Yep, we're still here.  As long as there are people still asking questions and so many are reading the site, we are happy to help.

It sounds like things are mostly getting better for you.  Ah yes, to be 40 again would have some real benefits, but there are parts I wouldn't want to do over.

Take good care of yourself, 

Hey! HI! 

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  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

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! 

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.

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.

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

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!  C.

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!

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     :(

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

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!  C.

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.

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

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! 

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.  C. 

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!

Hey X-hepc2!

I'll take THAT anyday! (current GFR 21) - good/BETTER, heading in the right upward direction!  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.  

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.   

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.

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

A

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.

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

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??!!

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.  

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!

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?    C.

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!

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..

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... 

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.  

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

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.

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!

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

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.  C.

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

Lab Values

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.  C.