Friday Night Into Saturday Morning Musings

 Its the end of a work week.  I would say that this week is the first that I have put in 5 full days worth of work.  6+ days each day, and super productive.  That is exciting for me, as just a few weeks ago that was not possible.  My intern from last year started back for her last term, and its both been good to have her back, and also has been motivating to get more done.

I have a few big projects I'm working on that are exciting, and need to be done within the next few weeks, so that is also good, as once that happens then things will start to settle into more of a new normal.  

Tonight after work Peter and I did an online board game night with a friend, which was nice.  I also got to talk to my younger brother Shaun for a bit to hear about his engagement to Melanie and how he proposed.  It was good to hear him so happy.  The wedding is mid December this year, and again I am really hoping that coivd calms down significantly by then so there is a chance that I can be there.  All of this is so hard with being immunocompromised.  I haven't asked my medical team yet what they think, in part because I'm not sure I want to hear the answer just yet. 

I will probably be putting in a few hours of work this weekend as one project is so close to being done.  Otherwise, I have a baby quilt I should work on, and am in the middle of two books that are really good. 

I think my biggest issue right now if figuring out how to work exercise into my schedule.  Part of this is because with med changes, my bp is not as good as it was before, so I'm nervous to make it too high.  The other part is that I'm at the point where I actually am getting things done, an it feels a little like I missed my 'window of opportunity' where putting in the exercise would have been easy (which was when I started cardiac rehab).  I have found out that I don't need extra calories for healing anymore, and I definitely would like to lose some of the excess weight I've gained since transplant as that would help my lower back, my bp, and me just feel better. Weight gain after transplant is normal, in one study an average of anywhere from 7 to 18lbs.  I came home at least 20lbs more than pre-transplant, and its not super comfortable.  So that is my big thing that I'm thinking about now.  Since I know it is safe not be on more of a "normal" eating plan, and that I don't have to snack every time I think I'm hungry, I think that will help.  I do know that movement is going to be important, and the truth is that since I'm at home for work and everything else, there just isn't as much movement as I would like.  If anyone has ideas of good completely contact free "errands" or things I can do to get out and moving (now that the weather is better), I'm up for ideas. 

*******

I had meant to post last night and forgot.  This morning Peter got me up a little early, and we went for a walk at 8am with Stella around the neighborhood. He has been doing this daily around 7am for two or three months, and its been too early for me.  It felt really good to get up and moving so early.  Then we got home and I had my yogurt and tea for breakfast.  Peter realized that, being Saturday, the farmers market was happening just up the road.  I got excited, as that is one thing that I can safely do!  We grabbed our masks and headed over.  

The market was set up with the tents having 6 feet between them sideways, and much more space inbetween the fronts than usual.  They even had painted dots on the ground 6 feet apart for people to stand on.  Everyone had a mask on, and everyone was safely distanced.  Finally a slice of normalcy!  I got pretty excited.  We got some great finds - husk/ground cherries (its like a tomatillo with the husk, but is sweeter.  Still tart though.  They are delicious) a spaghetti squash and 3 small summer squashes from the first vendor, fresh made chorizo and bangers and smoked jowl bacon from another place, fresh monkfish and wahoo from another vendor.  We also got some spinach gnocchi and potato, romesary, and asiago pierogis.  I am beyond excited about cooking this week.  There weren't many veggies other than peppers at the market, and no leafy greens, but thats ok.  As much as I love farm fresh greens, it may be better to do store bought ones because of the extra level of washing involved. 

When we lived in RI and there was a year-round market (winter went inside), Peter and I would go every Saturday morning to do the bulk of our shopping, and then go to the grocery store later in the week for whatever else we needed.  I think we may revert back to that model.  We can get chicken, pork, lamb, sausuage, fish (first time I've seen them at this market) at the market with all the vendors there today, and there have been vendors with beef other times.  Since Peter and I both want to eat a little healthier, and we felt great when we used to get all our meat from the farmers market, it may be a good time to get that back into our rotation.  Plus it is one outing a week that I can actually do!

We will see what the rest of the day holds, but as of right now its only 10am and I feel quite productive.  We got everything put away, cleaned the veggies, and husked and cleaned the ground cherrites so they are easy to eat.  I even made some limeade to have in the fridge.  

