That emotion was in there, but I hadn’t let it out. It needed to be felt. I needed to acknowledge it and find my way through that emotion.
As I sat there, getting better and better, I had questions, so many questions! And doctors weren’t there when my brain was brimming with thoughts so I started to write down my questions on those same menus. When one of these menus was accidentally discarded, I improved my method: I started texting myself the questions and lab updates. My family started noticing and helping. When I’d say, “Oh, that’s a good question for the doctor,” they’d say, “Well, text yourself!” And when the doctor came, we’d have a real two-way conversation. Having my questions answered, and not just answering his, made me feel like a member of the team. They weren’t always super receptive, but with a little smile and a lot of appreciation from me, the doctors and nurses started to understand my ways.
I soon decided I wanted to document my hospital days in more detail, so I started a diary. My boyfriend and I were already making progress videos for family but I wanted something for me. Just for me. At first my journals were about concrete things like doctor updates and milestones reached. Slowly, I started adding in my feelings. I started describing how these updates or complications made me feel. This was, and still is, hard for me. I am a doer, not a feeler. I thought that was good but I realize now that it was a wall to hide my feelings behind. If I don’t feel, I won’t feel The fear. The sad. The worry.
One of the first feelings that surfaced in my writings was a deep fear that I wasn’t worthy of this kidney. Someone passed and I received this kidney. What if I don’t live up to her potential? What if I disappoint her? What if I can’t honor her memory? That emotion was in there, but I hadn’t let it out. It needed to be felt. I needed to acknowledge it and find my way through that emotion. My journals made that possible. They keep me true to myself; that’s their most important benefit. A great secondary benefit is that they make me a very good patient.
I was home in 6 days. I started a small medical pad and kept it close. I wrote down any struggles or questions I had and brought that with me to the doctor’s appointment. I found it was a great way to keep track of the constant medicine changes. Then I upped the ante. I added a food tracker app to my life. My journals kept me accountable to my emotions and to the doctor’s orders. Now, I wanted to make sure I knew how I was going to nourish my healing body. In the past, I may or may not have eaten breakfast. I may or may not have had dessert for dinner. Knowing I had a caloric goal, and certain protein and calcium requirements to meet within that caloric goal, made me rethink some choices. Eating out restrictions helped too. And three months later, I am healthier than I’ve been in years. I have the energy, thanks to my new kidney and to my good choices, to take my beautiful dog on the long walks he so loves. I am lighter in my heart and in my mind, thanks to my journaling!
About the Author
Joanna Galeas has had kidney disease since 2009 and recently received a kidney transplant
after almost 6 years on the waitlist. She is a Board member of Renal Support Network and serves on the Network 18 Subject Matter Expert committee. She holds a degree in business.
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