Getting stronger

I'm still healing and weak ( but getting stronger every day). They found me a heart on Monday 2/23 that is strong and working like a champ. On a step down unit and lots to happen in the next few days, but hoping to be home by the weekend! Thank you for your prayers and for staying home. The care here is incredible and we've been really lucky so far. Waiting to get videos of the new heart beating while it was being brought over!

Hi from jodie

Wow, step  6! I'm finally awake long enough to say hello. I love you all so much. The nurses and doctors are incredible and I'm moved down to a step down cardiac unit, another closer step to home.

We are both so happy Jodie is doing much better and is making such huge strides towards recovery. Every piece of good news feels like she is taking another step to coming home.

Thank you,
Jodie and Peter

Keep pushing forward

I talked to Jodie a few times today. She finally is feeling well enough to ask me to continue reading Harry Potter to her. Her voice is getting stronger, she is breathing easier, and they are weaning her off more medications. The nurses told me that she walked about 300ft this morning!

Also, I finally got to see her in person! This afternoon, Jodie's nurses wheeled her out to the windows, and I drove over with the dog to wave at her from below. Stella was a little confused why we were walking around not on grass, but I made it up to her later. It was great to be there for Jodie... further away than I would have liked, but we're making it work as best we can.

It's not easy to make out, but she's waving from her seat a little behind the window.

Thank you all for your continued support.

Things are looking up

This morning I got a video call from Jodie! She was tired, and it seemed difficult for her to talk any louder than a whisper. Today, she has already been up and walking at least four times up and down the hallway. Jodie excels at pushing through and she is making big progress!

She looks so much healthier than when she went in for the surgery. It's amazing what a difference a healthy heart makes. This is going to change her life and I'm so excited to for a long happy future together!

Thank you and God bless.

Getting stronger, progress towards recovery

Good afternoon, I received a call today from Jodie's surgeon that she is out of the OR and headed back up to the ICU. They finished up what they needed to do, and she is currently without assist devices. That means no more ECMO, no balloon pump, just her new heart beating on its own.

So relieved that she is doing better. She is still sedated and on the ventilator, but they should be removing that within the next 48 hours or so. Once she is breathing well on her own they will start to wake her up. At this point, the visitor restrictions are only tightening further so I will most likely be unable to visit until she is ready to be discharged. However, I have been assured that I will be able to work with the nurse to set up a video call as she wakes from anesthesia. It won't be ideal, but I understand the precautions are being put in place for good reason. I don't want to do anything that might jeopardize her health while she is recovering from the surgery.

I can't wait to see and talk to Jodie. I really can't wait to hold her in my arms. She is pushing through this and I love her so much. God willing we will be together soon, dreaming of the future, safely at home, hale and hearty.

Thank you

Short heartfelt update

Today was a good day for Jodie; she is definitely improving. The nurses say that she has healthy color, not pale, and is comfortable and peaceful. They removed the balloon pump this morning and the heart is beating strong. Additionally, they have weaned her off the ECMO almost entirely, and they are planning to remove it tomorrow. In an ideal situation, she would most likely need to stay at the hospital for around 14 days post-surgery; but depending on the Covid situation, that time may be either shortened or lengthened.

I am kind of going crazy at home not being able to see her, but I'm trying to keep myself busy and productive to get the house and yard as clean and complete as I can. I want her to be able to come home and relax in comfort without worrying about projects that we haven't done yet (she will probably come up with plenty of her own projects soon though!). However, with every call and update I get from her transplant team, I am able to slowly relax and I'm able to get some sleep and make myself eat regularly.

Thank you all for the support you have given Jodie and me, especially considering the tumultuous situation this pandemic has been causing. As we all are struggling to adapt to these necessary changes, thank you for reaching out to help us through this transplant process.

God bless you all, thank you, stay at home.

Transplant Update

First the good news: Jodie's heart transplant is complete, after a six-hour operation that started around 6 a.m. She was stable throughout the entire operation. The heart came from a 29-year-old donor outside of NC. We believe this will be a strong heart for her moving forward.

Right now, Jodie is in the ICU and her doctors are still working to get the new heart up to full functionality. This is not unusual after a transplant, but most likely Jodie will remain sedated for at least the next day or two.

