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acute renal failure - SECOND TIME!

Posted: Mon Mar 17, 2014 7:34 pm
by dianne052506
Maybe it's my choice of TV shows, but I always thought that acute renal failure was a cause of death that was listed on a death certificate, not something one could recover from, especially twice.
Apparently my kidneys are very vunerable now, weakened by 100+ doses of Avastin over almost 8 years and all the instances of proteinuria that has caused; by 40-50 CTs with IV contrast, especially those every-6-weeks scans like I've had since August 2012 while on the clinical trial; and by two separate instances of dehydration since the first of the year - one in January after my last IV contrast, and again in February with pneumonia. I had been fatigued and nauseous a lot lately, trying to drink enough, but having trouble keeping food down.
Anyways, got up last Thursday morning, stumbled to the restroom, and -- nothing. My kidneys had stopped working. I had a 9 a.m. appt for radiation, so I went on to that, and stopped by to see the radiation oncologist afterwards. He sent me straight to the emergency room. It took 3 days of pouring IV fluids into me to get any output from the kidneys. In the meantime, my body swelled so much my skin started to crack, and my creatinine rose to almost 9 (typically 0.9 for me). Finally things started turning around, although it took 8 1/2 days before I got to come home. The hospitalist, plus one nephrologist, wanted to put me on dialysis; the older and wiser nephrologist insisted we keep to the course and stick with the fluids a while longer.
I've never been that scared for myself before. Being in the hospital, and watching things go downhill those first few days was terrifying. My family and my priest kept me from going insane.
I'm not sure what's next for me. While in the hospital, I finished radiation treatments on the lung nodule that caused the pneumonia. Another 3 weeks and we'll do a scan (WITHOUT contrast) to see how things look. In the meantime, I'm getting blood work every week to keep an eye on kidney function, but I'm not pushing for them to run a CEA. Knowing that number won't change anything. Right now, my body isn't up to any treatment. The research onc and my onc had each previously talked about another trial, but I'm not sure if I would be allowed on one if I can't have scans with contrast now. My onc had also talked about returning to irinotecan, but with the severe nausea and diarrhea that it causes for me, I no longer think that is an option.
I tell friends and family that I have had my share of miracles over the years, and I truly believe that. Right now, though, my body needs rest and recovery before I can even contemplate what's next.
Best wishes to all, and prayers for pain-free times,
Dianne

Re: acute renal failure - SECOND TIME!

Posted: Mon Mar 17, 2014 8:42 pm
by chrissyrice
Wow that is amazing.
So glad you keep getting miracles and lots of liquids :wink:
Hoping you recover and stay away from that contrast if possible.

Re: acute renal failure - SECOND TIME!

Posted: Mon Mar 17, 2014 9:05 pm
by CRguy
I would say you are the poster child for A.R.F. .......... "kids, do not try this at HOME !!!!" :shock:

The contrast agents are certainly a huge risk factor, as is dehydration and use of any kidney "unfriendly" meds.

When my Dad was having only "moderate" kidney issues on chemo, the Rads wanted to continue to do contrast CT scans ( with added acetylcysteine -Mucomyst- which has some renal protective action when contrast is used. ) We said no, they pushed, we got the Onco to step in and we all flatly refused contrast at that time.
Radiologists bitched and whined.... BUTT we did not care a hoot.
The scans can be read just fine without contrast.

Your body, your choice.
Yes the enhancement is valuable ...... BUTT not worth your life, if your kidneys totally shutdown.

Harmony
CRguy

Re: acute renal failure - SECOND TIME!

Posted: Tue Mar 18, 2014 7:08 am
by Ron50
Hi Dianne,
I know how you feel. It has taken me 15 years post chemo to finally reach nephrotic syndrome. They have taken three biopsies of my kidneys but still have not come up with a diagnoses. My nephrologist has tried me on most of the milder mannered immune-suppressants like prednisone and methotrexate. My protein loss hovers around three grams a day so it was not quite into nephrotic syndrome. I caught parainfluenza last November. It thumped hell out of me . My heart was leaking troponin and I was fighting off double pneumonia and asthma. I eventually recovered and they cleared me of a heart attack. I did a twenty four hour urine collection in late November ,my protein loss had jumped to seven grams. My neph bit the bullet and put me on to cyclosporine immediately. I have been on it ever since. My protein loss is starting to drop. Stranger still for years my liver functions have always been in the red , slightly elevated. Now on cyclosporine they have remained in the black. My neph is starting to think that I may have been suffering mild , chronic auto- immune hepatitis. It is normally treated with Imuran or cyclosporine if that does not control it as well as prednisone. My neph suggested a hit with prednisone but eight years ago I was on 75mg a day for eighteen months . It did not help my kidneys but it did tip me into type two diabetes. Cyclosporin elevates my blood sugars so I don't intend to make them higher with pred. My official dx is auto-immune disease of an unknown nature accompanied by severe motor-sensori peripheral neuropathy also of an unknown cause. As a result I am ineligible for transplants. If I lose my kidneys I am on dialysis for life. If I lose my liver I don't have much to worry about at all. Good luck with your continued treatment.. Ron.

Re: acute renal failure - SECOND TIME!

Posted: Tue Mar 18, 2014 7:17 am
by Bev G
Dearest Dianne,

I felt so sick for you reading your post. Twice in acute renal failure! Incredible. I know you must have been absolutely terrified and am so happy for you that you recovered. I know I think about all the dye I've gotten (I think about 20 scans now, but nothing like your 40!!), particularly as my kidneys are a bit vulnerable from such a long history of type 1 diabetes, but so far so good.

I will hope and pray that your recovery from this is absolutely complete, and fervently wish it will never, ever happen again.

Love,

Bev

Re: acute renal failure - SECOND TIME!

Posted: Wed Mar 19, 2014 8:16 am
by Maia
You already know how I feel, dear (((Dianne))). Sending love for recovery... now!

Re: acute renal failure - SECOND TIME!

Posted: Wed Mar 19, 2014 10:43 pm
by jeanette57
That happened this January - had the kidney doc get me out of the hospital. 12 IVs and no output - yes so swollen. She gave me a shot of Lasix and started me on spironolactone and 500 units of magnesium. It took 3 weeks to get kidneys to fully kick in and work perfect. I now can NOT eat anything with Potassium :) . I am not going to allow contrast on my mri and ct. oh well.

Re: acute renal failure - SECOND TIME!

Posted: Thu Mar 20, 2014 1:00 am
by skypup
Dianne, like Bev, it just hurts me to read your news. You have really been through it! I am hoping and praying you catch some more breaks now!

I am so thankful once again for this forum. I didn't know the contrast was so dangerous, or that the CTs could be done without contrast. So many things I wouldn't know without this place.

Hugs to you, D!

Re: acute renal failure - SECOND TIME!

Posted: Thu Mar 20, 2014 1:50 pm
by Guinevere
That's amazing that you could recover at all from something like that! Will be more specific in my prayers for you.

God bless ~
Gwen

Re: acute renal failure - SECOND TIME!

Posted: Thu Mar 20, 2014 8:34 pm
by gep
Dianne,
Eli hit that almost kidney shutdown when he tried to go back on folfox. It's a scary thing but he recovered, too, and went on to some more limited chemo and a clinical trial. My thoughts are with you.
Gloria