Ethan’s Journey

Today consisted of unpacking the camper for the season, getting everything clean in there, dialysis, and chores. We tried to pack all the chores in today, since we were hanging out yesterday and enjoying our time camping. During dialysis, Ethan and I talked about how he is again, worried about not coming home from NYC…..ever. What a heavy burden he carries. There is really nothing I can say that can make it better. So I reply with “I can’t imagine how scary that must feel to you.” I can’t say “this time will be better”, because frankly….I have no idea. I do feel a weird calmness about the whole situation. I am not sure why. But I don’t mind it. I ordered us matching shirts. We are going to wear them to the hospital. One is for the kidney donor, one is for the kidney recipient. They are hilarious. One thing about that jerk, hell, is I can’t feed it anything. The best way to beat hell….is to enjoy yourself, ohhhhhhh laughing for sure, accepting your cards and keep moving forward. I am go

Today I worked. Then went back to camping. We hung out this afternoon around the campfire to stay warm. Luckily the rain subsided. Ethan and his friends raced their go-karts and got muddy. He had fun. A day with friends is just the fix I needed. We went to a Halloween party. While we were there, I noticed there was a “vote for best costume” box. Everyone was to vote for the best costume. First prize was some gift cards. I thought it would have been funny if we all voted for a costume that didn’t exist. Then that would win first place….and how funny it would be that they announced a costume that didn’t exhaust. This is a bad habit I have when I have had a drink or two. Coming up with non-hurtful ways to punk everyone. I convinced everyone in our party to vote for the “tampon” costume (which did not exist). The “tampon” costume turned into the” Paul and Paul tampons”.  There is a chance we stuffed the ballot when no one was looking. I kept trying to convince everyone to vote multiple tim

Rain! Ugh. Not cool for the last camping weekend. Paul told me no animals camping as the kids and their friends are at the house. What? No animals? It is like asking me to hold my breath for the entire weekend. So I only snuck one animal with us. It was too late. Paul didn’t even know he was there until after we arrived. It is not considered camping unless there are animals with us. Lucky Ferguson. I have to work in the morning so we stayed close to home.  Ethan has been working in the garage all week on his go-kart. Paul and I agree it is great to see him out there again. It is great therapy for him to process things. Paul and I were talking tonight and I realized that we are preparing for the same thing to happen again. Paul said that “it is going to suck not being with you guys for Christmas”. Technically, if things go as they are supposed to, we will be back to the apartment by mid December….Paul and Avery will be able too become visit and even go see the big tree. I guess it is ha

Tensions are running high in this house. As we navigate through Ethan’s anxiety and him worrying that he won’t make it home after transplant. We argued over schoolwork today, but it was evident that wasn’t why Ethan argued with me. We don’t really argue, so this was a fun time (and by fun, I mean NOT fun). His point is that school work is a “waste of time”. Of course I got upset by this statement. After a while I realized he is so worried he is not coming home after transplant, that he is actively living like this is his last month alive. I was talking about balancing work and fun. He couldn’t verbalize it but he is worried this is his last month alive and he doesn’t want to spend his last month alive on schoolwork. Listening is key. I almost missed this information hidden within his teenage nonsensical banter with me. We were arguing over two completely different issues. I keep telling him that he needs to go to someone to work through his anger of having these health issues, anxiety

We found out our surgery date at 4:45 pm yesterday. I was also told I needed to complete another round of lab tests. So this morning I drove about an hour and 15 minutes to the closest lab that communicates with NYC, to have my labs done.  My appointment started at 7:30. It was an early morning.  I had my therapeutic blood letting and urine test. Then I was on my way back to Rochester. My phone blew up today with calls, texts and emails from New York City. Between Ethan and I, there were 8 appointments made, with more to come, all in the next few weeks. Mostly video visits thankfully. So far I have my pre-op visit (in-person) scheduled, waiting to hear when Ethan’s is. I am trying to make it for the same day or at least close together. The 6 hour drive is not for sissies. I also have to keep my team and Ethan’s transplant team separate. It is hard to remember who goes with whom. I get calls for appointments and I have to ask what team they are on. I have a place I am trying to rent to

