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

Sunday, February 21, 2021

To Maine

Wednesday morning we got up early, finished packing the car, and got on the road around 930. We had to stop to do a small adjustment to the roof rack, but otherwise it was pretty clear. The drive was smooth though DC, when we hit traffic. We continued on and hit traffic again by NYC. With our few stops to grab food and gas, we got the the Airbnb around 930. It was supposed to be a 9 hour drive, so this was later than expected, but ok. Went through 6 states today, but were in 8 total.
https://drive.google.com/uc?export=view&id=1jR7-OBEZ-k9atFYeQ9pHfRxrNFc0c88W
While driving through NYC, there were signs about snow for today and to avoid travel. When we checked, it liked like it would hit new haven around 7am, and Boston around noon, but north of NH we would be ok. We successfully got on the road by 7am, and we were off! Had an easy drive and got to Patty and Jays Maine house around 2. We love it! Had some time to settle in and a good night. We were in 4 states today, so went through 11 total in the trip (NC, VA, DC, MD, DE, NJ, NY, CT, MA, NH, and ME)

Friday we spent time with Stella in the morning, then picked up Bosun! 
https://drive.google.com/uc?export=view&id=1uSyhyKoOv0bWXmixJrbwb1IFpGGt7alvhttps://drive.google.com/uc?export=view&id=1eECgXhNl1SI8K9sx0VTZvla4j0VksDVD

Stella was not quite sure, but interested. Bosun just wanted to play with his new big sister. We kept a close eye all night, and Bosun did ok in his crate but there was some crying. We got up at 330 Saturday when we decided 5 hours for the first night wasn’t bad. Stella was more open to Bosun in the morning, and they have had some sweet moments, like this 
https://drive.google.com/uc?export=view&id=1xaTAYrRd-HVlRQf6J1MRPMkV2iFz3_NP
Bosun played in the snow for the first time and learned to walk on a leash. we have a ton of cute photos and some videos too! We are lucky that he is eating fine and even knows how to use a puppy pad already!
https://drive.google.com/uc?export=view&id=1RhseIeCV3tRe8cZRz8L7zn41QnQGDbqr
This morning Stella and Bosun figured out his to play with each other, and it was adorable. We are in love with this little guy. He did better in his crate last night too!https://drive.google.com/uc?export=view&id=1cVOKI0lZs_MA5s-srHicRY4aiXSsXBfN

Tuesday, February 16, 2021

Happy heart day

Forgot to post this the other day - we are heading out in the morning to pick up to get puppy!

 I’ve started to be contemplative. A year ago we started the blog as a way to keep everyone informed about what was going on with the transplant process. It has become a place to reflect, advocate, and share.

I’m definitely feeling thoughtful about this, and expect I will going forward. I was talking to a cardiac nurse and the dcd study is over. If I was needing my heart now, I would most likely have to wait a whole lot longer.

Yesterday I woke up with pain in my ear and a sore throat. I assumed it was related to swimming, and we called the on call nurse who said to go to urgent care. It wasn’t strep, and my ears looked ok, but they gave me antibiotic ear drops and said to use Flonase. The ear is a little better today, but throat was really raw this morning. They aren’t worried for COVID, but hoping this feels better tomorrow since we leave wed morning. 

Today my goal is to be productive so we can finish puppy proofing the house, put away laundry, and start packing. Snowy Maine, we can’t wait to be there and meet our puppy!

Sunday, February 7, 2021

Revelations

 It has been a busy week.  We got our first SunBasket, and so far are really liking it.  We had a morrocan chicken dish the first night that had great flavor, a fire roasted tomato shrimp with polenta dish the second, and a belizian chicken stew over coconut rice the third.  We had planned to make our fourth dish on Thursday, but didn't have an oven to cook it with. 


I think I mentioned that after Thanksgiving our dishwasher broke.  We needed to replace it quick, and had already been thinking about replacing our fridge.  It ended up being much more economical to switch from white to stainless steel for everything.  Peter installed the dishwasher after buying it in store, and we had the fridge and microwave delivered last week.  The oven was dented, so they instead delivered it Thursday . . . but had installation for Saturday.  This derailed our plans a little, but we made it work.  The new oven is great, and we enjoyed our vegetarian dish of quinoa with chickpeas, carrots, and onions.  Price wise 4 meals for the two of us is about comparable to two meals of take out, so although it is a little more than what we usually spend in groceries, we are finding it much easier to cook when there is a set plan and recipe already.  Plus, the meal plan we chose has meals that all come out to 600 calories, so it is helping with our portions. 


