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.

@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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@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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@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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@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

@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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@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

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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@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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@rosemarya

@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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We’re 80 miles from Rochester so that is where I would love to chat w/others.

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We need to visit Trans House soon. My daughter completed her 4 days of tests, ec, had her mamo and Pap and are expecting her to be okayed soon! Maybe I'll get a Kristmas Kidney from her this year!

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@jolinda

Judyth,

Congratulations on being so close to transplant!!! You have so many things going for you already…clearly you are greatly loved by your daughter, you sound very motivated to be the best you can as you go into surgery and by receiving a living donor kidney you will have the best chance possible for a good outcome. Such amazing news!

As a recipient of a Living Donor kidney myself there are a few things I can recommend and I hope they are helpful as you prepare for surgery. First off it is very important that you stay healthy:
Wash your hands frequently
Keep hand sanitizer with you
Avoid sick people
Eat well cooked food to avoid any stomach issues or contamination
Rest when you can
If you are able to stay at the Gift of Life Transplant House you should (great support, much cleaner than a germy hotel, and they facilitate blood draws etc. with Mayo).

It will be hard for you to get a lot of exercise with your injury but perhaps your transplant nurse can suggest some breathing techniques and low impact workouts to keep your heart and lungs strong and active.

I can't say what dietary restrictions you might encounter post transplant but I am no longer able to have grapefruit or pomegranate so I wish I would have enjoyed them a few last times before I started on my new meds. Just a thought, again I have no idea if you'll encounter restrictions.

Another silly tip is to maybe be to increase your dietary fiber in the days leading up to surgery because it can take a bit for your bowels to "wake up" afterwards. You'll have an incision that will thank you for not adding any extra strain, make sense. An ounce of prevention is worth a pound of cure on this one.

I hope some of these ideas help you. I am so happy for you. Keep us all posted as things progress.

Jolinda

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Thanks for the great tips. I am so lucky to have a daughter who is a match! I am having my colonoscopy (Mayo required) next week and she had her 4 days of testing two weeks ago and, barring anything off on my colonoscopy, we should be ready to go! We still need to visit the GOL House soon to become acquainted. I keep thinking that when I wake up after my surgery I will jump off the op bed and dance around with all my new energy. How long is the usual hospital stay? Also, what is the oldest person to have a transplant that you all know?

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@judyth I love your positive thinking. I hope you have the energy to jump out of bed and dance!!! I had my evaluation a couple of weeks ago in Rochester and was just approved to get my name on the list for a kidney transplant. During my eval, I was told to expect a 3 day stay in the hospital and a 3-4 week stay at GOL. Praying that things go well for you.

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