Also, good to know that Peter and I got new phones, which don't work with Verizon.  We started with t-mobile and both have new NC numbers now.  If you haven't gotten the new number from us yet, reach out and we are happy give it to you.

Here's hoping you have a good weekend, productive if you so wish it be, but good either way. 

5 months post transplant

 It's the 23rd.  Funny how that day of the month didn't used to mean anything, and now it always will.  Today is 5 months post transplant.  It's funny - in some ways I can tell, and in others, things almost seem like nothing ever happened.  Today was a day like any other.  I woke up late (I've been having trouble falling asleep and am not sure why).  Took my meds, etc.  Peter was out in the shed working on his latest franken-mower (he is making one of our lawnmowers remote-controlled using parts from a non-working old wheelchair he got off craigslist), and I realized that it has been a LONG time since I've really be outside.  

I but on shorts and a short sleeve top since it was still in the mid 80's, and had a stroll thorugh the yard.  Lots of rotten pears on the grass beneath the pear tree, and my garden is completely overgrown.  I had such an urge to weed, but I'm not allowed for another 7 months.  Peter agreed to go on a walk with me, so we got Stella and walked around the neighborhood for a bit.  It was hot out, but not super humid, and I'm hoping this means that I can start to actually get outside again.  

Otherwise, I did some reading (I'm onto book 7 of the outlander series now), and it was an easy day.  The type of weekend day we often had before tansplant.  Some things are different - mostly that I have more energy, more pill alarms, and that I'm holding onto more water weight.  Getting comfortable is a little harder, and I think I need to start to working out my abs more to counteract my sore back.  I'm starting to think that some of my "water weight" is actual weight from having to eat so much more since surgery.  I keep thinking that my increased caloric intake will go away, and some days it does, but others I'm just ravenous. 

I think in some ways, the most interesting thing today was that I was just bored.  I read, we watched a little tv, I putzed on my phone, but I didn't really have anything to do.  I'm recognizing that this is just somewhat my state of being while the we are living in the times of covid, and funny enough am looking forward to tomorrow and needing to work.  

I have some creative projects that I could be working on/starting on, but none of them really were making me excited today.  It was only really towards the end of the day that I realized it is 5 months later, although if I had really thought about it I would have realized because my prednisone dose went down today. 

I'm still waiting to hear from the new coordinator about my biopsy results, but I'm assuming if it was bad they would have reached out already. 

So its a big day in some ways, but just a day.  Another day of figuring out this new normal being in quarantine.  I see less people walking around the neighborhood - I wonder if that is because people have started going more back to their normals.  Someone once said to me that things are close to normal 6 months post transplant - given covid, I don't see how that is possible.  But I guess I just do what I've been doing- taking it a day at a time.  Make progress in my movement/exercise so I feel better than before transplant.  We will see what the next month brings. 

Clinic and Convention

Today was a clinic day.  Peter and I arrived at a quarter to 8, and got to clinic early.  After a short wait, I got my labs done, and was taken back to a room.  One of my favorite doctors was on today.  I met with her, and we reviewed how things have been going.  I had a short wait, then I had my clinic biopsy.  They used a TON of lidocaine in my neck, and I barely felt it, which was great. 

I got home, and took a long nap.  After I got up, it was a lazy day.  Overall though, I felt better than I usually do on a clinic day, which is encouraging. Peter and I decided to have lobster bique for dinner again today, and it was delicious. 

Tonight, I decided to watch the Democratic National Convention.  I won't lie, I was really excited in the primary, but my first few picks didn't get through.  I like Biden, but haven't been excited before now.  I was really impressed with how they did the roll call, and found myself with tears in my eyes a few times.  Then there was a bit about healthcare and the ACA - something that could one day literally save my life (as before it, I was uninsurable, and I would be again without it).  Due to Biden and Obama, transplants are no longer considered "elective procedures", and you can't be denied health care insurance coverage. 

