Ethan’s Journey

​I ran errands after work today. I did my grocery pick up at two different stores, a liquor store run as well as a stop into the $1.25 store. Not the dollar store anymore. Inflation! I picked up some dirt for over at Ethan’s house. I plan to spread it around in a little spot between the sidewalk and the house. I don’t like that that area is lower than the sidewalk. I can easily see water getting trapped there and just sitting. My chores for this weekend are piling up. Our house is so cluttered and unsettlingly chaotic. I have been trying to pick away at it but it is somehow now worse.  It will get there. We have a lot of things we are juggling.

​I hadn’t seen Avery in a while. I set up to get together today. I was so excited. We were supposed to go to the thrift store to find some “Thrift store formal” the theme of the Halloween party we are going to.  Avery came over and off we went. We had a good thoughtful chat in the car and Avery was voicing some frustrations.  We got to the thrift store and tried on some silly outfits but didn’t find what we were looking for. Boo! We made plans to meet up with my Mom and Gene to exchange some items to and from their storage unit. Avery had some homework to do but I suddenly became hungry and needed to stop at Margaritas. This was not in the plan at all. Avery said she had time to do so.  We participated in the buy one, get one margarita Tuesday special. The drinks were delicious. I am trying really hard to force Avery to LOVE tequila. We had such a good evening there. Someone had a birthday near us. We clapped and sang a long.  Avery said that her frustrations and lou...

​Ethan’s MMDX results came back. It also confirms negative for rejection. Ethan’s Prospera came back- the test that started all of this. It came back elevated at 0.34% which is now considered his new baseline. There is NO explanation as to why this suddenly changed from zero. Ethan’s medical behavior has stayed true. Keeping the team on their toes and me on the worry rollercoaster. I did more digging today for the cutoff level for the kidney (since Ethan’s doctor didn’t provide it to me). Luckily their threshold is 1.0%. Phew!  He is far below that. I did some more laundry. I am airing out my couch pillows so I can apply my seasonal pillow covers. Fall….here I come. Moe got his bath today and no longer stinks like dog. One day in a row! I called Avery to see how things were going. We made plans tomorrow to look for some “thrift store formal” outfits for our Halloween Costume party in a few weeks.  What a fun theme. Apparently Kendall has an outfit. I am hoping to find Paul som...

​I woke up this morning and had my coffee with my Aunt and Uncle. It is our routine when camping. I then packed up the dogs, Paul prepared the jetski’s and I trailered them home. I always get tripped up when towing them because I don’t do it that often. I am not sure how many times the jetski’s caught my eye in my rear view mirror. I thought it was someone following too closely each time. “What the…” I would say out loud….then “oh” after I realized they were attached to my vehicle. I also was not thrilled about the big FAT spider 🕷️ crawling around on the inside of my car on the windshield.  I told that spider he needed to mind his own business and he could live another day. I sort of want a charlotte’s web situation to happen in my van the next time I walk out to it. I want a message in its web tomorrow! I got home and bathed 3 out of the 4 dogs. Moe will be tomorrow….maybe. I cleaned out bedding and did the usual dog maintenance complete with ear cleanings today.  I did som...

​I am not someone who enjoys eating, or smelling things that live under the water being served as food. None of it….with the exception of fried clams. The caveat is that the fried….to clam…ratio has to be “just perfect”. More fried, less clam. The Shorline Lobster bake did not make me want to eat lobster. Watching people pull apart the lobster and avoid “the green stuff” that oozed all over the plate while using utensils I had never seen before (because I don’t like sea food).  They were getting “lobster juice” on their hands, clothes, anything that was around. It was neither graceful nor appetizing. Lobster water was leaking out of the lobster anytime a lobster was manipulated to try and crack it open. Shooting and dripping all over ALL surrounding areas.  I was trying to figure out what “the green stuff” was.  Is it poop? Liquified organs? Nope! I had to google it. It is called Tomalley. It acts as the lobster’s liver and pancreas. So it literally filters toxins all day...

​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...

​we slept in this morning. The camper was 57 degrees. Yikes. We were luckily draped in blankets and were toasty warm sleeping. It was overcast this morning but the day perked up as the time passed.  We decided it may be a little chilly taking out the jet ski’s so we road on the neighbor’s boat over to Walmart beach. The sun graced us with its presence on a pristine lake. The ride was a little chilly but I brought a blanket. We had a meeting of the shoreline, kinda like a last hoorah for the summer. Next weekend we are having a lobster bake shoreline party. Next weekend will be my last weekend up for 2026.  Why is summer so short? We spent a few hours at the beach. We had good chats with the neighbors and shared some laughs.  When we got back I took the dogs for a decent walk. I came across a monarch. We befriended each other. Such a gift for me as I always admire their beautiful colors and markings. I moved it to a tree so it could be safe as I continued my walk. We conti...

