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!