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

Monday, August 10, 2020

One more day

 I had trouble getting to sleep again last night, which was somewhat surprising to me.  Although at home, I have been having the same issue, so maybe I shouldn't have been surprised.  I got up, went to sit in the chair and read, and pressed the nurse call button to ask for a cup of decaf hot tea.  They didn't have any on the floor, but the NA brought me some crackers to munch on.  I read for about an hour, and afterwards was able to get myself to sleep.

This morning I had to wake up at 6am, as I realized too late last night that I did not order breakfast.  I would have still gotten a tray, but who knows what would have been on it.  I woke up, got my order in, and then couldn't really get back to bed.  I did my daily crossword puzzle on my phone, then wet my hair so it would re-curl.  The NA brought me some bath wipes, and I got cleaned up, which felt nice.  These were different wipes than the ones I had to use before and after transplant, which made me feel sticky.  They have a nice scent to them, and it was nice to feel cleaner. 

The doctors came and rounded, and they have not gotten the results of my blood cultures back yet - which could mean that nothing grew.  The problem is, they can't really send me home with antibiotics without knowing which ones are appropriate.  So I'm here until tomorrow.  I'm bummed, but I get it.  They were pleased with how I've been progressing, and we went over a lot of different small things in regards to once I'm home.  The doctor let me know that once I hit 6 months post transplant, some of the meds get lessened, which should help with side effects, and then even more so at a year post.  It can't really come fast enough. 

After they left, I was cleared to walk, so I did a few laps around the unit.  I ran into my old heart failure doc and we had a nice chat in the hallway.  I really like the transplant team, but I do miss my old cardiologists.  This one is the person who really put everything in motion, went to bat for me, and helped make everything happen, so it was really nice to see him.  

I then went back to my room and read for a bit.  Given that it is a work day, Peter worked from home this morning and came in a little later.  I had to send a message to a patient I was supposed have a therapy session with at 1pm today to reschedule, and I asked a colleague to call the patient since they had not read the message this morning.  At least I shouldn't have a problem for my wed patient, as I plan to be home by then.

I get IV antibiotics every few hours, but that is really the only thing keeping me here.  I can't wait to go home. 

Peter came to keep me company in the afternoon, we had dinner, and went for a walk.  I got in my  half mile for the day.  As we were finishing up, the NP came in and said they identified the bacteria to blame, Campylobacter jejuni.  It is mostly in poultry, and takes 5-7 days to make you sick.  We made cornish hen last Monday, and it took way longer to cook than expected.  I'm guessing that this is the culprit, especially since I had the leftovers on Thursday night, which wouldn't have helped. Good news is now they know which antibiotic to send me home with.  Bad news is I have to stay tonight.  But hey, I get to go home tomorrow and we have answers.  

I also got to look up the bacteria, and reading about it was nerdily cool, and brought me back to my days when I was studying bacteria.  Funny enough, I remember the name but didn't remember a ton about what it does, probably because in lessons it wasn't highlighted as much.  My college professors approach to bacteriology was to the effect of "this is the bacteria, and this is how it tries to kill you" approach, with some smaller info on bacteria that make you do interesting things - like how there was once a Listeria outbreak during a circus at Dartmouth because the performers ate potato salad left in the sun, and then started projectile vomiting on the field during the show.  I guess c. jejuni wasn't interesting enough, since it just causes diarrhea and is often a one-off infection, versus causing an outbreak like a lot of others. 

Anyway, I'm really happy to be able to go home. tomorrow  Peter and I watched another episode of the Great British Baking Show and I'm going to read a bit more tonight before I turn in.  

Sunday, August 9, 2020

Humbled

 I had a hard time getting to sleep last night.  I'm not sure if it was one thing, or a combination.  There is a computer monitor in my room, and the screen saver is a set of photos that cycles through and made the room really bright.  Finally, at 2pm, I asked if they had an eye mask, and luckily they did.  I got to bed fairly quickly after that, but was woken up a few times for vitals before morning.  I just kept my eyes closed and stuck out my hand for the pulse oximeter to be put on a finger, my calf for them to put on the bp cuff, and opened my mouth for them to take my temp.  Needless to say, I did not get up too early.  It always surprises me when the staff is so surprised that "you haven't eaten your breakfast yet" and it is not even 9am yet.  I got to it eventually.  

