Stephanie McGinnis

LIVING Kidney DONOR NEEDED

Hello friends and family! Many of you know that I have kidney failure and that I have been struggling with dialysis and poor health for over a year now. I don’t talk about it a lot because I prefer to focus on the positives, like how lucky I am that I live in an area with such excellent medical care just a short car ride away. I also want to keep things as normal as possible for my girls, who are 10 and 13. I go to all their sports competitions, standing in the front row screaming my head off! I take them to practice, play dates, and parties. If I don’t get a transplant and/or something terrible happens, I want them to remember that I was always there for them and not holed up somewhere letting my illness control my life.

I started off last year doing peritoneal dialysis. I had to have major abdominal surgery to place the catheter so that was pretty rough. I also had some complications that landed me back in the hospital about two weeks later. After I recovered from that I got into a rhythm doing peritoneal dialysis (PD). I would hook myself to the machine at night and the dialysis machine did the work for the next 10 (!) hours. Even though PD was supposed to be the “better” dialysis, that never came to fruition for me. The long dialysis time, the bloating from all the fluid in my abdomen, and the constant alarms at night finally took their toll and I made the decision along with my medical team to switch to hemodialysis (HD). HD requires access in your arm where the needles are placed to connect to the dialysis machine. But since I had to switch to HD before I could undergo that surgery, I had to have a temporary central line placed in my chest. And because it’s me, there were complications with that procedure, too. About 2 weeks later my neck became very stiff and swollen. I took myself to the ER and it turns out that the catheter caused a blood clot in my jugular vein. That resulted in an 8 day hospitalization to get on blood thinners and get the levels right. Now that I’m on blood thinners I have to wait a little bit to have the arm surgery. Thankfully I am able to keep using the catheter to have dialysis. I go three days a week for three and a half hours each time. This is so much better for me and my family than PD was. I leave the house by 5:30am and my husband gets the girls ready and takes them to school. I finish dialysis and go home and nap because it washes me out so badly. Them I’m up to pick the girls up from school and to their activities. With PD I always had to worry about going to bed between 9 and 10 to get the 10 hour treatment in, and be done at a reasonable hour of the morning. This way I can stay out at the girls practices and not worry about it! Thankfully HD is letting me live a more normal life!

I need a kidney transplant. A transplant from a living donor can last an average of 15 years! I pray every day that I make it through to enjoy life with a transplant and not worry about dialysis, what I’m eating, or how much fluid I’m drinking. A living donor would be best but I am also on the waiting list for a deceased donor kidney. I was told that my wait would probably be 5-7 years because of my blood type and something called antibodies in my blood. It’s really scary to think about - that there are so many people waiting and not enough donor organs. So many people die while waiting for a deceased donor organ. Dialysis is a miracle that lets me live but it takes an extreme toll on my body. I constantly worry about dying while waiting to be called. I worry about my girls and my husband if I were to die. I want to see the girls graduate high school, college, and see them get married. I want to be a grandmother. So for now I will do all I can to follow my doctors orders and stay as healthy as I can. That means dietary restrictions like potassium, phosphorus, and salt, and fluid restriction of 32oz a day. I want to make it through this waiting time and find a donor! That’s where I could use some help. A number of people have been tested to see if they match me, but for various reasons it hasn’t worked out. Maybe someone reading this has a calling to be a donor? Maybe my story got forwarded and a stranger decided to get tested? It’s not easy to say or think abou these things, to share my medical sort, or to ask a family member/friend/acquaintance/stranger to donate but here I am. I am being honest about the struggle but also about the joys that I still have. I want ti be here for my family so I need help from someone. If you are so inclined, I would be honored and humbled if you would share my story.

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