Left kidney removal question/advice

Posted by canadianmomma @canadianmomma, Dec 18, 2023

I am 39, married and have 3 kids, and will be having my left kidney fully removed on Jan 12, due to a large tumour on my kidney. A biopsy wasn’t able to be done prior due to the location of the tumour. Can someone help me with some advice for recovery? I’m very scared and nervous. The drs are 90% sure it’s cancer, but won’t find out for sure until 4 weeks after surgery, and then they will make a game plan after depending on results. I don’t really have anyone to talk to about this or to ask any advice or even what to expect for recovery. The plan is to have it removed laparoscopically so recovery is a bit easier? Any feedback would be greatly appreciated!! Thank you!! ❤️

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Hello Canadian Momma,

I am sorry you are having to deal with this health issue. When I was first diagnosed with Polycystic Kidney Disease, I found I had to recover from the diagnosis. Being thrown into the world of medicalese (a language I still don't understand), diagnosis, fear for myself, and worries about the welfare of my 3 young children; it was all overwhelming. I remember scouring the internet for information at 3am, and wishing I could watch my drama unfold like a Lifetime movie, so I knew how it ended. So my heart is with you. This board is a great place for support and usually some great links for information.

I have had both of my kidneys removed, at different times. The first, during my kidney transplant, almost four years ago. And the second, 2 years ago. The first was an "open" surgery, which is what it sounds like, they opened me up with a large incision. The second was done laparoscopically - two small incisions for the scopes, and then Dr Prieto used my old C-section scar, as his larger (about 3") incision to remove the kidney. If you have had any of your children by c-section, or had any prior abdominal incision, ask if it's possible to use the old scar line as the point of incision for kidney removal.

Dr Prieto was wise in using old scar tissue for his incision, I did not have much pain, because there are no nerve endings on scar tissue. I did not know to advocate for this, but now that I do, I share the info with everyone:) My second kidney removal surgery was a breeze. I was on pain meds at hospital for 2 days, oral pain meds for about additional day or two, and by day 4 or 5 just Tylenol. Had to be careful bending over, twisting, etc for several weeks, and no lifting anything over like a gallon of milk for about 3-4 weeks. That was about it. It felt similar to a c-section.

My journey was different than yours but I will share a few tidbits that might be helpful.
Try to focus on positives - stay in the moment. "Right now, I am okay. My body is strong."
Advocate for what you need. Talk to others, with similar health issue, and get their advice.
Living with just one kidney, feels pretty much like living with two of them. I feel great.
My mother-in-law had kidney cancer 20 years ago. They removed one of her kidneys and she has been great ever since.
If your doctors are not giving you what you need, don't be afraid to get a second opinion. Mayo is great and their surgeons are best in their fields. There are other "hubs" that specialize in what you are dealing with. Find those doctors and go to them. You want the doctor, who does 3 of these surgeries before lunch, as opposed to the doctor that does 3 of these surgeries a year. It matters.

Wishing you the very best, and feel free to reach out to me, if I can be of any further help.

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I understand being scared! I was too. It’s been about a year and a half since I learned I kidney cancer. I can now talk about it w/o lots of emotions. I had my right kidney robotically removed in Oct ‘22. It took about 4 weeks to be able to ‘get around’ again. By 6 weeks, I was much better. Everyone is different. You’ll hear lots of different stories….good and bad. Our journey is our own but it helped me tremendously to read and participate on this site.
I believe going to a kidney cancer specialist and cancer hospital is extremely important. I pray you can do that. It’s a day by day process. Feel free to post and many will respond. Praying for you!

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@stephanierp

Hello Canadian Momma,

I am sorry you are having to deal with this health issue. When I was first diagnosed with Polycystic Kidney Disease, I found I had to recover from the diagnosis. Being thrown into the world of medicalese (a language I still don't understand), diagnosis, fear for myself, and worries about the welfare of my 3 young children; it was all overwhelming. I remember scouring the internet for information at 3am, and wishing I could watch my drama unfold like a Lifetime movie, so I knew how it ended. So my heart is with you. This board is a great place for support and usually some great links for information.

I have had both of my kidneys removed, at different times. The first, during my kidney transplant, almost four years ago. And the second, 2 years ago. The first was an "open" surgery, which is what it sounds like, they opened me up with a large incision. The second was done laparoscopically - two small incisions for the scopes, and then Dr Prieto used my old C-section scar, as his larger (about 3") incision to remove the kidney. If you have had any of your children by c-section, or had any prior abdominal incision, ask if it's possible to use the old scar line as the point of incision for kidney removal.

Dr Prieto was wise in using old scar tissue for his incision, I did not have much pain, because there are no nerve endings on scar tissue. I did not know to advocate for this, but now that I do, I share the info with everyone:) My second kidney removal surgery was a breeze. I was on pain meds at hospital for 2 days, oral pain meds for about additional day or two, and by day 4 or 5 just Tylenol. Had to be careful bending over, twisting, etc for several weeks, and no lifting anything over like a gallon of milk for about 3-4 weeks. That was about it. It felt similar to a c-section.

My journey was different than yours but I will share a few tidbits that might be helpful.
Try to focus on positives - stay in the moment. "Right now, I am okay. My body is strong."
Advocate for what you need. Talk to others, with similar health issue, and get their advice.
Living with just one kidney, feels pretty much like living with two of them. I feel great.
My mother-in-law had kidney cancer 20 years ago. They removed one of her kidneys and she has been great ever since.
If your doctors are not giving you what you need, don't be afraid to get a second opinion. Mayo is great and their surgeons are best in their fields. There are other "hubs" that specialize in what you are dealing with. Find those doctors and go to them. You want the doctor, who does 3 of these surgeries before lunch, as opposed to the doctor that does 3 of these surgeries a year. It matters.

Wishing you the very best, and feel free to reach out to me, if I can be of any further help.

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Wishing you well

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I have had to laproscopic kidney partial nephrectomy and tumor removal and cared for my mother who had her left kidney removed at 86.
The first few days was very limited in activity and movement , but by the 3rd day we were both able to move with limited pain. The first week you will likely need assistance with meal prep for the family etc. The first three or four days you should have a someone help oversee your medications etc as your mind may not be very clear. I was discharged day Two for both and my mother day three. My friend had a total kidney removal and hers was much the same. None of us had significant pain after first day or two. Having some frozen casserole type meals ready to just heat up may help things be mangable.
Praying all goes well.

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My left kidney dies some time ago because of bladder removal surgery thatt damaged the kidney. I have not had any serious problems living with only one kidney. Have to watch my diet so I don't overload my system with chemicals that the one kidney has a hard time removing, especially potassium in my case.
Just have your blood and urine check every few months until you have a diet that works for you.

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As a kidney donor I can tell you that if your surgery is uncomplicated and laparoscopic; the surgery and recovery weren’t bad. I walked out of the hospital the next morning. I hope the cancer has not spread

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I am also having my kidney (right) removed on January 12. Be committed to the surgery and your recovery. Be committed to being a better you. We are soul mates and have never met. May peace be yours. “In quietness and confidence is your strength.” Blessings.

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