The Big Ask…
Dear Friends:
I hope this message finds you well, or at least finding some peace and joy in your days.
If you are on Facebook, or have heard thru friends or family about my health journey with iGa Nephropathy. If not, it’s time for me to reach out of my comfort zone and speak about this disease and the challenge in which I am currently presented.
Five years ago, I was diagnosed with another (after Crohn’s Disease) autoimmune disease called iGa Nephropathy via kidney biopsy. My kidney function at the time was about 37%. Sometimes called Berger’s Disease, it’s where antibodies in your blood (iga) attack the filters (glomuleri) of the kidneys. Kidneys serve many functions besides just cleaning your blood, like regulating hormones and minerals and nutrients. Autoimmune diseases are complex and this one is made more complicated by my previous bowel resections and flares with Crohn’s Disease. I’ve been told by my nephrologist that roughly 20% of the people who have it will suffer from kidney failure. I’ve had excellent treatment at the University of Kansas Health System and The Mayo Clinic. At the present time, there is no cure for iGa Nephropathy. So, fast forward to now as my kidney function fluctuates (eGFR) around 22%, it turns out that I’m part of the 20% that will need a transplant. A “normal” person’s eGFR can vary around 100. As you age, your kidney function naturally declines due to a variety of lifestyle factors.
Fortunately I was approved by the University of Kansas Transplant program on May 12, 2022.
My initial plan is to find a living donor. This involves a phone interview, and if you pass, KU will coordinate with you to get a blood sample. My medical insurance will cover all of the donor’s medical expenses from initial test thru surgery.
Also, the process of everything (transplant evaluation, interviews and testing) is quite involved and time consuming. As you are reading this, I’m sure you have questions. Does it hurt? Can I feel it? What is it like? Within the last few months I have been becoming steadily more anemic and suffering from extreme fatigue, dizziness, headaches and leg cramps. A day of fun with friends (which is so cherished) leads to a day or two of rest. I have had to take a break from work and take frequent naps. Also, because of my low kidney function and previous bowel resections, it is difficult to stay nourished and absorb nutrients from food.
Mentally, it’s tiring and exhausting. I am, however lucky to have a good support system with friends and family and a great medical team where I can lean on.
Good news: I am living. Trying to appreciate everything time & energy let me experience. I’ve become quite the birdwatcher! I’m doing everything I can to maintain a positive mindset. I pray every day. I am a slave to my schedule and learning to be kinder to my body. I wish I did not have to learn like this, it is what it is, I will continue to keep my eyes on the prize - life after transplant. (Scuba diving again, more birthdays, more mornings on the porch with the birds and the sound of the ocean, visits with friends, being present at events)
How long until I need another kidney? I’m not sure to be honest. But judging by the progression of my kidney function I need to address the issue now to stay ahead of the game. The goal is to have a premptive kidney transplant before I need dialysis.
This greatly increases my chances my chance at survival. Being on dialysis does not provide all the functions of a live kidney. Every year in the United States, there are around 100,000 people waiting for a kidney transplant and about 18,000 transplants take place. About 6,000 of those are live kidney donors. (Information from the National Kidney Foundation www.nkf.org
So, what I’m asking you dear friends is to please spread the word to help me find people willing to make the call to find out more about donating a kidney to me and potentially find a living donor. This person does not need to be my exact blood type. Kidney donor wait time in the Midwest area is about 2-3 years. Also, I learned that you do not need to be the same blood type as me because there is a kidney swap program where we could swap donors with other kidney transplant patients which is really cool.
Reaching out individually would take a tremendous amount of time and energy, I have made a decision to cast a wider net in hopes that I can find a living donor. Thank you, much love to everyone. Remember to please be kind and gentle. Feel free to share this information!!!
Here is the contact information:
Christina Self, Kidney Transplant Administrative Coordinator
University of Kansas Medical Center
Phone 913-588-6929
Fax: 913-945-7846
Thank you so much for reading this and passing it along.
Carolyn Courtney Walker
Mobile: 913-523-6582