Her new heart started beating on its own as expected, but it is weaker than they want it to be, so right now they are using some temporary measures to support it: a balloon pump, which is common after heart surgery, as well as an ECMO system. The ECMO provides time for the body to rest and recover after transplant by doing the work of the heart and lungs (oxygenating blood and pumping it back into her body). Maximum time on ECMO is expected to be 24-48 hours, and they will be checking on her every few hours to reevaluate.

Jodie's doctors are confident this will work. Significant improvement is expected soon. I'll get a call after they remove the ECMO and can update everyone further then on her progress and recovery.

Round two

4:45pm - So after coming back from the visit with Stella we were enjoying some quiet time together.  I got a call from the transplant coordinator saying they had accepted an offer for a heart for me.  The donor is a 25 year old female from a few states away, and it will be a dcd heart again (so coming in the box hooked up and beating).  They said that based on what they know, it is a really good heart, but until they get their eyes on it they won't know for sure.  Given what happened with the dry run, we are cautiously optimistic.  We decided that we will tell our immediate family, but until we know its a go don't want to really shout it out to the world.  We started to pack up my room, and a bunch of the things that Peter had brought me today we packed back up and had him take home.  He then headed back to the house to pack an overnight bag (originally he was not staying over), and we are trying to get him an exception to the rule so he can at least be here when I go back to surgery.  Since it would most likely be the middle of the night, there is a good chance of that.

I had thought it was weird that my doctor had not come in for the day yet, but he finally did.  My guess is they knew there were whispers going on so wanted to wait until they knew more.  He said that they think this heart looks better than the last one, but that it will take a few hours to fly there.  The surgeon who was going to implant the heart last time is the one flying out to assess the heart and collect it.  I really trust him, so I'm feel confident that he is only going to go forward if it is a good heart.

6:00pm - I had something to eat when they called as they said nothing to eat after 5:30pm.  Now I'm sitting here waiting for Peter to get back.  We plan to listen to a church service, pray, and try to go to bed early as we know people will be in and out all night.  If things go well, I'll be going back for surgery in the middle of the night and by the morning it will have started.

9:50pm - Peter and I have been trying to sleep but it is hard.  We are worried that they are not going to let him stay with me until I got back, and that he won't be allowed to be there when I wake up.  I had a bit of a breakdown to the transplant coordinator, and she called the charge nurse.  The charge nurse for my current floor said that since they are not busy, they will hold my room, and we can plan that Peter will come back after to "get my things".  She offered to, if needed, send a nurse or other staff with him so he can stay as long as possible.  She is calling the overnight nurse in charge and they are trying to get an exception for him. The other news is that when the transplant coordinator called, it turns out they are going to get a different heart for me. 

Now it is a 29yo male who is closer.  Apparently, right before they left for the other one they got this offer, and it is better in a few ways, including that it is not 'high risk', although it is dcd.  My doctor felt it would be better overall, and he is on the way there as we speak.  We were told that most likely I'd be brought over to the PACU around 2am and into the OR by 3am.  After that, Peter can come back to my current room until he gets updates.  If it is another dry run, hopefully they don't go as far and I'll come back to this room, where he will be.  The charge nurse assured us that they won't just kick him out at 9am.  And hopefully if it is a go, then he will know they started and can head home to deal with nervous energy.


By the time you would be reading this, the surgery has already started and it is a go.  We know Peter will get updates, but are not sure if he will even be allowed in the building afterwards until it is time for me to discharge.

We wrote this together around 7pm (edited around 10pm), but I'm planning on posting this once Jodie actually get the call to go into the OR. I'll probably text parents and sibilings, but I doubt I'll be able to focus enough to write a blog post like this.

Dogs make everything better

I got a good night sleep last night.  They didn't let anyone in between midnight and 6am, and I'm pretty sure I almost slept a full 8+ hours.  So nice. I'm really grateful for the short hair, as it has been fairly easy to deal with.

Peter got here pretty early after stopping at the store to get me a few things - we figure if I can't have visitors, might as well have a few treats. He brought in crackers, goat cheese, and a little bit of candy for me.

We have been having a nice day together.  We read some Harry Potter, he helped me take a real shower (I will never stop appreciating a real shower), took a walk around the unit, had lunch, and then I needed a short nap.

