Last week, I finally admitted what I knew had been going on for a couple of weeks, which was that my lungs were once again producing thick disgusting stuff every few days. I sometimes sit on information like this until I'm "sure" it's what I suspect it is - in other words, when I'm not able to deal with it yet. I made an appointment and was able to be seen in lung transplant clinic on Friday. Though my regular doctor was not available, I was thrilled to be able to see another who followed me part of this last hospitalization. Whereas often there are many floating pieces with my health that are ..read more

This entry is difficult to write, and it may be difficult for some of you to read. What I have been living with for many months now - mostly pertaining to health matters, but also filtering down to everything - has been so incredibly difficult as to be emotionally unbearable most days. There aren't enough superlatives, upper case letters or bold fonts to express the jeu ne sais quoi the place in which I find myself. I am anxious and depressed. I am tired in body, mind and soul. I am isolating myself from people because just making conversation takes too much effort to think about let alone to ..read more

  Two years ago today, I received an invaluable gift from my brother: he gave me one of his body's organs -- a kidney! What a loving, selfless, and brave thing for someone to do. This act of kindness has allowed me a longer and better quality of life than I was otherwise facing. And I'm forever grateful. Hospital/pneumonia update: Being home was extremely challenging for the first few weeks. Progress was slooooow and my overall health felt overwhelmingly horrible. Fortunately, little by little, I was able to do more, then do more without oxygen, and then finally do more without shortness ..read more

 I’ve managed to inch through recovery enough that the docs and I agreed to discharge me tomorrow. I feel confident I can manage most of my meds on my own at home, and I have a friend staying a day or so to help me with the house and everything else until my step mom can drive down from Cleveland to stay with me for a bit. I’m so incredibly glad she is able and willing to do this. Three cheers for Nurse Mary Ann!! (In addition to her caring nature and desire to help others, she’s a retired nurse   I’m still walking and talking with difficulty from lack of breath. I’m resting and eati ..read more

 Hello friends, You likely know what a fan I am of long-winded updates, but this will not be that. I'm writing this to start a central place to keep everyone informed with my situation, which has become quite serious very quickly. If you wish to follow, you may click the "follow" button all the way at the end of text on the right-hand side, and you will be automatically emailed new posts. Summary: In January, my lung function started to decline. By March, I was officially diagnosed with chronic rejection. This is a terminal condition: some people last years, some last weeks. Treatment opt ..read more

This post is about love. The love of yourself despite endless temptation otherwise. I've always struggled with self love in the sense of taking care of myself, with prioritizing my own needs and well-being. Being diagnosed with ADHD a couple of years ago shed a lot of light on this recurring, doomed-to-be-repeated theme in my life. It explained my tendency to spring into action to take care of the latest mini-crisis at the expense of myself whether with work, life, or family.                  "A recent study also found that the ADHD brai ..read more

Me and Serena, enjoying a *little* sun (with a lot of sunscreen) at Jordan Lake, Aug 2023. I'm waiting on results from the kidney biopsy I had a few days ago. I've been in a fairly relaxed state of suspended reality, living as fully as possible in the space before good or bad news, the space of denial and infinite possibilities. Dipping toes into the "what ifs." Taking pleasure in the fact that right now, I am ok. If this moment lasts forever, I will be okay forever.  ..read more

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 Menta ..read more

I've made some progress in my living donor search.  A couple of people that I know of have contacted Duke (for which I am eternally grateful!) but didn't make it past the initial screen (too old and predisposition to cancer). Another person did make it through the initial screening and is undergoing some further testing. But there are additional complications that would come with this particular person's donation that don't make it ideal.  A good friend of mine made me some business cards that I can give out to refer people to Duke's living donor referral survey and website with in ..read more

Hello, my friends! I took a few years off from blogging... At the 2018 Transplant Games of America, I had a revelation. I realized how far I had come since my surgery, and I tapped into a deep desire for change and growth. And, for the first time since my lung transplant in 2014, I felt healthy enough, and brave enough, to explore what exactly this meant. Unfortunately, it ended up being the beginning of the most emotionally difficult months of my life.  So, I did what many people would do: I found a really great therapist! My therapist helped me to slow down and really evaluate why these ..read more