Looking for what to expect as I consider Kidney Transplant

Hi Kimberley and Brenda. What a lovely photo. I hope you'll add it to your profile, @kimberly90.
I read in another post you made that Kimberley is your daughter, Brenda. And that Kimberley needs a kidney transplant and you would like to be her donor.

Are you a match? Or are you part of a non-directed donor chain?

@roxylulu Welcome to Mayo Clinic Connect! That is so great to hear about your husband's recent transplant!

I am on peritoneal dialysis at home. Due to ongoing blood cancer treatments, I am not eligible for transplant, so being very careful with daily precautions is of utmost importance to me.

I look forward to hearing about your husband's return to the best health he can have.
Ginger

After years of declining kidney function coupled with decades of fighting high blood pressure, my husband got a transplant in November 2013. I thought our lives would change for the better, but I had overlooked who the patient is! Right after transplant, instead of making plans to do more things, live a better life, he announced that he had quit his job, had earned retirement, which, to him, means that he does absolutely nothing, turning me from wife to full-time caregiver. He has a long-standing issue with back pain due to three failed surgeries, but it all would cease to be a problem IF he were willing to do PT, be active: lying on the couch for much of most days only increases back pain. He was fired during 2019 by both the pain clinic and PT because he totally refused to do anything they asked him to do. He was given shots directly into his back (a hospital procedure) twice, the purpose being that, with the resulting temporary pain relief he was do ramp up PT and activities right after the shots in order to maximize the benefit. He refused, so, no more shots, no more help from the pain clinic since he totally refused to do anything they asked him to do. The PT who had worked with him for an hour biweekly for ten months, finally told me it was completely hopeless as he refused to do even the simplest exercises at home. He began spending more and more time lying down (which causes more back pain), walked/moved far less (which causes loss of balance, then more pain due to low balance function). Soon, he required a walker. I bought one with extra-large wheels so that he could use it on our gravel road, but he refused. Now, it's a really big deal for him to walk "all" the way through our 20' kitchen to the back door and then about 15' to the car. He refuses to lift anything. He sits up so seldom that he's very uncomfortable riding in the car, so never wants to go anywhere. Fortunately, we do live on wooded acreage where the constant parade of critters past our windows is somewhat like living in a wildlife preserve, but I'd like to be able to get out into the world occasionally...we could afford to do so. I can't leave him for any length of time, as it's "too hard" for him to take a plate of food out of the 'fridge and put it into the microwave! Everything is "too hard."

So, although function of his new kidney has been flawless throughout the past nine years, it has failed totally to make his life better. Very disappointing, especially since I married someone younger so that I wouldn't need to deal with this kind of crap! I get out into the world by doing lots of volunteer work...most days I'm out and about, and some of it requires lots of lifting (feeding needy schoolchildren), which means I have no osteoporosis, due to lifting 800 pounds of bread multiple times to load it into the Backpacks van and unload it and deliver it around our small town. I'd like to do some modest car travel, to fish rivers I've not fished or not fished often enough. I'd like to be able to camp out, but can only do it on my own property. Even driving to my daughter's 80 miles away is "too hard" unless I get very pushy, resulting in another nasty argument.

So, please, once you get a new kidney, USE it to the max! Live! Enjoy being able to do things you weren't able to do while on dialysis! A functioning kidney is a tremendous gift, one each recipient should utilize to the max!

Hi Sevkira,

It’s a very personal decision based on where you are in your life and what your life goals are, but make a very educated decision.

I received my kidney transplant October 2022 and for me it was an easy decision. My grandmother was on dialysis for 11 years and struggled with it. To put this into perspective, I’m 56 and she passed away when I was 13 and the dialysis treatments have improved greatly since then so don’t let that influence you. What made my decision easy is my mom got her kidney transplant at age 42 and lived a wonderful live for 34 years on the kidney she received from her sister. I got diagnosed 14 years ago and knew it was coming someday so was mentally prepared for it, but that’s my life.

Suggest you learn as much as possible about both, talk about both options with your Dr. I fully trust Mayo in Rochester, MN as all staff members treat you so well and are all kind and they are the best in the world. Take a piece of paper draw a line down the middle, one section is dialysis, the other transplant, on the bottom write the life goals you want to meet or the life you want to live or whatever comes to mind. Then in the two sections write pros and cons for each. Now think about all of it, wait a day or more, then read it again, update as needed, then make an educated decision on which is best for you and the life you want for yourself.

If you decide it’s a transplant don’t hesitate to ask anyone even if you don’t think they’ll donate you one. My angle donor is my wife’s best friend since birth and I’ve know her since we were all in high school together. She is someone I didn’t think would donate, wow was I wrong, she was second in line after my wife and a match. Bless her heart!!! She has been amazing through the entire process.

Whatever you decide I truly wish you the best!!!!

The coin in the picture shows my personal motto’s and it still helps to remember this every day.

Dan

2 weeks post. Implant at Mayo Clinic in Rochester, MN. Some have asked what to expect. Mine was a living donor (daughter) transplant. I was not on dialysis yet. Implant went well, I was in the hospital 3 nights. Discharged to a local hotel with a catheter for 3 more days. Needed a wheelchair for a couple more days, then able to walk 2 blocks to the clinic. Lots of follow up visits and tests, adjusting meds, assessing function. Some minor side affects to meds. Creatinine still moving a bit, haven’t stabilized on blood thinner therapy for previous DVT yet; within a couple days of stability and clearance to go home.

Another patient implanted here the same day May go home this weekend. They’re working on his blood sugar ( diabetes) level and blood pressure meds.

Nephrologist said that every patient is different and almost everybody has something that takes a bit extra time to adjust or resolve. Sounds like 2 weeks is earliest for going home, can be a month.

God Bless you all in your journey.

Welcome @renrussie. You're so right that many come here asking what they can expect with kidney transplant. Your story helps. For that reason, I moved your helpful and hopeful message to this existing discussion:
- Looking for what to expect as I consider Kidney Transplant https://connect.mayoclinic.org/discussion/kidney-transplant-1/

Everyone is different. While you may have to wait longer before going home, it sounds like your team is working closely with you to ensure a smooth recovery.

It's a lovely picture of you and your family (I assume). Who is with you at Mayo Clinic? We like to cheer the caregivers too. Their role is crucial.

An update: creatinine has creeped up. They have me back in the hospital to drain some fluid from around the kidney and do a biopsy to check for signs of rejection. It’s going to be a little longer.

@renrussie - That is a beautiful picture and I love the personalized T-shirts!
My transplant was in April 2009 at Mayo Rochester. I can understand your disappointment about an extended stay in the hospital. At least you are in a beautiful place with excellent patient care.

Are you able to walk around outside your room? I remember when my husband would push my wheelchair to the window so I could sit in the warm sunshine. I hope that the sunshine and warmer weather will be arriving soon for you to enjoy.

How are you feeling while waiting for the biopsy and results? How are you passing time?

I have not had to stay in the hospital; simply stay in town for frequent labs and appointments at the Clinic. We are at an extended stay hotel and walk to the Clinic. We have also taken advantage of the recent great weather snd gotten out to several local park for fresh air. I did have to go back to the hospital for 1 night for a biopsy. Results came back all good. Removing some fluid from around the transplant had creatinine heading back down.

@renrussie, Wow! That is great news that the biopsy results were good. Now you can relax a bit while you continue your recovery.
I am curious as to why you used the term "implant". I have only heard "transplant". Is there any difference?

As I said earlier, I love the photo. And it reminded me to share this group with you:
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
And here is a place where you can share your story when you are ready. Do you think that your daughter would be interested to share her story, too?
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/