​Paul and I have mastered working from “home” at camp. He has the back area or “garage” of the camper and the rest is free for me. I was able to sit outside most of the day. Bliss! At one point all the dogs were out. 3 sun bathing and Jiminy trotting around doing dog things for an extended period of time. The sunshine was helpful.jiminy was helping me work but was promptly fired by sleeping on the job. We went out to dinner at one of the favorite local places and sat out on the deck to eat. The deck overlooks Chaumont Bay. One of the bright sides is that after labor day the traffic of vacationers subsides. There is no wait for tables and always yddeck seating available. When we got back from dinner, it was chilly. Paul and I built a fire and hoped to stay warm. The fire was very warm and I had a blanket. I rotated through all the dogs and gave them time to snuggle with Mom. Ferguson was by far the best snuggler tonight. He wasn’t fidgety like the others. He stayed out until we closed d...

​is anyone else FEELING the days getting shorter and how that changes your sleep requirements? Summer, my favorite season, has slipped through my fingers. BOO!!!!!! I didn’t set an alarm this morning because I didn’t need to. I slept in almost an hour and a half. My body must have needed it but the days getting shorter does not help. I am hardwired to be awake during light and sleeping during dark. I would fail in Alaska.  I was packing my car up for camp. Moe got very excited. However, I wasn’t ready to leave. When I called him to go into the house he was very disappointed in me. He peered at me from around the corner of the house with disgust! He begrudgingly came in the house and laid on his bed pouting! When it was time to go, he rode shotgun (his choice). He navigated me to the lake! Dogs are funny. We stopped for gas mid trip and saw an Amish horse and buggy. He was going nuts in the car watching the horse closely! We made it to camp. Time for sleep!

​I waited the full 48 hours for a MyChart response from the kidney team regarding a kidney biopsy. I then called and spoke with a nice lady who is going to elevate my question regarding rejection to the doctor. I am trying to give the benefit of the doubt as she was out of the office last week. We all know the punishment of being out of the office and coming back to a pile of work waiting for us. The doctor called fairly quickly. We made a plan for Ethan. He will get his heart biopsy. If the comes back as there is rejection, Ethan will be treated and we will not do the kidney biopsy. Even if the kidney is also in rejection the treatment for the heart will also treat the kidney. If the heart biopsy comes back negative we will move forward with the kidney biopsy. I am satisfied with this solution. I think it is the most non-invasive solution to support Ethan and his health. So now we wait until next week to see what the verdict is.  Ethan has noticed he is having episodes of feeling ...

 I had an interesting situation today. I spoke to a lady who had been terminated from her position of 8 years. She worked at a previous position for 7 years. Total of 15 years experience. She had been terminated the previous day. Her claim is that she voiced concern over patient care and was terminated. Regardless of the details (each one with their own version), she was devastated. She was petrified of what was to come for her. She was terrified no one would ever hire her again because of this one thing. She discounted her patient care, her skills and her personality to this one moment. All valid feelings and fears that I would have if it were me. I stopped the interview at one point to give a pep talk. I evaluated her resume in real time back to her. It was a good resume. She could hold a job for many years. That is one thing not a lot of people can do in veterinary medicine. This blip in the road didn’t define her. I used my most valuable advice I received from another human bei...

​I sent a note to Ethan’s kidney transplant team inquiring about a kidney biopsy. I never got a response back. I did submit it as a non-urgent medical question so technically they have 48 hours to respond. Maybe the doctor turned her attention towards “more important things”. I am still holding a grudge over that! It was nice out today and I had all the windows open!  I did LOTS of laundry and washed as much as I could wash.  It was a pretty quiet day. 

​we made it home today. The drive was very smooth. The dogs rode very well without a peep. There weren’t any dumb dumbs on the road. Well there was one. But for a 3+ hour drive, that isn’t bad. I chatted on the phone with my mom and listened to a pod cast to pass the time. Once home I unloaded my things while the dogs watered the grass.  Ethan was home and the dogs went crazy. All 4 of them were excited to see Ethan. Jiminy was the first! He been-lined right to Ethan and used his doggy stairs to get up on the couch. He began flicking Ethan as fast as he could. I send Ethan text updates about how Jiminy is doing….mostly because he is so easy to photograph looking cute. I unloaded the van and unpacked. I got a jump start on laundry with all the dog blankets and towels we have gone through. This evening, I chatted with my brother to catch up with him. It had been a while, so we shared a few stories of how things are going and what we have been up to. Tomorrow I have a busy work day. I...

​Today was a warm and beautiful day full of sunshine. It wasn’t too hot, wasn’t too cold.  Paul worked on waxing the camper in the morning. I worked on tiring out the dogs.  We did a few walks, a bike ride and Moe went to the spa. That means I trimmed his toenails and gave him a lake bath. He promptly dried off while sunbathing. Paul and I took out the jet ski’s and hung out with some boat friends on the less windy side of Fox Island. Getting there was quite wavy. I got soaked, I figured it was going to happen so at least I had on my long sleeved rash guard shirt. I wasn’t cold at all. The sun was helpful with that. The water is starting to become a little brisk when we get in. Damn it fall….I am not ready for you yet! We had a campfire fire until it started to sprinkle. We made plans to relocate Nextdoor and hang out at the neighbor’s cottage. It was myself and 4 men. The conversation was quite interesting and ranged in topics from lip injections, to music, to suppositories a...

