* This post was previously written in 2022 but not published (hackers took over my site and I quit posting all together). Now that it’s fixed, I’m catching up. Thankfully it wasn’t cancer, stay tuned for the reason why in my next post. *
I am fast approaching the 4-year mark in my transplant journey. Other than an early set-back of a herniated small bowel, everything has gone swimmingly well. Over time, my labs have become more stable, and I even reached a point in 2020 where my bilirubin was a normal value (1.0 for those who wonder). My transplant team have helped me through every stage and have had nothing but good reports and encouragement. They are pleased with how well I’ve done.
Over the past six months, I have felt exceptionally well and had so much energy. I felt as if I had reached a state of complete wellness. It was a strange and curious state of being that I realized I had never felt before. It’s hard to put into words how hard organ failure is on the body. It takes a toll on both the body and mind. So, you can imagine my concern when I had routine labs pulled in October 2021 and the majority of the values on my CBC were off – including my hematocrit and hemoglobin. I asked my transplant nurse about this, and she said it was “normal.” She added that unless I was bleeding profusely, there was no need to worry. She obviously doesn’t know me (or how to read an abnormal lab value on a report).
Then November came. Our daughter, her family and my sister stayed with us for the wedding of our son (another amazing milestone I experienced thanks to my donor). Our two youngest grandchildren were with us for a week, and both were very sick. The entire house came down with whatever they had – including the bride. My husband, who is never sick, missed two days of work and was sick for 3 weeks. I was actively sick for 45 days, but it seems to have moved on.
In January 2022, I had my labs pulled and the CBC looked worse than it did in October. Nearly all values were off, with my hematocrit and hemoglobin continuing to fall. But that’s not the worst part: one of my liver enzymes was too high (alkaline phosphatase). This is the first time my liver enzymes have been elevated since the transplant. Add to this, I’ve lost weight without dieting, have night sweats and gut pain. To say I’m scared and upset is an understatement. My biggest fear is that my initial disease has returned or worse yet, the big “C”.
My transplant hepatologist thinks this is gut related versus my actual liver and I’m hoping he’s right. Either way, it’s a scary development and one I’m not wanting to face. While it did energize me to fight the PSC battle and get through the transplant process, it’s not something I think I could do again. It was a hard, painful process – plus it’s scary and depressing. Not to mention, I don’t want to be the sick person battling a huge, genetic assassin AGAIN. I’d like to continue being well, enjoying my life and experiencing new things.
I have an appointment with my regular GI doctor at the end of this month and I’m going to ask for imaging tests. It’s a humbling reminder of the zero control we have over our lifespans. I was able to artificially extend my life with the incredible gift of a donated liver, but it is certain I will not live forever. Dear God, please give me the strength to face whatever is coming and fight it with all that I have.
As always, thanks for walking this journey with me.
All Hail the Queen –