BACKGROUND

As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.

In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.


WHY DID WE START THIS BLOG?

Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.

We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.

Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.

Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.

God bless,
Jodie & Peter Elliott

Thursday, January 28, 2021

Kidneys and swimming

While my 10 month appointment was good overall, my lab levels for my kidneys continue to be concerning. This time one of the values was double what it looked like 2 months ago, and it was already almost double what it should be. My team told me to drink a lot more water and stop a few meds to make my kidneys happy, and to get labs re-tested in a week. The number went down significantly but is still higher than before and a little more than double the normal amount. I bought a 75oz water bottle, which is HUGE. After a few days, I think its too much water. After sending in a message to my doctors, they said to shoot for 64 oz. Peter and I started looking up foods that make your kidneys happy versus work hard. We are going to plan to incorporate more of the good foods into our meal plan the coming weeks. In a lot of my looking for information, one thing stands out - when you aren't active enough, it can lead to unhappy kidneys. On the labs, I also noticed that my triglycerides were up, which is also linked to not being active/being overweight. I still have 20+ lbs since transplant, and while I've tried some things, not much has stuck like it needs to. 

I started thinking about how, pre-transplant, the one thing that I could always make myself do was swim laps. UNC has a wellness center that is 10 minutes from us with a pool, and you can book lanes for 30 or 45 minutes. If you are doing laps you can have your mask off, but if you are walking in the pool you have to keep it on. Peter and I decided to join, because I need to move more. One of the things stopping me is that my joints hurt due to the extra weight. I think this will be great, because I have to book a time, and if I no show we owe them more money. It is going to be great for accountability. We were hoping to start on Tuesday, but they had to get a medical form from my doctors first. That came in yesterday, so tonight both Peter and I went swimming. We each had to reserve our own lane, and the times were staggered but had some overlap. 

 I swam! I got into the pool with my mask on, did 3 "laps" consisting of going as far as I could before my mask would get wet (2/3 length of the pool or more), then did some standing pushups off the wall, leg lifts like I used to pre-transplant, and then I did a lap (sans mask). I made it to the other side and was pretty out of breath, so waited a little, then got back to the other side. I put my mask back on since I realized that I'm not really in lap shape yet. Instead, I decided to walk in the lane for as long as I could. I did a few walking laps, then did some leg lifts, more push ups, and more walking laps. I decided to try another real lap, and got to the point of where it gets deep. I was getting tired, so decided it was best to turn around. Good thing too, as I ended up walking most of the way back because I was tired. I did some more leg lifts, then one more walking lap before I called it good. In total, I was in the pool for about 20-25 minutes. 

I get my second dose of the covid vaccine tomorrow. I think that is part of what is making me feel more comfortable with the swimming. There are at most another 6 people in the pool area unmasked, but chlorine can kill the virus and the gyms have been doing this awhile without people getting infected at high rates. Since I am not in shape enough for laps yet, this will be great to get in water aerobics and water walking as I build my strength, and I'll be masked while I do it. I'm planning to make 3 appointments a week so I get it in. Hopefully that plus puppy, and walking around the house more when my fitbit buzzes during the day, will help with weight and lab values. My fitbit suggests 250 steps an hour and if I do two "laps" from one end of the house to the other, I can get that in easily.

Friday, January 22, 2021

10 months post transplant, vaccine dose 1, and puppy!

I got dose 1 of the covid vaccine a few weeks ago. Initially, I got a headache afterwards that wasn't too bad, and my arm hurt from the shot. Day two, my arm continued to hurt, I still had a headache so I took some tylenol, and the lymph nodes in my neck were a little swollen, and I was tired so needed a nap after work. By day 3, I felt fine. I'm actually happy I was a little out of it the next day.. maybe my immune system is working! 

We had a video appointment with maternal/fetal medicine the following Friday, as the transplant team had made the comment that I might be able to safely carry a pregnancy now, and we both wanted to better understand the risks. The team was very open that if I got pregnant they would be happy to see me, but that they would not recommend it given a number of risks, both to me and to a baby. We weren't completely surprised, and to be honest, it was relieving to actually have an answer. We are looking into genetic testing to see if my congenital heart condition was genetic, and if so, to see if I were to extract eggs if we can test for it. Peter and I will have some decisions to make down the line, but at least we have a better idea about viable options now. 

