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.

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. 

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!

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!

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.

she's ok

We didn't get a call overnight, but peter got the word that Stella was ok around 730. He brought her home with some meds, and we cuddled for awhile. Had a site morning but productive afternoon. 

stella was tired and a bit clingy today, which was good since we had to keep an eye on her.

We joined a small zoom solstice celebration tonight and it was nice to catch up with friends.

Crazy day

Today has truly been a crazy day with so much in it. Warning folks - this will be a long one. We did not find a tree at the tree farm last week, but we did find a lot with local trees and got the tree up and decorated.   Last week my friend Stephanie sent me a picture of a tree skirt quilting pattern after I mentioned that I didn't have a nice tree skirt. I really liked the pattern so bought it, and started cutting out fabric. In my mind, it made sense to make the tree skirt so that I could then warp presents and put them directly under the treee. I've been working on it a bit at a time, and was able to get both the underside and the main top pattern sewn yesterday. I got an ornament to commemorate this year - it says "my heart beats on because of my donor, 3-23-20"

Then Peter and I cleaned a bit, in part because it needed in, and in part becaues we were going to have company. For the first time inside! Shaun and Melanie got married a week ago yesterday, and then came down to Georgia and South Carolina to have a short honeymoon trip, Since we are in North Carolina, we asked if they would be driving close by us on the way home, and they said they could stop. I'm realizing now that this was actually a bit out of the way, but am so happy they decided to do it. This was really exciting, as it was awesome to see their wedding life streamed but so hard not be there. They did give me a few photos from the wedding that are awesome.

The plan was to get up early today, work on the tree skirt, and hopefully be done by the time they got here. I was able to quilt it all, and just needed to do the finishing touches. Shaun and Melanie got by us a little after noon, we put some kn95's on the doorknob for them, and then they came in. Into our house. While we were in it. I got to get a hug from each of them, and I almost cried. I really appreciated getting to go visit Peter's family, but there was something about getting to hug my brother that felt like the best Christmas present ever. We chatted for a little over an hour, Peter got to show Shaun his remote controlled lawn mower, and they told us about some of the fun sights they had seen. Too soon, but also understandable since they still had about 12 hours to drive, they headed home.

I continued to work on the tree skirt. I finally finished it, and we put it under the tree and unloaded two boxes of wrapped presents under the tree. 

We read for a bit in that room, then I went to make dinner. After dinner, Peter and I were hanging out in the family room when I got a phone call. The reception wasn't great so I went in the other room. I'm so thankful I got that call, as when I went in I saw that Stella had shredded one of the presents and eaten something. Turns out it was 3 bars of Theo dark chocolate and almonds. 

We confirmed how much chocolate it was while Peter was on the phone with the emergency vet. They said we should bring her in and they could give her a medication to make her throw up. Luckily, we were only out of the library for an hour, so we caught it quickly, and she had eaten dinner earlier. Peter and I took her over to the emergency vet, and they brought her inside while we waited. Good news is that the medicine did work. Bad news is that her heart rate was elevated afterwards, and one potential symptom of chocolate toxicitiy is arrythmia's. They decided to keep her over to give her IV fluids, activated charcoal to stop any more absorption for chocolate that didn't come up, and to keep an eye on her heart rate/rhythm over night. The vet said it was definitely a good thing that we not only caught it but brought her soon, and they said that best case scenario she can come home tomorrow morning if she has a good night. We're obviously scared and trying not to dwell too much, and I hope by the time you're reading this we have good news - I promise I'll post tomorrow with what happened.

 So today was a day of highs and lows. We are hopeful Stella will be ok. They will call us overnight if anything gets worse, otherwise call us around 7am with an update. Word of advice I wish we had thought of - if you asked for any type of food, but especially chocolate (that's on me) from someone and they mail you gifts, especially if you have a dog, check to make sure you know which package it is so you don't put it under the tree on dog level. This is definitely a scary accident for us to make. And, given the severity, not a big deal, but of course there are chocolate stains on the white of the tree skirt. so I had a nice clean tree skirt for approximately an hour. As long as Stella is ok I don't care though.

