Kidney Disease...

[firewatcher]

Well, I get to add another diagnosis to my list after today. I saw a new Nephrologist today and she confirmed that I have stable Chronic Kidney Disease (stage 3A, gfr=50.) She would not venture any guesses for a prognosis since there is no known "cause" for me to have it. I really don't think that she either believed or cared about the POTS, but at least she agreed to monitor me yearly. I guess that's really all I can hope for.

[Crow]

((fw))

[lieze]

How are things going with the Chinese medicine?

Is this something he is trying to help with?

[Dizzysillyak]

Hi Firewatcher,

sorry to hear this. I don't know anything about kidney diseases but based on what I've been learning over the last 5 years, I'd look at holistic treatments too.

I wonder what role this may be playing in your dysautonomia ...

tc ...

[firewatcher]

Thanks guys,

lieze--the OMD (Oriental Med Doc) has primarily been treating my kidneys, that is actually where he says the problem is and it is the one organ system that overlaps both Eastern and Western medicines. Actually my numbers are better now than they were before I started.

Dizzysillyak--as far as the POTS and the kidney disease, I have no idea. I have some suspicions about chronic hypovolemia and kidney damage, but the doc was not willing to talk to me on that.

The nephrololgist said that once your kidneys suffer "chronic" damage, they don't come back and that "managing" it is what she is intending to do. Her advice was to keep hydrated and keep my blood pressure down...yeah right! She's got NO clue. I guess I just won't stand up or move.

[lieze]

I'm hoping that you may just surprise that doctor.

That is fantastic news that you are seeing improvement through the OMD route.

Keep up the good work.

I'd be interested in hearing more details about what is involved with that when you're feeling up to it.

Sending a prayer out to you for your health and healing.

[MomtoGiuliana]

That's concerning, yet hard not to wonder--is this dr correct? Did she explain on what basis she diagnosed you?

[firewatcher]

I'm hoping that you may just surprise that doctor.

That is fantastic news that you are seeing improvement through the OMD route.

Keep up the good work.

I'd be interested in hearing more details about what is involved with that when you're feeling up to it.

Sending a prayer out to you for your health and healing.

I am hoping to surprise the doctor too.

As far as the Chinese medicine stuff, it is weekly acupuncture/moxa visits and prescribed herbal therapy. The herbs are medicine, not supplements, and are researched and approved by me and my pharmacist Dad. My GP is reluctantly on board. I have found several PubMed articles on certain Chinese formulas that can help CKD, where drugs don't help. My OM doc seems up to date on these, but treats one thing at a time...in order of presentation.

Did you want more info on the OMD thing or the CKD?

[firewatcher]

That's concerning, yet hard not to wonder--is this dr correct? Did she explain on what basis she diagnosed you?

I suspect that this doc is actually correct. She based her dx on my past labs, they are just too consistent. Since my numbers are the same over the last 5 years and my POTS treatments only began two years ago, the numbers haven't really changed. The only thing that seems to make a big difference is the level of hydration: more fluid and meds = better numbers/function. Unfortunately, it means that my unmedicated condition is still bad. The meds and fluid just make the function better, like insulin for a diabetic.

I don't really think she used that big brain that she is known to have, and why I saw her. But I will see her again in 6 months, and we'll go from there.

[Guest tearose]

Keep flushing those kidneys with good water! I hope you are able to not get any worse.

I am sorry you have one more thing to have to manage.

hang in there

( I will keep you in my prayers too but that is a secret! )

[juliegee]

Hey Jennifer-

Tell me what Stage 3 means. How many stages, etc. In an odd way, it's good to have confirmation. You've suspected this for so long.

We've already spoken about this, but I'm suspecting that your kidney problems & polycythemia may be attributable to thickened blood.... Just another avenue to explore when you feel ready. The good news- relatively easy fix

Gentle healing hugs-

Julie

[firewatcher]

Hey Jennifer-

Tell me what Stage 3 means. How many stages, etc. In an odd way, it's good to have confirmation. You've suspected this for so long.

