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Chronic Kidney Disease

LMD828
Posts: 26
Joined: Dec 2016

My husband is two weeks post op, after having a radical nephrectomy.  Today we met with a nephrologist to talk about adjusting to life with one kidney.  He pretty much assured us that my husband would have to live with Chronic Kidney Disease for the rest of his life.   He didn't offer many details, aside from monitoring blood pressure and following up with him in a month.  It wasn't a great appointment and I left with lots of unanswered questions. 

My biggest concern is IL-2.  We have a meeting with an IL-2 in a few weeks.  Will IL-2 still be an option with kidney disease?  We really thought we were on the right track and now I'm back to being terrified again.  

Anyone on here have experience with this?  Thanks!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

you are worrying about an imaginary scenario that hasn't happened. I have had 1 kidney for 6 years. I drink beer prn. I have been through il-2. My single kidney function is equal to that of a disease free 20 yo. Creatinin under 1.0. Gfr over 60.

LMD828
Posts: 26
Joined: Dec 2016

You've made me feel a little better.  I'm thinking we can learn to manage the kidney disease.  Pre-op Creatinin was 1.2 an it's up to 1.7. GFR is currently 44.    We are hoping it some of these level off to get a baseline.  

My concern was IL-2.   

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Beer PRN, I'm going to start using that.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I always use that as my stock answer when asked about alcohol consumption. Intake nurse high 5'd me when I had a myelogram...Unfortunately my beer appetite is at an all time low these days. And I need the calories. But that's ok. I'd rather deal with the munchies. It's funny because mmj is on my med list but no one has ever inquired about my usage.

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

LMD,

I can't help you with the IL-2 concerns. I too see a Nephrologist for CKD Stage 3.

Unfortunately our kidney function numbers are lower than our 2 kidney brothers and sisters. One observation from my Nephrologist is that those patients who have lost a Kidney from RCC tend to do better than other patients with the same lower kidney function numbers caused by other contributers to kidney disease.

 

 

Icemantoo

mrou50
Posts: 389
Joined: Mar 2013

Did the doctor say your husband had kidney disease, or did he say it was possible?  I have had one kidney for three years and my kidney is doing just fine.  I do have it monitored and me with the nephrologist who is part of my cancer team every six months and I get labs done every three weeks to see how the kidney is functioning.  I would not worry about kidney disease unless he has been diagnosed, as for IL 2 the doctor administering IL 2 will determine if your husband is strong enough for it.  Good luck.

Mark

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

In the future, if questions pop up during an office visit, ask them to explain and if you still don't understand, have them explain again.  I have personally found that is the best way to avert the anxiety.

Donna~

LMD828
Posts: 26
Joined: Dec 2016

I totally agree -  it was clearly not the appointment I was anticipating.  I will prepare better next time!

donna_lee's picture
donna_lee
Posts: 1015
Joined: Feb 2009

It's a term used by some Dr's to scare patients.  My husband had 2 kidneys and was sent to a Nephrologist because his eGFR and Creatinine levels by lab tests indicated CKD.  His was a Stage 3.  We finally made a dent in that hard head of his and he quit salting everything before tasting it.  For someone who had butchered deer, elk, beef, and all sorts of other animals, he didn't realize that ALL fluids in the body were filtered by the kidneys.  His CKD was stabilized at Stage 3 and he's OK.

I sometimes think docs get a sense of empowerment when they can floor a questioning patient or spouse.

Hang in there.  and Hugs

donna_lee

I had already had 1 kidney removed (10 1/2 years ago), and I am also at Stage 3.  Everything is under control and I asked the neph. He said as long as it was stable to not worry.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Just because you have one kidney doesn't mean you have CKD. It depends on your kidney function. There are different stages depending on your GFR. Quite a few of us, like Fox, have normal kidney function with one kidney because they other one works great. I have Stage 3 CKD, because my GFR is like 40. Honestly I can't remember the exact value. My creatinine tends to be 1.5-1.8. This is just slightly reduced kidney function.

I see a nephrologist every 3 months and she does tests to make sure my kidneys are ok. I don't think I need to see her that often but I like her.

High BP can damage the kidneys, so keep a watch on BP. If you take BP meds, make sure they are working and keeping your blood pressure in check. If you have BP issues, monitor it regularly. Don't overeat protein. Excess protein is hard on the kidneys. Limit salt. That's also related to BP. Drink a lot of water. Personally, I avoid alcohol, but I do have occasional beer or wine. I wouldn't go crazy with the alcohol. I doubt a beer or two or a glass of wine or two a day hurts, but regular, high alcohol use is probably bad for your kidneys. Smoking is bad for your whole body. Exercise regularly. That's good for your BP and kidneys. Lose weight.

My kidney function seems to have improved and so did my BP after losing 25 pounds.

But really, there's not a whole lot to do or worry about with regards to the kidneys. If your husbands creatinine is in that range, it's not too bad.

The IL2 people are used to giving it to people with one kidney. If your husband's kidney function is really bad, they probably wouldn't even give it to him. But I think you're way, way far from that situation so I wouldn't worry about it.

Hope it helps.

Todd

LMD828
Posts: 26
Joined: Dec 2016

Thank you, Todd.  

BP is a slight concern but I think it something we can work on reducing with diet and exercise.   I am learning more and more about creatinine & GFR; doesn't appear to the the doom & gloom picture painted yesterday by the nephrologist.  I was intimidated by his news & attitude - I am frustrated with myself for not asking him to clarify lots of what he said.  Lesson learned.  I will be armed and ready for all future appointments.  

You seem to have real insight into this scenario and I really appreciate your response.  Have a great day!

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

"My biggest concern is IL-2.  We have a meeting with an IL-2 in a few weeks.  Will IL-2 still be an option with kidney disease?  We really thought we were on the right track and now I'm back to being terrified again.  " -My positive thoughts go out to you guys.  I've had no experience with IL-2.

I was diagnosed with rcc, had a nephrectomy in 2003, and continue to survive with ckd stage III and other problems.  I am frustrated with pain, fatigue, nausea, edema, etc.  I want natural treatments that can go along with medical treatments.  I worry about prices, doctors who refuse to look at the research I have done through the Mayo Clinic, MD Anderson, Johns Hopkins, etc. & other tumors that popped up.  How do you all relax (yoga, meditation, massage, screaming until you feel better)?

Kidney_Cancer_Kid

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

IL2 is actually a vote of confidence: they dont give it to anyone if they are not healthy enough. It can be tough but it gives kidney Cancer a real good kicking. I dont know anyone who has had IL2 who wouldnt do it again in a shot.

As for Chronic Kidney disease; what does that mean. Chronic just means time, it has nothing to do with intensity. 

I'll say again write down questions you want to ask, if you want leave spaces and write down the answers. I'll tell you the truth I dont worry about all these numbers unless the Dr tells me too. Like Fox, I enjoy a beer, and a glass or four of wine at the weekend.

Stop worrying and just live your lives. Thats what they're for after all.

As always: Good luck and DONT PANIC.

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