August 18, 2020

2 Year Transplantaversary

Wow. 2 years. 2 whole years. I’ve had a kidney now for longer than I was on dialysis which I know isn’t true for a lot of people and I’m lucky I waited so little time, but man, in the moment it felt like forever.

I have a lot to say, so I decided a post on here would be easier than anywhere else.

I’ve been very open my entire kidney failure journey, but the past year I’ve stayed relatively silent besides saying, “Yeah, I’m good, kidney’s great” when anyone’s asked. And yes, while the kidney has been doing excellent I … I haven’t been and I hid that a lot.

If you’re new to me and my journey, um hi. *waves awkwardly* I’m Micalea. (Ma-Call-E-Uh) I’ll give a quick recap for anyone new reading this before I dive into the last year.

In May 2017 I walked into the emergency room. I’d been feeling rough for months. My feet were in constant pain (felt like I was walking on needles) I was having trouble getting enough air, my body HURT, I was sleeping all the time, and I was constantly throwing up. I couldn’t keep hardly any food down and I was getting weaker and weaker. I should add, that I’d been to Urgent Care NUMEROUS times before this and finally they were like, “If you still feel and think you’re sick go to the ER. We can’t help you.” (Cue my now horrified expression knowing what comes next)

Instead of getting a basic, easy to fix diagnosis in the ER, I was told my kidneys had failed.

I didn’t even know what that meant then. I was 23 and naive and scared and frankly too sick to even comprehend but I remember distinctly thinking, “OH MY GOD does this mean I have to have a bag collect my pee?! I can’t do this!”

Yeah, honestly that would’ve probably been a piece of cake compared to dialysis, lol.

Over the next year and three months I had to have numerous surgeries and procedures (more than the normal person would have to have with dialysis because my body likes to be a pain in my ass, haha) I started in-center hemodialysis, then moved to training for home hemodialysis, decided that wasn’t for me, then back to in-center I went, before in March 2018 deciding I had to do something different and went with my only other option of home peritoneal dialysis which is a tube in your stomach and you hook up to a machine at night.

But let’s be clear, no form of dialysis is a great substitute for a real working kidney. On hemodialysis I was tired all the time, sluggish, and miserable. On peritoneal dialysis I had a little more energy and I loved having the control of doing my dialysis myself while I slept, but the fluid that was left in my perineum lining (the lining that holds your organs in like your stomach, etc) made me look pregnant and it was just so heavy to carry around all that fluid weight. I was puffier than ever in my face from the dialysis and still wasn’t happy.

The last pic of my “fluid baby” as I called it. I seriously looked like I had a baby bump.

If anyone reading this has been on dialysis for years, I commend you. God, big hug for you. I did a year and three months and wanted to throw in the towel. If I hadn’t gotten a kidney when I did I feel it’s safe to say I would’ve refused dialysis soon and been gone 4-6 weeks after stopping. Dialysis is HARD and anyone who thinks it’s not is stupid. Your body isn’t designed for dialysis, it’s designed for working organs. I knew nothing about dialysis/transplant before this and it’s so enlightening. The media (news, television, movies) likes to portray it like it’s so easy. They make you think you need an organ and get one a day later. Oh, boy it’s not like that at all.

Anyway, my aunt, my lovely beautiful selfless aunt, gave me her kidney.

Fuck, I’m going to cry just writing this, haha.

She gave me so much more than her kidney though. She gave me a second chance at life, a life I was questioning if I even wanted to live if all it was going to be was machines and doctor appts.

I can’t believe I’m sharing this picture because I look like absolute trash haha. This was the day my aunt (beside me) and I were released from the hospital. 2 days after surgery. I was supposed to stay longer but was doing so well that I jokingly asked if I could go home and they said yes to my surprise. So yeah, in this pic I’m pumped full of steroids and fluids. I think I gained something like 20 pounds over these two days and freaked out but it’s normal with all the meds and I lost that weight over the next month as my body acclimated.
I said if I had to go through surgery for a transplant I better get a kidney pillow (some hospitals give organ pillows for transplants) I actually have two–one has the signatures and messages from the nurses and my doctors and I honestly treasure it so much. I also have two pictures of my aunt’s actual kidney inside of me because I asked my surgeon if he’d do that for me. He thought I was joking at first but I was serious and explained that I wanted to see what was saving my life.