Happy Thanksgiving

Today was a different kind of Thanksgiving. We aren't traveling, in part because Catherine's wedding was less than 2 weeks ago so if we, somehow, did catch covid and don't know, we aren't in the safe zone yet of not being infectious. We also didn't want to risk it with how high the numbers are. Last night we made a Jello dish and peter made some pumpkin pies (two small ones), and we started the turkey brining.  

Today we made a turkey, mashed potatoes, gravy, and roasted root veggies. I even bought individual snack packs of black olives, as its not a holiday for me without olives. I made deviled eggs for breakfast, we got the turkey in the oven, and then we did a Zoom with Peter's family. We had to get off to get the veggies chopped and deal with the turkey, but it was nice to see everyone. We got everything in, and then I had a nice call with my dad, Lupe, and Craig. Then it was onto making mashed potatoes and gravy (using turkey stock I made this weekend). 

 Our friend Amanda, who is also working from home and is not really socializing, and the few times she does it is outside with a mask, came over. We had a long conversation about our potential risks, and both decided that we felt like the risk was low and something we were willing to do, and that we would both plan to isolate for two weeks afterwards. We had decided that it would be safest for us each to just cook our own meals, and she sat on the opposite side of the table outside. Peter set up a fan in the middle to blow out, with the idea that any of our breathe/particle we breathe out will get caught in the fan's breeze and pushed away from all of us. It was nice to share Thanksgiving with her, and we visited for a little outside. 

 Then I took a turkey nap, got up, and had a short chat with Shaun. He updated us about their wedding, and given the infectivity rate in Chicago and that the ceremony is going to be in a little over two weeks, when there is likely going to be a spike, I told him that we can't come in. Not going to lie, it was really hard to not just say but accept. At the same time, given my risk level, I know it is the right choice right now. Harvard has a tool out that looks at the rate of cases in each county and you can put in the size of the gathering, and it will tell you the probability that someone there has covid. According to this, which I know is not a perfect tool, the risk is about 65% as of today. Even with everyone having a mask on, that is still really unnerving.

 I do want to talk about the incubation period of covid for everyone who did see family/friends for Thanksgiving. The incubation period can be be from 1-14 days, although most people become syptomatic by day 7. So if you got a covid test before and were negative, that could mean a few things - you were actually negative or you were infected but it had not incubated long enough to show up on the test. If you know you were exposed to someone and got tested right away (within a few days), most likely it was negative but that only means that you weren't positive then, and you could still be infected. So the safest thing to do is to isolate/quarantine for the next 14 days. Don't go out. Don't visit. I think about when I was in the hospital, wondering if things would shut down before I could get my transplant. Hospitals are really full. Someone in the hospital now is wondering that same thing. So please be kind to everyone. I really feel that if you chose to take the risk of seeing people, then it is your responsibility to now isolate for 14 days to make sure you don't spread the infection around in case someone actually had it. And you may not know, but thats what is so hard about covid. It is less deadly than we originally thought, but it still causing a lot of issues for many people. I urge you to do the right thing. Peter and I will not be going anywhere to keep ourselves, but just as importantly, the rest of our community, safe. Until we all start thinking about not just ourselves, this isn't going to get better.

Home again

We got home to NC safe and sound this evening. It was very nice to be able to see folks and be there for Catherine and Travis. It was also really hard in lots of ways. I do think that we did everything we should have. We wore kn95s and fabric masks outside for pictures with the family. We stayed at least 8 feet away from anyone without a mask on, except for the 30 seconds of them taking the photos. Everyone moved away so Peter and I could take a picture without our masks on to be photshopped in. At the ceremony, everyone was masked except for the bride, groom, and pastor. We had on both our kn95s and fabric masks, were away from everyone else, and were seated higher up. We walked in 5 minutes before the ceremony started, and left immediately after, so were only inside for 25 minutes. We did not give anyone a hug that day - which was so hard. It was so great to be there, but really hard to leave. I do think that they took all the precautions you can in this type of situation, with the inherent risk of eating inside. 