We've already spoken about this, but I'm suspecting that your kidney problems & polycythemia may be attributable to thickened blood.... Just another avenue to explore when you feel ready. The good news- relatively easy fix

Gentle healing hugs-

Julie

Julie,

There are five stages of Kidney disease. At stage 4, major complications begin. Stage 5 is called End Stage Renal Disease or Kidney failure and they look for transplant or dialysis options. Right now, I am stable, but the doc said that any bout of food poisoning or diarrhea (severe dehydration) could send me into stage 5 quickly (Acute on Chronic Kidney disease.) She did not think that I would progress quickly, since I've been where I am for five years; but that I need to take steps to preserve what function I still have.

I do think that hypovolemia/thick blood probably caused this, since they've scanned, stuck, ultrasounded and tested everything and found no "cause."

I am so sick of doctors.

[Sallysblooms]

I hope you stay stable and I send good wishes!

[Dizzysillyak]

I love the big brain comment about your doctor.

I see a doc who's well respected and in fact, impresses me continuoulsy with her quick and accurate evaluations of what's going on in me. She's an integrative doc who was a practicing MD before learning about holistic medicine. We're still working on the OI but I told her that I wanted to try exercising first ...

I find this interesting because I too have kidney problems just not the same one's that you do. It makes me wonder just what the urinary tract has to do with dysautonomia. Of course, our UTs are a part of this system but I'm not sure how it relates. Good to see that you have some good sources of info on all of this.

I have a history of kidney stones and I'll also get UTI symptoms from taking B supplements, especially B2. And I used to urinate frequently and leak all the time but since I started taking AZO with probiotics this is under control ... kow ...

I never tested positive for UTIs but since this treatment is working, I suspect that I had them anyways ... and it could be the probiotic in the AZO too. For some reason, my urinary tract isn't healthy.

Have you heard that people with kidney stones are missing a probiotic called o.forminges ?

Not that you have kidney stones but I think this speaks volumes about how probiotics can affect our urinary tracts. All of us women already know about how probiotics affect our female parts ... lol ... Not that it's funny but I also have vulvodynia (vaginal pain) which has responded favorably to the low oxalate diet.

O.forminges can't be replicated and sold at this point so the only way we're getting this is through some process that's occuring within our bodies.

Are you taking probiotics ? Also, I noticed that you're taking Klonopin and Theanine does the same thing but it's all natural. I use it for my noctural myoclonous ...

tc ... Marcia

[Noreen]

Hugs firewatcher -

I hope you are in good hands with this doc and there is no progression.

Why do you think sticky blood played a role in this? I am on plaquenil, aspirin and fish oil for 'suspected APS' as my labs have been abnormal for years.

[juliegee]

Hugs firewatcher -

I hope you are in good hands with this doc and there is no progression.

Why do you think sticky blood played a role in this? I am on plaquenil, aspirin and fish oil for 'suspected APS' as my labs have been abnormal for years.

Forgive me for butting in . I didn't know you had APS, Reen. What have been your symptoms so far? I'm being worked up now. My fingers and toes keep turning blue with suspected microembolisms.

Researchers are just beginning to realize how extensive kidney involvement is in APS (and other hypocoaguable disorders.) One study suggested that 1/3 of those DXed had some degree of kidney complications. Here are some links:

http://www.uptodate.com/patients/content/topic.do?topicKey=~fb0.34xpnuNCDlf

http://www.springerlink.com/content/m45691n37054362j/

http://www.suite101.com/content/antiphospholipid-syndrome-a33800

Julie

[ajw4790]

Hi Jennifer!

Sorry we have not "chatted" in a while... I haven't been spending a much time here on the boards lately. More because I am on overload with health issues than that I am feeling better and hitting the town. I am exhausted, but I saw this thread and wanted to comment. I hope I make sense!