The first year after transplant was filled with lots more doctor appointments (lol), but you have to make sure that kidney is working like it’s supposed to, so things really didn’t settle down until after I passed the first year.

And for me, that’s when the depression hit and it hit HARD. No one warned me that it was normal and expected, though maybe I should’ve been smart enough to anticipate it.

About a month after celebrating the one year mark I spiraled into a really bad depression I’ve never spoken publicly about. I’m a pretty private person, but I was always vocal about what I was going through with my kidney failure/dialysis/transplant because a lot of patients refuse to speak about it and if I could educate people in any way on what it’s really like, I wanted to do that, but when it came to my depression I stayed silent because I was ashamed. I felt like people would judge me because after everything, I finally had a kidney and was healthy so shouldn’t everything be rainbows and sunshine? Why was I sad? Why was I angry?

I want to make it clear I was never not grateful to have a kidney and to be healthy. But I won’t lie and say that there weren’t moments where I questioned whether I was supposed to be living. I don’t want to say I was suicidal, because I didn’t necessarily think about killing myself, but I wasn’t sure I wanted to live either. I felt very lost, very sad, angry, and so confused.

I wish I could say falling to the floor sobbing about how much I hated my body because it gave up on me was my breaking point to try to get better, but it wasn’t.

I felt broken and worthless because my body wasn’t whole. I have a kidney now, and I’m healthy, but this never stops. I have to take pills morning and evening to ensure my body doesn’t reject the organ but getting a transplant isn’t a cure. When you need an organ you have it drilled into your head that transplant is another treatment, not a cure, and you will need another one some day. (But I’ll be damned if I don’t try my absolute hardest to make sure this one lasts forever)

Because of my depression I was incredibly anxious and not myself at all.

I think anyone who knows me personally knows that I’m naturally a go with the flow person. I can be shy but if you know me well I’m a goofball. I’m even tempered. I’ve learned to let things roll off my shoulders. But during those months I was none of that and things kept piling up, the anxiousness, panic, and depression growing worse.

Goofball exhibit A.
Aka when you were supposed to go to a 5 Seconds of Summer concert for your transplantaversary and then the whole world got canceled so you improvise and throw your own. Because this is what it means to be an adult. 😛

I was eating horribly and not like I should at all. I stopped working out. I was putting on weight quickly. I was acting like I didn’t care, but I did care, a lot, but I didn’t know how to pull myself out of it.

I was even questioning if I wanted to keep writing which looking back is INSANE because writing is my passion. My heart and soul. I’m not me without being writer. But in that bad spot I was constantly questioning if I had any talent, if this was right for me, and dealing with thoughts of you suck, no one likes your books, just quit already.

I felt very out of sorts and I was spiraling with no idea what to do or how to get better.

Back in January I had a normal check up with my doctor and as soon as he walked in the room he took one look at me and immediately blurted, “What’s wrong?”

Right away he could tell I was a shell of who I am. I was sitting there, closed off, and panic-stricken when normally I would’ve greeted him immediately with probably a stupid joke or something and a big smile. But I didn’t have it in me and he saw that immediately. As soon as he uttered those words I burst into tears, unable to keep it together a second longer.

I explained to him how stressed and worried I’d been. How it was consuming me worrying about the kidney, whether it was working like it’s supposed to and freaking out over every twinge in my body. I have never ever been a hypochondriac ever and suddenly worrying over everything I felt was driving me insane. I mean, I’m the person who literally walked in the ER and was told I was in in full blown kidney failure and based on my numbers I only had hours left to live. HOURS. So again, I’m not normally one to freak out over things.

I told him how I’d stopped working out and I knew that was playing into my depression and I also spoke to him of some personal things that I knew had sent me spiraling like my grandpa having to start dialysis and how that dredged up a lot of bad memories. (I feel I should add here that I won the lottery in reverse with my kidney disease–no one in my family has it, it’s not genetic. I do not have diabetes or any other contributing factors such as high blood pressure. My grandpa has diabetes because of his diet and that’s why his kidneys failed)

My lovely, sweet, kind, best doctor ever sat and talked to me about things and how that because everything happened to me so fast (didn’t know I had kidney disease, suddenly on dialysis, surgeries, a million doctors appointments, trying to get on the transplant list, actually having a transplant, dealing with a slight scare of possible recjection, etc) my brain didn’t have time to deal with the trauma in the moment because I was doing all I could just to keep going. He reminded me (like he’s said from the start) that it’s HIS job to worry about my kidney and MY job to LIVE.