In the afternoon, our friends went to our house and got Stella and the extendable leash.  They headed towards us and Peter got a wheelchair to take me downstairs.  There is a circle of grass and paths in between a few of the buildings, and we went over there.  Colleen and Matt brought Stella over, and I could tell she was excited by the way she was trotting when I first saw her.  She did not seem to know quite what was going on though.  When she got close enough that the extendable would reach, I called out to her.  Stella perked up her ears and started looking around.  I called her name again, and she excitedly ran over with a wagging tail.  She came right up to me and just wanted pets.  We had set up my IV so it would be high up and out of the way.  I let her jump up to have her paws in my lap, and I just hugged her and pet her. It was so, so good to see her after two weeks.  Stella seemed really happy to see me, and after some cuddling just sat down at my feet and was smiling.  Our friends stayed about 8 feet away at the end of the leash - good human social distancing.  We caught up a little, but to be honest I was mostly just paying attention to the puppers.

 

 

Let me tell you, a dog is great medicine!  It was so calming, and we spent about 30 minutes with her before I figured we should get back upstairs.   When I got back up and we hooked up the heart rate monitor, my heart rate was a bit lower than it had been all day.

Now to just enjoy the rest of my time with Peter before he isn't allowed to visit for awhile.  We are going to have dinner and a quiet night in.

Some fresh air

I didn't sleep well last night. The up side is that when I mentioned it to the NP, she said they are going to make it so no one enters my room from midnight to 6am. Right now they have been waking me around 4am for vitals.

Mid morning we got notice that starting Monday, no visitors allowed. I won't lie, I panicked a little and started to cry. They think if a heart is found they will make an exception, but otherwise Peter is not allowed. I called Peter and he got over as soon as he could. I understand why this makes sense from an infection control standpoint, but it is so hard. We got permission for me to get an "off-floor pass", and he wheeled me downstairs to the courtyard, which is outside and has a little greenery. We just sat there for about half an hour, but it was really nice to be outside. 

After that I needed a nap, we had dinner, and enjoyed a quiet night in. Peter had made me a short playlist, and we turned on some music and danced to three slow songs.  Pro tip - when dancing with an IV pole and IV, if you lead a turn immediately lead in the counter turn so there is no catching on the tubing.  It was a really nice night.  I gave Peter a few things to take home that I won't need (games for more than 1 person, a book I'm done with), and a list of things to bring tomorrow.  We have big plans for tomorrow - the doctor said that if there was a way that I could see my dog Stella we should try it.  With my off-floor pass and a little creativity, we are going to be able to do that tomorrow.  I'm so excited to see her and get to cuddle her, even if it is in a wheelchair and just for a very little bit. I haven't seen her in two weeks, and I'm hoping that between my visit with Peter tomorrow and the Stella cuddles, that can sustain me in however long it will be until I'm allowed to have visitors again. Just trying to make the most of our time together before it gets more restricted.

What happens down the line?

I feel like the overarching question that has been coming to my mind, is what happens down the line?  There are just so, so many unknowns.

Talking to my doctor today, they are still doing transplants.  Part of the issue is whether the donor hospitals are.  Did you know that transplant is an "elective" surgery, and most hospitals are decreasing those to keep supplies up.  So part of what matters is if the hospital the donor is at is even bothering to do the donor side surgery.  Offers for all hearts have been much lower this week than normal.

So then what happens if they do find one.  I get the surgery, I'm in the ICU for a few days, I'm in the hospital for at least 1-2 weeks, then what?  It sounds like they have a plan so far to keep clinics running on an as needed basis, but what if things gets worse?

I'm really not being alarmist, I'm just being realistic.  And that is not even taking into account that in a few weeks personal protective equipment, or PPE, (mask, gowns, gloves, etc) may not be available, which would greatly increase the risk of infection with anything going around.

It feels really helpless here in the hospital.  I've considered if I should have Peter bring my sewing machine so I can start making some of the CDC compliant fabric masks to eventually donate, as places in Illinois and Washington are asking due to the dire shortage.  I recognize that is a bit crazy, but it also feels like I want to do something.  I don't know that it will get that bad here at Duke, but it could.

I am trying to stay positive.  I am praying and trusting that what is supposed to happen is happening.  But it is hard.  The book I was reading, while really good, is about the Nordic model and I had to stop a third of the way through because it was too depressing to see how poor of a safety net our country has in comparison.  So looking into a new book.

