Remembering our beloved Jodie

We write with heavy hearts today. It is with incredible sadness and shock that we share the news that Jodie—a beloved wife, daughter, sister, aunt, friend, colleague and the strongest person we know—passed away on Wednesday, due to complications arising from heart transplant rejection.

 

This is an unexpected and devastating loss for all of us. We grieve with you.

 

A memorial service will be held the morning of Saturday, August 20 in Chicago. In lieu of flowers, the family is designating a beneficiary for donations. Final details on the memorial service and donations will be shared soon. A remote (online) viewing option will be available for the service.

 

For those following along on this blog, she did not have Covid; two PCR lab tests confirmed this. She was readmitted to the hospital on Tuesday under close monitoring and suffered a sudden cardiac arrest that night. The medical team was with her and immediately did everything they could to bring her back to us, but her heart was too weak due to the transplant rejection.

 

All who were fortunate enough to know Jodie have been forever changed for the better. Throughout her life, she was not defined solely by her heart disease—she was a brilliant scholar, a swing dancer, a compassionate therapist, an artistic quiltmaker, an advocate for young adults with chronic illness, a heart health hero recognized nationally at the Woman's Day Red Dress Awards. She always set her goals high and her dreams even higher. She achieved so many of those dreams and all of us got to bask in the glow of her achievements, and her boundless energy and light.

 

In recent years she helped hundreds of people, young adults and their families and communities, dedicating her adult life to helping children with chronic illness live fulfilling and meaningful lives. To teaching them that they can pursue all of their dreams, in spite of the challenges of their health conditions. To not be defined solely by their illnesses. She was a role model to innumerable patients, colleagues, and friends. Her impactful and meaningful work was recognized across the country and served as a model for other organizations assisting young adults with chronic illness. Her lasting impact will be felt in the coming years and decades as these young people go out and make the world a better place.

 

Jodie would want us to do the same.

 

With love,

Peter and the Neukirch Elliott family

Infusions, energy, and covid

 By Thursday night I had not gotten a good night's sleep for a few nights, so my doctors suggested a med to take before bed. It helped and Friday I woke up feeling refreshed and energized. It was a quiet morning, then Liz and I headed over the hospital for my infusion.  We got there early, and I let them know that I would probably need IV team.  When they brought me back iv team had already been called. It took about 2 hours for them to get there, but Liz and I chatted, she went and got us food, and then it was the 4 hours of the infusion.  We headed home after and had a quiet night in. I was able to walk to the infusion clinic, but was too tired to walk back. 

Saturday we slept in. I got a call in the morning that my labs came in, and the ones related to my kidneys didn't look great, so they decided to hold one of my meds. We played some board games, watched a movie, video chatted with friends, and just rested.  My energy has been a bit lower the last few days, but I am napping when needed and that helps. 

Sunday morning I woke up feeling short of breath. I figured this was because my lasix was held and I was holding onto water weight.  But since I had coughed a few times on Saturday, I took a covid test to be safe. Imagine my surprise when there was a very, very faint line in the test area. I grabbed another test and made sure to get a really good sample. This time as soon as the liquid hit the test line it turned pink. Luckily, Peter and Liz's tests were negative. Liz had been wearing an N95 the whole time she was here, but Peter and I immediately masked up. 

I called the transplant doctor on call, who told me that covid is running rampant right now and I was the 6th patient this weekend who had tested positive and that he was putting in a prescription for the covid pill. I found a lab test slot at the CVS, went and did that, picked up the meds, and then we came back and tried to enjoy our final bit of Liz's visit. We were more distanced, and washed our hands a ton, and were wearing N95's the whole time.  I had one actual N95 from when I was in the hospital, and I like how it feels so I ordered 40 of them on Amazon and they should be here tomorrow. 

So far I am feeling tired, a little short of breath, and I'm coughing periodically. Hopefully it does not get much worse than that, but the doctors have said to call if anything changes. The most frustrating part of this is that my tests tomorrow are all canceled (understandably). I'll re-test on Friday after I finish my meds. Peter and I luckily have a big enough house that we can each have a "zone" that we can be unmasked in that the other won't go in, and then other shared areas that we will mask in. I'm hoping that neither Peter or Liz catch this.  The best guess is that I caught this on Friday when I was at the hospital.  I was sitting in one place for over 6 hours, with my mask off at times to eat and drink, so it is most likely since otherwise I haven't been anywhere.  Plus, between my immune system being wiped out, my antibodies taken out, and killing my cells that make new antibodies, I had no protection, so much less exposure would probably make me sick in comparison to a normal vaccinated person.  I'll get my official PCR results tomorrow, but I'm expecting them to be positive. 

Stay safe all!

Resting and recuperating

 The last few days I've been trying to rest and recuperate. I've been trying to let myself sleep in a little, although Neal, my cat, often has other ideas around 7:30.  I've been sticking to my normal morning schedule as much as possible, but find that it wears me out more than expected. I've usually been ok through lunchtime, but then I need  a nap in the afternoon. 

