Ethan’s Journey

One year ago on this day, my beautiful kidney was nestled into it’s new home. It made itself comfortable there and is just being a little busy bee for Ethan.  My coworker and I had a great time getting to know one another, which isn’t really my cup of tea, but we really hit it off.  We drove an hour and 20 minutes to pick up lunch for the students and then another 20 minutes for the college. We drove around campus clumsily looking for the correct building. We saw this older guy that looked a bit sheriff-y. He gave us some pretty vague instructions to get to the desired building. I am pretty sure I became dumber after that conversation. My 6 month pregnant coworker waddled her cute, small pregnant body into a building to ask where to go. We finally found it and carried in all the lunch items we brought. The students grabbed their lunches and sat back to watch our “show”. My coworker introduced us and she was so nervous. She sounded great and did a good job. My turn. I started m...

  Today was a travel day. Ethan had to go to the lab this morning, so I went with him. We left at 7:45. I got all the way there and realized I had forgotten his lab orders. No problem, it’s only a 15 minute drive. Drive 15 minutes home, 15 minutes back and then check in.  I had to leave for the airport at 10:00. Well…we finished up at the lab and I dropped Ethan off and grabbed my bag. It was 10:15 when I left. Ugh! I made it on time though. Ethan had an 11:00 televisit with his nephrologist and said it went “good”. One word. It was the right word. I like being the last person on the plane anyway. I took my seat right in front of the mom with the two young kids. For the most part, the kids were screaming and crying for 75% of the trip. It came complete with seat kicking which was awesome, because my tingling leg loved it. The last 25 % was snoring from the one little girl. She was a beast. She sounded like an adult man snoring. I felt sorry for the mom though. I would have bee...

 Back to the grind. I am doing my first traveling gig tomorrow. I feel ready. I have a teeny tiny overnight bag packed and I am checked into my flight. It is going to be quite a whirl wind for Tuesday and Wednesday. I get to meet one of my co-workers in person. We have meetings together so I see her a lot but it will be nice to meet in person. Ethan worked today. Tomorrow will be busy for him. He is getting lab work done as well as meeting with the nephrologist via telemedicine. We will see how it goes. I am ending my day with a headache. One of those ones that squeezes your entire head. These are the moments I miss ibuprofen because Tylenol doesn’t do squat for me. Happy Birthday Mom! 🎂 

 I woke up early this mornin at the air bnb house. The big living room window overlooked the sunrise. I went outside. The air was still and quiet. The birds hadn’t started their daily chirping like they are making trades on Wall Street. The only thing I heard off in the distance was a hooting owl. Of course I loved that. It was my little gift of solitude. So pretty. We had a great breakfast and then we all went our separate ways. Avery found out that she was accepted into SUNY Brockport and will be getting a scholarship that includes her room as well as $4500 per year. She was excited. She still wants to keep her options open before saying “Yes” anywhere. She also is going to explore more scholarships. Ethan enjoyed his quiet weekend. He took care of the dogs. He didn’t necessarily want to be around his family. That is fine. We will just go with it for now. I felt tired and in need of a break. I did some cleaning and cooking. Then I played a game on my phone while entertaining the ...

Today was fun. I got over my funk. I enjoyed the day. I haven’t seen my nephew in a couple of years and it felt great to be able to chat and laugh with him. I heard all about his college apartment, multiple jobs as well as projects he was working on. I loved it. The weather was warmish for upstate NY. It was in the 50’s. We had a campfire as well as did some day drinking. We spent the evening playing games. We ended up playing Cards Against Humanity. We have deducted that Paul now has a colorful search engine history. At one point he asked “do you want the regular definition or the urban dictionary definition?” Which is silly, because the answer will always be the urban dictionary version. Ethan stayed home and took care of the dogs, which was appreciated. He didn’t want to be around us anyway, so that worked out fine. We ate well, laughed hard and enjoyed the company. A well deserved change from yesterday!