First, I am sorry that you are having to go through this too on top of everything! Hopefully it will stay as stable as possible, and causes the least amount of problems possible. But, I am glad that your doctors caught it before it progressed.

Your dr. does not sound like they are the most supportive or proactive of doctors. Maybe over time you can find a different one that is willing to do more than read test results. Those drs. are super-frustrating!

I wanted to chime in here to not only send you my well wishes, but also with discussion of my own recent medical issues in that area... Hmm, where to start?

My gyne sent me to Urologist when I was having increased menstrual pain and bladder pain/cramps/contractions. Long story and semi-difficult to tease out what is what... Have you seen a Urologist? Anywho, first Uro. was a dud, second is much better. They have helped me to see that my shrugging of this occasional pain may not be too smart and are doing a good work up to see what all is up. So far I have learned that I have enlarged kidneys and a huge trebeculated bladder. I am still in the midst of the workup which has included urine testing, ultrasound, cystoscopy, and urodynamic testing (I hold insane amounts of urine- I almost overfilled their cup!). I still need to get my CT scan done and go back for my follow up appmt. to learn what all came from all this testing. I got a UTI from the cystoscopy and that has slowed me down from my already slow self. And I am working on adjusting to CPAP that I started a couple of weeks ago... Way to much medical crap!

Have you had any of these tests?

For me they were projecting that either this is my weird "normal" or that I have neurogenic bladder. He explained that the kidneys can become enlarged if the pressure in the bladder is too great and urine leaks back into the kidneys. This can then cause damage to the kidneys. So, I was not sure if they have looked at the possibility of structural issues or neurogenic bladder?

How did they test your GFR? Are you still taking prescription meds or only herbal meds? Any chance meds you took in past or current could contribute to kidney function? Any indication of a hereditary issue? what symptoms do you have?

I think that is all for now. Time to sleep... hope that made sense... I will try to check back tomorrow.

[firewatcher]

Hi Jennifer!

Sorry we have not "chatted" in a while... I haven't been spending a much time here on the boards lately. More because I am on overload with health issues than that I am feeling better and hitting the town. I am exhausted, but I saw this thread and wanted to comment. I hope I make sense!

First, I am sorry that you are having to go through this too on top of everything! Hopefully it will stay as stable as possible, and causes the least amount of problems possible. But, I am glad that your doctors caught it before it progressed.

Your dr. does not sound like they are the most supportive or proactive of doctors. Maybe over time you can find a different one that is willing to do more than read test results. Those drs. are super-frustrating!

I wanted to chime in here to not only send you my well wishes, but also with discussion of my own recent medical issues in that area... Hmm, where to start?

My gyne sent me to Urologist when I was having increased menstrual pain and bladder pain/cramps/contractions. Long story and semi-difficult to tease out what is what... Have you seen a Urologist? Anywho, first Uro. was a dud, second is much better. They have helped me to see that my shrugging of this occasional pain may not be too smart and are doing a good work up to see what all is up. So far I have learned that I have enlarged kidneys and a huge trebeculated bladder. I am still in the midst of the workup which has included urine testing, ultrasound, cystoscopy, and urodynamic testing (I hold insane amounts of urine- I almost overfilled their cup!). I still need to get my CT scan done and go back for my follow up appmt. to learn what all came from all this testing. I got a UTI from the cystoscopy and that has slowed me down from my already slow self. And I am working on adjusting to CPAP that I started a couple of weeks ago... Way to much medical crap!

Have you had any of these tests?

For me they were projecting that either this is my weird "normal" or that I have neurogenic bladder. He explained that the kidneys can become enlarged if the pressure in the bladder is too great and urine leaks back into the kidneys. This can then cause damage to the kidneys. So, I was not sure if they have looked at the possibility of structural issues or neurogenic bladder?

How did they test your GFR? Are you still taking prescription meds or only herbal meds? Any chance meds you took in past or current could contribute to kidney function? Any indication of a hereditary issue? what symptoms do you have?