It has been 25 years since the horrible tragedy that changed our word forever. 9/11 - travel has never been the same, people’s families have never been the same, the world by saying things like “that was pre-9/11. I was outside and closed my eyes. I took a deep breath in. I could feel the sun warming my face, I took a moment to think about how many people perished on that day. How many people helped and then got sick afterward. It’s like the bad regift that keeps on regifting. ​A little later, I went to log into my banking app. After three tries of facial ID, I saw my reflection in the phone. I had a heavy deep scowl. Very much a frownie face. Once I fixed it and relaxed my frown, it worked just fine. I think frowning is my default face. It kind of made me laugh.  My Aunt and Uncle arrived and we decided to go to dinner. We ate outside over looking the bay. I cleaned and organized areas of the camper removing things that I don’t need or use. It freed up a lot of space. Paul arrived...

​I reached out to Ethan’s Heart Transplant team today to find out how his prospera test went. This is the research study test that is supposed to help identify people that may have rejection through a blood test. The purpose of the test is to try and eliminate biopsies whenever possible.   Ethan’s last test was elevated. Normal is .18 or below. Ethan’s readings have been .42 and .34. His heart team has advised doing a biopsy to check for rejection. I asked if there was a chance that these elevated values do not mean rejection. Her answer was simple “it is rare for someone to have these kind of numbers and is not having any issues, but I have seen it happen.” Biopsy is the best way to see rejection at a cellular level and with Ethan’s Kidney values low, I do feel he needs to have this done on his kidney as well. He does both of these tests without anesthesia. He is a bad ass! I reached out to the kidney team asking when our next appointment is (it hadn’t been scheduled) and if we sh...

​It was a bit drizzly today. A perfect day to work! I took the dogs out in between showers only to find the gift likely an osprey left me. Gross! I had to be creative to keep the dogs away so I could take care of this guaranteed stomachache. I am thankful it was a fresh-ish fish head. It didn’t smell yet. There was not a bug infestation. All good things. I worked into the evening. I had some things to catch up on.  The dogs did get some outside time prior to the arrival of the rain. The rain was mostly steady. The dogs really had to run in between the raindrops to go to the bathroom today. I was saying “hustle, hustle, hustle!” They mostly did a lot of sleeping in shameless positions. Paul got stung by a bee last week. It was a bumble bee, the big fuzzy ones. They don’t have barbs on their stinger, so they don’t die. Well, he has been struggling with swelling, not feeling great and swollen lymph nodes. It is changing the way things taste.  He got his haircut cut today and real...

​I got to work very bright and early this morning. I did my calls from outside mostly.  I did have a helper. He sat it his little chihuahua camping chair and napped in the sun. After work, I hung out with my cousin and shoreline neighbors until they decided they were going to go out to dinner. I was invited but politely declined. I had dinner already planned.  My cousin and I had a fire and had some good laughs. These two joined us at the fire and snuggled. The doors went up in Ethan’s barn. Yay! Progress!

​another great day! Around noon, Diane and I rode one of the jet ski’s over to the island. It is our sunning spot to get out of the wind. Paul brought Diane’s double tube so that we could float. We floated and chatted for a few hours before coming back. Diane had to leave around 2:30 ish. The wind picked up, almost to send Diane home. We rode back to shore safely, weather the waves that had gotten slightly better. This evening, we went down the shore line to visit with some friends. We met a new friend. We were instantly friends when I heard him say “I want to find a dead body.” “ME TOO!” I said.  We watched the sun set as we chatted away. It was another beautiful sunset this evening. Paul’s wound from 3 weeks ago is healing well. It is almost resolved. Paul was worried there will be a scar.  I have several scars that I wear proudly. Each scar has a story. It is part of our memory trail. Scars are conversation starters.  I wish I had a scare from when I was bit by a camel...

​it was great sleeping weather. Nice and cool with lots of white noise. I slept great. Paul complained that I was twitching in my sleep and kept him awake. I thought of Ethan when I stumbled across a praying mantis. I really like them. This was a male mantis. He was smaller and would soon be losing his head after a rendezvous with a cute lady friend. This afternoon we went over to a local beach. Paul rode the jet ski. Diane and I drove. Paul went down and stole a neighbor’s starfish floaty. We knew he was out of town. He used it for the afternoon. We sent him the following message: He will never suspect it is Paul in the picture because I blurred out his face.  Diane and I floated on the double tube for the afternoon. Paul floated on the starfish. The wind died down and it was down right hot in the sun. We had the tunes cranked and there were not a whole lot of people there. That was wonderful. It was a bit too chilly for the dogs to get a lake bath today.  Maybe tomorrow? We ...