It is bitterswwet though, as Chicago just limited gatherings for weddings to 10 people for the next 30 days. That means Shaun and Melanie can't have their wedding as planned. I feel awful for them to be disapointed, but also feel like it is probably a lot safer. I am sad that we won't yet be able to see my family due to covid. I also found out that someone close to me, despite all their precations and using proper PPE in their job, tested positive and is sick with covid. Its scary how, even when you do everything right, there is still a risk. I'm not overly worried, but of course since our bubble just got so much bigger the last few days, I'm going to be nervous for the next 2 weeks and hoping/praying that no one gets sick, and that we didn't catch anything. What is interesting is that I'm not sure, even if covid was not here, if I could have attended something in a goup of 25 at this point post transplant. So I may have needed to be in a mask and not stayed for dinner anyways. 

Back to work tomorrow, but wishing I could take a day off. I have clinic on Tuesday, and we usually get there early, so planning to have the rest of the day be a rest day. Excited to sleep in our own bed tonight, and see the puppy in the morning. Also, Peter's cousin Joe and his wife Angie had a little girl on Friday who is needing a little time in the NICU before she can go home. She is getting better and it isn't too serious, but prayers for Cara-June would be appreciated. Stay safe. Wear your mask. I know this probably sounds hypocritical given our recent trip, but now really is the time to be tightening your social circles, staying home, and being extra careful.

So many unknowns

Peter and I have been working from Columbus the last two days. We had a nice, masked (with kn95's) short visit with Catherine and Travis yesterday night, went on a walk during lunch with Sarah and the kids today (also masked), and then Patty and Jay came over tonight to chat around a firepit outside (and masked!). Its really nice to see everyone, but also nerve wracking seeing how bad the covid numbers are right now. We are being really cautious, keeping distance and limiting time of visits, but it is somewhat disconcerting having to treat everyone as if they have the virus in order to keep yourself (and them) safe. 

 This afternoon Chicago announced a travel advisory, and given the timing of it, I'm questioning if Peter and I will be able to come in for Shaun and Melanies wedding, if the restuarant will still even be allowed to be open for them to have it, and even if we are allowed in (NC is currently in the orange zone), if that is too much of a risk. While Columbus right now has a high rate, Chicago's is even higher. I think this trip has been a good indicator for us in some ways, but there are a lot of issues I'm not sure we can overcome to make December work - one of which is that if NC's rates go into the red zone, we would be required to quartine 14 days once we get into Chicago - and we know we can't be there that long. I suppose we will have to re-adjust as we go forward. I have a clinic visit on Tuesday, once we get back to NC, and we can get some updated information then.

 But seriously. Please, please, please be careful. ICU's are running out of beds. We know more now, but if there aren't enough beds and equipment (and the administration still has not put into effect the act that would allow a ramp us, although Biden has a plan to do so day one), then it affects everyone, not just the covid patients. Wear a mask. Even though its getting cold out, still try to be outside. Socially distance. If you have to be inside with others, wear a mask. If you have to be inside, try to be somewhere that is well ventilated. If you are wearing a mask inside, the better your mask seals, the safer it is. Not all KN95s are FDA approved, but those that are (look online for brand guidance) should work just like our N95s - and offer the most protection. The statistics are showing that most of the new cases popping up are now happening in smaller gatherings of friends and family as things move indoors. I know this sucks. But Biden/Harris have a plan and this will go away eventually. Unfortunately, it will probably get worse before it gets better. But we can all do our parts.

venturing out

Peter's sister Catherine is getting married on Saturday in Columbus, OH. Tuesday is not a busy day at work for me or Peter, so we drove up to Columbus with the intention of working the rest of the week from Ohio. We boarded Stella and drove up today. In preparation we stocked up on snacks and bagels/cream cheese from Panera so we didn't have to go in anywhere.  We were obviously concerned about interacting with people on the way up, so we bought a camping toilet, corresponding bags for it, a small pop up tent, and lots of hand sanitizer. 

