My one-year kidney tx anniversary came and went with little fanfare. Two of my bestest buddies sent me messages, which brightened my day. ☀️ I called my brother, my wonderful, wonderful living donor. 💜 I might not be here today without him. It’s impossible to overstate how much gratitude I feel toward him.
In general, life has been difficult.
It started, in earnest, with contacting Covid over the July 4th holiday. While I escaped the most severe phase thanks to Paxlovid, I missed almost two weeks of work due to brain fog and inability to focus on anything except for episodes of The Mentalist. Thank DOG my lungs were spared.
By the time I followed up with my pulmonary team, it seemed very possible that my ongoing body fatigue/lightheadedness/shortness of breath upon exertion were being caused by another issue we’ve been closely tracking: falling hemoglobin. Falling hemoglobin is often associated with fatigue, but the other symptoms I’ve had can also happen. And who really knows when Covid fatigue “ended” and anemia fatigue “started.” It’s been dropping since spring, but by July it had dropped super low (7.5 for normal range of 12-16.) This is most likely caused by one of my 4 immune suppressant drugs. My kidney and lung docs talked and decided I should be referred to a Hematologist to help decode the mystery. That should happen in September. yay
Now for the (possibly) most problematic thing happening. Let me preface this by saying that this is incredibly difficult for me to talk about because, emotionally, it makes me feel guilt, shame, and an incredible amount of sadness. There is a problem going on with my new kidney. My creatinine (measures kidney health) has been steadily rising since May (bad). Ideally, creatinine is under 1.0. Here’s a visual:
- Dec 2022: 1.0
- Jan 2023: 1.2
- Feb 2023: 1.1
- Mar 2023: 1.2
- Apr 2023: 1.4
- May 2023: 1.5
- Jun 2023: 1.2
- Jul 2023: 1.5
- Aug 2023: 1.8 (most recent)
What. The. Hell. Is. Going. On!? I feel like I’m on the fast track back to kidney failure and it’s completely too soon and seems to be despite the good and healthy things I’ve been doing. For those who don’t know, my donor brother was not just a good match for me - he was a GREAT match. What happened to 10+ years with this kidney? What happened to “such a close match” that if it weren’t for my lungs, I might be weened off rejection meds altogether with this kidney? What happened to the prolific, all-star performance after surgery? 😔
While my brain knows this is not my fault, my heart cannot help but collapse.
The 1.8 creatinine lab this week was devastating. I had a melt down while telling my boyfriend - I haven’t had the heart to tell anyone else except a close friend who asked how my labs went. Fortunately, my wonderful and thoughtful kidney doc called me the next day to discuss the results. We are going to proceed with an ultrasound and biopsy for more information. The problem could be something physiological, which the ultrasound would show, or some kind of toxicity from one of my medicines, infection, rejection, which the biopsy would show. However, none of my other labs raise suspicion for the infection or rejection options. Ideally, we would discover something that would explain both the low hemoglobin and the rising creatinine. I would love to catch that break.
laura
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