I just hope you all are staying home and practicing real social distancing.  Even if you are healthy, even if you are a low risk group or kids, that does not mean you have not been exposed to or are carrying the virus.  You could not even get sick and pass it along to others.  The more it gets passed on to, the more overall who will get sick, and that is why the curve stays steep.  I imagine this must suck and you're feeling restless.  I get it - I'm stuck in a hospital room.  But there are so many things you can do without going to someone's house or being close to them.  If you feel like you have to meet up, be outside and stay 6 feet away from each other - and only if you are not symptomatic at all.  Wash your hands really well.  The more we do now, the sooner it will get back to normal.  If we don't do it now, the period of isolation will just push out and out. It is not about if you are worried about getting sick or figure you will catch it - you're helping to protect those of us who can't take that chance.

Waiting

Today has been a day of waiting.  Yesterday, it became clear that Peter has been running himself a little ragged, so I had him stay home instead of coming back in the evening.  For today, we decided that it made sense for him to just work from home today, and then come this evening.

I ended up waking up at 6am after they did vitals, and I put up the back of my bed to sit up and read.  I finished a short science fiction book, then got up to sit in the chair.  While there I did a crossword puzzle, scrolled facebook a little, and had some yogurt.  I made a few calls since I was feeling more like myself, and then they brought breakfast and my pills. I went for a lap around the unit, which tires me out.  By 10am I was tired again, so I layed down for a nap and didn't wake up until noon. Unfortunately I missed rounds, but if it was anything important I'm sure they would have woken me up.

I was back up and in the chair, and decided to putz around on the ipad for a bit.  Eventually this got boring, so I turned on Pandora and listened to music while I started one of the paperbacks I brought with me - "The Nordiac Theory of Everything: In search of a better life".  My cousin Liz got me this very cool subscription box, the Wordy Traveler, for my birthday that gives a travel related book and some items from a region each quarter.  The first box was the nordic countries, and I'm enjoying the book so far.  It is written by a Finnish women, and given my love of Finland and many friends there, its interesting.  One of my favorite detective/mystery novel series is a Finnish writer too.  I'm not gonna lie - reading about the universal health care, paid time off when you get sick, etc is definitely making me jealous right now. 

I got a few phone calls later in the day.  Around 3:30 I asked if someone could walk with me around the unit, but no one was available.  Because of concerns with falling or other things going wrong, they don't want you to do it by yourself.  After an hour plus of waiting I decided to just do some 'wallking' around my room - at least it is large enough that I can go a good 5-8 paces before I need to turn around.  I've been joking that I have the "studio" room, but really, it has a little desk area, a couch/bench area, a chair, and the bed, plus a bathroom and a seperate sink and some built ins.  This room is really nice from hospital standards, and I'm glad that I can at least have a little change of pace- lay in bed, sit in chair, lounge on couch, sit at desk, etc.  It makes being in one small room seem less monotonous.

Peter is coming soon.  The doctor said that I can have anything I want to eat, and one thing we did not have time to get before I came in with miso ramen.  Peter is picking it up and then will spend the evening with me.  He is also bringing me some more underwear and comfy pants.

I'm mostly just trying to stay out of my own head.

Finding a new "normal" in the hospital

As I'm going to be here until they find me a heart (which hopefully is not too long, but could be weeks), I'm trying to find a new "normal".  For those of you who aren't very familiar with how hospitals work, the workers are here in shifts.  At Duke, all nurses work for 12 hours - either from 7am to 7pm or vice versa.  Most nurses here work three 12 hour shifts a week. The doctors have slightly different hours, and they tend to be working in the hospital for a full week at a time.  Of course there are a million other positions, but those are main ones that make sense to talk about for my schedule.

Since the new staff comes on a 7am, usually around 6am the nursing assistant will come in and get my vitals, weight for the day etc.  A little after 7am the new nurse comes in and I meet them.  I'd like be getting up around this time, and yesterday I quietly read in bed for awhile until breakfast came.  Today I was sleepy so stayed in bed until 8am.

Then I have breakfast, and most days Peter arrives around 8am and sets up in the corner to start working.  As I wake up, eat, and start doing things for the day, he is being productive for work.  Once I'm awake enough, Peter is helping me to wash up with a washcloth and a bin of soapy water.  Given that I have an IV and a PICC line, I have to be really careful not to get that wet, so no full showers.  However, even being washed makes me feel so much more human.  Then I can change my bottom half (need to keep using the gown on top) and I feel more awake and clean. 