I got taken for an echo, and the doctors found me over there.  They found some leukocytes, which are a type of white blood cell that indicate there was in infection, in a stool sample, so we know I had some type of GI infection.  I've not had a fever in over 24 hours, and the other symptoms are much better too, although not completely gone.  I'm back to being hydrated so my bp has steadily been increasing, so they have started back some of my blood pressure medications. 

The question is, of course, what caused the infection?  We can't really find out, since as soon as I got here they started broad spectrum antibiotics after taking blood cultures.  But in talking through it with the doctor, she thinks it may have been one of the fruit cups I had this week.  I had been craving fruit, and since they serve mandorin oranges in juice at the hospital on the immunosupressed menu and canned fruit is ok, I figured that fruit cups would be too.  One of the rules of thumb is that the more processed something is, the safer it tends to be, and the fruit cups are shelf stable until 2022, so I figured they were ok.  I ordered a handful of types for our last grocery pickup, and had a few this past week - pineapple bits, tropical fruit, and cherry fruit salad.  The only other thing I can think of is that I have been making cold brew iced tea in the fridge, and on double checking it looks like all tea should be made with boiling water. 

So basically, I'm humbled.  That something potentially as small as eating a fruit cup could cause this much trouble.  And not only that, but that in a mere 12 hours I could go from feeling pretty tired but otherwise fine all day, to the point where I'm so dehydrated that its dangerous.  Peter and I have been careful with our food prep, but have not been quite as diligent recently as things have been going so smooth.  This is a good reminder that we need to stay vigilant, even though it is hard. It also occurred to me that if a GI infection could do this much damage, what would something worse, like the flu or pneumonia do to me?  I've been saying with relative confidence that if I caught covid, I'd be likely to die, and after this, I have no doubt - my body is simply not able to fight off infections due to the immunosuppression.  Something I've known intellectually, but is really humbling to really know after going through it. 

So please stay safe.  Wear your masks.  Socially distance.  Don't have large gatherings, and if you do wear your mask.  It sounds like I might be allowed to go home tomorrow, so I'm praying that is the case. 

Saturday, August 8, 2020

The same but different

It has been a weird 48 hours, that for sure. Thursday, I had a really busy day. I did a little work, had lunch, did another hour + of work, then did a 20 minute bike ride to get in my exercise. Got in another hour of work, then sat down to rest for a little. I then worked 5:15 to 7:40ish, as we had our first online ATLAS meeting of the year with the teens. It was awesome, but I needed a soda for the caffeine to get through the meeting, and by the end of the call I was shaky and starting to feel cold.

I curled up on the couch with Peter and a blanket, and we watched an episode of the Great British Baking show. By the time I was ready to go to bed, my temperature was 99.9. I was concerned, but assumed it was due to pushing it too hard during the day.

Overnight I kept having the weirdest dreams. I have been reading the Outlander books by Diana Gabaldon - I had previously read the first 3, and found a deal on the series, so I bought the set of 8. I watched the first season on Starz when it first came out, and want to watch the rest that are out, but also wanted to have read through first. So in my dreams, it was a weird amalgam of me being in the midst of Outlander wars with pieces of wisdom and food from the Great British baking show. It makes no sense, and didn't in the dream itself either. Throughout the dream, I kept having to get up to go to the bathroom. As you can guess, after getting up around 9 times plus not really getting any sleep, plus having a fever creep up on me, I was not feeling good. Peter got me to the couch where I was able to have some water and about an 1/8 of a plain bagel, and an applesauce package, but I was in that weird place where you feel hungry and nauseous because you're too hungry all at the same time.

Peter called the cardiac transplant team, and as he did I just curled up with the blanket feeling worse and worse. I was really shaky on my feet, and needed Peter to walk with me because I was worried about falling. When we were told it was time to go to the Emergency Department, at that point my temperature was at 104 and part of me was glad they said I needed to come in. Even just walking to the bathroom was exhausting given how tired and worn out I was. I realized that I should shower before we left as that is often a luxury you don't get while admitted. The problem was I so cold I didn't want to get out of my blanket, let alone clothes. Peter got the hot water going and helped me to minimize air exposure after, and I'm grateful much he helped. By the time we walked to the car I felt ready to pass out and just sleep. Instead, I worked on another 1/8 of the bagel and drinking more water.

