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Living with one kidney

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

On my daughters 12th birthday, I was diagnosed with a large mass in my left kidney that was diagnosed as stage 3 cancer and required a radical nephrectomy.  Fortunately, it was confined and there was no evidence of spread to the surrounding lymph nodes so I will not  need further treatment, just scans to watch for recurrence.  I am extremely grateful that they caught it before it spread and that the risk of recurrence is low (33%).  However, as grateful as I am, I am still struggling with the diagnosis and the unknowns of the future.  I never gave much thought to my kidneys and now I am terrified to only have one.  My urologist suggested I see a nephrologist to learn how to take care of my one remaining kidney.  Has anyone had to do this?  What should I expect?  My urologist initially told me that I could live a long healthy life with one kidney (and he told my husband and I that I would not need radical lifestyle changes...that this just happens, no cause)....but I am concerned about what the nephrologist will say.  I know someone that had one kidney fail (unknown reason, not cancer) and he had to drastically change his life (can NEVER drink alcohol, no red meat, no chocolate, no popcorn, etc).  Has anyone that had a radical nephrectomy had to see a nephrologist and were there drastic changes to diet and lifestyle?  I am only 50 so I am relatively young and while I will do whatever I have to do, spending the rest of my life with those restrictions does scare me.  Can anyone who has been through this offer any guidance?

CancerFreeSunny
Posts: 31
Joined: Sep 2018

I had a Radical Nephrectomy in 2005 and I was told I could live with just one kidney. I honestly never had any problems with having one kidney and I was not told to avoid popcorn or red meat. I was never a heavy drinker but if I had one drink, it would not be any different than if I had two kidneys and a drink. What happened to me in 2019 was in no relation to my solo kidney. I went into kidney failure (due to Crestor) and it destroyed my only kidney. I am now on dialysis. (2 years now) Once again, having one kidney had nothing to do with my kidney failure. Had I had two kidneys, the Crestor would have damaged both kidneys. I urinated normally with just one kidney. Now because of kidney failure, I don't urinate the volume that I used to. I was never told to alter my lifestyle. I was not told that I needed to see someone to find out how to change my lifestyle. I just went on with my life back then. :)

icemantoo's picture
icemantoo
Posts: 3334
Joined: Jan 2010

A lot of things go into Kidney Function, 1 of which is loding a Kidney. Sure you r nombers will change a little, but many people start with one. Stay away from Women's wrestling for now.

 

 

 

 

 

icemantoo

AliceB1950's picture
AliceB1950
Posts: 113
Joined: Jun 2019

I've had one kidney since 2018 and I'm doing fine. Expect your lab numbers to jump around a bit for a few years as your kidney adjusts. I see a nephrologist once a year just to check in. At my last appointment in March (by phone) she told me that based on my latest numbers, no doctor could tell I have only one kidney without looking at my surgical records. I haven't changed a thing in my diet, I just am a bit more concientious about my liquid intake. As another doctor told me, just think of all the people who donate kidneys and go back to living normal lives. If you don't watch American Ninja Warrior, I suggest you check out the most recent two or three seasons. One of the top competitors is a kidney donor, so living with one and doing super fine.

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

Thank you!!  I did think about the donations but wondered if it was different because my kidney was diseased.  I am happy to hear that your nephrologist did not put severe limitations on you...it helps put my mind at ease!

cubsfan9
Posts: 68
Joined: Oct 2013

Good Morning!

It is very scary to be told you have cancer and to lose an organ!

My husband had his kidney removed 16 1/2 years ago at age 54.  He has not had to make any 'drastic' changes in his diet or lifestyle as a result.  Yes, he sees both a urologist and nephrologist in addition to his oncologist (he has metastatic disease and is on Sutent).  His kidney function is monitored (blood and urine tests) and has remained pretty stable and close to 'normal' numbers.  Alcohol...not a drinker, so I can't address that.  He is somewhat careful about his salt intake, but doesn't go crazy over it.  (He continues to put salt on his food, eat potato chips...).  He eats pretty much whatever he wants, including popcorn, chocolate, some red meat.  A healthy diet and common sense.

Drinking lots of water is important!  Talk to your doctor about how much you should drink daily.  And, do get those follow-up CT scans!!  Kidney cancer can be sneaky and it is important to keep an eye on things.  Not everyone has a recurrance, but my husband's showed up after 8 years of "clean" scans.