The next week, this past Tuesday, I went into clinic for my 10 month follow up and biopsy. The hospital was oddly quiet - I don't know if they are booking less in person appointments, if people are being more careful, or what, but it was quieter than normal. We got in, I got my blood work done, and then waited awhile to see someone. The team was happy to hear that things have been going well, and were interested in what the maternal/fetal folks had to say. The team was open to the idea of me getting a covid antibody test a few weeks after I get the second dose of the vaccine to see if I did build up immunity. There was no sign of rejection, which is great. My next visit will be at 1 year and will be a catheterization. They did a new type of blood test, and will compare that to my biopsy results. After the next appointment, going forward, I'll be seen every 3 months and they will do the blood test. As long as that looks good, no more biopsies! I was pretty excited about that, as they are not very pleasant. The doctor took off two of my medications (yay!), so I think I'm almost at the point that I'm on the meds I will be on long term. I have 2 immunosuppressants, 2 blood pressure meds, 2 other heart related meds, one to help with GI issues, an antiviral, calcium, and a mood/sleep medication. Not too bad! 

Afterwards, I was able to set up the appointment for my second vaccine dose for next Friday, the 29th. Since some of my friends had a really good immune response to the vaccine that led to them not feeling great for a day or two, I decided it was better to do it on a Friday just in case. If I have a strong reaction it means my immune system is working well, and I'll actually be pretty pleased. 

Other exciting news is that my intern at work, who was with me for 18 months and ended with us/graduated in December, just accepted a position with our team! I'm super proud of her, and excited that she gets to keep working with us (and that she is already fully trained!) 

Wednesday I was happy that my work schedule was flexible enough that I could watch the inauguration. I was so proud to see Biden up there and hear him speak about his plans. I teared up seeing a WOMAN being sworn in as the VP. To me, it feels like I can hope again, and I'm already impressed with some of the actions that have been taken to get covid under control. 

We keep getting weekly pictures of Bosun, and he is a cutey. His facial coloring, right now, is somewhat similar to Stella's, and he has a little white tip on his tail like her as well. Apparently Australian Shepards sometimes have two different color eyes, and the breeder thinks that Bosun may end up with one blue eye, and one that is green or brown. She also said that Bosun is the largest of the litter, weighing in at 4.8lbs at 4 weeks old , and that her daughter is "in love" with Bosun because he comes running to her whenever she comes into the room. Looks like ee might be getting a pre-spoiled puppy that wants attention... We can't wait! He is already a charming little guy. 


We started making our plans to come get him. We decided that we will drive up to Deer Isle with Stella, and then go pick him up (about an hour from the island). We are going to spend the week in Patty and Jay's new (to them) cottage on Deer Isle, and get a proper peaceful vacation! We are really excited. We are going to take a few days to drive home with the puppy, so if you think you are on our route and want to do an outdoor socially distanced short visit to see us/meet the puppy, let us know! I hope you all are doing well. 

Covid is running rampant, and there are some new, more infectious variants popping up in different places around the world. Please, please be careful and wear a good mask. If its fabric, triple layer is best. Part of the protection comes from how well it seals, so if you look down and can see between the mask and your skin easily, you may want to find a snugger mask. There is going to be progress, but its going to take a while.

Monday, January 11, 2021

Vaccines

I got word from my transplant team last week that they are approving anyone who is on maintenance doses of immunosuppression (which I am) to get the covid vaccine when their turn in line comes. Because I am a mental health provider at Duke, they consider that front line, and I am in the 1a category. I was able to go onto the portal and schedule my first covid vaccine for tomorrow morning! 

I am so excited that I get to take it this soon, but am also not necessarily expecting that I will get the full 95% efficacy given how my immune system works. I'm going to give a brief, simplified version of an immune response below to explain why. 