I've gotten to the pool 3 times this week, which is exciting.  I've done a mix of walking with exercises at the end and swimming.  Back stroke seems to be the best stroke for me thus far.  I had a revelation today.  I had finished the length of the lane, and was catching my breathe at the end.  My breathing was heavy and my heart was pumping, so my immediate thought was I better not push it.  I realized that this thought was born out of 12 years of living in heart failure.  It used to be unsafe for me to push myself, and in some ways I think I've developed an aversion to actual exercise that pushes my limits.  Thinking on it, the few times I have had to keep pushing since transplant, on two hikes that were longer and/or more elevation than expected, I did just fine.  And I was not wiped out the next day.  I made myself keep swimming, and I was a little tired.  But I don't really remember that this is an ok feeling.  It has been over a decade since I could work to feeling out of breathe and tired and not have some negative consequence later.  I think part of my problem with not having lost weight is that I've been going way too easy on myself.  I was using that I was healing as a reason, but its been over 10 months.  I keep falling back on old thought patterns that aren't true anymore.  So I'm going to have to start pushing.  Which is terrifying in a lot of ways.  But also, I still weigh 30lbs more than I should, my labs are starting to reflect that I'm overweight, I'm getting stretch marks, and I'm uncomfortable.  If I don't do something now, when will I?  Yes, my knees hurt and sometimes its hard to move.  But the less I move, the worse it gets.  I am going to have to work through the discomfort. 


I've decided that at my one year appointment, if I'm not seeing a difference from my swimming, I'm going to ask for another referral to cardiac rehab and try a different facility.  I'm also getting an antibody test within the next few weeks, and if I have them, it means the vaccine works and I'm protected, so I would feel much more comfortable about what I'm doing.  I also figure that I'm going to need to up my exercise days to more than 3, but if having the puppy makes me take Bosun on walks with Stella and Peter, than I'd be increasing my steps and that could be enough. Very much looking forward to meeting our little guy.  He went to the vet this week and the vet mentioned how fearless and friendly he is.  Looks like we picked a great one!

Monday, February 1, 2021

Dose 2 and good food

 I got my dose 2 of the covid vaccine on Friday.  Other than arm pain, I was feeling ok.  I went to bed early, as I was a bit tired (most likely from my swim the night before), and as I laid down I got a headache.  My temperature was elevated at 99.7, but it has been that high before when I'm just normal, so wasn't sure if I should attribute it to the vaccine.  I was trying not to take tylenol, but ended up being up all night.  Between the throbbing headache and having to get up to go to the bathroom due to drinking so much water in a day, it was a long night.  Peter got up at his usual 5:00am and got me tylenol, after which my headache finally calmed down.  I turned off my alarm to sleep in. Peter brought me my 9am pills, but otherwise I slept in until 11am. 

When I got up I felt pretty normal.  My arm still hurt, but otherwise fine.  I was actually a bit disappointed, as I was hoping for more of a known immune response.  That isn't to say that my immune system didn't do anything, but I won't know without an antibody test. 

Saturday I spent sewing.  My old big sewing machine has been having issues for years, and I finally realized that instead of enjoying my hobby and stress reliever, it was causing more stress and making it not fun to sew.  I was able to find a really good mechanical quilting machine that doesn't have any bells and whistles.  It took some getting used to, but I LOVE this machine now.  Once I figured out how to not break the thread, it is making sewing the quilt together a breeze.  This is actually the part of quilting I like the least, as it normally is really hard to wrangle that much fabric through a machine.  This one makes it simple, and was so much more enjoyable. 

I'm 95% done with Liz and Brad's wedding quilt.  As soon as that is done, I'd like to pin Peter and my honeymoon quilt and get it done.  Stephanie and I are taking a mystery quilting class that is 6 weeks long, and I'm already behind 2 weeks, so I'm using finishing these other two quilts as the carrot at the end of my stick to motivate me to finish these projects.  It will be nice to have those done and then get to focus on the lessons, which are great to watch and will be teaching me a bunch of new skills.  I already learned how to sew polygons and do Y seams so they lay flat.  I don't think I've ever used more than a 4 sided polygon in a quilt design because I've thought they would be really annoying they aren't really.  I'll also be learning to do curved seams and some intricate piecing.  I'm excited. 

Sunday I had booked a morning swim.  After my first swim last week, and realizing that my bathing suit barely fit, I bought a new one that is the right size and has shorts at the bottom.  Much more comfortable. I also got some booties to wear as I do my water laps, and an aquatic dumbell to bring with my.  For now, I can only really do one lap swimming, which is ok.  My plan is to use up my full 30 minutes regardless.  So I will do a walking lap, then at the end do some type of water aerobic.  I have 7-8 exercises I can do, so if I do one at the end of each lap, ideally I can get faster to where I can do 15-16 laps.  Of course, a few of the exercises work better in the deeper water (the ones with the dumbell, so maybe less.  I got in 14 walking laps and 1 full swimming lap.  I like to swim under water and then do a pretty involved stroke (not sure that it is an official one, but its basically the same stroke I do underwater).  I may try a simple standard freestyle stroke and see how I do with that next time.  Since I'm allowed to book up to a week in the future, I was able to book 3 times for next week.  I'm enjoying this so far, and the water walking is much easier on my knees. 

I've been making more of an effort to move during the day, and I did a few house laps when my fitbit buzzed.  Peter and I decided to try one of the meal delivery services and decided to try SunBasket.  We got our first box today, and made  a chicken tangine for dinner that was delicious!  We have 3 more meals for this week, so we will see what we think and if we want to continue next week.  We are finding that neither of minds cooking, but its often that we don't have together what we need to cook.  This was fairly easy to do, took about 30 minutes, and we picked meals that are all right around the same amount of calories, so we can better plan our days.  

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 ...