I definitely forgot that there for a while, because I was not living and was instead drowning in my feelings.

We talked about potentially going on anti-depressants and seeing a counselor that deals with trauma.

I personally didn’t want to go on anti-depressants. I know they’re great for some people, and that’s amazing, but if I could dig myself out of this hole on my own I wanted to try before resorting to them. Especially considering how many meds I take as it is.

I was open to a counselor, but ended up not going that route.

A few weeks after my appointment with my doctor it was like something switched in my brain and I knew I had to STOP doing what I had been and make a change. I started working out again and for the first time in my life it was with a different mindset. It’s been about my health, not about a number on the scale. I’ve grown stronger in the past seven months. Both mentally and physically.

At this point, I’m accepting that what I went through WAS traumatic, because for so long I wanted to act like it wasn’t a big deal when it was life-changing. There’s a definitive line in my life, a scar so to speak, of before and after. As soon as I was told I had kidney disease that changed everything and it was scary. It’s still scary. No one can know the future, all you can do is live it and see what happens.

For so long I felt like I had to hide my emotions in order to be “strong” and overcome it, but honestly I think it’s been allowing myself to feel them, to cry, to talk about it, that’s made me stronger rather than staying silent. Feelings are meant to be felt–hence the name feelings.

Literally could not take myself seriously and kept laughing my ass off while saying, “What have I done?” But I mean, honestly these will be great to laugh out down the line.

As stupid as it may sound, one thing I got really upset over this past year was feeling like I was broken. That I’m not whole. That no guy could possibly ever love me because I’m “damaged” goods. My body has scars I never had before. My mind does too. Chances are I’ll need another kidney one day (but like I said, I’m counting on making this one last me a very long time) and I felt like all of this made me not good enough.

You know what, fuck that mindset.

If anything it makes me better.

And any guy who couldn’t see that clearly wouldn’t be the one for me.

Had to let Calum borrow my bucket hat.
Also featuring the Wish versions of Michael, Ashton, and Luke.
Calum is my favorite so I got the biggest size for him. *shrug* Come on, I think if you’ve ever liked a band then you have a fave. Haha.

I’m a hell of a stronger person now. Crazily enough, I’m more confident too. Everything I’ve been through has taught me so many valuable lessons, and at a young age too. None of this has been easy, but honestly if someone said I could erase it all and make it so it never happened and I had two perfect working kidneys but I had to go back to who I was before … I’d turn them down. I truly believe in the saying everything happens for a reason. I might not ever know why this happened to me and that’s okay, but I know I’ve grown from it and that’s enough. But because of what happened I’ve grown immeasurably and met and befriended some of the greatest people ever that I would’ve never connected with if it weren’t for this.

I turn 27 on September 7th. At 23, newly diagnosed, I wasn’t sure I’d make it to 24, let alone 27, but here I am. I did it.

I’m alive and I’m living again.

Sure, Covid threw a wrench in things but shit happens.

I didn’t intend for this post to be “sad” or anything, but I feel like my honesty is necessary, especially for anyone out there going through something similar to what I did so you know you’re not alone.

I want my transplantaversary to be something I celebrate every year and this year is no different.

Originally, I was supposed to be going to a 5 Seconds of Summer concert with my friend Kellen (shoutout to Kellen for taking the pics!) but ya know Covid was like no bish. (And I’m not complaining it’s canceled because if it wasn’t I wouldn’t be able to go that’s for sure but I am allowed to be bummed okay) Funnily, enough Kellen and I saw them last October with The Chainsmokers (back when I was in deep depression hole haha) since I was supposed to see The Chainsmokers a few weeks before I was diagnosed with kidney failure and was too sick to go. Missed out on meet and greet tickets and everything. 🙁 So in October I didn’t know 5SOS’s music that well. (throw stone at me why don’t ya? I deserve it.) But when their new album Calm came out we both fell in love with every single song and I asked her if she’d want to go and it’d be my transplantaversary gift to myself. (If you haven’t listened to this album yet go do it, every song is just *chef’s kiss*) But since the concert didn’t happen I decided to bring 5SOS to me, and that’s where these pictures come from. So yeah, enjoy me goofing off and being my usual creative weirdo self.

