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Judyth
@judyth

Posts: 13
Joined: Aug 20, 2018

Pre kidney transplant

Posted by @judyth, Mon, Aug 20 11:44am

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.

REPLY

@judyth, I want to welcome you to Mayo Connect. I commend you for your question related to being in the best shape for your kidney transplant. As an organ transplant recipient, I know the benefit of taking care of yourself in preparation for the surgery and for the recovery. I am happy to hear about your daughter who is interested in being your donor. I am equally sorry to hear of your recent setback.

I want to share a link to a discussion (Pre -Transplant Diet and Exercise Ideas ). I invite you to meet others who have experienced similar concerns. I invite you to read the conversations, and to know that you are welcome to join into any of the conversation with questions or comments.
https://connect.mayoclinic.org/discussion/pre-transplant-diet-and-exercise-ideas/

Here is a Newsfeed Post – Countdown to Living Donor Surgery: Key Steps
https://connect.mayoclinic.org/newsfeed-post/countdown-to-living-donor-surgery-key-steps/

judith, How active were you before you broke the trochanter 2 months ago?

Liked by susancarter, Judyth

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

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.

Good Luck Marvin! You are a tough cookie having been through so much. Just one thought to share, always take someone to the doctor with you so that the information given is retained. It's hard enough being the patient and trying to remember all they say and do. LifeGift has volunteers that are trained to walk the journey with you. You might consider calling them when you get on the transplant list. They can also share ideas for fundraising your friends might do in your honor.

@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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@marvinjsturing, This really sounds promising for you! I know that this must surely be a relief of sorts to be able to begin the process!
By beginning the process, you will be well monitored and ready to "Go forward in 2020". You are absolutely right – 4 very busy days lie ahead. I think that you will be amazed by the level of compassion and knowledge that await you.

Is someone going with you to be your extra set of ears?
Do you have any questions about the Mayo Campus?

Liked by gingerw

@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

@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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@marvinjsturing, I think you and your wife have an excellent plan! I also kept a notebook and it evolved into a journal of my journey to transplant. It is my personal treasure.
I would like to recommend that you check out the Gift of Life Transplant House. I don't know whether or not you would qualify with your inactive status. My husband and I lived there for 11 weeks in 2009, and we often stay there for our annual visit to Rochester.

I hope that you have a good visit and that your evaluation goes well. I will be looking forward to hearing from you after you return home and get rested up.

@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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@rosemarya @marvinjsturing we stayed at Gift of Life while my husband was doing his workup to be listed on the transplant list. We also stayed before he was officially activated on the list. I hope this helps.
JoDee

@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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@jodeej, If you stayed at the new one, you most likely stepped on our paving stone in the peace garden!

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

@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:-)

Liked by jodeej

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

@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!

@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?

@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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