 

eug91's picture
eug91
Posts: 315
Joined: Jan 2019

Welcome tgpath. Sorry you had to join us, but this is a great forum here. Congrats on getting through your nephrectomy and becoming a cancer survivor. We're in the same boat as you, so we know what you're going through. 

My story is similar to yours. I had a radical left nephrectomy three years ago. I was a little worried about what life would be like with only one kidney, but then started asking around and heard only positive stories. I had a cousin who lost a kidney, and then went on to live another 55 years after. And my doctor explained that your one remaining kidney will grow bigger and stronger to compensate for the missing second kidney. 

As the others above have said, the important thing is to take care of the kidney you have. Drink plenty of water. All the general stuff you hear about good health will be good for your kidney - drink water, eat healthy foods, exercise, watch things like your weight/blood pressure/sodium/etc etc. My doctor said I didn't have to give up stuff like red meat or alcohol or carbonated sodas - just don't over-do it and moderate their intake, like any healthy person should. 

[Side rant: when I told many of my friends about my kidney cancer, I got several of the same reaction: "OH NO. YOU CAN'T DRINK YOURSELF STUPID NO MORE!" Uh, first off, that's the liver - not the kidney. And second off, how much black-out drinking do my friends think I do? Don't answer that - I don't wanna know...]

Honestly, other than trying to live healther, the only major change that I needed to make since my nephrectomy was to switch to Tylenol for pain relief and stop using ibuprofen/Advil - which was not a big deal at all.

As my doctor told me, it was bad luck that I got cancer, but good luck that I got it in an organ that I have two of and only need one to live. If you look at it that way, think positive - we dodged a bullet. 

With your annual follow-up visits, just keep an eye on your kidney health - your GFR and such. As long as you drink plenty of water and stay healthy, you can keep your one kidney in good health for a very long time. 

Hope this helps! 

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

My doctor said almost the exact same thing...bad luck but luckily I got cancer in an organ I have two of!!  It doesn't really make me less scared  but I think as I adjust over time, that will ease.  

I don't plan to black out drink but I would like to enjoy a cocktail on vacation or at a party.  I have eliminated dark colored soda for now because I read that phosphorus is bad for the kidneys.  Ironically, my blood pressure had crept up (not alarming but enough that my pcp was watching it) so I had already started watching my sodium intake.  Now, I think the blood pressure may have been from the mass in my kidney.  My doctor did tell me that ibuprofen is forever out, which is fine.  I switched to Tylenol and I'm good with that. I have also only heard positive stories, which is amazing and I am grateful for.  Thank you for your feedback...it's exactly what I needed to hear to be prepared fro the nephrologist.  

eug91's picture
eug91
Posts: 315
Joined: Jan 2019

After my kidney got taken out, we ended up having to cut my blood pressure medication way down to adjust. Same as you - the bleeping tumor was definitely causing my blood pressure to be much worse. 

Anyways, raise a cocktail to your continued healing! You're doing great!

CancerFreeSunny
Posts: 31
Joined: Sep 2018

You are very correct that dark cola contains phosphates and I am forbidden to drink that. (I actually prefer orange, grape and rootbeer) When you have a poorly functioning kidney, you have to watch your phosphates (which is dairy, dark cola, yogurt, whole milks/2%, chocolates and no organ meats) You also, if you have a poorly functioning kidney, have to watch your potassium (potatoes, beans, oranges, orange juice, etc.) It is also correct that Kidney patients should only take Tylenol. The Aleve, Baclofin, Nsaids, Ibuprofin are forbidden and Anitinflammatory drugs can hurt your kidney or if you have a poorly performing kidney, then none at all should be injested except Tylenol. 

AliceB1950's picture
AliceB1950
Posts: 113
Joined: Jun 2019

That's pretty extreme. I had one bout of high potassium a couple years ago, and had to restrict foods for a few weeks, but once the problem was resolved (thanks to a prescription liquid whose name I've forgotten - it was like a small gritty milkshake) my potassium numbers have been fine. I have no dietary restrictions and until one of my doctors tells me to eliminate certain foods or beverages, and why, I see no reason to change what I'm doing. A lot of internet advice about what not to eat is for people with kidney disease, not those of us who have had a full or partial nephrectomy due to kidney cancer. They're two completely different conditions (although they can overlap in some people).