 FINALLY! We have a date! November 30 th will be the transplant date. We have a number of things to do and research over the next few weeks.  I am so excited that there is an end to dialysis. I almost cried!  Ethan worked in the garage all afternoon with his buddy. They were tinkering with plexiglass and the go-kart.  We are still learning details and I have an early morning lab appointment tomorrow to repeat some tests.  We have to go down a week or so in advance for more blood testing and exams. Then we will make the move down for a number of weeks. This is GREAT news.

 I keep writing blogs and think that I posted but fall asleep and don’t actually post them. Ugh!  I got a call from Monroe County social services. They couldn’t tell me exactly what the deal is with the “exemption” but at least I made progress. I asked them to send Ethan a letter stating it was ok for them to talk to me. He will sign and return. It will be easier to communicate with them when they can actually give me information. They couldn’t explain fully but I can contact my transplant financial coordinator and social worker and they should be able to access Ethan’s Medicare number so we can schedule Ethan’s surgery. This prompted me to send an email to the transplant coordinator asking her to help us get on the surgical schedule. I will wait to see what the verdict is on that. I am sick of having our lives put on hold. Another dialysis day today. As dialysis comes to an end, I think of all the things I have to do before I can go to bed. These days are so long and tiring. I am hopi

We went to a celebration of life today for a 24 year old that spent a lot of time with the kids growing up. Life is so random. As I tried to put myself in his mom’s shoes, I verbalized to Paul, “we were so close to being in this spot”. It’s a tricky balance to think of how things could have been different and being thankful for what you have, even if it is not the exact way you imagined it. I am getting so tired of losing the time I would have had, if we did not have to do dialysis. Yet, I am thankful that there is a way for Ethan to be stable, be at home, and be able to live and find his joy. It’s an odd conundrum. I am hoping that we make some progress this week and can focus on getting this behind us.  Ethan and I have talked about how everyone says kidney transplant is way easier than a heart transplant. The science is there to back it up. We both can’t stop thinking that things will go terribly wrong again. Perhaps we are a bit reluctant to bank on things going exactly as they are

I met some of our family’s cheerleaders tonight, which was such an honor. People that have helped us along the way. People that will help us moving forward. People that have never met us, but we’re so willing to be generous to us. Wow! It’s a small world. We went to a Halloween party at our family’s house. It was so much fun. I didn’t really have time to plan costumes like I have in years past. I like to plan funny costumes that are slightly embarrassing for Paul. I ran out of time. My costume was lame. A cat. Not one of those sexy, hot cats….more like Garfield, a cat that enjoys being lazy and eating.  I found the costume a month or two ago with Avery at the thrift story. I had nothing for Paul. Ideas were nonexistent. On Thursday; it was my last ditch effort to come up with a costume idea. We usually do couples costumes. I found a piece of bread with jelly on it. I immediately changed the “label” of the costume to “Aunt Flo”. It was like a fine piece of art work and deserved a worthy

  When I got home from work today, Ethan was fast asleep on the couch. Nothing wakes him up. Little Ferguson was cuddled in his lap sleeping as well. We had fun tonight visiting with Brian and Kristen. We went to the haunted museum and listened to all the ghostly encounters. Afterward we went out to dinner. It was a wonderful evening. I am tired and am going down for the count.

I made zero progress with my exempt/approved Medicaid issue. I placed a few calls but it seems no one answers. I suspect they have case over loads and just haven’t gotten to our turn yet. I called the supervisor as instructed within the voicemail I left the other day. No answer. It is increasingly more difficult to keep our schedules wide open “just in case”. I just want to get on the damn schedule. We skipped Ethan’s dialysis treatment tonight and will do it on Saturday. I thought I had an alternative plan but I miscalculated and now we have to wait. Minor inconvenience and the beauty of home dialysis, easy to reschedule. We have some fun plans this weekend (Paul and I). I love paranormal activity and find it fascinating. We are going to Iron Island museum in Buffalo. Hopefully it will be full of spirits. My bright side was listening to the thunder and watching the lightening tonight. What a spectacular show! So glad the dogs have already been out for the night.