I am hopeful.  Many of you know I'm very liberal, and I would ask, that even if you aren't, what is important to you?  Biden/Harris have plans on how to get this pandemic under control, on making sure that people have access to health care, and Biden has experience getting this country out of a recession.  I truly, truly am hopeful that the vote goes to Biden in November, as I worry how things will go in terms of controlling covid and so many other things otherwise.  We need REAL leadership for the USA, for a President and Vice President, in order to get things moving in a direction that will help the majority of people in this country, not just the top 1%.  

I'm not sure how I will support Biden/Harris in the election outside of my vote, but I'm looking into options.  I have never felt called to volunteer for a campaign, but I truly feel like right now it is a life and death issue for me, so I must do something more. 

Please stay safe everyone.  Its scary here in NC - UNC Chapel Hill has outbreak of covid in the 2 weeks since they opened up campus, so they are going to fully online courses.  In one week, there was more than a 10%  increase in positive cases on campus.  I really hope that they get this under control, that all the students and staff who tested positive have mild cases and get better quickly, and that this does not spill over into the greater community. 

Busy Weekend

 I've been feeling a LOT better since I've been home.  I need to get back into my cardiac rehab routine, but otherwise things are going well.  I got in the longest days of work I've done in a while on Thursday and Friday, which was great.  

Peter's birthday is tomorrow, Monday.  More than half of his birthdays since I've known him we have spent in Deer Isle, Maine.  Due to Covid, that wasn't an option this year.  We have both been missing Maine, so I decided to bring some to him.  I was able to ship lobsters overnight from Stonington, Maine and they arrived Saturday morning.  We were really excited.  I had gotten corn on the cob and potatoes that we boiled.  Due to the cost of shipping, I decided to get 4 lobsters for us, and make lobster bisque on Monday (his actual birthday).  The box arrived Saturday mid-morning, and the lobsters seemed pretty happy.  We did some things around the house, and decided to do an early dinner.  We boiled the corn and potatoes, and in a separate pot decided to boil the lobster.  We even took out our fancy plates (really small serving platters) to eat on.  I had ordered a ceramic butter warmer that stays warm with a tea light, and a set of crackers and lobster forks.  The butter warmers arrived on time, the crackers later in the day.  We managed though. It was not quite as good as in Maine, but by far the best lobster I've had outside of being in Maine, and worlds better tasting than what I've gotten at the grocery store in the past. After we ate we made the other two lobsters, and once they cooled I used the crackers (which had arrived) and harvested the meat for lobster bisque and shells to use for stock. 

As we made the lobsters, I got to thinking about Maine.  Peter's family usually puts some water from the ocean into their huge kettle, brings it to a boil over a campfire or propane burner, puts in the lobsters, gets it to second boil, then lets it finish cooking.  When they are done, the whole pot is poured out onto the rocky beach.  Then, to eat it on the beach, you find two good size flat rocks and use those to smash the shells open.  It is a very enjoyable experience, and yet I realize that I won't be able to do it like that anymore.  I might be able to eat the lobster on the beach, but we may have to make me one in the house and bring it down.  I definitely can't use the rocks to crack it anymore.  I think before the food poisoning episode, I was thinking that it wouldn't be a big deal.  Now, all the potential areas that bacteria could get into me from this are standing out.  It's ok that it will have to be different, but it's also a reminder that things are different and I'll really have to put a lot of effort into things.  I already knew I'd need to get bottled water for when we are there, as I can't drink well water, but it's another thing.  Don't get me wrong, I'm very thankful that I'm alive to be having this issue, but there are some days that it just is easy to be frustrated at the changes and the energy it will take in the future to stay safe. 

Today, as I made the lobster stock in the pressure cooker, I cut up the veggies for tomorrow (since its best to throw in the trimmings of those into the stock pot).  I started with two leeks, and when I checked the recipe for how much I needed, realized I did not need any.  So I had two extra leeks to use up.  We did not really eat more than a few of the potatoes from last night, and they were in the fridge.  We also had a large package of chicken drumsticks from our Instacart order Friday.  I have been reading the Outlander Series, part of which is set in Scotland, and in it they mention cock-a-leekie soup.  I had wondered what it was, and it is a Scottish soup with chicken, leeks, onion, and barley (and/or potatoes).  It also needs thyme, which we bought for the bisque.  I decided that since we had all the ingredients, and Peter was willing, we would try it.  I boiled the drumsticks, onion, leek, water, bay leaf, barley, salt and pepper for an hour.  I removed the chicken and bay leaf, then used the immersion blender to mix together everything.  The broth was nice and thick and smooth, and had a very subtle flavor.  I took the meat off the bone of the chickens, chopped it up, and added that and the leftover potatoes (in chunks) to the broth, and we heated it all together for dinner.  It was really, really good and very filling.  We even have 4 jars of leftovers.  Peter and I both agreed that we should add this to our recipe list, and I was excited as Peter is often more discerning about soups than I am (I like them all). 

