1. < Transplants

Pre kidney transplant

Posted by Judyth @judyth, Aug 20, 2018

I am almost at Stage 5 CKD and hope to have my daughter's kidney before the year ends. She volunteered and is a match!! She's going for her 2 day exam in a week and our fingers are crossed. Are there any suggestions on how I can be in the best shape possible I have so little energy and I broke my left greater trocanter 2 months ago and have even less energy.

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 26, 2018
In reply to @jodeej "@rosemarya I'm sure I have! We love reading all of them." + (show)
@jodeej

@rosemarya I'm sure I have! We love reading all of them.

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My husband took a photograph and we have it in a frame here in our home:-)

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Judyth | @judyth | Aug 26, 2018

I’m fairly new to this chat and love it! Are there groups that get together on-site at Mayo?

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2 replies
jodeej | @jodeej | Aug 26, 2018
In reply to @judyth "I’m fairly new to this chat and love it! Are there groups that get together on-site..." + (show)
@judyth

I’m fairly new to this chat and love it! Are there groups that get together on-site at Mayo?

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@judyth no. People are spread out all over the world. My husband and I did happen to be in Rochester at the same time as someone I know from on here. We met for coffee. It was so nice to put a face with the name!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 26, 2018
In reply to @judyth "I’m fairly new to this chat and love it! Are there groups that get together on-site..." + (show)
@judyth

I’m fairly new to this chat and love it! Are there groups that get together on-site at Mayo?

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@judyth, Here is a link that will give you the information about support groups that take place at the three Mayo campuses.

https://www.mayoclinic.org/patient-visitor-guide/support-groups/finding-support-group
Near bottom of page Look for: - See support groups at Mayo Clinic:
Arizona | Florida | Minnesota

Is this what you are looking for? Which Campus are you interested in?

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2 replies
marvinjsturing | @marvinjsturing | Aug 30, 2018
In reply to @marvinjsturing "In 2009, I was diagnosed with Type II diabetes. In 2014, I was diagnosed with pancreatic..." + (show)
@marvinjsturing

In 2009, I was diagnosed with Type II diabetes. In 2014, I was diagnosed with pancreatic cancer. I had a Whipple, became a Type I diabetic and received 6 months of chemo. Because of a rare reaction to the chemo, I was diagnosed with CKD in 2015. For the past 3 years, I have been mostly at Stage 5 with occasional test results at Stage 4. I am not on dialysis yet. I have to be cancer free for 5 years before I can have a kidney transplant (January, 2020), but both oncology and nephrology said I can begin the evaluation process. If everything looks good, they will put me on the inactive list until my 5 year anniversary. On August 27, I will begin 4 very busy days of tests and consultations at Mayo in Rochester.

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My kidney transplant evaluation is done - 17 appointments in 4 days plus a tour of the Gift of Life Transplant House. It started with blood work. They drew 20 vials of blood. They test to see what diseases you've had (or didn't have - they don't want you getting sick when you are on anti-rejection drugs after the transplant.) I had to have a chest X-ray, an EKG, an ultrasound (to see where the transplanted kidney can be placed). and a stress echocardiogram. I met with financial services, a social worker, a pharmacist, the transplant coordinator, dietician, nephrologist, physical therapist, surgeon and in my case, oncologist. Monday was the busiest day - 10 1/2 hours of appointments. I was afraid that I was going to be overwhelmed by all the information I was going to receive, but before I went, I read Mayo's kidney transplant website and the websites of a couple of other hospitals.

All the information from my evaluation will be presented to the transplant committee in the next week or so and they will make a determination whether or not to put my name on the transplant list. If they do put my name on the list, I will be classified as inactive until I have been cancer free for 5 years. From talking to the nephrologist, it sounds like they have not had many requests for a kidney transplant from a pancreatic cancer survivor.

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2 replies
jolinda | @jolinda | Aug 30, 2018
In reply to @marvinjsturing "My kidney transplant evaluation is done - 17 appointments in 4 days plus a tour of..." + (show)
@marvinjsturing

My kidney transplant evaluation is done - 17 appointments in 4 days plus a tour of the Gift of Life Transplant House. It started with blood work. They drew 20 vials of blood. They test to see what diseases you've had (or didn't have - they don't want you getting sick when you are on anti-rejection drugs after the transplant.) I had to have a chest X-ray, an EKG, an ultrasound (to see where the transplanted kidney can be placed). and a stress echocardiogram. I met with financial services, a social worker, a pharmacist, the transplant coordinator, dietician, nephrologist, physical therapist, surgeon and in my case, oncologist. Monday was the busiest day - 10 1/2 hours of appointments. I was afraid that I was going to be overwhelmed by all the information I was going to receive, but before I went, I read Mayo's kidney transplant website and the websites of a couple of other hospitals.

