Share your Spare: My Friend Needs a Kidney
As many of you know, my dear friend Casey Phillips is in need of a kidney!
She recently found out that she will soon have to start dialysis.
She is looking for a donor with O+ or O- blood type!
You can find more details about Casey's journey on Instagram: @opositively_needakidney.
Casey’ Story:
HOW CAN YOU HELP?
#ShareYourSpare Tshirts
Please consider buying a shirt to help spread awareness for Casey. All proceeds will go to Kidney Foundation of Ohio Inc.
LETTER FROM CASEY:
I have came to realization that many think I have reached my potential donor and are just waiting to be transplanted. Unfortunately, that is not the case and I do not yet have a donor in place. I was close a few times. But I am still searching for the gift of life of a kidney donor.
This is End Stage Renal Disease. Other known as Stage 5. You wouldn’t be able to tell I am sick by looking at me. Although the numbers on papers say otherwise. Things are progressing as expected. In reality, things are so different from what I had in my mind of what this stage would be like or when I would be here. Although I feel good most days. Days are becoming harder. Dealing with the secondary issues that come along with the decreased kidney function can be physically and mentally draining. Not to mention the exhaustion.
A lot of hard changes in the past 3-4 months. The diet restrictions are the hardest to get right. Low sodium, low potassium, low phosphorus, low meat protein, unprocessed. That’s right, that leaves me with about 20 food options. (The best foods have high potassium I am sadly finding out) In a non-depressing way, some days I just want to give up. It’s hard, this is hard I truly feel so weak and hopeless at times. But, I have way more good days then bad days. The support I have through this is tremendous. Through this I truly have felt strong, empowered and motivated to keep fighting because when I focus on the days ahead I know it will be something great and rewarding to feel “alive” again.
End Stage Renal Disease as it sounds, it’s kind of scary. However don’t let the name fool you— it’s not the end. I do have options. As of 02/2020 I entered Stage 5 which means I have 15% or less of my kidney functions left. Intervention has to happen soon to keep me alive and thriving.
Kidney Transplant or Dialysis are my two options looking forward. Kidney transplant is my best possible outcome for many, many reasons. Dialysis is very diminishing on the body. It comes with a lot of day to day life style changes and the treatment can be completely exhausting and comes with harsh side effects. But, it could be the only thing keeping me alive so I can not complain about its side effects. My doctor believes I will be able to fall to 8% of function before I would start dialysis. (I am at 15% right now) I have taken courses on dialysis and my doctor and I have chosen peritoneal dialysis if I can not find a kidney donor. Dialysis = Plan B.
Plan A = Kidney transplant. I am listed AND approved for this to happen. Just missing the donor factor. Finding a live kidney donor for transplant has many beneficial outcomes. They last 2x longer, work right away, keeps me from getting more sick while waiting for that call on the deceased transplant list, could be years from now. I am in hopes of finding my live kidney donor out there somewhere. I truly believe they will come along at the right time. My God is a provider and I have to trust in Him.
A small back story of why my kidneys are failing at the age of 25: After falling ill in 2005 we actually “accidentally” found out and was diagnosed with my kidney disease a year later. In 2006 when I was officially diagnosed with Focal Segmental Glomerulrosclerosis, a kidney disease where the filters on my kidneys become scarred and over time they lose function and can’t properly function and filter my blood the way they were intended to. We always knew it would get to the point of a kidney transplant. We just never knew the timeline. I couldn’t be more thankful for these 25, almost 26 years of normalcy. (Most have 10 years once diagnosis before intervention, such as transplant or dialysis, are needed) I did well in the 14 years of being diagnosed. I really didn’t start to lose my function until 2017 and I really haven’t had to add in much restrictions until 2018.
♻️ SHARE YOUR SPARE! I have heard this phrase over and over while attending classes and groups in the process of transplant.
Truly, our bodies are equipped with a spare part that could save hundreds of thousands of people waiting on the donor list, like myself. Our bodies have two kidneys—where as one healthy person will only use ONE kidney in their whole life time. Isn’t that interesting? The human body is fascinating. I never want to stop learning about it.
After finding out it was time to start the transplant process. I dealt with this privately with my close family and friends for awhile. I went out on a limb 10/2019 after finding out my brother and I were not a compatible match and I turned to Facebook and made a post, kind of like my post you’re reading right now. The support, shared, encouragement, inquiries, prayers, etc were just pouring in and made me feel like I could conquer the world with this kind of support.
Social media can be powerful. I reached a lot of amazing people. Many were even strangers. Selfless strangers who didn’t know me from Adam at the time, now they’ve become friends that I cherish. To the many people who it just brought light to or raised awareness. Most don’t understand the need for transplant in the US not to mention around the world.
A few potential donors made it through many rounds of testing. (Initial testing is done locally to you. Many test are even mailed to your door step for convenience) Unfortunately, each potential donor I had ended up being “knocked out” for various reasons. You basically have to be in perfect shape for them to take your kidney for donation. Which is good! They do extensive screening to make sure you’re not risking yourself down the road.
(PS— due to HIPAA Laws I only know those who inquired or began testing if the person testing told me themselves. Ohio State does not allow me to know anything. It’s a very blind process for me. Which makes it hard for me.)
🩸 My blood type is O+ therefore I am only able to receive O positive or negative +/-. I am also open to the Paired Exchange Program. This program which allows if you’re a good donor candidate, however our blood types do not match, they would transplant your kidney into patient A and patient A’s donor would be a match for me that I would receive. So it was like a 4 person trade/process.
I would be happy to sit and talk with anyone who has questions, information, etc. Maybe social distance style. But I am here and am an open book!
My transplant team is located at Ohio State Wexner Medical Center. Which, this website has contact information as well as a lot of good resources that can answer many questions about the process, why it’s important for me to receive a live kidney donation, etc. All around good resources.
https://wexnermedical.osu.edu/transp…/living-kidney-donation
And, if this is something you’re not interesting in? I completely understand. I would never push this upon anyone and that is the last thing I am trying to do. This is a big task to ask for. I am really going out of my comfort zone with this post, just trying to maybe reach that person in some possible way. I’ve seen it done. All I can do is encourage and ask for prayers, positive vibes, uplifting encouragement. Whatever it is you may believe in— do that for me.
Also, consider becoming an organ donor next time you renew your license. Or do it now online. That way when your body is done with your organs, Up to 8 of your organs can be repurposed to 1 of millions awaiting on the dreaded transplant “list”
Feel free to share this post & in hopes of reaching my potential new, healthy kidney bean!
I’m thankful for you all.
-Casey