Today was a hard day. I felt tired. We started to decorate for Christmas. That really meant that Paul brought up the tree from the basement and set it up. He also brought up the ornaments. I brought up a handful of festive things. They kids didn’t have interest in helping. I was excited to decorate the tree this year. Typically the kids and I place the ornaments on the tree.  I found myself decorating the tree, alone. 3 years I have been waiting to do this and I had pictured it quite differently. I became bitter and angry and just had to stop.  We then picked up the pizza for our big family dinner at an air bnb my brother, sister in-law and nephew were staying at. I was excited to see my nephew because I hadn’t seen him since before Covid. On our way to the Airbnb, Paul pissed me off. In addition to my already crappy mood, this did not go well for Paul. Avery was also crabby and that started to piss me off as well. I was finally pushed over the edge. I had to retreat and have ...

We had the members of our family that could make it, spend this holiday with us. We had everyone come over to watch the Bill’s game. It allowed to bond over a shared interest as well as chat and eat. Normally we deep fry our Turkey. The price of oil deterred us from doing so this year. Instead, I found a brine/rub kit. I mostly followed the instructions and it came out moist and delicious. I would do it again in a second. We may have a new Thanksgiving tradition with the Turkey. All of the sides were delicious. We are going to have leftovers for days. Yum! We don’t have any looming surgeries for the holidays. That is so nice. I feel like it is a reward for all the stuff we have been through. I do hope that Ethan can some day appreciate how lucky he is. Avery made her first pumpkin cheesecake pie. It was yummy.   Happy Thanksgiving. From our family to yours. 

 Tonight we celebrated our Thanksgiving with Nana, Papa and Auntie. We did it low key because of Nana’s knee surgery. Nana was worried because she thought that two Thanksgiving’s was too much for me. Work smarter not harder right? I had our dinner catered and therefore was so easy. After all, it is not the food you eat, but who you share it with that matters. However, the food was delicious. I picked it up on our way over to their house. It was reheated and made the house smell so festive. We had snacks. We shared laughs. It was a nice way to come together so we could all celebrate with Nana and Papa. I had two favorite parts. My first favorite part was that all four of us went to Nana and Papa’s, Ethan included. They were so happy to see him. He seemed to be in a decent mood. My second favorite part was the conversation. It bounced all over the place to different topics. It is interesting to hear the different opinions and views on different issues. Also, the banter is fun to list...

This picture is from a few weeks ago. Look at Ethan flying on that thing. I wished Ethan a happy heart day this morning. He didn’t seem that impressed. I know he wants to forget about medical issues and just get on with his life. We went through a big deal. We still are. Today I had to file paperwork from SSI as well as call the hospital for yet another account that Ethan has, that needed to be resubmitted to insurance from just about 2 years ago. I also finally got the name of a family counselor and made an appointment to go. Ethan has already said he doesn’t want to “waste” his time with another appointment. Who knows, maybe he will go at some point. Either way, I think it will be good for the rest of us. I have been thinking about the donor family non-stop today. I can’t stop putting myself in their shoes. I was happy to see that Ethan made some plans this evening and went out. I hope he has fun and stays safe. It’s weird when I see him do normal stuff. I like that for him. I finall...

2 years ago right about now, a family lost their daughter, Nicole. They called her Colie. Colie’s organs no doubt saved multiple lives, one being Ethan’s. It has been a long journey. Colie was an RN and her family describes her as loving animals. Avery’s talented friend, Rachel, drew this picture for us. We love it. We were visited on November 21st. Not quite 48 hours after signing the paperwork to be officially listed as status 1 A. Ethan had a series of set backs that night which prolonged his surgery and they finished up on 11/22/20. I haven’t heard from the donor family since this spring. I will likely reach out again, soon. Some days I don’t want to reach out. Ethan has proven himself as difficult that day and I wouldn’t want to share that with the donor family. I am grateful everyday for Ethan….even when he is the biggest pain in the ass. We have been through a lot and we keep blazing this odd trail we are on.  Avery had a big day today. She joined the “I am aging” club. She ...