There are still a lot of things that I can do, but it takes more energy than I'm used to. I'm trying to be patient, as I do notice small improvements every day. My cousin Liz flew in yesterday and is staying until Sunday to help out.  Although she wore an N95 her whole time from Chicago to Durham, the two of us are still wearing masks inside around each other to be safe as she self-tests for Covid over the next few days.  It is so good to have her here.  It's giving Peter a little break so he can actually work full days.  It also is really helpful for me to catch up on things I need to do. For example, I can do laundry even though I can't carry the basket. Plus we are getting some time together, which is really, really nice. 

I'm just taking it day by day.  I have an infusion on Friday morning, and then my appointment with transplant and all the tests on Monday.  Here's hoping that lots of healing takes place by then.  My heart rate has been more in the low 100s lately, although there have been two times that it has been down to 93! This is finally closer to where it was before I went into rejection. 

Settling back home

 Yesterday (Friday) I got up expecting to be discharged in the morning, especially since they had taken out my neck line the night before. I packed up my sewing machine and was ready to go.  The team came in around 9:30am, and they still wanted to discharge me but also wanted me to get in one more treatment. My lab tests confirmed that my body had produced an antibody specific to my donor heart, and that this was new, since I did not have it back in April.  This is both good and bad.  Bad because now that my body has produced it, the plans for that antibody will be stored in my immune system's memory.  Good because now we know what to keep an eye on. The treatments I had in the last week first stopped my immune system from working and then got rid of 99% of all my antibodies, including the ones attacking my heart.  The doctor wanted me to do an infusion of a cancer drug that kills the cells that make antibodies.  This will make it so the rest of my immune system can slowly come back on line, but we will keep my body from making more of these harmful anti-donor-heart antibodies.  I'll do a weekly infusion for a month, and by then my body should "forget" to be looking for my new heart, be properly suppressed, and not start making the antibodies again.  We can also test my blood for if they come back, so we can confirm what is happening quicker if it ever happens again. The biggest down side is that my immune system is incredibly weak and will be for the next month and a half, so I have to be super super careful to not get sick. 

The infusion was going to take at least 3 hours, so I decided that I would unpack my sewing stuff.  I was able to cut out all the pieces for the rainbow throw quilt I'm making.  My dad came over to keep me company, and we chatted while I sewed.  It was a few hours before they got the infusion started, and I was able to get half of it done before I got tired and decided it would be better to rest in bed. Peter came over and was with us for some time, then took some of my stuff home and went to pick up one of my discharge medications and feed the pups. The infusion ended about 4:30, but it wasn't until almost 6 that I got my PICC line pulled and got my discharge paperwork. 

We ordered thai food to pick up on the way home, and happened to see two of my friends from work at the place next door. I walked over to say hello as it has been months since I last saw them, and that little bit of normalcy was nice.  Dad came over to the house, we ate, and then we played a board game. We said goodbye as he drove home today. Then I got to go to sleep in my own bed!

I slept pretty well, except Bosun woke us up at 4:30 because he was sick.  We got up and cleaned it up, and somewhat started the day. Peter went to pick up my other discharge med and some chicken (so we could put Bosun on chicken and rice for a few days). I went back to bed for a bit, then got up to start my day.  I was a bit tired, but my heart rate was in the 110's, so that was good. It was a mostly lazy day, and all the pets kept coming and just laying down/relaxing in the room I was in, somewhat near me.  I think we were all relieved that I'm home. I was able to do an instacart order from the couch, and Peter got some things around the house done. We didn't really get a chance to unpack from our trip, so that will be on the to do list in the next few days. I was able to take off the dressings on my neck and arm (where I had the lines) about 6pm, and I finally got to take a real shower, which felt soooo good.

We had a nice homemade dinner, found out a new season came out of one of our favorite shows so watched the first episode, then took the dogs for a quarter mile walk. At one point Stella was walking a little too fast for me and my heart rate got a bit higher than I'd like, but I felt ok once we slowed down. My guess is tomorrow will be more of the same. I definitely see a ton of improvement from before I first went in, and I think there is some from the last few days, but I'm definitely nowhere near full speed yet. I'll continue to try to be patient and slowly do a little more each day - hoping that helps me to heal, but not so much that it sets me back. 

We will definitely keep everyone posted in the coming weeks as we find out more. Next week Monday will be my big appointment with all the tests where we will see how much my heart has improved. So here's hoping for a very healing week. 

Rolling with the (proverbial) punches

I woke up Wednesday after 6 hours of uninterrupted sleep, but I felt exhausted. For the first time since I've been in at Duke, I did not get up and get ready in the morning.  I stayed in bed and had breakfast on my tray, and waited for the team to come in.  They let me know that my clotting factors were too low to do the plasmapheresis today.  I ended up taking a nap at 10:30am and not really waking up until after 2pm. I felt a little more awake but was still really tired. I was given Lasix again and that helped to get off my water weight, which helped my breathing. My dad arrived in Durham and came over in the afternoon.  We had a nice visit, played a board game, and watched a few episodes of a show. 

