It is About: Time

Posted by: 
Naomi Feltz

Organ donation saved my life and has brought me the joy of living far beyond what I ever thought was possible!

I was not fully aware of how much I struggled in my day-to-day life until I began my life post double lung transplant. Explaining what organ donation means to me, is fruitless, because I could never describe how much I appreciate the gifts I have received from my organ donors. And since I have three organ donors, I have a LOT to be thankful for.

In Nov, 2012, my CF was stable and I was able to complete my daily tasks even though it was challenging. I was not on the lung transplant list at that time but I knew what was involved in getting a lung transplant (at least I thought I knew). One night, I was feeling unwell as I was struggling to breathe and my husband rushed me to the ER for what I thought would be a ‘tune up.' Within a matter of days of being hospitalized, they told my husband, Mark, and I, that I would need to be transferred to Pittsburgh because there was nothing further they could do in Buffalo.

When I arrived in Pittsburgh by ambulance, that November, a doctor told Mark I wouldn’t be leaving the hospital unless I got new lungs. I was not on the lung transplant waiting list yet. I had researched lung transplant a couple years prior and completed the entire evaluation in Pittsburgh because I knew it was likely I would need a transplant at some point in the future. After being hospitalized in Pittsburgh that November, I was listed on Christmas Day 2012 and received the ultimate gift that saved my life on January 4th 2013. I was on the list for nine days.

After my lung transplant, I couldn’t believe how easily I could breathe! It was eye opening! I began riding horses again, running 5ks races, singing at the top of my lungs for no one else but my dogs and my husband, of course- but I wasn’t just alive anymore! I was living! The best thing that I could do to honor my donor, was to take care of it the best way I could. I took all the medications that were prescribed, I attended every single doctor appointment, blood draw, medical test, and remained physically active in order to keep my new lungs healthy and happy. And they still are!

After my lung transplant, I knew I would be on immune suppression medication for life. Although these medications protect my body from rejecting my new organ, it was very hard on my kidneys. After thriving and enjoying life with new lungs, my kidneys were struggling to keep up and I was soon in kidney failure in 2017. My husband, Mark, knew exactly what was happening and he immediately called the local hospital in Buffalo to be evaluated to be my living kidney donor.The process to become approved to be a living donor is long, and there are many tests and evaluations to be completed but Mark was adamant about going through the process. The chances were slim that he would be compatible with me. As soon as he got the call from the hospital that his blood type matched, he told me and we couldn’t believe it. After I told my family that I was going to need a kidney, my younger brother also went to be tested to see if he was a genetic match. He was a perfect genetic match! I now had two living kidney donor matches! Incredible! After completing the entire process for evaluation, both of them were approved for donation. Doctors chose my brother to proceed with the surgery as he would be giving me the very best chance to have successful outcome as a perfect genetic match for kidney donation.

Even though kidney transplant seemed to be less intense of a surgery, with less recovery, unfortunate events can still occur. At some point during my surgery, the new kidney became injured, and was never able to fully recover and less than a year later, I was in kidney failure again.

This was extremely difficult for me to understand. My brother had chosen to do something for me to help lessen my pain and suffering, and things occurred that were beyond our control. I was thankful that my brother was recovering and that he was healing as expected.

Because I was once again facing kidney failure, Mark would have to go through the blood tests to determine if he was still a genetic match. Because I had many blood transfusions during my first kidney transplant, there was a chance that Mark would not be a match any longer. In the meantime, Mark completed the entire evaluation process again. On the day that I was scheduled to have my dialysis catheter placed, his nurse coordinator called from Pittsburgh to say that he was still a match for me!

The following week we were in surgery and everything during surgery went perfectly this time. As a kidney donor, Mark said it was the best thing that he ever did.

When someone asks me what my organ donors mean to me, I can say with every ounce of truth that they have saved my life. Organ donation has taught me that it is not things in the world that matter, but time. There is no price on time. There is no way to buy more time. Transplant has enabled us to live life doing what we love: going on adventures with our dogs, enjoying the outdoors, baking, painting, and running. Organ donors give us the gift of time.

After my lung transplant, I became a volunteer for my local OPO (organ procurement organization), Unyts, and now named Connectlife. I think the most impactful thing that I can do is bring awareness to organ donation by sharing my story. I have had the opportunity to tell my transplant stories to many groups, organizations, elementary schools, and high school classes as part of Connectlife’s ‘talk it up’ program, and most recently, on their podcast, Invisible Threads. Sharing my story about donation, has allowed me to tell people a personal account about how organ donation has impacted my life. When a person registers to donate, they have the power to save a life. Each of my donors has a very special place in my heart and has made me who I am today. It was because of their selfless choices, that I am able to live life every single day vibrantly and full of breathe.

We have the power to save lives by registering to donate. As part of my curriculum, I encourage my students and others I meet to have a conversation about donation with their family members. Make sure your family understands your wishes, and if you have been touched by someone who needs an organ or is waiting for an organ or who has received an organ, don’t be afraid to begin the conversation about what donation is all about.

 

Help Others Live STRONGER and LONGER-

 

Naomi Feltz is a three time organ transplant recipient. Naomi cherishes being a housewife and her favorite things to do are spend time walking with her husband and their dogs, baking vegan dinners, acrylic painting, weight lifting, and running. She is passionate about speaking publically about organ donation and sharing her story with whomever she meets.

 

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

 

***Please speak with your physician before making any changes to your CF management***

 

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