This was my first time being at the Duke ED, and I was fairly impressed. They screened us coming in, and when Peter dropped me off the gave me a wheelchair and pushed me in while he parked the car. I was registered in minutes, and then it was a short wait before they took me and Peter into the triage room. They got the info, did the covid swab, and the sent Peter back to the waiting room until the results came back. We got them in 20 minutes (which is incredible), and it was negative. First thing they put in an IV to take blood for cultures, and then started me on IV fluids and broad spectrum antibiotics in case of infection. They also gave me tylenol, which helped a little with feeling really cold. As time went on, they noticed that my blood pressure was really low, in an almost dangerous range. They moved me to a room "where there are fewer nurses per patient" so they could keep a closer eye on me, but when we got there the sign said 'resuscitation room'. That scared me a bit, as those rooms are often meant for people they think might crash or where they might have to do some procedures, like put in major lines/etc.

As they gave me more fluid my blood pressure slowly started to go up. They wanted another IV in, and it took them until the 5th try for them to get one, and that one didn't last long. Luckily they were able to get me the fluid I needed quick enough, so I didn't need a central line, which would have meant going to the ICU afterwards. As I stabilized some and got cleared for the regular hospital cardiac floors, I was already feeling a lot better just having gotten sleep and not being so dehydrated. They gave me a heated up ham and cheese sandwich, some milk, and some peanut butter and graham crackers before we left the ED, and by that point I actually had an appetite. Sure enough once I started eating and drinking the diarrhea came back, but since they had to test everything that was a good thing.

We got to the hospital around 10:30, and it was just before 7pm when they wheeled me up to the floor. I was put on the 7300 wing, which is the floor I stayed on for a week before getting my transplant. We got situated and the nurse got my initial info, then it was shift change. To my surprise, my night nurse was one of my nurses from the 3rd floor who I had after transplant. It was nice to see a familiar face. Then I met my NA, and she was working on this floor pre-transplant and had worked with me multiple nights. Peter stuck around until the cardiology team came around, then headed home - by then it was just about 9pm, which is when visitors have to leave by. We are both just really, really grateful that he is allowed to be here. I don't know what I'd do if I had to be in here alone again. I know that I would have to deal, but the idea of it makes me sick.

I got my night meds minus the blood pressure ones (since my bp was still lowish), and the fever had come back to 102, so they gave me tylenol again. I was able to get to sleep a little after 10:30, and they only woke me up a few times to get vitals and start meds. When I woke up in the morning, I felt fairly rested, which was nice. I was wondering what I would get for breakfast, as I had not had a chance to order the night before. I was somewhat surprised when breakfast came and I was on a liquid diet - which meant I had a bowl of chicken broth, hot tea, apple juice, and both a lemon and cherry fruit ice. That was a first for me. They have someone from nutrition come in to take your order for the next 3 meals, and the options of a liquid diet are limited, as you can guess. I had a choice of apple juice, cranberry juice, milk, coffee, or tea to drink, veggie, chicken, or beef broth for my entree, and lemon or cherry fruit ice as a sweet. I had to choose my next three meals, so I mixed it up and ordered beef broth for one of them. Needless to say, I was not looking forward to the upcoming meals. Don't get me wrong, breakfast today was easy on my stomach and not bad, but it didn't really make me feel full.
I was waiting for the transplant team to come round on me with OT/PT showed up. By this point I was getting a bit antsy. My temperature was normal so I was doing ok. They talked to me about what I've been doing at home and seemed pretty impressed (which is funny, because I've been frustrated its not enough). We went to take a walk around the hall, and when we opened the door the doctor was outside. She looked really surprised to see me and said, "I didn't expect you would be feeling well enough to be walking yet." She listened to my heart and we chatted in the hall briefly, but basically nothing has come back positive yet. It could be rejection, but given the sudden onset they expect its more likely some kind of infection, they just aren't sure what. They are holding my bp meds for the time being, and also holding some of my anti rejection meds that can cause diarrhea - and are thinking about looking into a couple alternative meds going forward. The doctor then said they could change me back to a regular diet if I felt like I could eat, to which I said yes. She then told me to go walk, and we started. The OT talked about how fast I was going, and I got a good chuckle at that, as I'm still not up to my normal speed but can remember how long a lap used to take me. We did two laps, and that was enough to tire me out some so I sat down and read for awhile. I called down to put in a non-liquid lunch and dinner order. They had not changed it in the system yet - but they said as long as they did and I could get it in before noon, I was good. The nurse paged the doctor at 11:30, then again at 11:45. At 11:55 I got the clearance and called in my order. Real food! While I was finishing up, Peter arrived to spent time with me for the remainder of the day. I was still having GI issues in the morning, but not after lunch, which I think is good. They needed more samples, which I'm guessing means they still aren't sure what it is (although we know it isn't quite a few things).