 My back is not well. I am pretty sure I have a herniated disc in my lumbar area. Life without anti inflammatories is a bit rough. Physical therapy helps but I am now getting the pins and needles in my legs. Dang it! This will come and go. Unfortunately it won’t go soon enough. Ethan cleaned his room today, but time. There was so much garbage. Ew!  Avery volunteered at her school today with the school play. What a good kid. We were able to see some good friends this afternoon. That was nice. I had told Avery earlier in the day “Dad and I have a play date with our friends.” Play dates as adults is so much better than play dates as kids. The weather is now getting to the point where I feel assaulted whenever I set foot outside. How did our ancestors do it? No wonder they all died on the Oregan Trail of dysentery. I am sure it was from the frigid air. Back to work tomorrow. This week will be a good one. 

Paul was a work horse today. He finally was able to start loading wood in the garage. He cleaned up leaves. He prepared the yard for snow. This is why I keep him around. I started getting ready for thanksgiving. I had to cook bacon for one of the dishes I am preparing. We rarely eat bacon. I showed Avery how much grease comes off of bacon after it is cooked and she almost puked. Avery and I started running errands. One place we had to go was Walmart. As soon as I pulled into the parking lot I was immediately regretting my decision. People were driving like idiots.  I thought of the news recently in the past week. There was a young guy that was struck by a car locally, that didn’t survive. So many people are hustling and bustling around, living in their own, reckless world. Anytime of year is hard to lose someone, but so close to the holidays is especially terrible. Avery and I took our lives into our hands just navigating through the parking lot to get to the store. I told her it w...

I ended work early today. Not many people are looking for jobs around the holidays. I was told it was ok to do so and expect to not work a whole lot next week. That’s cool. Today is Jiminy’s first birthday. He spent it cuddling with me all day. He didn’t get any special trays today because yesterdays special treats cause his stomach to be a little off. We made up for it with attention though. Ethan hasn’t been working a whole lot this week because some people at his work got Covid and he is being safe. His employer is very cognizant of his health issues and always keeps him safe. We finally got the name of a counselor though my EAP at work. The closest one accepting clients is 44 miles round trip. We are voting for a video call.  I am going to the veterinary conference in Orlando, Florida in January of 2023. I am going to stay a bit longer and go to Tampa with one of my BFF’s after the work conference. Today we booked our tickets. We are excited. I know I will have to work my ass o...

Ethan went to the lab this morning to make sure his levels were stable to continue with his medication change. For the most part, Ethan’s medication change has reflected positively in his bloodwork. The exception, his platelets. His platelet count is going down again. I am sure they will watch it closely. Ethan does say that he doesn’t think he could work full time because he becomes fatigued.  Paul and I both received an odd message from a friend on Facebook messenger. When he arrived home from work, we started talking about it. I told him I had just changed my password and he should do the same. He starts belly-aching. “Ugh, I don’t know how to change my password.” Really Paul? You are a grown adult. “You do too.” I said Paul couldn’t remember his current password.  “Don’t you write it down?” I asked. Why would he write it down?  “I don’t write it down because my device remembers it for me.” 😳 I couldn’t believe what I was hearing. Avery and I gave him a proper ridicul...

 Today was pleasant. The house was quiet with an occasional outburst from Penny. Collections contacted me again. We are making progress. The bill has dropped about $3000. Woo hoo! Paul and Ethan went on a little road trip together. Ethan is purchasing a trailer to store some of his things in, so we can stack wood in the garage. He wanted something portable. This is a great compromise because he can also use it to get his race car to races. He has been saving money all summer. He has always been good at saving money.  Paul has been waking me up the last few nights with his epic snoring. It sounds as if he is being suffocated by his own tongue. He likely has a bit of sleep apnea as well. I tried to put a pillow over my head, but it still didn’t drowned out the sound. At one point I was so tired, that I was in a weird state of sleep. I hear Penny barking in our room. It was load and ear piercing. I was confused because she gets locked up in her crate. When I got up, she wasn’t th...

