resource on lab values and results if you haven’t seen it yet.

Lab Values

HepCGtype2 · Senior Member

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

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

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

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

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

Canuck · Guru

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

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

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

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

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

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

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

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