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skittles25
@skittles25

Posts: 5
Joined: Jan 14, 2016

Problems post-Kidney/Liver transplant

Posted by @skittles25, Thu, Apr 13 7:56am

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?

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Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Thu, Apr 13 9:14am

@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


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sun, Apr 30 6:05pm

@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


skittles25
@skittles25

Posts: 5
Joined: Jan 14, 2016
Posted by @skittles25, Sat, May 27 9:50am

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.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Sun, May 28 9:12am

@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


skittles25
@skittles25

Posts: 5
Joined: Jan 14, 2016
Posted by @skittles25, Sun, Jun 25 6:03am

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.


skittles25
@skittles25

Posts: 5
Joined: Jan 14, 2016
Posted by @skittles25, Sun, Jun 25 6:04am

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


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1275
Joined: Aug 30, 2011
Posted by @rosemarya, Mon, Jun 26 8:09pm

@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


Colleen Young, Connect Director
@colleenyoung

Posts: 3882
Joined: Jul 23, 2014
Posted by @colleenyoung, Sat, May 27 11:37am

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.


chattykathy
@chattykathy

Posts: 30
Joined: Apr 04, 2017
Posted by @chattykathy, Sat, May 27 3:29pm

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

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