We had an easy drive and got to Columbus before the sun set. Peters other sister Sarah and her family were kind enough to move in with his parents while we are here so we have somewhere to stay. Patty, Jay, and Sarah stopped by tonight briefly. My doctor's had said that if I had an n95 and everyone else had masks, we were ok inside for short periods of time. We brought extras of the kn95s (can't find real n95s but these are fda approved as equivalent and have a good seal) to be extra safe, and actually got to see people and get a hug! We distanced inside after and kept it under an hour, but we are here. It's been nerve-wracking because we know covid rates are high, but we are being really careful and are excited to see Catherine and Travis get married Saturday. We both are working during the day the next three days, but will have the evenings for short socialization, outside as much as possible, with the good masks for inside. And yes, my cloth mask over the kn95 is probably redundant, but it can't hurt.

Please be careful. But also, it's awesome we now know enough about covid that I can make a plan based on science (and use my pathogen biology degree) that is as safe as possible. The last time Patty and Jay saw me in person, I was in the ICU after my dry run really not doing well. Such a difference between then and now!

More than expected

 The last few days things have been a little more than expected in a lot of ways.  Yesterday Peter and I decided to go for a real hike on a trail owned by the NC botanical garden.  It was a 1.5 mile path.  It was actually through woods, which was great, although once a bit in I realized I could use a hiking pole.  Peter found me a walking stick to get through the walk, which was really helpful.  We had not looked at the sign beforehand, but apparently over the trail it was a 270 ft drop, which means we also had to climb up that incline.  For anyone who ever went hiking/walking with before transplant, you will know that inclines were not my friend.  There were a lot of fairly steep parts, and a general incline for the last 1/3 of the trail.  It was a little hard, and I was breathing a little heavy, but that was it.  This is amazing.  Pre-transplant, I couldn't walk up a slightly sloped sidewalk without huffing, puffing, and feeling like my heart was beating so hard it would burst.  And the longer I tried, the less my limbs would move - most likely because not enough oxygen was getting to my extremities.  Now, I go up, and I'm out of breath.  But my legs were fine, heart wasn't too bothered, and it was slightly winded so hard to talk, but not huffing and puffing.  I could sit down for 30-60 seconds, catch my breathe, and go again.  Being still someone de-conditioned.  This was a HUGE win. Did I mention that it ended up taking us 1.5 hours to do the hike?  Previously, I've lasted about 30 minutes.  If either Peter or I had realized that it would take so much time, or had the incline, we would have assumed I could not do it.  But once we were in the situation, I did, and with more ease than expected.  This makes me really excited, because if I can do that now, imagine what I could do if I was more in shape?

The other thing that has been more than expected has been my Biden ad.  It was amazing to see that yesterday Joe Biden tweeted at me saying that he will protect people with pre-existing conditions. 

 I know that I am super liberal and that is part of why I support Biden, but I don't know if I've really spelled it out.  I anyone is on the fence about who they are voting for tomorrow, here are my main reasons

-  Biden has vowed to protect the ACA.  Now, it is not perfect  by any means, but some of the laws that were passed with it, like removing life time maximums, forcing insursers to cover pre-existing conditoins without charging more (and to do it at all), allowing kids to stay on their parents health insurance until age 16, and expanding Medicaid to many low income households  have made huge differences.  Joe plans to expand access to plans to lower/middle class families who can't afford it. He has a plan already on what to do.  And for me, if you can't show me the policy I don't believe you have a plan. 

- Biden's tax plan is to raise taxes for individuals making over $400,000 a year, and to tax the uber rich more fairly.  There was an interesting graphic showing that the tax rate for the lowest earners has risen since 1950, but the tax rate for the most wealthy has fallen significantly.  I believe that we measure how well our economy is doing not by the stock market, but how the lowest 10% are doing.  Right now, it isn't good. Income inequality is absurd.  The minimum wage has not been raised in so long that someone working TWO full time jobs still can't afford to live in most cities. I don't believe that people should have to work not making enough to live on.  Companies have been piloting giving their employees a living wage, and it works.  It puts more money into the community.  Trickle down economics doesn't work.  I think that the economy will be stronger under Biden.