I think that is all for now. Time to sleep... hope that made sense... I will try to check back tomorrow.

I have more like the opposite issue...I urinate too much and my kidneys are smaller than they should be. I've had a CT, ultrasound and more 24 hour urine collections than I care to count! She figured my gfr from several years worth of serum Creatinine measurements compared to several Creatinine Clearance tests. I've never had a urinary tract infection or stones. I'm in the midst of overnight oximetry to find the cause of a seriously elevated RBC/hematocrit with a low-normal EPO level. I'm still on standard meds combined with the herbal meds which are screened for cross incompatibility. I've never taken any nephrotoxic meds in the past, but do have a pseudo-family history of kidney disease: my Grandfather died from it, but he had multiple ongoing issues. I don't have any symptoms...yet, just symptomatic lab work.

I'm sorry that you are dealing with all your issues! I was hoping that you were well and living life. I hope your Uro can get you getter, I've known several people with kidney reflux and the testing is NOT fun! Be Well!

[Noreen]

Thanks for the links, Julie. I hope my eyes and migraines will cooperate and allow me to check them out. Of course then I will have to pray that my memory holds - lol. So tough to read an article and then not have a clue what it says.

I have livedico reticularis see picturewhich was my rheumy's first clue along with fatigue and cognitive complaints - my migraine history goes back to adolescence. I have miscarriages in my hx and clotting shortly after childbirth with my first son. My labs have run continually at brderline concern for several years. I am sorry I can't remember which lab the rheumy runs but no one is keeping track of INR currently. I was sent to a hematologist who said - "well you are an autoimmune mess"(he got me laughing hysterically with this honest comment) so he decided aspirin would be a better trtmt than coumadin currently. I think I have had microembolism in my thigh and possible TIAs but without doc confirmation. APS is a tough diagnosis to get because one of the criteria is having a stroke - I would rather not, thanks and am doing what I can to avoid one.

[juliegee]

Thanks for the links, Julie. I hope my eyes and migraines will cooperate and allow me to check them out. Of course then I will have to pray that my memory holds - lol. So tough to read an article and then not have a clue what it says.

I have livedico reticularis see picturewhich was my rheumy's first clue along with fatigue and cognitive complaints - my migraine history goes back to adolescence. I have miscarriages in my hx and clotting shortly after childbirth with my first son. My labs have run continually at brderline concern for several years. I am sorry I can't remember which lab the rheumy runs but no one is keeping track of INR currently. I was sent to a hematologist who said - "well you are an autoimmune mess"(he got me laughing hysterically with this honest comment) so he decided aspirin would be a better trtmt than coumadin currently. I think I have had microembolism in my thigh and possible TIAs but without doc confirmation. APS is a tough diagnosis to get because one of the criteria is having a stroke - I would rather not, thanks and am doing what I can to avoid one.

Aspirin & fish oil is a good combo and so much less fuss than coumadin- as long as it's doing the job. I don't have the DX, just one thing being considered. I did have a toe go blue this weekend while I was on PLAVIX. The ER gave me a shot of lovenox in my belly. If I do have APS, I'm making microembolisms (size of a grain of sand) that get through my heart & brain OK- just get stuck at my fingers and toes I'm very lucky to have the warning. I'm sorry you are a an autoimmune mess. I may be too- find out next Wed.

I've had the miscarriages, headaches, numbness on one side of my body, cognitive stupidity , breathing problems, livedo retuculus, pettachie (sp?), even possible Budd-Chiari syndrome (a 2 week hospitalization w/sky-high liver readings & no explanation.) It would explain a lot for me.

I hope you have a good rheumy/hematologist/vascular doc to manage this. I guess keeping track of that INR number is pretty important. You don't HAVE to have a stroke for the DX- sounds like you have plenty of history. I think you need to show positive antibodies for several months in a row- does that sound right?

Thanks for the info. Keep your blood skinny & stay safe

P.S. Sorry for hijacking your thread, Jennifer.

Julie