I am putting the 5 in 5 Seconds of Summer (seriously, why isn’t it 4 seconds? What am I missing? Someone explain.)
No joke right here I said, “Calum, I’m so sorry I’ve done this to you.”
In the unlikely chance Calum ever sees this. I’m so sorry.
(Okay not really because I can’t stop laughing at these)
Could. Not. Stop. Laughing.
Oh God I’m laughing so hard just finding this one. None of them would stay standing so I had to hold him the whole time and he almost fell over here.
Me: Jamming to Wildflower
Kellen: *being a saint behind the camera and used to my shenanigans at this point*
Me: Let me try to make the same face as him.
Kellen: *probably* Whatever you say psycho.
Also lent Calum my bucket hat so he’d feel more comfortable. 😛
Still losing it and probably asking, “What have I done?”
Cardboard Calum was a real good sport through all this.
Except for the million and one times he fell over.
I … I … I don’t even know.
“You okay, bruh?”
Such a good sport.
“Are you seriously going to fall again?”
Yes, yes he was going to fall again.
More awkward dancing and singing.
What icons.
Big shout out to Cardboard Calum and the Wish stand-ins of Luke, Michael, and Ashton.
The cardboard concert was untouchable. Never to be topped. 10/10.

Hopefully the concert doesn’t get canceled again next year (if you’re reading this and happen to also have tickets for the DC concert next year and spot me don’t be afraid to say hi!) and maybe, just maybe, if it doesn’t I’ll finally get one or two of those tattoos I’ve been talking about getting for years while I’m there. 😛

His wittle tongue. I caaaaaaaan’t.

I also have to add in a little something about my soul-dog here. Ollie came into my life a little over a year before I was diagnosed. This dog has been with me every step of the way. He’s seen me at my lowest. He’s worried over me. He’s snuggled me at night when I’d finally let myself break down and cry. He’s my everything. Every single person along my journey has helped me in some way, but this little soul-dog right here … I truly can’t express what he’s done for me and the saddest part of all is I’ll never ever be able to repay him for what he’s done, but hopefully my love is enough. (And I call him my soul-dog because truly, this dog is my soulmate in dog form. Anyone who’s around us for even a few minutes always makes a comment on our bond)

I call this game Spot My Stalker. #itsthedog

I want to end this with my hopes for future Micalea who may or may not be reading this.

I hope you continue to realize that’s it’s just as okay to cry when you’re sad as it is to laugh when you’re happy. Crying is NOT a sign of weakness so stop acting like it is.

I hope you can finally buy or build your dream house you were supposed to start saving for but had to pay medical bills instead.

I hope you meet your human soulmate and if he truly is your soulmate I don’t even have to add anything about how he better treat you right. 😉

I hope you’re able to travel and see the world (ya know if the world ever opens back up) with your soulmate at your side or maybe on your own too. Remember, it’s okay to do things by yourself girl. Be brave.

I hope maybe you’re even reading this with your baby in your arms.

Most of all, I hope you’re happy, because at the end of the day that’s what matters most.

Life is short. Go live it.

I know the best years are just beginning.

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2 Comments:


  1. Angela said:

    Thank you for sharing. I also have a before & after point in life. My situation happened in 2005 and I still have trouble handling the emotions that are raw. I wish I had your honesty and bravery. You have a beautiful soul!

    Reply

    1. micaleasmeltzer Post author said:

      It’s such an emotionally gut-wrenching journey that I’m not sure you can ever really get over it. You have to cope as best you can and embrace the moments when it overwhelms you instead of dismissing it.

      Reply

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Welcome!

Micalea SmeltzerHi. I’m Micalea. Ma-call-e-uh. Weird name, I know. My mom must’ve known I was going to be odd even in the womb. I’ve written a lot of books. Like a lot. Don’t ask me how many, I don’t remember at this point.

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