 Today was so productive. I dropped of a couple boxes of donations  to the local food shelf. I dropped off several bags to the local clothing closet. I made some returns, did a couple work related chores and picked Ethan up. We went to the nephrologist. We also saw our dialysis nurse (Ethan mentioned that was the best part of our appointment).  All of Ethan’s numbers looked great. I had all smiley faces for the month for completing all treatments. I mean, Ethan’s longevity sort of depends on it, so there is no way I would miss a treatment. I also learned a fun fact over the weekend. If you are a patient on dialysis and need a dialysis treatment for what ever reason (traveling, the damn machine beeps at you too much and you throw it out the window, your center is booked, whatever) you can go to the emergency room and they will do your dialysis treatment there. I am not saying this is the most cost effective route to go, but it is an option. I will keep it in mind the next time we are tr

 I called the number I was supposed to call to find out more about Ethan’s “exemption”. I had to leave a message. It clearly stated to not call more than one time. It also had the name of a supervisor to contact if I don’t hear back from our case worker. I didn’t hear back today but have faith that tomorrow will be my lucky day. Wednesday, my day off. Phew! I have errands to run, calls to make and we meet with our local nephrologist. I also get to see our dialysis nurse (which will be a highlight of the day).  Ethan is looking forward to class tomorrow as he is going to get to put the tires for his go kart on the rims. This is in preparation of an event Ethan likes to be a part of.  He will race and ride his go kart with his friends and have a day of fun with his buddies.  I got home from work and was exhausted. I took some vitamins and am calling it quits for the day. I will be ready to go by morning.

This entire day was frustrating, we were short staffed. It is what it is. I got to work at 6 am and left work around noon to drop Ethan off at his co-op. That took up my entire lunch hour and back to work I went until a little after 5. I immediately came home to start dialysis.  While the machine was doing it’s warm up routine, I made dinner and brought it in Ethan’s room to eat while he was having his treatment. All was going as planned until our dialysis machine became Janice from friends and threw alarm after alarm….after alarm.  The machine wasn’t running like it normally does. Every time it alarmed, it was accompanied by a super sonic blast of piercing assault to our ears. Our treatment kept extending as I was trying to navigate the alarms and read through how to resolve them. Nothing was working. We have a hotline that we call when this issue occurs. I did a couple troubleshooting moves and it was at least running.  Running much slower, but running. I had a few minutes with thing

I worked for a short time today. I came home and decided to quick clean out my closet and drawers. Then my hall closet. Then I had several bags for donation. This makes me happy as I would love to help someone out in my community. I am going to give it to the town clothing closet.  Not to brag, but my mom runs the Undie Sunday at her church. The name cracks me up but I am always proud of her when she takes this on. Undie Sunday encourages all the members to donate NEW underwear of all sizes. Kids, ladies, men…and then they are dispersed amongst families in need within the community. I have also been purchasing different items each grocery run to donate to the local food pantry. I can’t do much as far as donating my time goes, but this does make me feel like I am helping. I found on Amazon that I can get 6 tubes of toothpaste for $1.40 per tube. I try to make small purchases so we don’t really notice it. I also save the lotions and shampoos from hotels that we go to and donate those as

 Today I had a full day at home. It was full of much needed cleaning. Chauncey helped, that is our robotic vacuum cleaners (roomba) name. If you don’t have one, I recommend you get one. Ours self empties and you change the bay about once a month. It is a great addition when you have 3 dogs. It is worth every penny. I also washed the dogs, cleaned their bedding and washed all the snuggly living room blankets. Tonight we visited with our dialysis nurse. It was so wonderful to catch up and just laugh. I do have to work in the morning and with the days getting darker out, earlier, when it is 7:00 pm it feels like 11:30 pm. I am ready to call it quits for today. I have accomplished a lot. I am also thankful that the entire family spent some time together.

