Carolyn’s Story

Site created on October 28, 2019

Carolyn was diagnosed with Poly-cystic Kidney Disease in her mid-twenties. For those who do not know what PKD is, cysts grow all over the kidneys and eventually shut them down. Some people are very fortunate and won't be affected by it but for Carolyn, it has caused her kidneys to grow to the size of full term babies, who we have lovingly dubbed "The Twins". In the Fall of 2018 we were given the news that her function was low enough to start looking for a transplant. We also received the news that her anti-body count was very high which would make finding a kidney incredibly difficult. We were lucky that Mercy Health here in Grand Rapids, MI  is one of the top kidney transplant locations in the state and so close to home. We put a lot of hope into the Live-Donor program as this would be one of the best ways to find a kidney since a Deceased-Donor could be iffy. Carolyn had so many friends and family sign up to be tested. We even found a close match but because of her anti-body count, the match would more than likely reject. The search continued on and we began looking at Mayo Clinic to expand her options. As of October 28th at 7 A.M. our prayers were answered here in Grand Rapids and this is where her new story begins.

Newest Update

Journal entry by Kate Staley Weyerman

Good Morning All!

I just need to say it, that this has been a whirlwind of a week. We seriously cannot thank everyone enough for your prayers, support, making dinner, checking in, and all the love.

So we have some very good news! Mom is coming home this afternoon! (WHAAAT???) This is the question that keeps getting asked and believe me we keep asking ourselves the same question. Basically she has met all the markers required for discharge. Her kidneys are functioning outstandingly well that even the doctors and nurses are a bit baffled by the progress. We were originally told since they were pediatric kidneys and the way they were donated meant they probably wouldn't function well for a week or more until they adjusted to moms body. Fortunately the kidneys had a mind of their own and took off instead!

The kidney function has also doubled in four days time and her creatinine has dropped from a 3.3 to a 1.8 which is unbelievably outstanding.

She was also allowed to get up and move about as she pleases with no nurse assist. Finally they removed her catheter and drain tube last night, which may not have been the best thing since having four kidneys produces much more urine, which generally means more trips to the bathroom when she would rather sleep!

As expected we are all a little nervous to be bringing her home, but have been reassured by the doctors and nurses that they wouldn't be letting her go if she wasn't ready. She will be discharged sometime this afternoon and Eric and I will be going down to hear all the instructions and bring her home.

As a follow up to our friends and family. If you are interested in making dinner you can see what days are open by going to the "Ways to help" tab and clicking on the planner. If you see any days without a "Dinner - Name" that day is considered open. In that case please shoot me a text at 616-915-2604 and I will add you to the schedule and provide some guidance on dietary restrictions! You are also able to see her "Home Care - Name" which will be the person caring for her at home. She will need someone there 24/7 for the next few weeks until her restrictions are lessened! If you are interested in volunteering  please let us know and we will get you on the schedule!

The second bit of information is about coming to visit Carolyn at home. Please send either Mom, Dad or I a text or phone call before dropping by in case she is resting and one of us will give a good time frame to come visit. We kindly ask when you come visit that you be in excellent health and wash your hands extra well as you come into the house and even a couple times while you visit. The next couple months are so critical for her immune system while it works its way back to a new normal that we are being extra careful to keep her healthy.

Once again thank you to all. I will continue to post throughout this new journey but perhaps not as often as this first week 😁 

All our love,

The Staley Family
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