It's good to know that there is an innate immune system, which is kind of like the front line of an army and heavily hits pathogens, and then there is an adaptive immune system that recognizes things as self versus non-self, and once it's identified something as non-self, can then later attack it with precision, like a targeted hit. Normally, when you get a vaccine or are infected with something new, a macrophage, one of the types of innate immune cells, 'eats' it, breaks it down, and then displays the new weird proteins to a T-cell. In the covid vaccine I'll get, mRNA for the covid spike protein will be injected, my cell will take it in, and then it will read the mRNA to make the protein (since that is what happens normally when mRNA is in a cell). It doesn't get into the nucleus so can't change your DNA, and the mRNA will only last a few hours. The spike protein is part of the virus, but not the whole thing, so you can't get infected from the vaccine. The tcell the does two things. It activates the B-cells to recognize the proten as non-self. Antibodies are made to find this protein in the rest of your body, which then attach to the protein/infection so that macrophages know to come eat it. These antibodies also go into your memory cells, so that next time you're infected you recognize it right away and can make antibodies more quickly. The other thing that happens is that the Killer T cells inject things into the infected cells that make it burst, killing the cell and stopping the infection/protein. Macrophages then clean it up. When these cells burst, it can cause inflammation, fever, achiness, etc. So when people say they get sick after a vaccine, its actually your immune system doing what it is supposed to, and the stronger your side effects, the more you know it did its job.  
So when I got the transplant, this same process would make my body recognize my new heart as non-self. Because of that, I've been on immunosuppressants, and will be for the rest of my life. The two medications I'm on stop my body from having a robust response to my new heart. 

Unfortunately, it also means that the medications will also have this effect for vaccines. That doesn't mean it won't work, but I probably won't get as strong of a response. So even once I'm vaccinated, I won't know how well it worked and will need to keep being very careful. 

With everything happening in our country last week, I have been really holding onto hope. I hope that we can start hearing more of the truth from our politicians and that they are able to calm the masses. I hope that with the new adminstration, we get covid under control. I hope that the domestic terrorists who broke into the Capitol and caused terror and destruction are held accountable, and that our country really takes a deep look inward to understand how this has built up over the last 4 years, and finally do things to address it. I hope that we get back to a place where we value science and actual experts, and where we are humble enough to know that our opinion after a google search is not as valid as that of someone who has studied a subject for years. 

I'll keep you posted on how I'm doing post vaccine, both 1 and 2. I have a fair number of friends who have already gotten it, since they are in the medical field, and it will be interesting to see how similar or different my reaction is.

Thursday, January 7, 2021

Happy New Year

Happy New Year everyone! I hope that, thus far, 2021 has brought you hope. It has been fairly calm down here in Durham, with some cold weather but also some gorgoeus days. We have gotten out to do some walks/hikes, which is great. We spent New Years with each other, making food, eating, playing board games. We made it up to midnight and then were asleep soon after. We have enjoyed getting new pictures of the puppy, and they even took a video the other day where we got to see our little guy crawling all over his siblings. 
After years of talking about it, we FINALLY got it together to make a holiday card. Its a New Years Card and they should arrive this week, so hopefully I can get them out within the week after that. Who knew our list was so long! We got a great photo of us on our hike with Urosh, Kristi and the girls a few days after Christmas, and it helped things fall into place. 
I got notification that, due to my job, I'm eligible for the covid vaccine now! I reached out to my transplant team, and they asked that I wait until after my next appointment for us to discuss it first. My guess is that, because of my immunosuppression, they want to make sure that it is safe for me and to make sure that I am far enough out that I have enough of an immune system to create the immune response needed for the vaccine to be effective. If I had not had transplant yet, I would absolutely be taking it (or already would have). When you get notice that they have one for you, please take it. Not today, but at some point I may review the vaccine science. Its been fun to look over that, since I used to study this type of thing, and I do have a ton of trust in the science from what I've seen. 
Here's hoping for a brighter 2021. There is light coming in the future, but we still all need to stay vigilant. We can do this!

One month post transplant!

Wow.  It is almost unbelievable that it has been one month since the transplant.  So much has happened, with two weeks in the hospital, and ...