Hi, everyone –
It’s been a busy few weeks with birthday celebrations and spring time activities! Please follow me on Facebook and Instagram (@carolydz) to stay up to date on the latest updates and happenings. And, of course, don’t forget to share the posts with everyone you know! The more folks who know, the higher probability there is that someone will sign up that is a match for me!
I do not yet have a match, and I do not know how many folks have signed up to donate. So, it is still imperative that you share the site and encourage your network to sign up and share!
I’ve also been compiling some questions regarding the website, kidney transplant in general, and my health status. So, here we go!
TLDR: I need a kidney; I need your help to find one.
Website
The nckidney.com website is owned, created, designed, and executed with love by Marek and me. Some of you asked if it was premade: it is not a template, and it was not provided by any central resource. It is our creation and way of trying to get the most eyes and clicks on the issue of finding me a kidney.
It’s also a resource for you all for questions about the transplant process – both what I am going through and my search for a living kidney donor. Most importantly, it serves as a quick access point for you, and anyone you might know, to sign up to be a donor for me.
If you sign up to via the link to see if you are eligible kidney donor for me, you are signing up only to see if you are a potentially eligible donor for me and only me. Your information goes directly to my file at Duke University, and they will contact you. Neither your personal information nor the results of your eligibility will be used for anyone else’s search for a donor. If paired matching becomes an option for me, you will be asked directly if you want to participate.
Please do not be deterred if you get a response that you are in the queue or that Duke is busy! They will get to your application! And really, what medical facility is not busy these days? It is not indicative of your eligibility as a donor, just their workload.
Marek and I chose ‘nckidney’ as the name for the site because, in the future, I hope to use it to help other folks in NC who are searching for a kidney. There is a surprising lack of concerted resources to find a match.
I was told ‘You have been listed. Given your age, lifestyle, and overall health status (despite the kidney issue), a living donor is your best option. Try to find a living donor before you have to go on dialysis. There is no exact timeline for your needing dialysis. Good luck.’
The whole thing was a little disorienting at first, and I hope that once I get my kidney, I can help someone get theirs. However, for now, the website and all the links and information contained within are all mine.
Kidney Transplant, in general
One of the main questions I get, and always appreciate, is ‘How is the search going?’
I honestly have no idea. It takes a lot of people to sign up and get tested to ensure that I find an appropriate match. The information about the donor side processes is completely sequestered from me. So, the only knowledge I have is what folks would like to share with me. Duke will not share any hard data with me regarding how many people have signed up or how the match process is going.
It only takes one person to be a match, but it takes that person signing up and making the decision to donate.
Unfortunately, there is nothing that I can point to that would indicate if you would be a ‘good match’. At the end of the day, the most critical test is when the doctors literally mix our blood together on a plate to if it has any adverse reactions. There is no way to know if our bloods are compatible before that test, not even blood types will tell you that. So, the best thing to do if you’re curious is to sign up and go through the process.
Using the link on this site to sign up to see if you can be a donor does not obligate you in any way to be a donor. It’s the first of many steps in the process. Further, the link on my site and everything on my site is only applicable to me. If you sign up to see if you’re eligible to donate, you are only signing up to see if you’re eligible to donate to me. You will never be evaluated for someone else without your explicit permission.
Notably, as the donor, you can stop the process at any point you would like. Being evaluated is a multi-step process that, hopefully, culminates in you being a match for me. Even if you are a match though, you can decide that you don’t want to go through with it.
Until the actual donation surgery starts, and you go under anesthesia, you can instantly stop the process, whenever you would like. At all times it’s completely up to you to continue, and you are in full control of proceeding. I hope you decide this is the right decision for you, but I know it’s scary. It’s scary to me, too. I have made a concerted, informed decision to undergo this process. I appreciate your thoughtfulness in doing the same.
