Help me find a living kidney donor

Hello everyone! My name is Amanda Quitorano and I am 38 years old. I have been living with end stage renal disease for two years. This means that my kidneys are no longer functioning the way they used to and I need to be hooked up to a machine which acts as my kidneys to clean out my blood. I get dialysis treatment 3x a week for a maximum of four hours. I find it awkward talking about myself and like being the one to listen to. I have always felt uncomfortable doing it. I was afraid to share my story. I finally have the courage to tell  my story. I’m not only doing this for myself but for my family. Especially for my dad who lost the battle to kidney disease. He showed me strength, patience and love.  What I’m doing is something I really can’t do on my own and it will increase my chances of living a full and meaningful life. Guam being stuck in the middle of the Pacific and the lack of certain health facilities such as a transplant center I will have to go off island to get evaluated by a transplant center.

 

Before I started dialysis, I just started working as a nurse at Guam Regional Medical City (GRMC) in early 2019. I began to notice something different. My legs were starting to swell and I thought it was because of the long hours of standing at work. I began to live a healthier lifestyle by eating healthier and exercising. I thought to myself that if I start living a healthier lifestyle then the swelling in my legs would go away. I noticed other changes such as easily forgetting things, having shortness of breath, lack of energy and difficulty walking. The swelling in the my legs was not going away and it was getting worse. My performance at GRMC was being affected by my worsening condition and so I decided to resign from GRMC and work somewhere less stressful and as a part time employee. Because of my stubborness and fear of finding out the truth I didn't get checked up. My family intervened and made me see the doctor. In late May of 2019 I saw a doctor and it wasn't good news. My labs were abnormal and my kidneys were failing. Few day after seeing my primary doctor I was admitted to the emergency room at Guam Memorial Hospital (GMH). There I was admitted and immediately started on dialysis. I was June2019. I was defeated. I should have taken better care of myself. I disappointed my family. I was a burden. So many negative thoughts filled my mind. I had disappointed my dad especially since he too was on dialysis and had told me multiple times he doesn't want me to be in his position. I felt like a failure and wanted to die. I have never been so depressed in my life and so mad at myself. Few months after being on dialysis I lost my vision. My mental health was doing better and then I had another roadblock. I didn’t want this and I was afraid. I felt more of a burden. It was the darkest year of my life. I didn’t want to live anymore. But there was hope. I had surgeries on my eyes and my vision returned by the end of the year. I started to see brighter things. To be grateful for my family, friends, doctors, medical advances and even though dialysis was time consuming it was making me live another day. I started to work again in September 2020.

I have been told there’s a good chance I could advance to transplant if I’m able to find a suitable living kidney donor. One of the biggest challenges in waiting for a transplant is surviving the long wait for a kidney from a deceased donor. With approximately 100,000 people waiting for a deceased donor’s kidney and an average wait of five years. I now see that I’m putting my life at risk by doing nothing more than waiting. Today I’m choosing to do more. My family, doctors and nurses are encouraging me to find a living kidney donor who can end my wait for a transplant, so I can live a better quality of life. While I believe I deserve this, this is not just about me anymore. I know the toll dialysis has had on my friends and family, and I want to offer a better version of myself. This new awareness helped me find the courage to share what I've been learning about the value of getting a transplant from a living kidney donor. I guess you could say that I’m on a mission to help all those in need by getting this information more well-known. If you choose to read on, you’ll see how this “awareness wave” unfolds.

 

 

As many of you may know, dialysis is a mechanical process that attempts to mimic the kidney function by mechanically filtering the blood. This is a long drawn out process that lasts for several hours at a time, several days a week, if not daily. This treatment option requires a surgical procedure, so the machine’s filtering process can gain access to my bloodstream or belly lining. From what I’ve been told, it’s not uncommon to require multiple surgeries to keep the “access line” functioning properly and free from infection. Dialysis also requires a very strict diet and liquid limitations, including water. Treatment can be painful, nauseating and causes days of lingering fatigue. Most discouraging thing about dialysis is that it only provides about 13% of normal kidney function, which is less than what I have right now and I already feel like I’m running on empty.

 

While getting a transplant requires a major surgery and a “donated kidney” in order to perform the surgery-it also requires life-long immune-reducing medications to ensure our body doesn’t reject the new kidney. Nonetheless, transplants are the best option for those who medically qualify. When I start to imagine a replacement kidney that could provide me 24/7 function (without real diet or fluid restrictions, or spending endless hours on a dialysis machine), it seems like a fairytale. Yet, this type of life-enhancing fairytale is worth every ounce of effort in helping it come true.

 

Unfortunately, the average wait for a deceased donor’s kidney can be 5 years. With nearly 100,000 people waiting for a transplant-and roughly 35,000 additional names annually. I fear I’d be risking my life waiting on dialysis for a kidney from a deceased donor. I also understand that even though dialysis can add years to my life, most of the extra time would be spent on dialysis. I’m told there can be serious risks long-term, life developing infections and other health conditions that can lead to less desirable outcomes and illnesses. Moreover, some of those conditions would disqualify me from ever receiving a transplant.

 

I am told the best way to advance to transplant and end my need for dialysis is by receiving a kidney from a living donor. Living donors are individuals who are healthy enough to donate one of their two kidneys (while they are still living)-while expecting to live a full and meaningful life after donating. While receiving a kidney from a living donor can eliminate my wait for a transplant, there are additional benefits to be gained. For example, it has been well documented that transplants performed with kidney from living donors often function better, last longer and respond more favorably, than kidneys from deceased donors. These new discoveries have triggered me to learn more, do more and share what I’ve learned with others.

 

Please accept this letter as an open invitation to helping me in finding a living donor team, by sharing my story on social media pages or donating. Even if you can’t join this effort, know that you’re helping me by just reading this letter. The way I look at it, the more people I can educate, the more awareness I can create-and the more awareness created, the greater the chance of finding potential living kidney donors.

 

UPDATE: As of August 2023. Keck hospital is no longer where I will be having my kidney transplant. I completed the evaluation but they decided to close my case because I live too far away. They did inform me that if I do decide to move to Los Angeles then to I can refer my self back to their hospital. My family and I decided to go to the Philippines for my kidney transplant.  

For those of you who would like to hear a bit more about the living kidney donation process visit: 
https://unos.org/transplant/living-donation/ 

If you guys or anyone is interested in donating, here is the link to sign up: 

For those of you who would love to repost this message, I thank you from the bottom of my heart (and kidneys) for increasing my odds for a better tomorrow.

If you made it down this far in the letter, know that there’s no need to respond. The time you took to read this update is a gift in and of itself. With immerse hope and gratitude.

MY BLOOD TYPE: