Ethan’s Journey

​today was chilly in the morning. It didn’t stop me from sitting and chatting with our shoreline neighbors sipping coffee. We were having a nice chat and lost tract of time. I was a little late to sign into work. Woops! It was chilly in the camper. The heat was on. Jiminy needed his winter jacket on. I got the call from the heart team today. Ethan stayed true to his oddity and is not in rejection. Yay! Ethan’s heart team is on the ball. I get so much information from them. We are still waiting on the mmdx test and those will come next week. He also is getting another Prospera test done to see what the results are. That is the test that looks for donor DNA. That was the test with elevated levels that started all of this. I connected with the kidney team to set up a kidney biopsy. His doctor has done more research and decided that with the information they have, we do not need to move forward with a kidney biopsy.  While this is good news, I did feel cautious and asked for more clari...

 It was a calm day. Much better than yesterday. My work day was full of squashing fires and helping coworkers. I talked to a coworker that is fairly new and discovered that she wasn’t as prepared as she thought she was for a big meeting. She was able to reschedule until next week and we meet together tomorrow to plan. I want her comfortable and confident when she holds her first meeting. After work I drive up to camp. The leaves are changing. It is pretty to look at the leaves that are brilliant. They are in hospice when they are the most brilliant. As I drove the familiar roads to camp (a delightful drive traffic wise), the sun was starting to set. The colors blended and changed across the sky as the darkness arrived.  There was still artistic colors splashed across the sky when I pulled up. The air was still, the lake was still and the sound….just bugs singing away.  I put some things away and fed the dogs. About a half hour passed and it was dark. The temperature was s...

​I had a doctor’s appointment this morning, was able to make it home in time to pack Ethan up to get to the hospital by 12:30.  He had his biopsy today. We met with his NP before hand. She was excited to share that they want to put him in another research study that will help gather more information about his heart which can help him and others. The Transplant office just got approved as a testing facility on last Friday. He is the first patient they will submit. The test Molecular Microscope Diagnostic System. It uses genetics to create a “profile” within a database. They can use the profiles from other people around the world to compare his profile to. It is supposed to help with difficult cases and supplement the diagnostic precision. It helps pick up on potentially missed rejection cases. It sounded like a good tool to collect more information to learn from. Information is power. We laughed when she said they use it for “difficult cases”. Ethan was the first person they thought...

​ Today went by relatively quickly. I had my grocery pick ups to do, managed some of Ethan calls about his heart biopsy and took the dogs for a run around the field. I can feel the house getting chillier day by day. We still have open windows in the bedrooms round the clock, so that doesn’t help. We are dragging our feet to turn on the heat. (This could be a NY slogan as I know I am not the only one). I can feel myself getting lazier as the days get shorter. I have been trying to do some sort of physical activity daily. The struggle is real.

​I got the call confirming the appointment for Ethan’s heat biopsy on Wednesday. He does these without anesthesia which I feel he has the right to brag about. I had a difficult person I was working with today. You know that person that is just terrible at doing anything in a timely manner. She gave bare minimum answers, seemed dismissive even though she came to ME for help and didn’t answer my questions that were posed to help HER. I could tell she was a C-Section baby by the way she avoided labor! Luckily with extreme forward facing patience (not inner patience) we FINALLY began to work through it so I could help her. Ugh! Why do people make things so hard? Help me……help you! All of my patience had worn out by the time Paul got home. We were sitting on the couch when he asked me if we had a label maker. I wondered what project he needed the label maker for. “Do we have a label maker?” He asked “What for?” I asked “To make a label.” He said. My face……… I called him a bad name. Ahhhhh t...

​It is easier to leave camp on a dreary day. It was quite misty when we left. I got on the road early with Paul not too far behind. Ethan was in the garage when I got home puttering doing man stuff. Soon after, around 2:30, he was sitting on the couch with Jiminy and he fell asleep.  This is what kidney disease looks like behind the scenes. He often needs to nap on weekends to catch up with the week days he is working. In his wadded up blanket he was embracing was a little tiny pup sleeping happily with him. Jiminy sure does get so excited to see Ethan. Ethan selflessly tells me to bring Jiminy camping because he knows Jiminy will have fun with the other dogs. I send him pictures of what Jiminy is doing throughout his time away from Ethan. I did some much needed cleaning and laundry. Things just need to be wiped down and dusted. I even cleaned out the “fart fans” in both bathrooms. They get dusty and gross.  I went through two drawers and have some donations to drop off. Littl...