I was really hoping for a good nights sleep. I had just gotten to bed when they did 11pm vitals.  Then around 12:30 they needed to draw blood for labs. Not a problem usually - except my PICC line would not pull blood off like it should have. The nurse said they would call the PICC team and the lab team, and whoever got here first would do it. I was tired and completely lost it - I'm not even sure why, but I was sobbing uncontrollably because it was just one more thing that was not going right.  It took over an hour and 3 people, but they finally did figure it out and got the labs drawn. By that point it was almost 2am and I was wide awake. I went to sit in the chair, read a book, and just tried to calm down.  Around 4 I was about to try to sleep again when my telemetry box started to beep that it was out of battery. The nurse changed it and got my vitals, and I decided to try to sleep. 

I woke up this morning a little after 8 and was groggy.  I was told that the pharesis folks were coming today, that I would need to get a cryo treatment that gives me back clotting factors, and that I would need IVIG after that. Dad came over fairly early and we hung out as I waited for things to get started. Pharesis did not start until after noon, and it went well. At the end my heart rate was down to 110, which is an improvement. A little while later the team NP let me know that would be my last plasmapheresis and they could take out my neck line (the vascular catheter mentioned a couple posts ago).  Great, right?  Well, instead I just started crying and really confused the team. As I have experience as a therapist, I realized that I was having a trauma response based on my time in the hospital after transplant where it really hurt every time a line came out, and I had to do it all alone. I explained that to the team as best I could, they got me an anti-anxiety med, and Peter rushed over so he could hold my hand. Trauma is weird, because while I logically knew that what was actually happening was a good thing, my body was remembering all the bad feelings from two years ago and making me really emotional. Once we got started it went really quickly to take out the line.

I've had dinner, finished my cryo treatments, and now just am waiting to get my IVIG treatment, which will give my body broad antibodies.  This also tricks my immune system into feeling secure and like it doesn't have to make more right away, which should give time for my immune system to forget it was making the antibody that caused the rejection against my donor heart. The plan is start that tonight around 9pm, and as long as everything goes smoothly, I can go home in the morning.  The doctor is hoping that I will see a good change in my heart rate going back to normal within in the next week or so, and I'll come back on August 1st for follow up tests to see where everything is.  

I'll be excited to be home for more than 12 hours and get to sleep in my own bed. I also miss the pets.  So, today was a long day, and it started a little dicey.  I think that the (proverbial) punches had more to do with my being tired, emotionally labile (thanks high doses of steriods!) and having unexpected trauma responses that aren't based on logic.  Here's hoping I get a good night's sleep, everything goes well overnight, and we can finally go home in the morning after rounds!

Keeping calm

 Yesterday (Monday) was a bit long, as I did not sleep well. I had my plasma pheresis in the morning and then the final rat-g treatment in the afternoon, which led to a much needed 3+ hour nap. Peter was able to be here for part of the day, which was nice. I had a short PT consult, and they just suggested doing sets of laps throughout the day to keep moving. The great news is that since I can do the laps, I don't need to get heparin shots every 8 hours, which I greatly appreciate as I'm really black and blue from all of them. I worked on keeping calm with sewing, and was able to get all my sub-pieces sewn together. 

I got an uninterrupted 6 hours of sleep last night, which helped me feel much better. I was out of bed by 6 (vitals were at 5:30). I did my CHG bath (special antibacterial wipes they give me warm), brushed my teeth, and got ready for the day with new compression socks, underwear, and deodorant. It seems silly, but trying to do something "normal" is helping me to cope. My heart rate was still pretty high, and it went up into the 140's while I was doing my bath and then the 3 laps around the unit.  It did come back down to the 120's, where it had been, afterwards, but I was not sure what to make of it. 

I noticed that my PICC line had some blood seeping around it, and it was really sore. They called in a consult to take a lot. It is working fine, but we did a dressing change to clean it up and it feels much better. Then it was time for my 3rd day of plasma pheresis. The transplant team is wanting to do these 5 days in a row, but the pharesis team says they normally only do 2-3 days in a row and then you need a break. They think the blood around the PICC is because my clotting factors have gotten thrown out with the plasma the last few days. Due to this, I got back some donated plasma today to help even out my body. They took a blood sample to look at, and once it comes back we will know if they are doing two more days in a row, or if I need a day off to get a different med, then the last two days. 

Transplant has started to get me back on the meds I will go home on. They started me on a new med that will (hopefully) help my heart rate come down to a more normal rate. My heart is beating in a normal rhythm, just really fast, which is an indication of the damage. Since they antibodies have been removed and aren't attacking the heart, we are hoping that my heart will start healing and so some improvements. If this medicine works, then once I'm done with the treatments transplant will be comfortable sending me home. If my heart rate stays high, they will want to do a cath to look closer at the heart before I leave. Either way I would have follow up echo and cath/biopsy in 2 weeks to see how my heart is progressing. 