The kidney donor process is challenging for me to explain in more detail because I only know it from the recipient side. I’m also learning alongside you, and I appreciate folks reaching out to let me know their experiences in donating to their loved ones and strangers. There are several great resources out there that describe others’ experiences.
My Current Status
The other question I’m asked most often is ‘How are you doing?’ Again, I always appreciate it. All things considered, I’m currently doing well. I’m not on dialysis. I’m still swimming. I’m still working to get a drug approved for lung transplant recipients and move the therapy forward in other, underserved populations who can be helped by this drug. I still love being outside in the garden. And, I’m still incessantly tracking my health, including my creatinine, to ensure that I remain stable in every other way – lungs, eyes, skin, etc. Since December, my creatinine (one of the simple ‘kidney health’ indicators) has been stable, which is a huge relief.
However, that stable number continues to indicate that my kidney function is severely impaired, resulting in my being listed for a kidney transplant. The discussion of dialysis looms heavy with every discussion with nephrologists and pulmonologists. Although things are stable, I know all too well how quickly that stability can change.
My ongoing requests for your help remain urgent.
I need everyone to sign up to see if they are eligible to be my kidney donor and to share nckidney.com with everyone they know so they, too, can get tested to see if they are eligible to be a donor for me. Stability does not indicate there is no longer a need. It means that right at this moment, I’m ok. But, that can change at any time and in an instant, and I’m desperate to be prepared. I’m desperate to have your help in my preparations.
My preparations for a kidney transplant are akin to training for one of the many sports and activities I love to participate in. I enjoy training and achieving my goals. I love to swim – for distance and speed; I love to play squash, cycle, and lift weights. This process of Being Listed for a Renal Transplant is like training for a long swim:
Learning to sprint to quickkly get your footing in the new world of transplant and the changes your body undergoes during this transition period. To understand how to swiftly maneuver and adapt, to breathe most efficiently underwater, while still moving moving forward as fast as possible.
Training with intervals where you are developing momentum coupled with endurance: integrating those sprinting maneuvers into sustainable actions; building both speed and endurance, over a longer period.
Last but not least, training for endurance: that slog where you push yourself when your body and mind are numbed by everything. It’s only you – lap after lap with you and your brain in the silence of the water, where you lose track of the lap number, and you’re just tired. But, you have a goal. You can hear the cheers of all those around you when you come up for air, and you pull yourself together to keep going. You’ve gone this far. You can go further. Your goal is to be prepared for the long-haul. To make the next swim, the next stage, easier. So, you continue. You stop concerning yourself with the lap count; you think about your form, about your breathing.
So, I train and continue.
Because I know what my goal is. I know where my heart is, even if I don’t know where my kidney is coming from. And, damn, if I’m not anything but tenacious in my drive to meet my goals.
Unlike in sports, there’s no calendar for this training. Every day has a different training regimen, and every day has its own challenges and victories. Every day is made easier by seeing my website shared, by folks reaching out to me to tell me they have signed up, that they are interested in signing up but are still thinking about it, that they are cheering me on with each breath.
All-in-all, I’m doing well. I’m hopeful that with your help, I can continue to do well, avoid dialysis, and find a match. I’m good at training, at setting a fast pace for the long haul. However, I can’t do this race alone; I need your help. Please join this marathon with me.
Sign up to donate, share the website, and continue to encourage your network – your training partners, friends, family, the folks who cheer you on, everyone – to sign up and share the website. It’s the only way I can finish this long race of finding the perfect renal match for me so I can continue to do everything and be with everyone I love so dearly.
With all my heart, and what’s left of my kidneys, thank you. Carolyn
You've done a phenomenal job explaining the process. Privacy is kept on both sides of the table-I know from my personal experience. I had no idea how many people were being tested for my nephew's living donor, and neither did he.
Yes, it's a major surgery but honestly I did it last year at age 65. Except for the 5 pound lifting restriction I was back to my normal life in a week.
I pray your donor is now going through the process and you'll soon get word that your perfect match has been found.