Just told that I have Kidney failure

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Jodel
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Date Joined Jul 2013
Total Posts : 8
   Posted 7/22/2013 2:23 PM (GMT -7)   
So I went to the Doc last Friday and was told that I am in kidney failure. My GFR is 18.  She says that I will have to start dialysis when it hits 15.  Of course she did not have time for questions. So she scheduled an appointment for next month with a counselor and more labs.          
This all came as quite a surprise to me.  My primary care doctor did not bother to send me to a Nephrologist even though my creatinine  has steadily gone up for the past four years.
Right now I am worried, scared and have no idea what to expect.
 
 Will I be able to work once I start the dialysis? 
 Will I be able to drive myself to and from?
 Do I need someone with me?
 Should I start any kind of special diet yet?
 

Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 7/22/2013 5:50 PM (GMT -7)   
I am so sorry Jodel, check out nephcure.org there is a lot of good info there. Get new Dr.'s if possible. I wish you all my best.

Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 7/22/2013 5:51 PM (GMT -7)   
Are you on medication?
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.

Jodel
New Member


Date Joined Jul 2013
Total Posts : 8
   Posted 7/23/2013 12:56 PM (GMT -7)   
I am on a ton of meds for heart, blood pressure and gout. But nothing for the kidneys. The Nephrologist took me off of the Metformin for the diabetes. She also had me get some support stockings due to the extreme swelling in my feet and ankles.

Gizzy'n me
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Date Joined Jun 2013
Total Posts : 1870
   Posted 7/23/2013 6:48 PM (GMT -7)   
To Jodel ...
 
   I certainly agree ..... "get new Drs. if possible"!
 
   I was in the hospital three times from January 2011 to June 2012 - and each time it was kidney related. The first time in was with a 911 call from my home. When being wheeled in from the emergency vehichle at the hospital, I passed out - and I was out for over 24hours.
   My daughter tells me that I was given dialysis twice during that timeframe, in addition to being on life support. And of course, before the dialysis, a port was placed in my chest. Within a few more days, I was given dialysis one more time - this time while conscious.
   My Primary Doctor called in several other doctors - and they did decide if certain conditions were met within a few more days, they would try something other than dialysis. As it turns out, three months after I was released, I went back in to have the port removed - since they felt I would no longer need to even consider dialysis.
   Most of what was done was rest and then a renal diet.
 
   A year later, I was back in the hospital with what they refered to as "kidney failure". This time, they placed nefrostomy tubes on each side of me - left and right kidneys. I was in for about two weeks - and then another two weeks in a rehab facility. Note - I live alone!!!
   My kidney problems were directly caused by my advanced prostate cancer blocking the kidneys from the bladder ... so much of my hospital time the second time was for many tests.
   about three months later, the nefrostomy tubes were removed - I guess thinking I would be OK. Within a month, I was back in the hospital with a creatine level of around 14, as I recall. Within 8-days, the creatine level was brought down to reasonable levels ... and a nefrostomy tube was put in for my right kidney and an internal stent for my left kidney.
 
   That was 13-months ago, and my kidneys have been OK since. Both the nefrostomy tube and the stent have maintenance requirements - needing to be replaced about every 4-months. But ... NO dialysis!!!!!
 
   Please check alternatives. There may even be other alternatives better than what I've mentioned. In my case, advanced prostate cancer did the damage. Maybe ....... that allowed other options for me. But check out the options.
   What was given to me as a scenario for dialysis was likely ... either two or three times a week for the treatments - and the treatments are time consumming (two to three hours per treatment + travel time). The one time I had dialysis while I was awake, there was no pain in receiving it ... but it's a huge time commitment.
 
   Good luck on search for a new medical team. My cancer profile is given below - for your info and if needed, for comparison.   
   To make a long story short ... the nefrostomy tubes  
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years
Casodex first - then Lupron from mid-2011 to current
Zytiga from January 2012 (5-months) - PSA increase
Prednisone from early 2012 & Xgeva from mid 2012
Taxotere from August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-weeks) - PSA from 12+ to over 23
Xtandi start - late June 2013 ......

Jodel
New Member


Date Joined Jul 2013
Total Posts : 8
   Posted 7/24/2013 12:31 PM (GMT -7)   
Well I just got a call today from the Nephrologists office. They want me to go to my Cardiologist ASAP. They got me worked in for Friday. (Hmmm, day after tomorrow.) Gee, lets scare this old broad even more. The only thing she said was that they need to change some of my medications and do an EKG.
My Primary Dr. and the Neph'. are within the same group/clinic. So I am hoping the Primary will give me a referral for a new Dr. outside of the group.
BTW. For the last two days when I urinate, I only pass about a spoon full. ( about four times a day)
I told the nurse today, but she did not seem alarmed. ?????

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/25/2013 8:15 AM (GMT -7)   
So sorry you are going through this.  The not uriniating much is probably due to the problems with your kidneys, they are not filtering correctly and your body is retaining fluid, which is why you are swelling up in your feet and ankles. Laying down helps relieve the pressure by distributing the swelling.  Leave a message for the Dr. that you are only urinating that much and if no response or not what you want, contact your primary care Dr., find someone else in your medical ins. network and make your own calls and you tell them you want a referral.
 
The blood pressure medications are typical for kidney patients it helps slow down the kidneys because they work extra hard because your glomeruli are not filtering correctly.  My Doc says its like an 8cyl engine running on 4 cyl's.
 
Have you been diagnosed with FSGS or something else for your kidneys?  I'm sorry I do not know anything about EKG's.  Get a notebook and write down all your questions and bring it with you, it really helps. 
 
Best of luck tomorrow.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 7/25/2013 10:01 AM (GMT -7)   
To Jodel ...
 
   If you're going to a cardiologist and they're talking about an EKG ... don't be concerned about it. If you've never had one before, it is completely painless, does not take much time and is not threatening at all.
   It's just a line graph representation of your heart beat. Since I had a slight heart murmur when I was a kid, I've had over two dozen EKG's - just to check the eveness of the heart beat. It is a very routine and simple procedure, and I can't figure how it could be related to the kidneys. It's a typical part of an annual exam once getting to a certain age - even if there never was a problem with the heart.
 
Best of luck to you.

Jodel
New Member


Date Joined Jul 2013
Total Posts : 8
   Posted 7/25/2013 3:20 PM (GMT -7)   
Thank you Gizzy & Beth. Guess I will find out more tomorrow.
A friend that is a retired LPN says they may be thinking about placing a "renal stent".
Well I am not even going to think about it tonight. I need to just let the cards fall as they will.
But yes, I DO intend to seek out another Primary Dr. He should not have waited 4 years to send me to a specialist. (?)

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 7/25/2013 4:18 PM (GMT -7)   
To Jodel ...
 
   I have a renal stent. If it is suggested by a Urologist, and you want some info ... just let me know. By the way, it has worked for about 13-months now for me - and they do need periodic replacement - a fairly simple out-patient operation.
 
Best of luck to you ... 
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