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skittles25
@skittles25

Posts: 7
Joined: Jan 14, 2016

Problems post-Kidney/Liver transplant

Posted by @skittles25, Apr 13, 2017

My son (25 yrs. old) had his transplant was at Barnes-St. Louis…Creatinine slowly rising a month after transplant. Doctors have diagnosed stent problems…inflammation causing blockage and urine back-up in kidney. Removed stent, inserted cathetar for a few days, now re-stented and hope for the best….I would like to get a second opinion from Mayo. Is there a way to present the case without traveling from St. Louis?

Liked by hjlucchi

REPLY

@skittles25, Welcome to Connect. I agree with you that a second opinion is a good idea. I suggest that you contact Mayo Clinic and speak to them about this question. They are the ones who can assist you with this.

The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I want you to know that we are here for you and for your son.
Please let us know if there is anything else you want to know.
Rosemary

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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We haven’t gotten a second opinion yet. He had a third stent replacement. If the condition hasen’t improved after a month, we will contact Mayo clinic. Thanks.

Hi Skittles,
I hope that the stent replacement is the answer for your son’s complications. I’m also tagging @chattykathy on this discussion as I believe she had some post transplant complications that may provide some insight for you.
Please keep us posted on your son’s situation.

Hello all; I saw the post about stents with the young man having issues. I am really sorry to hear of these post transplant complications.

Speaking for myself; I had a stent placed in my ureter (Liver-kidney transplant 2011) and did not know about it until they removed it. This may sound strange, but I did not know much or remember much after the transplant. My husband knew the details more than I.

Do you have a nurse coordinator at Mayo who works with the transplant team? I would call in to the transplant center and let them know what is happening. The team will want to know about these issues promptly. The local nephrologist should be keeping them informed of the patient’s progress and difficulty.

My understanding for the stent placement is to keep the ureter open. Has there been infection that cause the stent failure? After all this time, I still call the team with any issues I am having and they always are interested in what is going on.

I hope this helps and the patient has a full recovery. Will keep you in my thoughts and prayers. CK

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25, I sincerely hope that this stent replacement is successful for your son. Is he feeling any resolve from the stent?

However,
If you do go to Mayo for a second opinion, and if you will be traveling and staying for treatment, I would like to suggest looking into the Gift of Life House for transplant patients as a possible lodging option.
I am sending another hug with this reply.
Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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The stent was not successful. They replaced it again for the 4th time. Now, his transplant surgeon is planning on surgically fixing the ureter. We are still looking for answers from Mayo clinic, though. We are confused on why a Urology surgeon isn’t going to do this, but we haven’t gotten clear answers on this yet. thanks.

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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Thank you. We will look into the Gift of Life house.

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25 – It must be frustrating and frightening for you and your dear son to have to endure this period of uncertainty and questioning. It sounds to me like your transplant surgeon might be trying the less invasive procedures before attempting a more complex one. It is a shame that you are not getting answers from him.
How is your son feeling? Tell him that I pray for him and all who are going thru transplant related difficulties.
Keep in touch,
Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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Hi, the surgeon did a ureter re-implantation. My son is doing great. Tomorrow is a year since his transplant. In nice weather, he is out walking 30-60 minutes daily and feeling great.

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25, I just now came upon your wonderful message! I am thrilled to hear this!!
I am in a rush right now – I will get back to you later.
Hugs, Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25, Happy transplant anniversary to your son! Thank you for sharing the updated information about your son. I know this is the answer to your prayers.
I feel great relief for you that he is doing well and walking daily. Now he (and you) can begin to enjoy the benefits of his transplant.

What kind of follow-up will be needed? Did you go to Mayo Clinic?
Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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No, he went to Barnes St. Louis. He will have follow-up in a year with liver, 6 mos. for kidney. Monthly labs.
Thanks so much.

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25, That worked out great for you! Being closer to home will make any return trip so much easier for you. I have an annual followup that includes both liver and kidney. I now have routine labs every 3 months, but remember that I am 8 years post transplant.

I would like to share the Transplant Pages with you and your son. I think that you will find the Newsfeed to be particularly helpful as your son continues to live with his new organs. It is regularly updated and contains accurate transplant information by the transplant staff.
https://connect.mayoclinic.org/page/transplant/

You know that you are always invited to join in any of out discussions on Connect.
Rosemary

@rosemarya

@skittles25, Were you able to get a second opinion for your son? I hope he is doing better soon. Please let him know that I am thinking about him and if it is okay, I will keep him in my prayers.
Sending you a hug,
Rosemary

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@skittles25
Right now there are some newer members who are asking questions about being pre-transplant caregivers. I think that they would love to meet you and learn from your experience.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/

Let me know, if you would like for me to link you directly to that conversation.
Rosemary

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