- Biden has a plan, which can be put in place day 1, on how to get covid under control.  It involves following the science.  Reports have shown that if a national mask mandate had been put in place early on, as many as 130,000 of the Americans who have died would not have

- I believe that Biden is the more Christian candidate. He is for many "safety net" programs. His platform gives the most people the best chance at having a shot.

- I also morally could not vote for someone who lies, incites violence, calls white supremists "good people", ignores rules about common decency, and isn't bothered that his policies have led to over 500 migrant children being seperated from families that our country now can't find to reunite them with their parents. I feel like voting for him would be turning my back on my LGBTQ friends, my friends with disabilities, my BIPOC friends, and myself and others with health conditions. 

That is why I voted by Biden/Harris.  That is why I've volunteered. That is why I used my voice to tell my story. If you are still on the fence and want to have a conversation, I would be happy to have a non judgemental one with you before you go to the polls. 

Everyone be safe tomorrow.  Vote if you haven't already.  Bring a bottle of water and some snacks with you in case you have to wait. I really like the metaphor that voting is like taking the bus to your destination - chances are neither candidate gets you exactly where you want to go, but which one gets you in the right direction.  I truly believe that we are going in the wrong direction, and that another 4 years will weaken our country in the view of the world, economically, and in terms of health.  I don't believe covid goes away if 45 is re-elected. The future is in our hands.  Which future do you want?

So proud

 As you know I've been volunteering with the Biden campaign.  I can finally share my exciting news.  A week ago there was a call on the volunteer message system that they were looking for people to share their story about the ACA and why it was important.  I immediately reached out with the short version of my heart story, and they asked to send it to the producer.  A few days later the producer sent me a guide of interview questions, instructions to video myself answering them, and a Box account to upload to.  I taped the videos that night.  The next day they asked if I would be ok sending in some photos from throughout my life, and I happily did.  I was initially told they were going to do a 3 min compilation of stories. 

In the end, they decided to feature just my story, and I am SO PROUD to be in this ad talking about how the Affordable Care Act changed, and saved, lives.  Had my dad and grandpa not paid for my COBRA back then, or if my department had not allowed me to do a third rotation my surgery term, I would have lost coverage and would have had to drop out of grad school, move home, and my life could be very different. 

Heres the link for FB: https://fb.watch/1suqfawgxK/

And for Instagram: https://www.instagram.com/tv/CG-v6i6BYB5/?utm_source=ig_web_copy_link

We only have a few days left until the election.  Vote.  Talk to your friend and get them to vote.  Volunteer to phone bank (I'm both phone and text banking this weekend).  

And please, wear your mask.   Covid rates are really high right now, and its the easiest thing to do to reduce the spread. 

Wishin' . . . and hopin' . . and prayin' . . and plannin'

 The last few weeks have been interesting.  As I've been feeling better, I've had different thoughts come to mind.  Thinking about the future, what could come next.  Peter and I started talking about children again, and thinking about whether we want to adopt or if there are other options.  Peter told me he heard about some transplant patients getting pregnant.  I figured this was a really bad idea, but looked into it.  It looks like there are definitely risks, but that a transplanted heart can take the strain of extra fluid and weight from pregnancy.  I still think it is too much of a risk, as it can increase rejection.  But, we had looked into the idea of extracting my eggs in the past, with the idea of maybe doing surrogacy, and that was not safe when I was in heart failure.  But now, I wonder if it that could be an option. I emailed the team, but have not gotten an answer yet.  

I also started to think about work and school.  My initial plan, many years ago, before heart failure, was to get my PhD.  Could that be a possibility now?  Would I want to?  I think that what it has shown me that it is ok for me to hope again.  I realized that before transplant, even though we would think about the future, it could only go so far - to transplant, to after transplant, but not much further.  I don't think I really realized it before, than I didn't really think about the "after" transplant part.  And while there is still a lot more that has to happen to get to the future, I'm also excited about being able to think about it, pray about it, hope for it.  Who knows what will happen, but at least now I can look forward without the constant fear of "what if" over my head.

Today I even had my very first solo "outing".  I just went to Walgreens to pick up a prescription and some melatonin, but it was nice to be able to do something by myself.