Living Donor Process

Posted by ek101085 @ek101085, Apr 11, 2019

Hello,

I was wondering if anyone is able to shed some light on the process of being a living donor. I had just completed the questionnaire a week ago today for my sister, the day she found out she had been approved for a transplant at the Mayo. We have not heard anything other than her receiving a letter confirming she was approved for transplant The email said I would be contacted within 5 days.. I'm assuming I'm just worrying and being impatient since it has only been a week. Just seeing if there was anyone out that that is able to provide some reassurance in the process. There wasn't anything I answered in the health questionnaire that I would thing would not me allow to be tested..at least I had thought so. Amy info would be greatly appreciated.

Thanks!!

I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

REPLY
@mycase1968

I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

Jump to this post

Hi @mycase1968, I would like to add my welcome to you. You'll notice that I moved your message to this existing discussion about the living donor process. Click VIEW & REPLY to see the past posts from other members who, like you, are going through evaluation.

Congratulations on being a match for your friend. What an incredible gift you are giving. Your sharing your experiences as you go through the testing and evaluation process will be so helpful for others who are considering living donation. You're right that it is intense. They want to ensure that everything is top notch for you and for your friend the recipient.

You may also be interested in this related discussion:
– Kidney transplant: Thinking of becoming a donor https://connect.mayoclinic.org/discussion/kidney-transplant-3/

And should you get through the evaluation process and be ready to donate, you'll most certainly appreciate connecting with members in this discussion:
– Kidney transplant – The Journey from the Donor's Side – https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

All the best with the colonoscopy next week. The prep is the most challenging part. I never thought it would be so hard to drink fluids. But in the grand scheme of things, that's nothing. For someone thinking of starting the donor process, what would be your advice or tip to get started?

REPLY

They are slow! You need to call back. Your sister can not call for you. The recipient team doesn’t communicate with the donor team.

REPLY

@mycase1968, I want to drop in and check on how you are getting along. If you are going to move forward with transplant surgery, we are here to support you. And if the surgery is not going to be possible, we are here, too. Either way, you are not alone.

@morty, I want you to know that I am thinking about you and hoping that you are as comfortable as is possible at this point. I know how hard the waiting and unknowing is. How are you feeling?

@ek101085, I am sending my thoughts and hopes that you and your sister are on a forward journey.

@marvinjsturing, will you be going to Omaha in January? If so, will you need to be re-evaluated to be listed there, too?
How does that work?-being listed at 2 centers?

REPLY
@rosemarya

@mycase1968, I want to drop in and check on how you are getting along. If you are going to move forward with transplant surgery, we are here to support you. And if the surgery is not going to be possible, we are here, too. Either way, you are not alone.

@morty, I want you to know that I am thinking about you and hoping that you are as comfortable as is possible at this point. I know how hard the waiting and unknowing is. How are you feeling?

@ek101085, I am sending my thoughts and hopes that you and your sister are on a forward journey.

@marvinjsturing, will you be going to Omaha in January? If so, will you need to be re-evaluated to be listed there, too?
How does that work?-being listed at 2 centers?

Jump to this post

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

REPLY
@marvinjsturing

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

Jump to this post

@marvinjsturing I hope that the Omaha group will allow you to register. It may be the place that gets everything worked out. I keep you in my prayers every night and hope that the magic call for a transplant will come soon. I know it is hard to stay positive, but think of something good and do all you can. A Christmas miracle would be that you get the call and have a donor.
Blessings to you and your family.
Carol

REPLY
@marvinjsturing

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

Jump to this post

@marvinjsturing Here is a link to the different regions for transplant https://unos.org/community/regions/
My husband was listed at two different centers within region 5. Each center had different wait times, and different protocols.. Each year he went through re-evaluation at each center; basically they don't interact with each other. The closer center was only 20 miles away, and was the choice of his insurance. The insurance cooperated with his center-of-choice that was 120 miles away, where he did get his surgery. He had to pay out-of-pocket for the evaluation at the 2nd place, but it was worth it! He might still be waiting, otherwise. Sending good wishes for a successful testing and listing, then transplant, wherever it is done!
Ginger

REPLY
@marvinjsturing

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

Jump to this post

@marthajean We will all be thinking of you when your appointments in Omaha come up. I too was of the impression that you could only register at one transplant center per region but apparently not since @gingerw's husband was registered in two. I hope your transplant comes soon and that it will be at your preferred center. When that call comes, it's such a great feeling.
JK

REPLY
@retiredteacher

@marvinjsturing I hope that the Omaha group will allow you to register. It may be the place that gets everything worked out. I keep you in my prayers every night and hope that the magic call for a transplant will come soon. I know it is hard to stay positive, but think of something good and do all you can. A Christmas miracle would be that you get the call and have a donor.
Blessings to you and your family.
Carol

Jump to this post

Yes stay strong keep active as you can follow rules put before you stay out of E.R
Good luck 2.5 year patient one day or night the call will come
Gary oja

REPLY
@marvinjsturing

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

Jump to this post

@marvinjsturing
I’ll be thinking about you this week and I hope that this is the beginning of your best year ever.

REPLY

@marvinjsturing I will have you in my thoughts and prayers as you go through the testing for acceptance in Omaha. I pray that those who make the decision will choose you for the transplant. We cannot lose hope. At an unexpected moment the call you've waited for will come. I am hoping that it comes soon.
Carol

REPLY
@mycase1968

I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

Jump to this post

@mycase1968, It has been a while since you have posted and I want to check in with you. Have you found out anything about the possibility of donating a kidney?
Please know that whether or not you are approved, you have already earned the "hero" status for your willingness. We would love to hear from you.

REPLY

@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be driving to Omaha on Tuesday with tests on Wednesday and Thursday. I am not sure when their transplant committee meets, but I am sure I will find out all about their process later this week. Will let you all know once all the tests are done.

REPLY
@marvinjsturing

@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

Jump to this post

I pray that the medical staff in Omaha will have a positive approach to your transplant!

REPLY
@marvinjsturing

@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be driving to Omaha on Tuesday with tests on Wednesday and Thursday. I am not sure when their transplant committee meets, but I am sure I will find out all about their process later this week. Will let you all know once all the tests are done.

Jump to this post

@marvinjsturing safe driving! Patience with the technicians and relief when it's all done! Then the waiting starts. We're right there for you.
Ginger

Liked by marvinjsturing

REPLY
Please login or register to post a reply.