 Today was normal. Paul had bowling this evening. He was bowling my uncle’s team and my cousin’s girlfriend was bowling right next to them. Occasionally I will go and watch. “Watching” really envolves getting an adult beverage and chatting with people.  I butterflied around, chatting with the different people which is a big deal for me. Bowling alley’s are interesting. There is a certain amount of ridicule that is expected from other teammates. In addition to the bowling league, there is a dart league. There are so many people that are having fun there. I have fun in a different way. I totally enjoyed the hour I was there, but happy to leave after that hour. Not because I didn’t enjoy the company, but because it is loud, with all sorts of noises and smells.after about an hour, my tolerance dwindles. I left before that happened and was so pleased about how my evening turned out. The dogs are loving the round the clock fireplace.

I had a productive day at work today. It was likely because my assistant helped me all day long. He helped by licking my face. I thought about filing a harassment claim against him, but he is so cute, I just allowed it. Jiminy is turning 1 on Friday. He is the dog we never knew we needed. After work, we had a leisurely evening. I did find out that I am going to Virginia for work in a couple weeks. I am excited. I will book my hotel and car tomorrow. Today was a good day. I loved not having to walk outside first thing this morning to rush off to work. I had the wood burning stove going ALL day. It was cozy. I am pretty sure that I could become a hermit and be absolutely fine not leaving the house for days on end.

Something weird is happening in the house. The past two days, Ethan has been more like himself. He has spent more time with us in the living room and has even engaged in conversation. I have seen him smile and even have heard him laugh. I haven’t seen a smile or laugh in weeks. Avery and Ethan were sitting in the living room talking. This hasn’t happened in a while either. I then hear laughter. Both of them laughing. Avery later was talking about it and said it felt like how things used to be. Paul and Ethan are working together with project “We need the garage back for wood”.  It has felt “normal” in the house. I really like it. I know it won’t last. But the glimpse of normalcy is a gift. Maybe it is a lesson that even though things have sucked lately, for me to have patience with Ethan. He is still in there. Through all the anger, and difficult attitude, he is there. With Thanksgiving approaching fast, it strips everything back down to the basics. What are you thankful for? ...

Stupid Daylight savings! I am waking up at 4:00 am… for the day. Ugh! Then come 8 pm I can’t keep my eyes open. I guess if that is the worst of my problems…that isn’t so bad. Paul and Ethan have been working together to solve our garage problem. All of Ethan’s projects are in the garage and we have no place to put wood. We primarily hear our house with a wood burning stove. Normally we start (I say we but really just Paul) stacking wood in October. Currently we have none in the garage. Ethan wanted a shed. He didn’t really act fast enough to make that happen. Our next idea was a portable garage. Ethan didn’t like that because he felt he was wasting his money. Paul came up with the smart idea of getting a trailer. Ethan is a saver. He has the money for a trailer and it is portable. When he leaves home he can use it. Last night I heard the words “Dad, what do you think about” ….and there were words after that. I didn’t pay attention to those words. My inner self lit up. Oh my gosh, he ju...

 I was emailing back and forth with the NP from the Children’s Hospital. We were emailing back and forth regarding a plan for the upcoming medication switch. It isn’t the easiest process. Ethan had to discontinue the medication that helps keep his blood levels up on his rejection medication. This means we have to give more of the rejection medication to maintain the levels. It’s a balancing act. After emailing, I called the pharmacy to see when the new medication would be ready. They didn’t have a script yet. I asked our NP if she could send over a script.  She called me right away. This lady is super nice. She has helped us with many things over the past two years. She ordered the new medication we will be switching to. Unfortunately, she ordered it at a pharmacy in NYC. Unfortunately, that pharmacy ships the medications and unfortunately, they shipped it to the address for the apartment we rented. She then called said pharmacy and asked them to overnight us some pills. She a...