 No rejection! Yes!!!!!!! I did sit down and look at every single blood test and read over all the reports. I replied to the wonderful email stating Ethan had no rejection, with questions regarding endocrinology, lab work, questions about the hole that was surgically created in the new heart back when Ethan was struggling with pulmonary hypertension. Plus several more. It was nice to wake up and have coffee with Paul. A lot of times he is so busy compensating for things that I am not doing around the house because of dialysis, that we don’t see each other that often. We sleep in the same bed and snore at each other, but during the week we just have quick “debriefings”. Today, I head into work. I am mentally exhausted from the last couple days. I slept well but still feel tired. Sometimes I spend so much time making sure things are less sucky for Ethan, I don’t really remember myself. I am kicking myself for actually going back to work today because there is so much to do at home. This

We made it home! It was an uneventful drive. Those are my favorite. The colors were still as brilliant as they were 2 days ago. Ethan and I listened to some Howard Stern and we laughed at the shinanigans going on.  We got Ethan’s Medicaid card in the mail. I sent out some emails with his paperwork attached, which will get us one step closer to a surgical date. The next couple of weeks will be a blur as we are so busy. We are mentally exhausted after this week. 

I scheduled our Uber into the city for 1/2 hour before our appointment time. We are literally 4-5 miles from the hospital in NJ. There was a sea of tail lights the entire way across the George Washington Bridge with 8 lanes of traffic (reminiscent of our Atlanta traffic days). Luckily, I had a cup of coffee before we left the hotel. However, I did regret not having my coffee in the Uber. No one wants beverages in their car. They can be spilled and you have to remove your mask to drink it. So it’s an Uber no-no. It is weird coming from our small town where mask wearing is optional in most venues. Everyone in NYC is in masks on the street. You can’t get into a restaurant without your proof of vaccination (luckily we had it this time), you can’t get up from your table without your mask. Ethan was not looking forward to today. I mean, who would? They had Ethan “prepare his nether region” with the clippers. That will probably be itchy in a day or two. They will access his artery and vein in

We left for the big city at around 10:00 am. Ethan had to attend English class. We got a call as we were leaving the house. NYC needed to get a copy of Ethan’s negative covid test. The copy of the results that I screen shorted and emailed yesterday weren’t good enough because it didn’t have his birthdate written on it. I was asked to call the lab and have the results faxed (my nemesis) over to NYC. I called the lab and they said I needed to Call the “Medical records” office. I called and was on hold for many minutes. Finally we got to talk to a live person. They informed us that the hospital has to call and get that information, not us. I called my friend in NYC and told her. I had to give her the info, while driving, and she was quite annoyed (not with me) that they would fax the info requested at my request. I get that too. Finally, we got it taken care of.  We had a few other calls along the way. We dealt with those calls as we drove along. We arrived around 4:00 pm. We stopped once

Prepping for our trip after dialysis tonight. I started to get tired so I had to quit. I will resume in the morning. I triple checked my dialysis supplies. I can’t screw up dialysis because the dye they will be using for Ethan’s procedure can be kidney toxic. We have to dialyze  after his 4 hours of laying flat.  Everything else I don’t much care if I forget. No pressure….but lots of pressure. I don’t love driving. I am not looking forward to driving 6 hours. We may be cutting it close to our dinner plans too. As Ethan reminded me, we will bay rush because “it’s better to arrive late than to be dead.” Ethan has a way with words…but he is right.  Since I have an issue with speeding and tickets…..I assured him I was going to use cruise control. Speeding comes naturally. My foot is just heavy. I am going to bed and getting rest so I don’t fall asleep driving.