I did a good amount of reading today, and I was able to finish sewing the base of the sewing mat I'm working on! The staff seems really interested in my sewing set up and keep popping in to take a look.  It obviously still needs to be finished, but its a good start. Surprisingly, no one has commented on my little iron (thanks Sarah and Karen), and I'm hiding my rotary cutter except when actively using it.

We decided that Peter would take the dogs to doggy day care and board them tonight, with day care tomorrow as well. We're hoping that will give him some time to recharge too. He was here for hours in the morning/afternoon, and is spending the night and will be here tomorrow. It will be good to get some time together when he doesn't have to rush back to the pups.  My dad is also driving in and will be here tomorrow afternoon. I'm having everyone be super careful, and given my lack of immune system even I will be in a mask with visitors now. One thing the team did tell me is that once I get home, I have to be super careful for at least the next month as I'll be really, really susceptible to infections. 

I think I'm doing a decent job keeping calm between my sewing, listening to music, reading, looking at your photos, and having some phone calls. I'm not always the most patient as a patient, but I'm working on it. I've also unplugged from work and am just focusing my energy on healing.  Here's hoping I can keep that up.  

Treatment and Distraction

 Today went well. I was woken up at 6ish for vitals, and I actually got some sleep so felt awake.  I did a CHG bath (antibacterial wipes that are safe for the lines I have), put on a new gown, and I felt awake.  I took out my cutting mat and some fabric and started working on a sewing mat with pockets for my guild swap in a month. I made some good progress, had breakfast, and then it was just time to wait for the plasmapheresis.

They were planning to come at 9am but had an emergency patient so got to me about 11:45. That worked perfectly with Peter getting there. I wasn't sure what to expect, but it went well. They hooked me up to two tubes through the vascular catheter in my neck - one to take the blood to the machine to filter out the plasma, and another tube with 3 components they put back in - my filtered blood, some albumen which is a plasma substitute, and some calcium to keep my system happy. I responded well so it only took 68 minutes instead of 90-120 because they could run it at a good rate. We were able to eat lunch while it ran, so that was good.

I was a bit tired afterwards, and they needed to start my other treatment really quickly due to a surprisingly short timing window. So, I stayed in bed and let them do the pre-meds and then the rat-g treatment, which ran 6 hours and ended about 9pm.  I even got in a good nap in the middle of that. This worked out perfectly, as it needs 12 hours optimally before we do the next plasma pheresis.

My understanding is that my body is making antibodies that are attacking the heart, so the plasma pheresis is removing most of them, then the rat-g is attacking the cells in my body that would be making more antibodies. The goal is that less antibodies attacking, the more my heart can heal. The downside is that this is going to wipe my immune system down to about 0%, so with visitors (even Peter and maybe even the nurses), I'm going to be wearing a mask in here along with everyone else. 

This is very serious, but my doctors are hopeful. The hardest part is that we just have to be patient and wait, as we won't really know how well it worked until at least the end of the week, and most likely further out. Given this, my plan is to distract myself as much as I can. I was able to start sewing some today, which is a perfect distraction for me. It isn't strenuous, it engages my mind and my hands, and I feel productive. 

I was able to do 9 laps today (3 laps, 3 times! 15 laps around the unit is a mile).  My breathing is good, heart is just working really hard. They put in a PT consult for tomorrow so I can get an idea of how much to try to do each day to not get deconditioned but also not push too hard. 

Thanks to everyone who reached out and sent me lovely videos and pics of kids and dogs. It is nice to see others having fun and have things to look forward to. There most likely won't be much changing each day, just having multiple long treatments, plus possibly having to take a day off every few days to give my body a chance to catch up. We will be keeping you posted!

Roadtrips and Rejection

***This post will be fairly long. If you want to see what is currently going on with my heart but not all the background, feel free to scroll towards the bottom. 

We said a few months ago that we were going to just focus on our "live a long and happy life".  Since then, we have certainly done so. I got EvuSheld, the covid antibody shot, for some protection. We rented a trailer camper and drove out to Colorado starting Memorial Day weekend for our friends Stephanie and Cameron's wedding (where we also saw Tim), stopping in Nashville on the way to visit Tracey, Chris, and their baby girl Frankie. We had some awesome days in Colorado playing in the mountains, then headed towards St. Louis.  We had more than a day in St. Louis, which let us do some work in the morning, visit a museum and the St. Louis arch, and get to have dinner with Mom and Wayne (who we had not seen since 2019!). Then in Chicago we visited all the nieces and nephews, went to see the show Six with Liz (it was fabulous), and celebrated the life of my grandpa Neukirch before heading home.  A couple weeks later, we were still so excited about finally getting chances to see everyone that we haven't been able to over the past couple years that we decided to spend the long weekend of the 4th with more family. We drove up the Saturday before and stopped by Clear Lake in Indiana to see the Elliott family for a quick visit and a dip in the lake, then continued up to Devil's Lake in Michigan to spend the rest of the weekend with Scott, Anna, and their little girl Ellie (who LOVED our puppies). 