What a gorgeous day. I walked the dogs multiple times. The sun was massaging us as we walked around the field. I may have done more walking and less working. Ethan had to go back to the lab. He is now officially being weaned over to the other blood thinner. Hopefully this new medication won’t screw up his cbc. To do so, he has to go off blood thinners all together until the 15 th. My fingers are crossed. I had a meeting with my big boss today. She is quite pleased with my progress at work. I am still learning but I have got a good feel for what I am supposed to doing combined with a strong work ethic. I am efficient which means I have more time for dog walks on a warm and sunny day. I spent some time on the phone with the hospital about another bill. Turns out, Ethan has several accounts. Why? No idea.  So I had the lady comb through Ethan’s chart to find his previous insurance and resubmit it. I am getting this down a bit better. At least they didn’t make Ethan get on the phone. I...

 It was chilly this morning. But the day shaped up nice. I had a competition at work today to see who could source the most candidates in an hour. There are prizes. I am not sure when the winners are announced, but they get a gift card. I am crossing my fingers as I am competitive, plus the least experienced on the team. I spent some time on the phone with the finance department of the Hospital in NYC because I am still getting bills from December 2020. They are bills I haven’t gotten before. Where did they come from? Really? You wait almost 2 years? When I finally got to discuss my bill, they declined to discuss it without Ethan’s approval. Luckily he was home. He had to get on and give approval. I could feel myself getting heated. “We filled out a form to allow me to discuss his bills, is that form not valid anymore.” There was a long pause as she said she didn’t see a form. She fumbled with her words. I know it isn’t her fault, but I don’t understand. It seems like an alert coul...

 Paul had today off. We decided we were going to go vote together. We briefly discussed our voting plan prior to entering the building. At the sign in table the lady asked me my name. “Patricia Diiulio” I said.  “What kind of last name is that?” She asked with a wrinkled up face.  A flash of unacceptable and inappropriate answers flew through my brain. They were both snarky, judgmental and probably not kind.  “The Italian kind” I answered. They explained to us how to vote. Color the dot of the chosen person in black ink. I finished before Paul and submitted my ballet. Paul did the same shortly after. On the walk out to the car he says “we were supposed to color all the dots right?” I just shook my head. He laughed at his own joke. This evening I helped Avery study for AP chemistry. I don’t know how much I really help. I took AP chemistry but remember nothing. Ethan started to pick up the garage a little bit. We chatted about therapy. We talked about how we had to agr...

Today was a pretty day. Back to the grind. I was a bit slow at work so I blew off the afternoon and did some chores and made a nice dinner. We are in the process of changing Ethan’s medications. So we got the call for the medication adjustment and have to return to the lab on Thursday. Ethan will be so thrilled. I took all 4 dogs for an extended walk around the field. We went around the field several times. My back is still sore so, you know, motion is lotion. The sun was warm. The dogs loved it. Can you imagine a life where you get so excited to go and pee on things multiple times? Little Jiminy runs with the other dogs. He is much slower than they are due to his short legs but he has just as much happiness in his short little hops as the bigger dogs do with their longer legs.

Daylight savings time. It means the whole week will be spent readjusting to the time difference. But it also meant it was a good day to sleep in. Avery and I watched a few episodes of the Handmaid’s Tale. I figured I would kill two birds with one stone and get a little work done. I will be able to quite early one day this week. Probably Tuesday so we can go vote. I have to do my due diligence as a citizen.  Ethan spent the entire day in his room. I think he may be a bit miffed from our family talk the other night. He is trying to figure out his plan for his stuff this winter. Avery and I worked on her FAFSA application. We got half way done. We then realized Paul (it is his job) never picked up our taxes last year. So tomorrow he is making a trip to go get them. Paul spent time out in the yard stacking wood. It was a good day for that.