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

That was actually one of my questions....you are correct that most restrictions refer to CKD.  Do they consider cancer/radical nephrectomy CKD?  My oncologist indicated that the odds of cancer in my remaining kidney are extremely low...he said it does not jump.  So if my remaining kidney is healthy, I am not sure CKD is a risk.  I am sure the nephrologist can shed more light on this but I can't get in until September so I'm trying to navigate this on  my own until then.  

AliceB1950's picture
AliceB1950
Posts: 113
Joined: Jun 2019

My nephrologist told me last year (the first time I saw her) that number-wise, I was looking like stage 3 kidney disease - but that was perfectly normal for having one kidney, and it's not the same as having two diseased kidneys. And like I said earlier, my numbers have improved a lot since then. The first few years, there will probably be fluctuation in your numbers as your body adjusts. Don't freak out, just follow any advice your doctors give you.

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

Thank you all so much!!  I am so happy I found this forum of people who have been through this!  I know that I got lucky that they found it before it spread and the prognosis is good...but real stories from people that have been through it help me more than anything a doctor can tell me!  I'm still recovering from surgery on March 11th so this is all so new and scary to me!  But you have all helped me so much already!! THANK YOU!

donna_lee's picture
donna_lee
Posts: 1003
Joined: Feb 2009

with a group of classmates at lunch today (60 years since HS grad), the woman next to me said her oldest daughter was born with only 1 kidney, is now 50 and doing fine. That's a slightly different story, bacause the kidney will increase in size as the child grows.

Mine was removed at age 64, and the eGFR has been going down with age. My PC Doc sent me to a Nephrologist.  So I needed to drink more water, eat more protein and vegies, keep my weight and BP down and live my life.  It's been 15 years since Dx and I feel great for my age.

Hugs and good luck,

donna_lee

 

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

Thank you! I love the positive stories...it helps calm my fears!  I can't see the nephrologist until September so I am curious what amount of water you were told? I currently get a minimum of 64 ounces per day, which is normal recommendation.  Does the nephrologist indicate more?

donna_lee's picture
donna_lee
Posts: 1003
Joined: Feb 2009

That's about right.  I usually have 1 cup of coffee in the morning, and several "mouthful sips" during the day, in addition to the 16 oz container I fill either at work or home.  You're off to a good start.

If you click on user names, and they have posted their back story, you can see what many of us have been through over the years.

Again, keep on being positive and all best wishes.

donna_lee

Deanie0916
Posts: 403
Joined: Nov 2016

I also had a radical nephrectomy in 2016 and I'm doing well. I agree with what Eugene said, in my case the only thing I've really changed is switching to Tylenol and cutting back on sodium trying to drink more water. Keep us posted! Best wishes for continued recovery and good health!

Deanie0916
Posts: 403
Joined: Nov 2016

I also had a radical nephrectomy in 2016 and I'm doing well. I agree with what Eugene said, in my case the only thing I've really changed is switching to Tylenol and cutting back on sodium trying to drink more water. Keep us posted! Best wishes for continued recovery and good health!

Mmoses25's picture
Mmoses25
Posts: 114
Joined: May 2020

I only lost part of my kidney im stage 3 been doing this for a year now  the scary part will ease up your going to do great if you have any question just post on here these guys are great to talk to good luck to you and hope to talk to you again

Joe66
Posts: 1
Joined: Sep 2018

I had a nephrectomy 53 years ago and my other kidney is still going strong 

tgpath1's picture
tgpath1
Posts: 24
Joined: Apr 2021

Wow!!!! That is insprirational!!  Thank you for sharing and I am so happy to hear you are doing well!

jazzgirl's picture
jazzgirl
Posts: 196
Joined: Nov 2017

Hi tgpath, I was born with one kidney and did not even know it until way into my thirties. My lab numbers were always fine. Then five years ago, they found a tumor on my right kidney. That caused some panic. I had an open partial neprectomy and was really strict for a while with nutrition. As my labs stay stable and my nephrologist continues to calm and reassure me, I've loosened up some of my strict rules. Never anything as strict as in your first post. I still stay away from movie popcorn (make my own and season with non-salt stuff) and processed meats (no more salami, corned beef, hot dogs, alas), and I try to be moderate in all things. I do love red wine and chocolate (stub has seen me down a chocolate sundae...). So you are doing great with one healthy kidney - take it a step and a lab test at a time and you will find what works for you. Take care ~

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