Kidney Donation Request
Many of you may know by now that I live with a rare disease called cystinosis. Cystinosis damages cells, causing them to crystallize and die. Only about 500 people in the U.S. live with cystinosis. The disease damages many organ systems including the eyes, kidneys, muscles, liver, lungs, pancreas, heart, and the central nervous system. For me it led to kidney failure and in 2013, I received a new kidney from a good friend.
Over the past ten years, that kidney has become tired and no longer works well enough to keep me alive. The cystinosis has also caused more damage to my body including swallowing issues, muscle weakening, diabetes, etc. I am facing these problems as well as I can. For kidney failure, I have a couple options dialysis or another kidney transplant.
Dialysis will keep me alive for the moment, but a kidney transplant would offer me the ability to live a healthier and longer life. The transplant would give me more time to do the things I enjoy; such as reading (all the star works novels), writing (my own novels), cooking, being with friends, finding love, and advocating for rare disease adults and for transgender health care rights. Dialysis is hard on the body and it doesn’t work as well as a kidney transplant. Dialysis increases the risk of getting infections and in some cases in cystinosis patients, it could increase the risk of non-renal damage. I would not survive long on dialysis because of the many risks to me.
However, finding a kidney is not easy — especially when you’ve already had one kidney transplant. Time is not on my side: many people wait for years. Many die while waiting. The average wait time is five years or more for a kidney from a deceased donor.
I have another option: receiving a kidney from a blood type B or O (positive or negative) living donor.
Asking a friend to consider donating a kidney to me is difficult, however, it greatly improves my chances of getting a kidney transplant and living longer. Additionally, a living donation usually lasts longer and has better function.
Here’s some basic information about kidney donation:
- You only need one kidney to live a healthy life.
- Most donor surgeries are done laparoscopically, meaning there are smaller scars and faster healing.
- The recovery is usually about two weeks.
- The cost of evaluation and surgery will be covered by my insurance.
- You will have a separate team of healthcare professionals to evaluate you as a living donor. They will help you understand the risks and benefits and look out for your best interests.
Thank you for reading my story. If donating a kidney to me is something you would like to consider, I would be happy to tell you more about my story and answer any questions. I can also mail you a packet of information and/or you may call my transplant center at 319-353-7704 or visit uiowa.donorscreen.org.
If you cannot or do not feel you can donate, please help me by sharing my story with everyone you know. I am hopeful my efforts will help find a potential donor soon.
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