Ethan and I had to leave early from camping to do dialysis. He and I both can’t wait for the day that dialysis is no longer needed. We are sick of missing out. We just need to get through this snippet of time to get to the next step. Today, Ethan shared videos of bearded dragon lizards being silly.  Ethan wants a bearded dragon but knows he has to wait until 6 months after transplant to get one. The infectious disease team said he would be at an increased risk for salmonella right after surgery. I am not opposed to getting a lizard but they are a lot of work. I don’t want to add a lizard to my plate or budget. Ethan can take that on if he wants once he is cleared by the infectious disease team. However, I will promise that I will dress the lizard up in cute outfits…..like I do every other little creature that will play along. Tomorrow is going to be a long day. 11 hour work day followed by dialysis. Then Ethan and I are flying solo to  New York City for his heart catheterization and bi

 We all had fun today. We had a wine tasting with friends. We made sure that we got our food first and didn’t eat after others. We maintained distance outside. We laughed…..a lot. I find laughter to fix just about anything. My soul felt happy today. I have noticed that I am more capable of letting things go than I was a year ago. I can roll with the punches easier. Not as much bothers me. This is my bright side. I did worry though last night that with multiple people falling ill around us, that I was going to get sick as well. I woke up multiple times thinking my throat might hurt, but then realizing it didn’t.  I also was convinced I couldn’t taste or smell and then the dog would fart. I was never so happy for a dog fart in my life. I am clearly worried about getting Ethan sick before his biopsy and catheter of his heart. I have worn a mask around people that weren’t feeling well and washed my hands and maybe some skin (because they are so raw from washing) off. Ethan walked an impres

 More work today. Finally I am done with my 9 day run. Had to take Ethan to get a PCR covid test done for his procedure next week. We went to the lab at the hospital and they sent us next door to the Emergency Room. Ugh! More sick people exposure. We walked in fearful to breath and touch things. Ethan didn’t even want to sit down because he didn’t want to get anything on his clothes. We waited for what seemed like forever  (but it was really like 20 minutes). Ethan was brave and makes covid tests seem normal at this point. He takes those swabs like a champ. We then picked up dinner and headed out to visit with friends. The evening was spent visiting friends and family. It seems at this point our friends are our family so it is one in the same.  I was explaining to someone recently how I don’t really get upset at little things anymore. That is one of my developed coping skills. It makes life much simpler. If something goes wrong, I am just thankful it isn’t worse. This is another positi

My ground angel, Stephanie, swooped in for the rescue today. She had good information that was so helpful and kind. Thank you Stephanie. She is going to get me in touch with a local contact for specific questions. We still have about another month until we hear back from Medicare. We are getting closer. I have had a headache most of the afternoon. I know it’s because I am tired. Tomorrow will be my 9 th day straight of working. I look forward to a break this weekend. As we were doing dialysis tonight, Paul brought the mail up for me to open. We got something from social services. As I read it, I realized we are one step closer. Progress. I am smiling ear to ear…..even with a head ache. I then opened the second letter and it says that our application for Medicare has been received. They will be in touch when it is reviewed and decided upon. Wow! I also need to work on being more patient. Had I waited one more day…..I wouldn’t have been so frustrated yesterday.

  So we got a letter in the mail from New York State of Health. It was to deny us of coverage for Medicaid. 🤬.  Are you kidding me? I has a swirling of anger and frustration within me. Within the letter is states that if you have any questions call such and such phone number. So I did. The first time I was on hold about 15 minutes before I spoke to a live person. She said “hi this is Amanda.” And then we got “disconnected”. I had to call back and go through the whole damn process again. When I finally got a person on the other end, I explained the letter that I received. I also explained the situation and how we are waiting on the approval that Ethan is entitled to. The lady was very nice and really seemed to feel for our situation. She started “looking into some things” and then told me that we were approved for Medicaid…..IN APRIL….. at the county level not the state level. IN APRIL………..what????????? What does county level mean? I know enough to ask questions, so I asked what that m