All the information from my evaluation will be presented to the transplant committee in the next week or so and they will make a determination whether or not to put my name on the transplant list. If they do put my name on the list, I will be classified as inactive until I have been cancer free for 5 years. From talking to the nephrologist, it sounds like they have not had many requests for a kidney transplant from a pancreatic cancer survivor.

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Marvin,

Great job getting through it all. I remember it being a lot of appointments but forgot just how intense the process can be, good to remember. Those of us who go to Mayo have no idea how lucky we are that the team sets everything up for us and even though it's a lot all at once at least we are able to get in all of the appointments we need quickly. I have friends that have gone to other centers that are less integrated and they have appointments stretched over months and end up driving back and forth for only a few appointments each time.

I happy that your case will go in front of the committee so soon. Please keep us all posted as your case progresses, can't wait to hear more.

Jolinda

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marvinjsturing | @marvinjsturing | Aug 31, 2018
In reply to @marvinjsturing "@rosemary & @susanjc my wife is going with me. We are both planning on taking notes,..." + (show)
@marvinjsturing

@rosemary & @susanjc my wife is going with me. We are both planning on taking notes, then we can compare what each of us heard. I have been trying to keep a journal of my doctor's appointments over the last 4 years. If I have questions when I read through my journal, I write them down so I can ask them at my next appointment. No questions about the Mayo campus. I've been there many times in the last 4 years

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It is a good thing my wife was with me. At our first meeting with the nephrologist he made a statement that I understood one way and my wife understood another way. At our second meeting with the nephrologist, it was obvious that my wife was right (as usual).

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 31, 2018
In reply to @marvinjsturing "It is a good thing my wife was with me. At our first meeting with the..." + (show)
@marvinjsturing

It is a good thing my wife was with me. At our first meeting with the nephrologist he made a statement that I understood one way and my wife understood another way. At our second meeting with the nephrologist, it was obvious that my wife was right (as usual).

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My husband and I can relate to this!
Remember that a sense of humor is also a necessary part of the journey:-)

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marvinjsturing | @marvinjsturing | Sep 8, 2018
In reply to @marvinjsturing "My kidney transplant evaluation is done - 17 appointments in 4 days plus a tour of..." + (show)
@marvinjsturing

My kidney transplant evaluation is done - 17 appointments in 4 days plus a tour of the Gift of Life Transplant House. It started with blood work. They drew 20 vials of blood. They test to see what diseases you've had (or didn't have - they don't want you getting sick when you are on anti-rejection drugs after the transplant.) I had to have a chest X-ray, an EKG, an ultrasound (to see where the transplanted kidney can be placed). and a stress echocardiogram. I met with financial services, a social worker, a pharmacist, the transplant coordinator, dietician, nephrologist, physical therapist, surgeon and in my case, oncologist. Monday was the busiest day - 10 1/2 hours of appointments. I was afraid that I was going to be overwhelmed by all the information I was going to receive, but before I went, I read Mayo's kidney transplant website and the websites of a couple of other hospitals.

All the information from my evaluation will be presented to the transplant committee in the next week or so and they will make a determination whether or not to put my name on the transplant list. If they do put my name on the list, I will be classified as inactive until I have been cancer free for 5 years. From talking to the nephrologist, it sounds like they have not had many requests for a kidney transplant from a pancreatic cancer survivor.

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I received a call from my transplant coordinator's office yesterday. I have been approved for a kidney transplant. My status will be inactive until January, 2020 when I will be cancer free for 5 years. But I am on the list and accruing time!

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1 reply
jodeej | @jodeej | Sep 8, 2018
In reply to @marvinjsturing "I received a call from my transplant coordinator's office yesterday. I have been approved for a..." + (show)
@marvinjsturing

I received a call from my transplant coordinator's office yesterday. I have been approved for a kidney transplant. My status will be inactive until January, 2020 when I will be cancer free for 5 years. But I am on the list and accruing time!

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Congratulations @marvinjsturing !

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