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Author Topic: OMG I HAVE CKD  (Read 1082 times)
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« on: February 03, 2016, 03:45:41 AM »

Hello one and all. My name is Anca, I am a mom of 2 boys ( 27 & 10) and we all live together along with my mom in Corona California....
So in May of 2015 I landed in the hospital with acute heart failure due to uncontrolled high blood pressure ( my fault as I knew but just didn't take the meds... :Kit n Stik; ) . Well to my surprise and annoyance I not only got a visit from the cardiologist  but a neph. as well....I thought it was just Kaiser being overzealous, I did not understand the severity of what was going on, until, a few weeks later when I went to a class about CKD and then it hit me like a ton of bricks.....
In the hospital my GFR was at 22, a week later it dipped to 17 and now it has stabilized between 27 to 32....
I found out about this site from the Kaiser class I mentioned before....this is a Godsend...a wealth of information that in powers and arms with the knowledge needed to help navigate through the various stages of this disease.....
I look forward to seeing everyone in the forums.....

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When all else fails run in circles, shout loudly

« Reply #1 on: February 03, 2016, 04:31:20 AM »

Welcome to the site Anca


I'm sorry this is happening to you.

Take care, Cas

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Michael Murphy
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« Reply #2 on: February 03, 2016, 12:08:01 PM »

Well, I welcome you to the wonderful world of CKD, for this war I did not volunteer i was drafted.  However you have not started dialysis and my hope for you is many years go by before you have to start. That being said dialysis is not as bad as I thought it would be the only thing is it is forever with no time off for good behavior.  Personally I would rather go to dialysis then go to the dentist.  The important thing is to learn all you can since this disease feeds on ignorance.
« Last Edit: February 06, 2016, 10:31:37 AM by Michael Murphy » Logged
Vt Big Rig
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« Reply #3 on: February 04, 2016, 09:52:40 AM »

Welcome to the site.

You will find compassion, laughs, companionship, folks who have experience almost everything related to D and (sometimes) aggravation.

Enjoy the journey.

Best of luck to you.

VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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« Reply #4 on: February 06, 2016, 05:17:05 AM »

Hello Anca, and welcome!

I'm so sorry to hear of your experience and diagnosis. Taking blood pressure meds to keep your BP under control is now critical for both your kidneys and heart. Fortunately popping 1 or 2 pills a day is one of the easiest things you can do. I'd invest in a home BP monitor, if you don't have one, so that you can keep a good eye on your daily BP movements because when doctors take our BP in their offices we can be quite nervous and that is when our BP can be temporarily raised (the white coat syndrome).

This site is great but it really caters for people on dialysis and tends to discount the concerns and worries that people have when in CKD. This is pretty much how the renal medical industry treats us as well. There is a bit of myth going around that only when someone is very near to dialysis will they have health problems and symptoms. But from my experience, declining kidney function brings with it a lot of weird confusing symptoms and sensations. The kidneys can have acute attacks of all kinds along the way which Nephrologists often don't understand. Our kidneys are responding all the time to the foods, medicines and environmental chemicals it is exposed to. They work hard but sometimes they can have real hissy-fits.

I'd be especially on guard from now on with regards to exposure to prescription drugs like NSAIDs & other analgesics, antibiotics, contrast dyes used in CT scans, pre-surgery phosphate prep solutions and all other nephrotoxic substances. There are a lot of drugs that are primarily excreted by the kidneys. They are therefore much more of a danger to the kidneys. Many doctors who are not renal specialists will routinely prescribe drugs that are not ideal for the kidneys. Be on guard with this, especially when dealing with your cardiologist.

I am glad that your kidney function seems to have improved and stabilised. A renal nurse recently told me that someone at Stage 3 CKD may never progress to D. I don't know how accurate that may be but if it is possible, I hope you may be one of those lucky people who will not progress to end-stage renal failure.

What BP meds are you on? What other treatment, if any, are you needing for your heart? Do you have any other medical conditions?


Find Cure for CKD now! Please like my facebook page of the same name. Thank you.
Michael Murphy
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« Reply #5 on: February 06, 2016, 10:37:53 AM »

Athena response is perfect, I would take her advise to heart, while hard it's better then being on dialysis,  Advil, Ibuprpphen is a kidney killer, avoid it at all costs, watch your BP like a hawk, speak to a renal dietician about diet changes, with luck and perseverance you can give your remaining kidney function a chance and help put off ESRD.
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