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I smile at her, pleased to have her up here with me when she’s been going through so much herself the last few months. Getting pregnant her junior year definitely wasn’t a part of her plans, but she’s handling it like a champ. Her belly is still small, barely noticeable, but it’s there and soon I’ll have a niece or nephew.
“We’re so proud of you.” My parents pull me into a hug—well, as best as they can with Jasper still holding on tight.
Looking back up at Jasper, he says, “You did it.”
I did it.
And you can too.
Spencer and Harlow’s story continuing in the standalone The Infiniteness of Yesterday coming soon.nbsp;
Willa’s story has been such a labor of love. I loved experiencing how she grew and changed, becoming the person she always was to start with but she refused to see.
Like Willa, I have my good and bad days dealing with my diagnosis. Thankfully, most days are good. I think it’s important when going through something like this to not let it consume you. Willa definitely struggled with that and I think it comes from so much time spent alone—I notice when I’m alone is when the bad thoughts get to me the most.
As of writing this it’s been over a year since my diagnosis.
When I was in the ER being told my kidneys failed I naively thought transplant would happen quickly.
I never in a million years thought I’d make it to a year without a kidney.
But the truth is the search for a living donor match takes a long time and it’s not a guarantee. Even with the people I have testing now nothing is set in stone. In fact, we got the great news my aunt is a perfect blood match (which is AMAZING because trust me they don’t use the word perfect often) but with her liver numbers not where they want them they keep checking that to see if it’s something treatable where she’ll be able to donate and not be affected later in life. The last thing any of us wants is for her to give me a kidney out of the goodness of her heart and end up in kidney failure herself down the road. So now it’s a waiting game to see if she is a good candidate to donate or if I have to wait for someone else to step up to the plate … OR if like Willa I have to wait for a deceased donor.
In which case I’d be waiting another three years or so, which, if I’m being honest, is terrifying.
While I switched to peritoneal dialysis a little over a month ago, and I’m truly so happy with this decision, it’s not ideal. It’s still not as good as having a real working kidney. But it’s so much better for me than hemo-dialysis. I hate to say this, but I truly had gotten to the point where I would rather die than continue with it. I hated how tired I was all the time—and not a tired anyone else can know unless they’ve done dialysis too. It’s a strange tired. Bone deep. And you feel so weak all the time. That’s due to the fact of how fast the hemo-dialysis pulls and returns the blood from your body as well as going from carrying approximately four pounds of fluid to none. It’s HARD on your body. With the peritoneal dialysis it’s slow (for me 9 hours every night) and more natural. Not everyone’s a candidate for it and not everyone wants to do it and that’s fine. I like that there’s options though and this has definitely been the best for me. I love that I have energy again and what’s crazy is my color is even different. People who saw me on hemo and then after on PD all said my skin color looks so much better.
But if you’re someone reading this who’s going through this too, I want you to know you’re not alone. Don’t be afraid to talk to other patients and voice your fears and concerns. Don’t keep it bottled inside.
Also, d
o your research because YOU are your best advocate.
Through all of this I’ve continued to repeat my life motto to myself.
Everything happens for a reason.
This is something I’ve told myself since I was a little girl and it couldn’t apply more now. Especially now as I wait and hope for a donor. As much as I want it to happen quickly so I can get off dialysis and FEEL like a normal person for the first time in my life (seriously, I didn’t know how bad I’d felt for so long because it was normal to me and they tell me if I feel better on dialysis a transplant will change my life) I know it’ll happen when the time is right and I have to trust the process. That doesn’t mean it’s easy, or even that I have to like it at times. But I know one day, I’ll look back and this will be just a blip of time.
If anyone out there is going through this and would like to speak to me you can email me at [email protected] or message me on any of my social media.
Unlike Willa, from the beginning I’ve wanted to be an advocate for education people on kidney disease, dialysis, organ donation, and transplant. A lot of patients are like Willa though and would prefer to pretend it never happened. And everyone’s entitled to how they feel.
But for me, I can’t get a transplant in the future and act like this never happened to me, because it DID. And I’m not ashamed of it. This has changed me, but for the better, and yes in an ideal world this never would’ve happened to me or anybody but it did and therefore I want to do what I can to raise awareness. If you’re someone reading this that has it in your heart to be a living donor reach out to a transplant hospital near you and speak with them and see if you could be a donor. You’d literally be saving someone’s life. There are thousands of people waiting for a kidney, and some will die before they get one. If you don’t want to be a living donor, consider being a donor when you die. You can save around EIGHT lives by donating your organs when you die. That’s eight people who get a second chance at life. By donating organs and tissue over a hundred people can benefit from it. Organ donation is a beautiful thing. And I’ll be honest, I wasn’t a donor before this happened to me, but after learning about it I made sure to change that. No one wants my kidneys but everything else seems to be in good working order so they can have that.
I also want to add that when someone in your life has something bad happen to them, be it kidney failure, or cancer, or a death, anything that’s life changing try to be there for them. I think we all have the tendency to try to give people space, but by not acknowledging that something has happened you’re doing more harm than good. When this happened to me I was amazed by the people who I considered friends who never said one word to me about this, and to this day haven’t, while people I haven’t spoken to in years were the first to reach out. Just a simple, “I’m thinking of you,” let’s someone know you care.
But for all the people who have been by my side through this I’ll always be so grateful for your love and friendship. It’s meant the world to me and without your support this would’ve been so much harder.
—XOXO Micalea