I was so nice to be able to be with people, even if it was mostly just outside. With all the traveling I was feeling a little more tired, but I chalked it up to not being able to go to the pool to swim and getting deconditioned. Over the long week I started having some weird symptoms, with my heart rate going up really quick and feeling out of breath.  On Tuesday the 5th we worked the morning in Michigan, then drove to Patty and Jay's place in Ohio with the plan to work from Columbus the rest of the week. That night I started feeling really bad, and we called the transplant team, who coordinated with colleagues in Columbus so I would be seen at The Ohio State University Hospital in transplant clinic on Wednesday morning. 

We got to the appointment, and they were concerned enough to have me admitted to the hospital. At first, they were worried I had a clot in my legs and/or lungs with all our road tripping. That got ruled out, and it turns out I was in rejection, which lead to the heart failure symptoms I was experiencing.  The OSU team started me on the standard treatment for this.  There are two types of rejection - cellular mediated and antibody mediated.  In cellular mediated, the body has an immune response to something, which leads to lots of things in your body that cause inflammation.  If those all go to your heart, it can irritate it and damage it.  Antibody mediated rejection is when your body is making antibodies - which are in your blood to find things that are non-self and tell your body to attack. My biopsy showed cellular rejection so I got 3 days of high IV steroids (the standard dose for this method), my breathing got better, and OSU decided I was stable enough that they could discharge me this past Wednesday contingent on us going right home and seeing my team so they could keep treating me. Peter, myself, and the dogs drove back home on Thursday, and then on Friday (yesterday) we got to clinic at 7:45am to be seen. 

It was a really long clinic day. My doctor was happy with how OSU handled the situation but did not like the way my heart still looked, so based on knowing how I have responded to treatments in the past, he recommended admitting me to the Duke inpatient cardiac unit.  My heart looks a little worse than it did a week and a half ago, which would support the idea that this may be a case of both types of rejection.  My team is taking a very aggressive approach. Friday night I got a vascular catheter, which is like a dialysis catheter, put into my neck that goes down to my heart.  This will let us do phlasmphersis, which will basically run my blood through a machine and filter out the antibodies. The idea is that if the antibodies are attacking my heart, then you get rid of the antibodies to stop the rejection. I will have 5 days of this starting tomorrow (Sunday) morning. Today, I got a PICC line (long IV catheter that goes from the arm into the heart and can handle really harsh medications that need to be delivered as directly as possible to the heart).  I had to get a pre-mediation of Benadryl, Tylenol, and the same high dose steroid from last week to "prep" my body for the heavy hitter, RAT-G, which targets the cells in the body that lead to all the toxic things in cellular immunity. The infusion was 6 hours long and made med sleepy and feel a little "off", but otherwise it was ok. 

So where are we now?  This is definitely serious and not something they want to see, but it does happen at times and most treatments will be able to reverse all the damage and get you back to where you were. It can sometimes take some time to get all the function back.  We are scared but also hopeful. Right now, I'm hoping for distractions so I can't dwell on the what ifs. Feel free to text me fun kiddo and animal pictures. I may not be up for responding to everything, but I still appreciate knowing that people are supporting us. We've had a few people ask, and I'm not allowed to get flowers as the treatments will be wiping out my immune system and I will be very highly susceptible to infections. At least I am allowed visitors, though we will have to be very careful with masking everyone (including me) with visits, as these treatments will completely wipe out my immune system in the process of stopping the rejection. 

In Summary: We traveled a lot and got to see a lot of our amazing and supportive extended family and friends. Unfortunately, I have been in the hospital for the past week and a half unexpectedly due to heart rejection. I expect to be in the hospital for at least a week for my heart to receive treatments, and it could be weeks/months after before I'm back to my "new normal".  Prayers and positive vibes welcome. We will be texting immediate family every day, but otherwise will put updates here. Feel free to reach out to my family or Peter's family for clarifications or questions. 

And the beat keeps going on

 On Tuesday I had a most of the day appointment for my 2 year check up.  The actual appointment did not take too long, but we got labs, had a short visit with the doctor, then headed up to the cath lab. I was going to have a left heart cath to look at my arteries and a biopsy. Turns out we just did the biopsy because my kidneys still aren't "happy" and there was little concern for my arteries, so it was better not to do the procedure with the dye that is processed through the kidneys. 

No rejection, which is awesome. I spoke with one of the doctors on Friday as I'm concerned that my kidneys haven't been happy for this long. He confirmed that the most likely reason for this is one of my immunosuppressant medications. They decided to decrease my dose from 3mg a day to 2mg a day, and I'll get blood work in 3 weeks to see if it is making a difference. If not, we have some other ideas of things. One thing I knew intellectually but didn't really understand before was that the meds you need after transplant often cause other problems. It hasn't been too bad, but its frustrating to have problems that I literally can't do anything about because a medication I need for transplant is causing the other problem. 