Today was long. I was thankful for a break from dialysis. I did, however, get it all set up for tomorrow. I am ready to go.  Ethan continues to gain weight. He is steadily increasing as the days move forward.   I went to the pharmacy to pick up Ethan’s medications….for the second time and found that the rejection medication was not in the bunch (when I got home). We ran out a couple days ago. He takes 3 mg twice a day. The 1 mg capsules have been gone since Sunday. I have been using the 0.5 mg capsules and giving him 6. He has not had a lapse in medication. I called the pharmacy to inquire why. Ethan’s pharmacist (who is so nice and asks how he is doing all the time), said he had sent the request to NYC for refill twice.  I told him I would send an email.   I sent the email and within 5 minutes (6:58 pm) Ethan’s pharmacist called me back and said that the medication had been called in by Ethan’s doctor. He even asked if I wanted to come get it.  Knowing that he closed the pharmacy at 7

We had a little mishap tonight during dialysis. Somehow when Ethan was on the machine, the drain line became dislodged. After about an hour of dialysis, it was discovered.   ❤️I heard Paul rattle off a slew of off color words. There was some panicked “get a towel” thrown in.  There may have been some Italian words that were less than polite. The “water” had seeped into the wall, and leaked out one of our lights in the kitchen, and all over the kitchen counter and floor.  I couldn’t really help much as Ethan was hooked up to the machine. I can’t leave him just in case something goes a wry. As Paul was in the bathroom soaking up water, I made an off color comment about how it smelled foul in the bathroom. It did smell foul. Putrid. I walked back in Ethan’s room which is literally 3 steps away. I complained about the smell and couldn’t figure out what was smelling so bad. Ethan piped up…” It’s my waste line.”  Of course it is.  The waste line became dislodged in the pipe causing it to lea

Spent the entire morning at work. It was good work. We did 3 C-Sections. Lots of good puppy noises and cuddles, but long morning. When I got home, I immediately went up to get dialysis started. I was able to get some “business” done while dialysis was going on. I make sure that Ferguson gets lots of kisses and I tell him how handsome he is.  I get my Emails sent, banking, calling prescription refills into the pharmacy, grocery shopping on instacart (thankfully this exists)…….I try to utilize the time the best that I can. Ethan also needed a hair cut, so we did that after dialysis. He was looking a bit rough, but now he has much cleaner hair lines.  I have been cutting his hair since he was born. I have only once (maybe twice) taken him to have his hair cut. Ethan has always liked being home, so it just is convenient for both of us. I am feeling extra tired this evening. So I am going to bed early and trying to catch up on some rest. When your body tells you to rest, you should listen.

I worked today. Then went to a celebration of life for one of my BFF’s mom, Barb. It was really nice. It was held in a small restaurant with big windows that let the sunshine dance upon of all that attended. I liked how it was not at a funeral home. Pictures of Barb were displayed on a big TV.  Each memory hit the tv screen as a snippet of Barb’s personality. As guests saw themselves along side of Barb, they would share the story behind the picture which was usually a funny anecdote with a splash of Barb shinanagans.  Pictures of Barb when she was younger, resembled those of her daughter faces. This woman made a mark on each and every life of the person that attended. It reminds you that to the world, you are one person.  To one person, you may BE their world. It is a good reminder to spend time with those you love.   My mom always asks for the gift of time. I can understand why.  When I arrived home, I pulled in and saw Paul and Ethan sitting in lawn chairs in the driveway. What a gre

Today was a whole new day and I was feeling better. I even managed to take the dogs for a walk as well as complete dialysis for the week. Unfortunately we got the news that the rules have changed again in NYC and they have started requiring a COVID test against for procedures. So next week Ethan has to get his covid test even though in his words “I have had 3 COVID vaccines.” Today I made a little more progress with the collection agency. Little by little the insurance  company is taking care of the amounts we do NOT owe based on our preauthorization letters. This is great news. It seems everyone is cooperating to resolve this. It is such a long process. I work tomorrow, so I am going to get a good nights sleep (hopefully).