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.

Happy 1st Heartiversary

Jodie: My transplant was on a Monday last year. Tuesday is my clinic day, not  because it has to be, but because it’s the day that has worked best for us. When it was time to schedule my 1 year follow up, since the 23rd landed on a Tuesday, I decided it was somewhat appropriate to have the appointment exactly a year later.

Peter: This past year has been a long one. It’s amazing what can happen in a year, and we’re so blessed to have made it to this milestone in Jodie’s recovery. She has been so strong and has improved so much. 

Jodie: We have both been contemplative the last few weeks. Sunday was hard, realizing that if we were going by days of the week, it was one of our hardest days. Yesterday was even tougher, being the actual anniversary of the night before. We both worked, took Bosun to puppy class, and on the way home reflected. Neither of us slept much that night a year ago. I had every worst case scenario running through my mind, and was terrified I’d never wake up. And knew if I did I’d have to be all alone in the hospital.

Peter: Last year today was rough... I had stayed up all night waiting with Jodie before she was taken back to surgery, got a couple hours of fitful sleep in the waiting area, and waited around all day until receiving news. The nurses and staff were kind enough to help us stretch some of the ‘new’ COVID restrictions and rules, since we knew that once she made it through surgery, due to the  restrictions I could not be there when she woke up in with her new heart.

Jodie: With all the memories heavy on our minds, it’s also made the reality of today a little sweeter. We found a pet sitter for Bosun and dropped him off on our way a little after 7am. We parked near the main hospital entrance and walked in, just like last year on March 7th. I thought it made sense to take the same picture going in.

Walking through the halls and getting to clinic, there are so many memories. Once we got to clinic, it turns out that the same doctor who did my first clinic visit post-transplant was there today. We had a good check in, and decided that I have 6 months to try to get my weight more under control before we try anything else. Then I got an X-ray, and we made our way over to the cath lab. On the way this sign caught my eye, with the tag line “a year like no other.” I couldn’t help taking a photo with it.

Peter: After over a year of going back and forth from the hospital for Jodie, I would have hoped some of it would become routine... Instead it feels like I'm regressing, getting flashbacks to days spent fretting and worrying and praying - alone in the waiting rooms. Days where I spent every second waiting for a text or call with an update. Today was especially difficult, feeling refective about a year ago bleeding over to my feelings now. I was so anxious, and felt so overwhelmed. I'm so glad that I have Jodie to keep me levelheaded. I'm so blessed to have her in my life.

Jodie: If I’m being honest, it wasn’t much easier for me. We got to the cath lab before 10 and I was ready to go back at 11. For the first time, the drs didn’t talk me through what they were doing, and the meds made me so sleepy I didn’t speak up. My anxiety was through the roof. Then after the two hours laying flat post procedure, we still had to go to echo since they hadn’t come to us. I almost said no - I was still keyed up, tired, grumpy, hungry. I relented as it was on the same floor, but really couldn’t wait to get home. We finally left after 4pm. 

We got home and Peter just let me relax. He made dinner, then headed out to get bosun. Peter then surprised me with a red velvet cake. We both had a celebratory piece, and are having a quiet night with sleepy pups and purring cats. Last year I couldn’t picture what a year later would look like. I don’t know what another year will bring either, but I am hopeful.

Peter: It has been a difficult time, but we persevered. We can’t wait to celebrate future heart-birthdays with our family and friends. Thank you all for your prayers and support from afar this year. God bless.

So much has changed in a year

 I've been meaning to do another post for awhile, and then, puppy.  This is going to be a long one. While Bosun is a joy to have, in terms of sleep he is like a newborn, and during the day he is like a toddler.  He is taking a ton of energy right now.  It will be worth it in the end, as the more we do when he is younger the easier he will be to manage as he gets older.  He is just so smart!  We are definitely going to have to be firm or he will take advantage of us.  He is doing well with the potty training, not loving crate training, and settling in to our routine a little.  Peter and I just need to get that routine down a bit more now. 