In other news, Peter and I are getting close to being done with our house updates. We finally finished the master bathroom (minus some closet doors, and we are really happy to have it done. We have contractors coming on Tuesday to install the new kitchen countertops, and at some point soon our new siding should be installed. We only have a few small projects after that to do and then are feeling good about it. 

While our journey will continue, my hope is that less of it is related to my heart and more to other things we are doing. At least for now, I think this will be our last post. I'm grateful to be doing well 2 years out, and also disappointed that I'm not further along and still so isolated due to covid. I look forward to a time when I can really get out and see what my new heart can do in a way I have not been able to as of yet (as least for extended periods of time). We appreciate y'all supporting us through this journey. 

Happy Heartiversary = Adventure

 What a day.  I started with my normal swim at the gym.  I was running a little late so I only did 8 laps (400 meters) this morning, but I figured that since we were hiking later that was ok. On the way out of the gym I headed to a local coffee shop & croissant place. They have amazing sweet croissants, so I got myself a chai tea latte and a croissant with cinammon flavored whip cream and fresh strawberries, while I got Peter a fancy coffee and a vanilla cream (custardy) croissant.  They were delicious and a great start to the day.  I also grabbed a baguette for the road.

After getting home, Peter and I looked up a bunch of trails and decided on one at Fort Macon, about 3 hours away on the coast. We have never been to the NC coast before and it is a 3.3 mile hike, so it met our criteria. We quickly got together water, rain jackets (just in case), a few snacks, and then grabbed the puppy and got on the road. 

During our drive, I asked Peter to share what he remembered from two years ago. It is interesting that how we remember things, and the level of detail is so different, but it makes sense with how our minds work. For some reason it was comforting to hear it, and Peter has all the notes he took everytime he talked to a nurse when I was inpatient those two weeks, which I may look over again later. We also took the time to just talk, about anything and everything, and it was really nice to have the uninterrupted time to just connect.

We had a good drive out, and then we arrived at Fort Macon. We scoped out  the trail, which is a 3.3 mile loop. Part of the trail is in a cool tree area, and the rest in amidst the sand dunes with the sound of the ocean not too far away. It was definitely a new experience in terms of terrain and sights. 

The hike went well, except when we realized at about the 2.8 mile mark that my phone was no longer in my pocket. Peter and Bosun ran back up the trail, and it turns out a nice couple had found it at mile 2.1 (where we had stopped to give Bosun some water) and were bringing it to the visitor center. We got it back, and it added about .2 miles to my hike and .5 to Peter's. I figured it was appropriate to take a photo at the last mile marker, 3.2, to show that I had done it all. 

At the end, we went to the car to get more water, then decided to go walk on the beach. We realized it was Bo's first time on a sand beach, and that neither of us goes to sand beaches much. We had a nice time walking on the wet sand, and eventually realized we should go get food and head home before the storm that was expected came in.  We stopped at a caribean seafood restaurant and got a quick bite to eat. The nice part of being in a tourist place on the off season, plus on a random wednesday, is that it was not busy. Bosun was captivated by the people playing beach volleyball near the restaurant, and afterwards had to investigate before we made our way home. 

All in all, I think this was a fantastic way to celebrate my heartiversary. I did two physical things that my old heart would not have been able to handle two years ago (swimming plus hiking), we also explored a new part of North Carolina, and we got to spend time together. Now, I'm exhausted and will turn in early so I can make my 6:55am swim tomorrow morning. I know I probably won't be able to take this day off every year, but it seemed right to do it this year. Peter, Liz, Brad and I had talked about how, on my 1 year heartiversary, we were going to take an international trip.  Obviously that didn't happen, mostly due to covid.  Maybe next year we will finally be able to do that. 

I am too tired tonight, but tomorrow I am going to write a letter to the donor family with an update. They didn't respond to the first one, and I don't expect them to respond now, but I do want them to know what good the gift their loved one gave has enabled to happen. I'm hoping it can bring them some comfort to know that heart is beating strong, being taken care of, and is changing my life for the better. 

2 years eve

Two years ago tonight (by the time you read this, yesterday) was one of the worst nights sleep I have ever gotten. In the week after I had been out of the ICU and back on the floor and on the transplant list, things kept getting harder. We kept things upbeat, but both Peter and I were really scared. I was physically feeling a lot worse and leaving the hospital was not an option anymore until I got a new heart. Due to covid and all the unknowns, the visitor restrictions kept getting more strict. My dad and Lupe had went back to Chicago since only one person was allowed a day, and it was becoming clear that I couldn't let anyone come back after transplant because of covid. 

