Bilateral Nephrectomy after transplant

Posted by hello1234 @hello1234, Aug 28, 2021

Hi all,
A good friend of mine who had her kidney transplant four years ago just called me. The reason for her transplant was Polycystic Kidney Disease (PKD). At her 4 year post kidney transplant anniversary this week, she was just told that her native kidneys have grown in size and are covered in cysts. They need to be removed because they are causing problems. She is being scheduled for a bilateral Nephrectomy in a couple of weeks and she is very scared. I told her that I would message my Transplant Mayo Connect family to see if anyone has any experience with this surgery and can offer any advice or comfort?
Thanks everyone!!

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@hello1234 Here is an article from Cleveland Clinic about nephrectomy https://my.clevelandclinic.org/health/treatments/21515-nephrectomy

Typically, the native kidneys have indicated they have a problem, which has led to the kidney transplant to start with. With PKD, the native kidneys may indeed lose function, but the cysts continue to cause issues. They can grow in size, and start to cause an issue in the bowel area. If they have no functionalbility left, there is no reason to keep them, then.

Of course your friend is shaken up! Going merrily along your way entertaining a new-to-you kidney, then get this news. If she has concerns, have her write them down and present them to her transplant team. We know our medical teams are not going to do anything to jeopardize the new kidney if they can help it. There must be a reason they are recommending this, and it may set her mind at ease to know why. Also, seeing it is scheduled for a couple of weeks must have her on pins-and-needles, so any info she can find out from them will help. You're a good friend to be there by her side.
Ginger

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@gingerw

@hello1234 Here is an article from Cleveland Clinic about nephrectomy https://my.clevelandclinic.org/health/treatments/21515-nephrectomy

Typically, the native kidneys have indicated they have a problem, which has led to the kidney transplant to start with. With PKD, the native kidneys may indeed lose function, but the cysts continue to cause issues. They can grow in size, and start to cause an issue in the bowel area. If they have no functionalbility left, there is no reason to keep them, then.

Of course your friend is shaken up! Going merrily along your way entertaining a new-to-you kidney, then get this news. If she has concerns, have her write them down and present them to her transplant team. We know our medical teams are not going to do anything to jeopardize the new kidney if they can help it. There must be a reason they are recommending this, and it may set her mind at ease to know why. Also, seeing it is scheduled for a couple of weeks must have her on pins-and-needles, so any info she can find out from them will help. You're a good friend to be there by her side.
Ginger

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Thank you @gingerw . I appreciate the link of information and I will definitely encourage her to discuss her concerns with her transplant team. I think she is just scared of another major surgery! Her new kidney is working great. Her granddaughter lives with her full time and she is very concerned about the Covid level in the schools and potential exposure for her granddaughter and for her. The third dose of vaccine did not work for her ….And now this major surgery. Lots of stress and my heart goes out to her. She's an unbelievable person and she is dealing with so much right now. The way she explained the surgery to me, it sounded MORE difficult than the transplant surgery and requires at least a week in the hospital.
Thank you again Ginger for always being there!!

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@hello1234

Thank you @gingerw . I appreciate the link of information and I will definitely encourage her to discuss her concerns with her transplant team. I think she is just scared of another major surgery! Her new kidney is working great. Her granddaughter lives with her full time and she is very concerned about the Covid level in the schools and potential exposure for her granddaughter and for her. The third dose of vaccine did not work for her ….And now this major surgery. Lots of stress and my heart goes out to her. She's an unbelievable person and she is dealing with so much right now. The way she explained the surgery to me, it sounded MORE difficult than the transplant surgery and requires at least a week in the hospital.
Thank you again Ginger for always being there!!

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@hello1234 It is a major surgery, no doubt. Depending on the situation, an open surgery is usually best after a transplant, since a laproscopic surgery ends up being more time under anesthesia, something they will try to avoid if they can. Kidneys with cysts can be more complex, since they need to be sure to get the vessels and all severed correctly – not a clear shot to see. Her team will make hospital length stay decision based on her individual case.

I know one young man whose dr wanted him to go through a bilateral nephrectomy before transplant, then go on dialysis. He rejected that idea, and suffered for a couple more years with dialysis before finding a donor.

I face a right kidney nephrectomy if the tumor there raises its head and size. The surgeon told me it will spin me right in to dialysis, since my one remaining native kidney will not handle the job. We are hoping to not go there in the near future!

Any further concerns or questions, ask away! I want to hear a great outcome to your friend's story. We can only do everything on our part to remain COVID-free.
Ginger

REPLY
@gingerw

@hello1234 It is a major surgery, no doubt. Depending on the situation, an open surgery is usually best after a transplant, since a laproscopic surgery ends up being more time under anesthesia, something they will try to avoid if they can. Kidneys with cysts can be more complex, since they need to be sure to get the vessels and all severed correctly – not a clear shot to see. Her team will make hospital length stay decision based on her individual case.

I know one young man whose dr wanted him to go through a bilateral nephrectomy before transplant, then go on dialysis. He rejected that idea, and suffered for a couple more years with dialysis before finding a donor.

I face a right kidney nephrectomy if the tumor there raises its head and size. The surgeon told me it will spin me right in to dialysis, since my one remaining native kidney will not handle the job. We are hoping to not go there in the near future!

Any further concerns or questions, ask away! I want to hear a great outcome to your friend's story. We can only do everything on our part to remain COVID-free.
Ginger

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Thanks so much @gingerw I am happy to hear that currently your situation is stable and a nephrectomy is not needed at this time. I will definite keep you posted on my friend's outcome too. I feel confident that all will go well. Her surgeon for this procedure is also her transplant surgeon. The transplant surgeons do AMAZING work! Regarding Covid, I live in Florida…. Need I say more? 🙂

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I'm tagging @jolinda on this discussion. She also had PKD and transplant. She may have additional information, experiences and thoughts to add.

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@hello1234, I want to follow-upon your friend who was scheduled for a bilateral Nephrectomy. Did she have it?
Have you shared Mayo Clinic Connect with her? She is welcome to join us because Mayo Connect is not limited to Mayo patients. I would be happy to welcome her and to help her to connect with members who share a history of PKD.

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Thank you @rosemarya for your kind follow up! My friend's bilateral nephrectomy is scheduled for October 28 in the Philadelphia area. I will definitely share the Mayo Connect link and I will keep you updated after her surgery. She is in very good hands (her transplant surgeon!) so I think she is feeling better about it, but still scared. Thank you again for checking in with me!! Love to you. 🙂

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