1. < Transplants

Waiting for a kidney transplant

Posted by christydave @christydave, May 28, 2018

I was close to getting a transplant. Several weeks ago I had a biopsy on my pancreas. The results came back with elevated tumor markers. My concern now, no transplant. My transplant coodinater had no words of wisdom to share.
I'm really feeling hopeless at this point.
I have contacted my Nephrologist for her advice. I was also told by the Dr. that did the biopsy, that they would test more in a year. Not comfortable with that either.
I'm not sure if anyone else has had a similar experience or has advice?
Thank you so much

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Mentor
Dana, Volunteer Mentor | @danab | Mar 4, 2019
In reply to @rosemarya "@danab, I nonintentionally began my 'diary' when I was keeping a list of my medical expenses...." + (show)
@rosemarya

@danab, I nonintentionally began my 'diary' when I was keeping a list of my medical expenses. However, it gradually turned into a schedule for my appointments and procedures. It was not until I was housebound that I began a journal as a way to fight boredom and to look for/record anything positive for my focus. I found that after my transplant, I could use my records in patient portal to fill in some gaps.
You might find some helpful information by reviewing your patient portal, and old insurance payments and medical bills.

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Thank you good advice i did start at least putting in past things i do remember. I'm retired now so yes ill do the same using the portal

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Mar 4, 2019

I’m trying to post a picture of a flyer I received from Mayo (Rochester). It is a workshop being put on in St. Paul, MN for those who need a kidney transplant. It will focus on: finding a living kidney donor, educating family and friends about living donor kidney transplant and telling your story through social media outlets and other channels. It is cosponsored by National Kidney Foundation, Mayo Clinic and other MN transplant centers. It will take place March 31, 2019 from 12:00 pm to 5:00 pm at Wellstone Center 179 Robbie St. E, St. Paul, MN 55107. To register https://www.tfaforms.com/4712498 Questions? Contact Katelyn Engel 651-636-7300 x421 or katelyn.engel@kidney.org
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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 4, 2019
In reply to @threerrr3 "Yes I leave for Mayo on Wednesday surgery is scheduled for Friday morning as my sister..." + (show)
@threerrr3

Yes I leave for Mayo on Wednesday surgery is scheduled for Friday morning as my sister is my donor ..my sisters all signed up to get tested and they sent them out blood test that they took to there doctor and had blood drawn and sent back to mayo .. from there is they were compatible my older sister was the first to send it back and she was the first sent to mayo for testing .. a three days of test and we found out before we left she was a match . And then it was my turn .. or ours actually to choose a date to have it done .. so we are scheduled March 8 2019 the 21 year of liver transplant !! So two miracles in one day .. so soon I can tell you how everything went but if you have an other questions .. it’s a pretty easy process.. but first they have to fill out the questionnaire.. step one .. Good luck !!

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@threerrr3, Thank you for making time in your pre transplant week to share your experience on Connect. I appreciate it, and I know that others who read your words will feel comfort and encouragement.

I wish you and your sister a safe journey to Mayo. I will keep both of you in my thoughts and prayers. I am excited for you to be finally getting your transplant. Hugs.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18, 2019
In reply to @cehunt57 "I’m trying to post a picture of a flyer I received from Mayo (Rochester). It is..." + (show)
@cehunt57

I’m trying to post a picture of a flyer I received from Mayo (Rochester). It is a workshop being put on in St. Paul, MN for those who need a kidney transplant. It will focus on: finding a living kidney donor, educating family and friends about living donor kidney transplant and telling your story through social media outlets and other channels. It is cosponsored by National Kidney Foundation, Mayo Clinic and other MN transplant centers. It will take place March 31, 2019 from 12:00 pm to 5:00 pm at Wellstone Center 179 Robbie St. E, St. Paul, MN 55107. To register https://www.tfaforms.com/4712498 Questions? Contact Katelyn Engel 651-636-7300 x421 or katelyn.engel@kidney.org

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@cehunt57 this event would be good to list in this discussion too:
> Transplant Events https://connect.mayoclinic.org/discussion/transplant-events/

Will you be attending?

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1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Mar 19, 2019
In reply to @colleenyoung "@cehunt57 this event would be good to list in this discussion too: > Transplant Events https://connect.mayoclinic.org/discussion/transplant-events/..." + (show)
@colleenyoung

@cehunt57 this event would be good to list in this discussion too:
> Transplant Events https://connect.mayoclinic.org/discussion/transplant-events/

Will you be attending?

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@colleenyoung I did post it to the Waiting for a Kidney Transplant discussion on March 4 along with a picture of the brochure I received from Mayo (Rochester, MN). It shows up on my screen if I scroll up from where I am now. I also thought it would be good to list. It never made it into the daily digest and when two other volunteer mentors also liked it, the notification emails turned up in my junk mail. I figured it got lost to those that are following that discussion. My husband and I are attending this workshop. I am listed at Mayo for Kidney Transplant (inactive) and have been looking for a living kidney donor for 3 years now. I know there are many others in worse shape than me. We need all the help we can get. Is there anything you can do to put the word out on this event and maybe draw attention to the brochure? It is a nice brochure.

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