Post Kidney Transplant Life

I haven’t spoken a whole lot since transplant on the topic. I’ve been focused on trying to get my life back on track and regain control when it felt like I had lost it all.

This post is going to deal with mostly the emotional aspect I was not expecting after transplant, but I’ll also speak about other things for anyone getting a transplant or going through the process.

Initially after transplant I was at the hospital every week for checks. It didn’t bother me, because I had a kidney and that was the most exciting thing ever and having to drive two hours each way felt like nothing in comparison to my health. But it DOES take a toll. After a major surgery like that you’re tired, you’re sore, you’re healing. Honestly, I didn’t experience too much pain. (My surgery was on a Saturday and I literally went home Monday)

Shortly after surgery (only a few weeks) things started looking funny in my blood work and my doctors started speaking about possible rejection. (I had a living donor, perfect match, so these weren’t words I was expecting to hear at all) They assured me they didn’t believe it was rejection, but something to do with my medicine, but being told something like that is upsetting. I’ll probably make a more detailed post on this later on, but long story short, I was admitted, had a biopsy, got pumped full of steroids, and then got the all clear that the kidney was fine and my body was sensitive to one of the immune suppressants and I needed a lower dose.

In this time (transplant was August 2018, so less than a year ago as of me writing this) I’ve done blood work every week, and now every other week.

My energy levels post transplant are nothing like I’ve ever had before. I understand now how my lethargy I had for years and years was cause by my (unknown) kidney failure. I remember being so hard on myself, thinking I was lazy, or it was just because I was overweight. Little did I know both were caused by what was happening inside my body.

Now, I want to focus on what this post was originally about. The emotional impact of transplant I wasn’t prepared for. Through my diagnosis and dialysis I stayed very strong, maybe too strong, and was determined to get to the point of transplant. When I got down I pushed those thoughts and feelings away. My mantra to myself became, “I can’t let it beat me.” Those words entered my head all day every day. Dialysis was exhausting. My body hurt. My bones hurt. I was weak. Tired. But I kept pushing through. “Get to the other side. The other side will be better,” I told myself repeatedly. And God, is it. Nothing compares to having this kidney. I’ve NEVER been this healthy in my entire life. My aunt saved my life with her selfless decision to be my donor. I can’t stress enough how thankful I am every day to have this kidney. To breathe without feeling like my body weighs 500 pounds. To go up and down the stairs without getting winded. To be able to think clearly again. (Good riddance brain fog. Fuck you.)

For the first 5-6 months post transplant I was happy, on cloud 9, and felt like I could conquer the world.

What I didn’t expect was the … I’m going to label it depression, but I don’t feel like it was quite to that point. But I became sad, angry, resentful. My body failed me. If it had just worked I wouldn’t have needed this transplant. My aunt wouldn’t have had to do this for me.

The trauma of everything I’d endured came crashing down on me as I finally began to cope with all that had happened since my diagnosis. Procedure after procedure. Infection. Allergic reactions. (I fucking hate tape now and don’t come near me with it, haha) Thing after thing I had brushed aside at the time, only focused on transplant, suddenly came crashing down on me. Holy hell, it’s been a lot to process. Things I suppressed in my memory was suddenly at the forefront of my mind. I began crying. A lot. And anyone who knows me knows I’m not a big crier. (Unless an animal dies in a book or movie. Then pass the tissues, m’kay.) And when I say cry, I don’t mean I teared up. No, I’m talking like sobbing, can’t breathe, face drenched in tears. It was ugly, lol. Like total Kim K ugly cry face. I felt like I was losing my mind.

Now, before you all jump in my comments or DM’s telling me I need to talk to someone, I AM considering seeing a therapist, but I also brought this up to my doctor. It’s not something I’ve kept to myself. I was told this was perfectly normal, especially at the time it hit me because 6 months post is when you hit your peak of health post transplant, and your hormones are coming back because they’ve been knocked out by the disease and dialysis. I also want to add here, I’m doing much better now. I still have my moments, but I’m not crying all the time, or constantly feeling like I NEED to cry. So, progress.

But this was something I was completely unprepared for. I thought, “Oh, I have a kidney now, life is going to be great.” But I think we always seem to underestimate trauma. At least I do. I was scared to say anything at first about my thoughts, because I didn’t want to seem ungrateful, or speak about my fears.

One of the things I’ve struggled with fear-wise is complete and utter panic about the future. It’s drilled into your head that a transplant is not a cure, just another treatment. On dialysis, getting to the other side meant transplant? The other side of this looks like hell. Thank God, I’ve been having less of those thoughts lately. But I think that was aggravated at the time with so many people being like, “Oh you have a transplant now, you’re good for life.” And then having to be like, “No, Karen, that’s not how this works. That’s not how any of this works.” Explaining it to people, and watching their faces pale and turn from delight to pity, sucks. But I’m not going to be like, “Oh yeah, I’m set for life.” That’s not the reality, and the general population is clueless when it comes to transplant. (Side eyes Hollywood with their idealistic portrayals)

The other fear has been, “Who’s going to want me? I’m damaged goods.” I’m single and I feel like no guy out there is going to want to sign up for something like this. My life will never be normal. I’m always going to have to have check ups. Blood work. And one day, most likely, I’m going to need another transplant. I am doing everything in my power to prolong the life of this kidney. I take my medicine religiously (I’m psychotic about it, to be honest), I’ve been exercising, and eating healthy. But even with all of that, I can’t control my future. Realistically, I know somewhere out there, is a man who will love me for me, scars and all, disease and all, unknown future and all, but sometimes it’s hard to quiet fear. That being said, I’m glad I wasn’t in a relationship going through this. While I had a great support system in family and friends, I had to rely on ME the most. It helped me grow as a person, become more confident, and see things in a new light. I’m not sure that would’ve happened otherwise. I had to be my rock, my pillar, my strength, not someone else.

If anyone out there is going through these same thoughts and feelings after transplant, please know you’re not alone, and it’s normal. It doesn’t matter what kind of transplant it is, it’s an extremely emotional and traumatic thing. It’s not something most people experience or even have any knowledge of. It’s okay to be sad about it. To get angry. I’ve learned through this that as much as you might suppress those feelings, they demand to be felt and they WILL get their way. Ride the wave, don’t let it crush you.

I’m definitely doing SO much better now than I was a few months ago. I’m feeling pretty happy again, I’m excited about life, about the future. I want to go on adventures and try new things. I want to cherish time with my family and friends. Life’s precious and too damn fragile. My eyes have been opened and I’m learning to appreciate every moment and be PRESENT. When I’m with my friends and family now I rarely look at my phone, where before I would be trying to stay ahead of work stuff, I’m more engaging and not hiding in shadows, I’m living.

I’m hoping to be able to do some fun, short, day trips this summer and get out there. Maybe my next update post will be talking about my adventures. 😉 If I put it out there, I have to hold myself accountable, right?

Also, I’m totally throwing a 1 Year Transplantaversary party. Shit’s going down. I’ll definitely make a post about that too.

Until the next time.

-M

P.S. If there are misspelled words don’t come for me. I’m not proofreading this. 😛

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