It was a quiet day of reading, Peter and I played a game together, had dinner, and just enjoyed being happy to be able to be with each other. We realized that the game Peter grabbed, Elder Sign (HIGHLY RECOMMEND), we last played when I was on this same floor waiting for transplant. I also had a moment today where the door was open and one of the staff walked by and saw me, stopped, and remembered I was here before. In some ways lots of things are same, but also different. Last time we were scared and nervous but hopeful about transplant. We didn't know what was happening with covid, and weren't sure what they would do about visitors. I was not doing well and getting worse and worse. This time, we are still scared and nervous, but about why I got the fever. We still don't know what is happening with covid, but at least we know Peter can be here from 1pm-9pm every day. And I seem to be getting better.

Here's hoping we have more clarity tomorrow. It sounds weird, but I'd like them to find whatever the infection is so we can specifically treat it and I can know.

Good night all. Please stay safe. Wear your mask! The hospital has a new policy that even when inpatient, when staff comes in your room you, the patient and your visitor, have to wear a mask too (the staff have them on all the time). It makes sense, and I'd much rather do that and be allowed a visitor than not.

Friday, August 7, 2020

Back and Forth and Back Again

Last night, Jodie went to bed with a low grade fever of 99.9, and did not get a great night's sleep. She needed to get up no less than seven times throughout the night to use the toilet. When she did get some sleep, she was plagued with vivid dreams. All in all, not a restful night.

Around 5:00 am she had some tylenol and anti-diarrheal meds. About 6:45 am, Jodie woke up with a fever of 103.3; after which she had water and a bagel to settle her stomach.

At 7:30 am, her temp was 103.5; at which point we decided to call the adult heart transplant coordinator on call.

We did not get a call back from them until about 9:30 am. They simply instructed us to head straight over to the ED at the hospital.

Upon arrival, we were herded through to a small room to wait for blood-work and tests. I was made to wait outside until after she received a Negative on her Covid-19 test (which she did). Once settled in, it was simply a lesson in patience as we waited for the doctors and nurses around us to make their ways to us. Jodie was stable, her fever was reducing, and she was looking better. 

Just before 7:00 pm, Jodie was admitted to the general hospital cardiac floor. We expect she will need to be here for at least a couple days as we determine what is causing, and how to fight her fever.

We were in the middle of the Emergency Department, and there was so much going on, with so many people in crisis, in anguish, in chaos, and in critical conditions. It's hard not to think about our blessings in such circumstances.

God bless, and thank you all for following us on our journey.

Tuesday, July 21, 2020

4 months post transplant

Another month has passed since transplant.  Some things have changed, while others haven't.  I can still do much more than when I came home from the hospital, but these things still make me tired.  I'm really hoping that getting into a home cardiac rehab routine will help with my stamina and productivity.  My chest is not nearly as sore as it was, and I even did some specific chest exercises and was not sore the next day - so that's a win!

My weight is still quite a bit up from before surgery, and I'm told that this will probably be the case for awhile, since I'm on steriods.  I'm still not happy with it, but the doctor gave me a little more freedom in controlling my diuretic, so at least now I'm on a dose that I feel like keeps me dry enough that I'm not getting the painful skin stretching from holding so much fluid, but not so much that the team things its bad.

I still have a lot of medications that I'm taking, but a number has fallen away.  As doses have changed, most of the pills I've been able to get in a single dose versus taking multiple of the same medication in a smaller dose. 

My mood has been a little better too, as I'm not as irritable unless I'm tired.  I still need a lot of sleep, but thats ok.  Some days I don't need a nap, others I really do.  I'm getting a little better at accepting this.

In terms of my mind, I feel like some of the fog is finally lifting.  I don't know if there is any science behind it, but after my last open heart surgery I feel like it took some time for my mind to really come back.  I could still think, but it wasn't as clearly and higher level functioning wasn't as easy.  Focus on certain things is still hard to sustain, but in other areas it is becoming easier.

