Anyone had experience with a Nephrostomy Tube?

Posted by hello1234 @hello1234, Apr 25, 2023

Hi Transplant Friends,
I hope all is well. Does anyone have any experience or know someone that needed a Nephrostomy Tube after their kidney transplant? @mariags son just had a Nephrostomy Tube installed. I think it would comforting to them if someone can share their experience. Is anyone familiar with this tube and maybe what comes next?

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@mariags, how are you and your son doing? Do you both still have nephrostomy tubes? What is next?

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@mariags I had a nephrostomy after my transplant due to the ureter failing. They put the tube in and I wore a bag for about 4 months. Once I was healed up, the attached one of my native ureters to my new kidney and by the grace of God and the amazing doctors at Mayo Rochester, it worked! 11 years and going strong! Best of luck to your son!

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Hi @mollyv 😊
Thank you sooo much for jumping in to help @mariags with your story!
I am sure your nephrostomy tube success story will bring some comfort. I am also sure that you were very scared while going through that 4 month bag process...but 11 years and going strong is a SUPER wonderful outcome!
When I was diagnosed with BK virus, @cmael and @leahd saved my sanity on Mayo Connect. They shared their experience with BK and their ultimately successful outcome and it was incredibly comforting during those 6 BK virus months... @jennifer0726 @rosemary @caretakermom @somedaydialysisfree @scottij @jackiez all jumped in to help! I really felt the love and support from my Connect transplant family. I hope @mariags feels the same support during her son's nephrostomy tube process.
Thank you again @mollyv for joining this discussion! ❤

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Oops....you too @l0lag0lag0b3 😊
I can't believe I pushed send before including you in my BK virus support team... I hope all is going well!

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@hello1234

Oops....you too @l0lag0lag0b3 😊
I can't believe I pushed send before including you in my BK virus support team... I hope all is going well!

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@hello 1234 ..Good to hear from you
forgetting the last 2 years ... Yes currently I am doing much better - physiologically & psychologically ever since the PTE secondary is under control, now I spend most of my time gardening.... This July - will complete 4 years. Nothing more to add - Trust you are doing better too. ...Best Wishes

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@l0lag0lag0b3

@hello 1234 ..Good to hear from you
forgetting the last 2 years ... Yes currently I am doing much better - physiologically & psychologically ever since the PTE secondary is under control, now I spend most of my time gardening.... This July - will complete 4 years. Nothing more to add - Trust you are doing better too. ...Best Wishes

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Hi @l0lag0lag0b3 😊
I am so happy to hear that you are enjoying your gardening again. I will be celebrating my 3 year kidney transplant anniversary in July while you will be celebrating your 4 year transplant anniversary! My CMV is negative and my BK is finally negative, so I am feeling better mentally and physically. I am thrilled to hear the PTE secondary is under control and you are feeling better too.
I appreciate all of your friendship and support sooo much!
This transplant journey is much easier with good friends who understand.
Thank you ❤

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@hello1234

Hi @l0lag0lag0b3 😊
I am so happy to hear that you are enjoying your gardening again. I will be celebrating my 3 year kidney transplant anniversary in July while you will be celebrating your 4 year transplant anniversary! My CMV is negative and my BK is finally negative, so I am feeling better mentally and physically. I am thrilled to hear the PTE secondary is under control and you are feeling better too.
I appreciate all of your friendship and support sooo much!
This transplant journey is much easier with good friends who understand.
Thank you ❤

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Thanks Hello1234,
Happy to hear that you have overcome both CMV & BKV... . I certainly appreciate your support during my saga with PTE secondary.... Yes you are right the transplant journey does become easier -- as I have noticed .. that all us are being our own advocates and dealing with situations with a positive mindset.
Until next time... Best Wishes.

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