The worst part was that I knew they were putting a total visitor ban in place the next day. Peter had been my rock through all of this, even if it was just him coming and doing work in my hospital room, it helped me to feel like myself. I had been trying to figure out how I would deal with with them telling me they found a heart and be in the hospital alone without him. Luckily (in some ways), that evening they told me that they found a heart and the surgery would happen the next day. 

Guys, I lost it. I was both hopeful but also terrified. Waking up from the dry run was one of the most devastating moments of my life, and I knew that I could not do that alone. We started asking how we could make sure that Peter could stay until he at least knew that it was not a dry run. I couldn't sleep. I was so worked up I gave myself a fever, which was problematic as they wouldn't do the transplant if I had a fever. Peter had to get in the bed and curl up with me for me to calm down enough, crying myself to sleep in his arms. 

The nurses saw what was happening and decided they would break protocol by letting him leave my things in the room on the floor, so he would have to go back there.  The plan was that, if needed, he could go back to that room if there was a dry run and they were going to find a way for me to see him when I woke up. 

We got up really early after pretty much no sleep, but at least were still together. Peter stayed with me as we were waiting for them to get me to take me to the OR, and it was eerily quiet, with almost no staff, as all elective surgeries and most non-emergency surgeries had been canceled. We quietly talked, the held hands, we tried not to cry too much. It was such a different place from where I was 2 weeks prior before the dry run. At that point I was hopeful and excited and could not wait to get in there. Given everything that had happened in the previous two weeks, I was a mess. I was hopeful, but also remember just pryaing over and over that it would not be a dry run again. I also kept trying not to think about being alone when I woke up, and knowing that either way, if I got the new heart or had to wait longer, I was going to be on my own in the hospital for a long period of time. That it would be the first time in my entire 37 years that I would ever not have anyone with me in the hospital for more than a day. We didn't even post anything on social media until we were sure it was happening because we were worried we would jinx it, and knew that neither of us had the emotional energy to deal with it if that happened. 

I'm glad I can look back and see that it did work out, but that night I didn't know what was going to happen and I can't even describe what that was like. The juxtaposition to this year is stark.  Tonight, we went to our intro to agility class with Bosun, and I was running around with him outside. Still wearing a mask to be extra careful, but being able to run without getting winded. 

I'm not sure why things are hitting me harder this year. Maybe I'm just further out from everything, so I can actually process things more. I decided a few weeks ago that I was going to take off my 2nd heartiversary. Peter got the ok to take off too, and tomorrow we are going to go on an adventure. I'm not sure exactly what it will be, but we know we are going to do things I couldn't two years ago, like take a big hike, and we are going to explore somewhere in NC we haven't yet. 

They say that you can't really appreciate the good unless you have the bad to compare it to. While some of the time I wish the bad had not had to happen, it definitely makes the good now even sweeter. I'm excited to see what the next year brings. My 2 year check-up in on April 5th, which just happens to be the 2 year anniversary (I think, or off by 1 day) of when I was discharged and got to go home from the hospital. 

I will probably keep posting about those two weeks after and give you all an update once I have my 2 year appointment. And then, after that, I will most likely move the focus to fulling step 7, which is to  live a long and happy life. 

Covid isolation

 Before you worry too much, no, I don't have covid, and no, I was not exposed.  Two years ago, due to having a fever and issues with keeping my oxygen up, I was one of the first Duke patients to go into covid isolation despite my team not thinking I had it. Now that I'm not out of it, and can look  back, that was a crazy time. 

Growing up, I loved the book "the hot zone" and watched the movie, fascinated with the isolation and how the researchers and doctors had to suit up to go in. I thought I would want to study viruses because it was so cool. Later, after I started actually working with bacteria, I realized that was more my interest.  But learning in grad school the info about how infections happen, how they spread, and how to protect yourself, I remember feeling really safe at Duke.  I wasn't happy to go into covid isolation, and they did not handle it in the best way, but I remember thinking that even though I did not have covid, I felt safer to know that if anyone else in the hospital did, they would also be isolated. 

Granted, the intrigue at the process, watching the nurse and doctors gowning up in the negative pressure room, feeling like I was in a fishbowl, did get old after not too long. I was really lucky to actually work at the hospital and have friends who also knew the rules, so we could figure out a way to get me phone numbers so I wouldn't be so bored. 

I was also really worried about not being on the transplant list and what that would mean overall for the timing, and was itching to get to see Peter again. I don't think we told you how it went for us to get out of isolation. 

I went in on a wednesday afternoon that I was moved up to the ICU for isolation, and I think the team scared my dad and Peter as there were all of a sudden a bunch of people in the hallway outside my door, including people in suits (which means adminstrators).  As the morning progressed, they kept putting different contact precautions on my door, and even made dad and Peter put on masks (and maybe gowns, I can't remember)

Then they told us about going upstairs, but it was pretty hush hush.  They gave Peter the bags, including the one that was supposed to come with me with my phone, and walked me to the ICU.  It was so quiet, since I was mostly alone in the room. I luckily started feeling better Thursday and Friday.  On Friday we got the news that even though I was feeling better, I needed a negative covid test. The state lab could not run my sample, so they sent it somewhere else.  On saturday in the early evening, we were told we would get the results. As soon as the negative result came in, Peter immediately drove over.  The nurse had opened my isolation doors and I was expecting to be moved that night. 