It feels good to be doing therapy again, even if I only have taken two of my patients back so far.  I have one more I've reached out to, and as I start feeling better and looking forward to having that structure.  Granted, I only feel like I can realiably seen one a day at this point, but as my stamina gets better that should too.

I definitely underestimated how long healing while immunosuppressed takes.  Part of me thought that I would be almost 100% back to normal by now.  I think part of me not being further along is due to covid, which has meant I'm stuck inside and not moving as much as I would have been if I could go out places.  But most likely, I just was overly optimistic. I'm really grateful that Peter can be home working.

We are trying our best to vary our menu each week.  We get tired of certain things, and have been looking for easy things to make (that are low sodium) and we can cook from mostly frozen ingredients.  We unfortunately keep forgetting to take out meat to defrost for the next day, which doesn't work great.  We did discover that Panera has a deal on Tuesdays where you can get a bakers dozen bagels for the price of a half dozen.  We did that two weeks in a row, but took a break this week as we are a little bageled out.  But we made yummy pizza bagels, bagel sandwiches, as well as just bagels and cream cheese.

Yesterday was my first at home exercise, followed by lots of hunger and eating, then a telehealth session with a client.  After that I was so tired I needed a 2+ hour nap.  Today I've been moving more slowly.  I'm listening to my body, and will do my 20 minute walk tomorrow.  I figure this week my goal is to do at least 2 full workouts (one is done) and at least 3-4 days with a walk and strength training, By two weeks from now I want to be doing the full workouts 3 times a week and walking/strength training the rest of the days.  One of my good friends is also trying to be more actice, and we are being accountability partners for each other.  I suppose by putting the info on here it will also help hold me accountable. 

I've been impressed with some of the new research articles coming out that show the effectiveness of masks.  One study found that wearing a mask may protect you up to 65%, and obviously it protects others from you (if you were infectious and didn't know it).  I'm really hoping that the tide will turn and many more people start wearing masks - if everyone did, infection rates would drop low enough that in 8 weeks it would not be too bad.  Until then, I'm on house arrest minus being outdoors without others around.  I'd really love this not to be the case, and wish there was more I personally could do.  Unfortunately, its not my decision.  Please wear your mask and encourage others to do so. 


Tuesday, July 14, 2020

A new approach

I had clinic today, and my appointment was the first biopsy of the day scheduled at 8am.  It took longer to get into the hospital with the screenings last time, so we decided to get there a little earlier.  I finally rolled out of bed a little after 6:30, hopped in the shower (since I have to wait at least 24 hours after biopsy to remove the dressing and shower again), made tea and some breakfast, and then we were out of the house by ten after 7.  I had moved my pills over to a portable container for the day.   We got to the hospital, parked, and were waiting to get in by 7:40.  It went fairly quickly.  Checked into clinic, was only sitting a few minutes before they called me for bloodwork, and then it was into a room.

There are a few dedicated transplant nurses, and I really like both of them.  The older one checked me in and caught up a little.  Blood pressure looked good when it was first taken.  The doctor came in, and she is one of my favorites from when I was inpatient.  She had reviewed my chart, and we talked about the high blood pressures at cardiac rehab.  She very assertively said that my heart is very healthy, that the high blood pressure is because of some of the medications I am on, and that they see people have bps into the 200s when they exercise all the time.  She was not concerned in the same way that cardiac rehab was, and once I told her about my infection control concerns, basically said that since I have a treadmill and bike at home, she thinks I would be fine to do it at home.  She also looked at my bp meds, and asked why we hadn't increased one in particular (which is one I've asked them about raising before).  She got the ok to decrease one of my meds to taking twice a day instead of 3 times a day, and increased dosage of another med too. 

The doctor also asked me about the past biopsies and how they were. I was honest that the first one was not pleasant, the second one was not bad because they used a lot of lidocaine, but the last one was not very pleasant again.  She said, without me asking, that she would plan to use a bunch of lidocaine.  I signed the papers, and then I took a few tylenol and the anxiety med I was given to help make things a little easier.