 Ethan got to go to JNK days. JNK days is a once a year event in our town where people come together that share a similar interest in building and riding 4 wheelers, dirt bikes, go karts and more. They ride them in a big field. He had fun. However, when we asked him if he had fun, he responded with a barely audible, almost non existent “yes”. That was the only communication we have had from him in hours. Paul, Avery and I met up with Ethan’s dialysis nurse. His poor nurse, subjected to us three. What a trooper! We love his company! We met at one of my favorite restaurants, Margaritas. They have really yummy Margaritas. I also saw my dental hygienist…again…this time I put my hand on HER shoulder….. she controls her face much better than I do. Today was a day full of doing! I shampooed all the rugs, the couch, the upstairs hallway rug, as well as washed all the blankets and pillow covers from the couch. Everything was mopped. I washed 2/4 dogs (The other two were washed earlier in th...

Today was busy for me. I had some phone interviews, meetings to attend and then a co-worker happy hour. The coworker happy hour was done on zoom. It was pretty cool because I see these people daily but don’t have the opportunity to talk around the “water cooler” so to speak.  We had an hour to socialize with a drink of our choice, I chose beer. I then got thinking…..does it really mean I could bring an alcoholic beverage? Will I be evaluated on what I am consuming? Ugh! Happy hour to me, means an alcoholic beverage. I am going to cautiously choose this route. I selected my beer of choice. I had it off camera and chose to put it in a koozie. This way it could just look like a soda. I showed up at the meeting…as the new girl (I wasn’t able to attend the last meeting last month). Immediately they asked what I was drinking. “Sparkling water” I proudly declared. I am not falling for their trap. “What flavor” well crap….pick a flavor Patti…..pick a flavor…..long pause….screw it. “Beer fl...

Today was hard. I talked to Ethan a little bit about his plan for the garage. Currently our garage has been in use, by Ethan in a constant state of “work in progress” as he either worked on his race car or worked on his go-cart. Paul’s tools are scattered throughout the garage. Paul can’t find anything. I asked him to look up his options of moving his things out of the garage. Storage unit vs. purchasing a portable garage. He decided his money would be better spent on a portable garage. He really didn’t want the storage unit.  As we began talking, I did disclose that if the portable garage looked junky, I would not like it to be in the front of the house. ”why? Because you don’t want people judging you?” He asked. I responded that “we work very hard to keep our house nice. It brings me joy to see the house look nice. I didn’t want to put up anything that could damage that joy for me. Also, I pay the mortgage and I am not wrong for wanting my house to look a certain way”. I also kin...

Today was a blah day. I had a nagging headache that evolved as the day went on. Maybe a walk will help. Nope. Maybe a snack will help. Nope. Maybe I need to increase my water intake. Nope. Nothing helped. I am going to try sleep. Maybe sleep will help? My mood is blah too. It’s a little chilly out, enough for me to be cold. The cold sucks my energy. Maybe a walk will help. Nope….see where I am going with this? Dog snuggling seems to be the only effective treatment at this time For chilliness. Avery and I made it to season two of Handmaid’s tail. It is so good, but so infuriating. I try to imagine what I would do if I were in that situation. All of the things I come up with aren’t good. I am glad it isn’t real.

How is it November?  We got Ethan’s calendar timeline of what the medication and blood draw schedule looks like. We have started implementing the changes already. It really is kind of a pain in the neck, but WAY better than an injectable medication, so we will take what we can get. It makes me a little anxious to switch, only because this refining is working and protecting these organs. I know this is best in the long run, because the new medication is kinder to his kidney. I just want everything to go smooth for him. Nama was a trooper today! She did well and has a brand new knee. Now the hard part begins for her. Rehab. Remember Ethan’s motto….Gotta kick ass! Tuesday afternoon’s are when Ethan has his therapy. I could hear voices coming from his room. I am hoping that he is being helped. He says it is making a difference. He keeps track of his appointments and attends them without reminder or me nagging at him. I consider that a big win. I felt tired today. I think because it was...