So tomorrow morning I'll order some birthday cupcakes from a local shop, and a baguette from Panera, and Peter will go pick up both (I still can't go in places).  Then for dinner I'll make the lobster bisque, for which almost everything is already chopped up (or partially chopped up), and we will have it with butter bread for dinner, followed by birthday cupcakes. I can't imagine how I would have gotten through all of this without Peter, and I hope that I can make the day as special as possible, because he deserves it.  

As I'm having more energy, I am also feeling more like cooking regularly.  If you have any great quarantine recipes you've found, feel free to share them.  I think we both would be happy to have something a little new. 

Home sweet home

 Yesterday I got up fairly early, wet my hair so it would look ok, and then got up to sit in the chair.  My back was starting to really bug me from sitting and laying down so long.  The NA was great and brought me warm bath wipes, and I got clean again. 

My breakfast came, and the medical team did rounds just before 9.  They told me I could go home later that day, but I needed to do an IV of magnesium and one of blood (as I was anemic).  They went over med changes, and said it would most likely be around 3pm that I could leave. Peter and I were both delighted at the news.  After the doctors left, I got on my weekly therapy via video - As a therapist, obviously I believe in going to therapy myself, and its been helpful to process things with more of a "neutral party" through this journey.  We got about half an hour into the session, and then my nurse for the day and the trainee nurse with them came in to give me meds.  Seeing as there was a trainee, which would require my attention, we cut our session a little short.  It was a good thing, as it took 30 minutes between the beginning and getting all my meds/the IV started. 

I decided to go for a walk on the unit, and did a half mile, figuring that since I was feeling better, I needed to try to get into my normal routine as much as possible.  Then I came back and sat in the chair and read.  Peter arrived around 2pm when the blood was done running, and then it was time to wait.  He had brought me clean clothes, and I changed into them.  Then we waited for the discharge paperwork.  It took a little over an hour, but we were free to go.  And they even let me walk out on my own, although the nurse had to go with us to make sure I didn't fall. 

We got in the car around 4, and then went home.  It was a lazy night at home, and Stella jumped up to cuddle with me on the couch, which she doesn't often do, so I could tell she missed me.  After watching another episode of Great British Baking Show, Peter and I headed to bed early. I think we were both drained from the day. 

Today, I got up around 9, leisurely had breakfast and did my weight/blood pressure.  They gave me so much fluid while inpatient I'm up about 10 lbs, so they restarted my diuretic which is good.  I then went to work, and other than a break for lunch worked 11 to 5:25 without a problem.  I had an unexpected therapy session when I called my Monday patient, who I wasn't able to see, and they were free to meet right then.  I also talked with a colleague who recently saw one of my old long-term patients last week, and we decided to leave it up the them.  I called that patient who decided to come back to me, which is exciting.  So now I have 4 patients I'll be seeing regularly, and 1 who is already back at college.  I can probably see another few starting soon, so I'm slowly getting back to it. 

We had a good ATLAS staff meeting, and it was exciting to have my intern for the fall (who also was with me all last year) join the meeting.  Things are slowly getting more back towards "normal", and things are figuring themselves out as we go. 

We didn't have much in the fridge so ordered takeout, and Peter was pretty horrified at how many people were eating in the restaurant - we will cross that place off our list.  I got in a large Instacart order for Peter to pick up tomorrow, so then we can get back to cooking. Tonight has been quiet and I'll probably go to bed early.  I'm just really grateful to be home. I'm also pleased that my gains from prior to this stint in the hospital seem to have come back already.  

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.  

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. 

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.

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.