We really enjoyed the rest of our vacation in Maine.  We were able to relax, get to know Bosun, get Stella used to and even a little excited about him, and by the last few days we had even figured out how to get a little bit done.  We brought some board games with us thinking that we usually have all this free time at night - didn't work out so well.  But we really loved the new (to them) house Patty and Jay bought, and are looking forward to going back for years. 

We started our drive back on a Thursday, and Bosun did well on my lap or in the wheelwell at my feet.  Our first night we stayed outside Boston.  We did a park meetup with my friend Mickey and her son Forest, and with Matt and Colleen and their dog Josie.  It was so good to see them!  That night, after feeding the pups, we met up with Sylvi and Vinay and had a masked tour of their now house.  We figured that since they haven't moved in yet, there wouldn't be much of anything for Bosun to get into.  But in true puppy style, he still found ways to be  mischievious.  We had a really nice time with them. 

The next day we left quite early and stopped in East Greenwich RI at my friend/old coworker Matt's house.  His two youngest daughters were still around, and we had a visit with the pets outside.  The twins had wanted to start a dog walking club pre-covid, so they LOVED getting to walk and play with both dogs.  We had a nice time, and the pups went straight to sleep in the car. We then drove another hour and a half until we get to Guilford CT, where we checked out Peter's Aunt Jeannie's studio.  It was really fun to see, and she let me pick out something for my birthday.  I got a gorgeous pair of earrning and bought the matching necklace so now I have a set. Then we headed down to NYC and stopped in Harlem to have a stoop visit with Brogiin.  Unfortunatley, her son was napping so we didn't get to meet him, but it was so nice to see her. 

That night we were supposed to stay at another Airbnb, but despite it being a "whole guest suite" there was no door to the hosts living space, and it was hard to wrangle the pets.  Peter went to grab us dinner and when he got back, the hosts had a family with kids over and they were all just hanging out downstairs.  We decided we weren't really comfortable, and that we were only 5 hours or so from home.  We reloaded the car and got home aroudn 2:30am.  It was a long day, but nice to be home. 

We had two low key days at home, including my birthday that Sunday.  We got cupcakes and take out so we had a nice dinner, but otherwise it was laundry, trying to do more pupppy proofing, and just enjoying being home. 

This past week we have gotten into more of a routine.  Bosun has not been as happy in the crate here, so we are trying a new method to get him to sleep and like the crate better.  We have learned that Bosun has a stubborn personality, so its giving us more motivation to really train him right.  He had a good vet visit, and today we start puppy socialization classes.  This week we were able to get him on a food schedule, mostly on a schedule for going outside, and if we get him and stella to play in the morning and during lunch time, he is usually good to just sleep under my desk while I work.  Puppies are a lot of work!

He has been a good distraction from thinking about last year too much, but I still find myself getting comtemplative.  Last year, this weekend was super stressful as we were prepping for me to go into the hospital to go on IV meds until they found me a heart.  This year, we've had a much less stressful time. We went for a long walk with the pups and spent a bunch of time outside, and even had an indoor kn95 board game night with vaccinated friend.

  I'm so grateful to Amanda, Cindy and family, Leah, and Brenda, who all came overa year ago  and helped to get the house clean, prepped meals for me for post surgery, etc.  It was so, so appreciated.  Last year in the afternoon we got the call they had a heart for me, and I remember how nervous and scared and excited we were going in. I now know that that heart didn't work, and my trying to ignore this virus called "covid" that was starting to be in the news because I didn't want to be too stressed didn't work for long. 

There are a lot of ways I'm feeling now, and I'm sitting in the complex emotions and just allowing myself to remember that vulnerability.  Its different being on this side of transplant and knowing so much more, but its also easy to remember a lot of the emotions from then. 

This also means that the world is about a year into covid and restrictions. I doubt many of us thought it would go on so long back then.  I'm hopeful about more people getting vaccinated soon, and going from there. Peter meets the current classification due to his job, and has an appointment this afternoon for dose 1! Really excited he will also be fully vaccinated soon. Over that happens, we may be able to form a pod with other vaccinated friends. Please be safe, wear your mask, and when you get the opportunity, get your vaccine!  I want to come see you all soon.