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Robin’s Story

"Mom donated her kidney to someone, and I received a kidney from another donor. "
My name is Robin, I am 56 and a kidney transplant recipient. I live with Lupus and about 10 years ago my kidneys started to fail.  I was told that we would have to address it at some point. Fast forward to 2 years ago and 2 biopsies later, I knew that I was in trouble. My nephrologist told me that I should start to look for a living kidney donor. And I did just that! 

My Mom and my sister both stepped forward to become potential donors and our donation journey began. There was a lot of testing both for them, and for me too. 

There were many appointments to meet the transplant team so I could learn what the transplant would entail. This was all during covid and I had to do all these things by myself and fill my husband in when he picked me up. My transplant team were and continue to be my lifeline. There was NOTHING that I wasn't prepared for or knew about because of them. Through the testing my sister learned that she might have Lupus, so she couldn’t donate. Mom and I didn't match blood wise. I was too sick coming up on surgery and couldn't take the risk of rejection.  That’s when we learned more about the paired exchange program.  

Mom donated her kidney to someone, and I received a kidney from another donor. 

In June 2021 Mom and I checked into the hospital. Mom came out of surgery with flying colors and to this day is doing great! My surgery went well too, and my medical team was happy. I got up that night for my little walk with the help of pain killers and laid back down. 

At the hospital where I had my transplant, I was given a BLACK BINDER!! This binder is literally your lifeline! Guard it with your life. Everyone will want to look at it and they EXPECT you to do your part. This binder will tell them EVERY pill you take and when, EVERYthing that you eat and drink and eventually pee out and all of your vitals. This binder will go everywhere you go for months. Keep everything in it so that you know it's all in one spot. Trust me. There are so many appointments and blood work - the extra organization will keep you sane! 
It wasn’t easy having a transplant during the pandemic. Only 1 person could come visit so I really looked forward to these times. My husband is the best. He would work all day (depending on his shift) and drive 45 minutes one way to see me for an hour. 

It was so exciting when I learned I’d be going home. I met with different members of my medical team - the doctors, pharmacist, nutritionist and physical therapist. I found that the pharmacist is someone I talked to weekly in the weeks following my transplant. The nutritionist is your friend if at any time you have any diet questions. We don't know it all, and we often have questions that we feel stupid asking. I assure you; they have heard it all and your team will be ready to help.  

Post surgery there were a lot of medical appointments, and a lot of driving back and forth to the Hospital. My energy level is better then at any point over the last couple of years. My new kidney which might surprise people is in front around my belly button. My kidney is working great, and my numbers are pretty much normal now. They even figure that my Lupus will go into remission because of the new kidney I feel truly blessed that I’ve received this gift.