They took me back, and for the first time it was an all female team (echo tech, doctor, and nurse).  We put on some swing music, and as I listened to it I was able to relax and picture being on a dance floor and how I would want to dance to the songs.  Getting the lidocaine hurt a little, but it was really not bad when they put in the line.  The biopsy went really quickly.  Once they removed the line, there was a little trouble getting me to fully clot, but I was calm and was ok with holding the guaze to get back into my room.  Once I got back to the exam room, they took my blood pressure, which was ok, and then checked my neck.  It was clotted and they put on the dressing. Ten minutes later, they did another bp and it dropped nicely into a healthy range.  The doctor came in briefly to give me the after visit summary, then we were on our way.  At 9:50am!  We have never gotten out before noon before!

I'll get the biopsy results tomorrow.  We put in a curbside order for Panera (we discovered last week that on tuesday you can get a bakers dozen bagels for half price), so we have these for breakfast/lunch this coming week, and Peter got a sandwich while I got soup.  I had a little something to eat, then laid down for a few hours.  After waking up, my neck was still sore, but I'm much more alert and functional than I was the last time.

So I think this new approach to biopsies is going to be good.  The doctor told me how much lidocaine she used, and will put it in her note so they can do that next time too.  And I am going to use what I have learned at cardiac rehab to come up with an at home plan.  I need to decide if I'm willing to go for another session, but even yesterday they had changed things in a way that increases your exposure to other patients, so I'm thinking maybe not.  Also, if the actual cardiologists who deal with transplant patients are saying that I am really healthy and should not be holding myself back from walking/biking normal speed, then I trust them more than cardiac rehab.  I'm going to talk it over with my nurse coordinator and decide from there.

By the time I was up, had lunch, and feeling more awake, I didn't really have the focus for work.  But I think that should get better as time goes on.  I think we are definitely going to request the first biopsy of the day if we can though.

I finished my last sewing project, a set of 8 quilted placemats, and Peter is going to mail it in the next day or two. The last project before the placemats was a baby quilt, and we got to do a video chat with our friends opening it and video meet the new baby!  He is so adorable. Now I'm starting on a t-shirt quilt for our cousin, to be done before she gets to college in the fall.  I have one queen size wedding quilt to make, and need to quilt together the two sides of our king size quilt.  I'm sure there will be more projects soon - there is at least one more family baby who will be getting one.  I should also finish the masks that I had started months ago and donate them - they are sitting there collecting dust.

So my new approach is going to need more of a set schedule each day.  We will see how that goes. 

Thursday, July 9, 2020

One stitch at a time

In between appointments, trying to get in exercise, working, and the other things to take care of myself (eating, napping, etc), I'm also trying to work on sewing projects to give myself some sense of normalcy.  It has been a challenging week.  One of our dear friends lost her partner unexpectedly in a tragic accident over the weekend.  Covid has made it so I haven't been able to be as available to her as I want to be, and its been a sharp reminder that life is going on despite covid - both the bad and the good.  It's also been a recognition that some things feel more important than infection control, even though that is terrifying to really think about.  Trying to be authentic with everything going on is hard, and unfair. 

On Monday I had cardiac rehab, and once again my blood pressure was high.  They made some changes again, and while I trust my team and know it will eventually get under control, its also very frustrating.  I'm not even allowed to walk or pedal at what is a normal/comfortable pace for me - and I'm trying really hard to not get discouraged, but still being in a place that I have to hold myself back to be safe is just frustrating.  I know that over time this should even out and I will be much more able to be athletic than before transplant, but right now it feels like I'm just stuck.  I went to the gym before transplant and was constantly battling to stay motivated when I couldn't do anything that felt like exercise.  Now, I physically can do things that feel like I could be pushing myself, but it isn't safe yet.  In some ways it feels worse, as I'm having to actively hold myself back, and before at least I could go at what felt like a natural pace.

The current sewing project I'm working on has proved to be more tricky than I expected - there was just not quite enough fabric, so I had to figure out some creative ways to get around it.  Then when doing the binding, I realized that to really do it right, I needed to do some hand sewing.  This is not my strong suit, is tedious, and is time consuming.  But it is the right way to do this.  So I'm having to take it one stitch at a time.  That seems like an appropriate metaphor right now - it seems like a lot of things in life are going one stitch at time.  And they are frustrating and harder than they should be at times, and not coming out the way I had planned.  I just hope that the end results are close to what I have in my head, both in terms of the sewing project and in terms of life. 

Please send positive thoughts and prayers to our friend who is grieving, and to me for perseverance.  Given that covid is surging in NC it is hard to see where things are going to even out and normalize, and I would love a little normal right now.

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 ...