Peter got to my room, and a few minutes later the nurse came to let me know that there was some grumbilng because my test was a "presumptive negative" since it was not an fda approved test, and some of hte doctors wanted to put me back in isolation until I had an approved negative result. Mind you, I don't think there really were fda approved tests at that point, and if there were they were few and far between. I decided that I was done with being cooperative, and I called my heart failure doc on his cell phone to tell him the situation. He let me know he would handle it.  

The transplant team was able to talk them down, and we were told that since it was so late (after 10 at this point), that Peter could stay over and we would be moved on Sunday morning. Looking back, I can see the humor in some of this, but it was definitely not as humorous at the time. 

I'm thankful that this happened right at the beginning, before there started being a bunch of actual covid cases at the hospital. Hopefully they were able to learn some things in terms of gettting in and out of the rooms. I never thought that 2 years later, there would still be patients with covid in the ICU's or us having to worry about going into covid isolation or quarantine. It's definitely been an eventful two years!

2 years ago the world stopped

 I know it's been a long time since I last posted.  Almost a year.  A lot has happened in that time, and it also seems like nothing much has happened. Since about Valentine's day, I've been feeling contemplative.  I think that after my 2 year heartiversary I may retire the blog to "live a long happy life" (at least related to heart stuff, maybe at some point I'll decide to blog about something else), so I wanted to give some updates now.

Over the past month or so, I have been re-reading the blog and thinking about 2 years ago. On my birthday last week, it really hit me that two years ago, I had just been listed, and we had no idea what was going to happen. This last week I've had a the memories of 2 years ago going through my mind in the background.  Yesterday two years ago (based on day of the week), I got the call that they had a heart and went into the hospital so they could have me ready for the morning. We were so excited... nervous, but overall excited and hopeful. 

Of course, now I know that it was going to be a dry run. Waking up without having a new heart was one of the most traumatic things I've ever experienced. It still hits me hard, and at the same time I believe the doctor did the right thing not giving me that heart. From my personal experience and in my work, these last two years have really made me realize how traumatic life can be, and that sometimes what you need to help you can hurt. 

This is also the day, 2 years ago, that Duke closed their outpatient clinics because no one knew what was going on with covid. So in a lot of ways, it is the 2 year anniversary of when the world stopped (at least for awhile). Part of me can't believe that we are still dealing with Covid and the extent to which this became a problem. The other part of me is still really uncomfortable with the idea that this is just going to be the new "normal." I'm still now totally sure how many of these cautionary measures I'm going to need to continue into the future considering my continued immunosuppression.

It seems appropos that this evening, I made a presentation about how to modify traditional in-person programming to virtual settings. I can't stop myself from thinking about how things would have been different if my transplant didn't happen in the middle of a pandemic.

Thank you for your continued support as I continue to grow stronger. I do keep seeing gains, even if they are smaller than they were at first, and it's definitely been cool to realize things I never knew - like that being out in the cold does not mean that I have to be freezing, that I don't always have cold feet, and other little experiences that a fully functioning heart has given me. It has certainly been a wild ride.

Home sweet home

Today is the one year anniversary of my coming home from the hospital. At the time. I was over the moon happy to get out of the hospital and see Peter. It never crossed my mind that a year later I would mostly only be home with Peter.

While it’s been an incredible year in some ways, it also feels anticlimactic. I don’t know exactly where I thought I’d be a year later, but stuck at home in the middle of a pandemic was nowhere on the list. So many of the ways I thought I would measure my progress, like being able to do normal tasks easier, I haven’t been able to measure since I’m home instead of going out to work and other normal things.

In 2008, a year after my valve replacement, we had a party where my friends and I rented out a bounce house facility that also had sumo suits. It was, as Mickey called, my “yay, Jodie’s not dead” party. I guess I figured there would be some celebration to mark one year this time. We had initially talked with Liz and Brad about going to Europe for a week to celebrate after transplant. And because of covid, it got in the way. That’s not saying we can’t celebrate Big next year, but it just doesn’t feel as momentous.

I got my COVID antibody test results back, and it’s negative. The test is too new to know what that means - is it because it was so long after the vaccine? Did my immune system not respond at all? Peter had his dose 2 yesterday, which makes me even more disappointed in my results. We were planning to expand our social circle a little, and now it’s unclear if we do that, even with vaccinated people, if it’s safe. 

This doesn’t mean I’m not grateful for everything that has happened. I had no rejection in my biopsy and my vessels looked great. I just wish things could start going more back to normal for me. With this result, I’m questioning if I should make any changes and if I can do more.

I hope you all are able to get your vaccine soon. And I look forward to when I won’t have to always wear a mask around others.