Adjusting to Life After My Diagnosis

The entire time I was in the hospital, I felt pretty good. Once my blood pressure was under control, my headaches went away, and I felt like myself. Every time I spoke with a doctor, they asked me the same questions; “Is there blood in your urine?”, “You’re sure you haven’t noticed any leg swelling?”, “Do you have a metallic taste in your mouth?”, “Are you nauseous?”. All these symptoms I should have been having that I wasn’t having. Yet my kidney function labs kept coming back worse. I was convinced they were getting my blood mixed up with someone else, because there was no way I could look so bad on paper, but it does not correlate to my physical presentation.

When I finally left the hospital, I still felt like myself. I was given several recommendations and instructions to try to salvage what kidney function I had left. Take these medications, follow that diet, see this doctor, and make these changes. I’ll be honest, I blatantly ignored the low sodium diet recommendation. On the way home from the hospital, I went directly to Chick Fil A. The next day my legs were so swollen I couldn’t bend my knees. I haven’t been back to Chick Fil A since. And all of those symptoms I hadn’t had yet; here they came.

Since leaving the hospital, life has looked very different to say the least. It’s been almost completely unrecognizable. The symptoms started like clockwork. For starters, the amount of medication I left the hospital on was difficult to wrap my mind around. I went from taking a multivitamin every morning to taking a literal handful of prescribed medications. I even had to buy one of those daily pill dispensers to keep them all straight. Then there were the physical changes to my body. Some were from the side effects of the medications and others from the actual kidney disease itself. The fatigue, gosh the fatigue was impossible to keep at bay. At this time, I was still working deep nights, going into work at 6:30pm and getting off at 7am. As if night shift isn’t hard enough on your body, it becomes twice as difficult in organ failure. I’d come home in the morning and take 60mg of prednisone and then try to sleep. It felt like drinking several cups of coffee and being physically exhausted but mentally stimulated. In other words, I couldn’t sleep. I’d lay in bed, and stare at the ceiling. I’d toss and turn and if I was lucky, I’d sleep 3-4 hours a day and then get up and do it all over again.

For those of you who aren’t familiar with side effects of steroids, there are a lot.

Let me give you a brief rundown of the side effects of prednisone; side effects include but are not limited to: shakiness, muscle cramping, moon face (rounded face), weight gain, excessive hunger, blurry vision, insomnia and restlessness. I have suffered from every single one of these side effects. Muscle cramps that have put me in tears in the middle of the night, having to pull over while driving because my eyes are so blurry I can’t see the lines on the road. And these are just the side effects from the steroids, these don’t include the actual symptoms of the kidney disease itself. Which include but are not limited to, fatigue, anemia, mouth ulcers, edema, nausea, vomiting, inflamed and irritated skin, and a metallic taste in the mouth.

I wasn’t appropriately processing; I wasn’t coping. I was resisting. All these new medications; all these new symptoms. I felt ill. I looked tired. I couldn’t figure out how to adjust into this new lifestyle. A month prior I was snowboarding in California; now I’m barely functioning. A month prior I was planning thrill seeking vacations; now I have to sit down to brush my teeth because I get winded.

I don’t recognize myself; whose life am I living?

When I look in the mirror, it physically doesn’t look like me staring back at me. Whose rounded face is this? Whose puffy and glossy eyes are these? Whose bruised and irritated skin is this?

I’m sure you can imagine how overwhelming this all felt. My physical inadequacies quickly bled over into emotional and mental turmoil and the snowball gained traction.

I watched the people closest to me have tears in their eyes when they talked to me. They seemed so sad, and I felt so mad. Why could they cry but I couldn’t? Was it really that easy for them to accept this? I felt fragile when they looked at me, but I didn’t want to be seen as weak. Fragile has never been an adjective used to describe me. Was this really going to start now?

I struggled to come to terms with my diagnosis, so I did what any unstable, emotional, advantageous therapy goer does…I ignored everything my therapist taught me and I self-isolated. I’d say for a solid 2-3 weeks I felt very bad for myself. Every day was a little pity party, and I was the only person in attendance. People messaged me and called me and asked how they could help. They offered words of encouragement; they did everything right, but I didn’t want to hear what anyone had to say, because they didn’t understand. They couldn’t possibly know what it felt like to be in my shoes. I ignored the people who just wanted to support me.

But now, enough is enough. I’ve been through too much in my life to go out like this. My diagnosis can be deadly, but it’s not terminal. This is a difficult situation, and it clicked in my head that this was new for everyone. My loved ones had to process this information in their own way also. This wasn’t just about me.

The only way we were going to get through this was if I leaned on them and they leaned on me. I could self-isolate and feel sorry for myself but that wouldn’t change anything.

I’m still in organ failure, and I still need a kidney transplant to live.

I said it out loud for the first time. “I need a kidney transplant.” And then I said it again, and again as the tears rolled down my face.