I'm supposed to try to move around as much as possible.  A lap around the unit, which is triangle shaped, is 1/18th of a mile.  I have been able to do 1, at the most 2 laps at at time.  My goal is to do at least 4 laps a day.  We did a lap, and then I sat down with my laptop to try to finish our taxes.  I don't have a ton I need to do, but am trying to stay busy.  I have a few paper books, I have my kindle, I have an ipad (not sure I need it) and a few puzzle books.  I'm trying to do something that keeps my mind working, and isn't just scrolling facebook.  I'm not even turning on the tv

Some time in the morning the heart transplant team comes in to round, and they update up on what is going on.  We like Peter to be here for that so I'm not having to relay information, and so he can ask questions too. After they leave Peter heads home to work the rest of the day. 

Around noon-1 they bring my lunch tray and I tend to eat around this time.  In the afternoons I've been getting tired and usually take a nap.  The afternoon is variable but usually pretty quiet.

Peter usually comes back around dinner dime. In the evening, after dinner, I have to do a CHG bath (with the wipes) and put on a new gown.  I use that as an opportunity to change my telemetry leads each day and get less sticky.  Then, if Peter is here, we try to have some quality time.  Last night we played a game, then I got into bed.  Before bed, Peter and I have been reading Harry Potter and the Sorcerers Stone.  We started when I was in the ICU and could not see each other.  Now we usually we will go back and forth, and try to do a chapter a night.  After we finish, Peter tucks me in and heads home. The last few nights have been a little later than either of us has liked, so our new goal is to be done with this routine by 9pm so Peter can get home and get to sleep at a good hour.

It is much the same each day but I'm finding small spots of different things.  There are times I'm a little bored, but I remind myself of all the options I have.  Overall, I feel like myself personality wise but I have much, much less energy than I used to.  Getting up to walk to the bathroom and back can be enough for me to feel slightly winded.  I'm just trying to pace myself. 

Being in the hospital during a Pandemic

*** Quick aside.  A few people have mentioned they they tried to call the hospital to check on me or try to send me flowers or something.  Since I'm an employee, it is standard practice for me to be "unlisted" so that my co-workers and patients can't just call and ask about me.  There is a password, but we have only given it to immediate family as it also gives access to my medical information.  So if you try to call and they say I'm not a patient, don't worry - they have to do that.  I do have my phone again so if you have a question about something me or Peter can try to answer. ***

It has been an interesting time to be in the hospital to say the least.  I pretty much am not even turning on the TV, as it is non-stop Covid-19 coverage.  I feel like I know enough to be a little scared.

I'm angry that our country did not respond appropriately months ago when they first started to hear about Covid (and I used to study infectious disease, I can say this with confidence).  I'm trying not to listen too hard to the stories coming out of Italy, but what I know does make me wonder.  What happens when we run out of hospital beds?  I am at the point where I need dopamine, a really serious medicine, to keep my heart working.  I have to be in the hospital to get it.  What if too many people get sick - do I get to keep my bed, or do I get sent home?  Lets say they do find me a heart, but its in a few weeks - will there be a ventilator to keep me alive during the surgery and afterwards?  Will there be enough providers available to keep an eye on me? Will it be safe to continue to have to return for weekly check-ups? However, if I don't get the transplant, am I strong enough to keep this up?

This is why I'm really hoping that people stay home.  I know it sucks.  Trust me, being in a hospital room in isolation sucks more. 

I really do wonder how things are going to change after this - I think unfortunately we are going to see just how vulnerable financially (amongst other things) so many in our country are. 

Right now, my job is is to try to stay healthy as they find me a heart.  I'm doing my part.  Please do your part by staying home.  Even if you aren't in a high risk group or don't feel sick, you could still be infected and carry the virus, spreading it.  Please help flatten the curve.

What does Covid-19 mean for transplant?  That is a question my doctors are pondering.  As of right now they know that it is prevalent, but are unsure how to put that into the equation.  If a heart becomes available, do we get information on the covid status oof the donor?  Chances are no one will have beeen tested given the current shortage of tests.  Duke is going to continue transplant operations as they feel like heart disease issues will most likely be serious enough to chance that risk.  It's a hard call to make, and I can see both sides. My surgeon came to visit today and said that in some ways, my experience last week helped them to actually see how some of things they have been talking about with Covid played out.  The are going to continue to transplant, although other places have stopped.  Luckily, we are more geographically isolated here than in other places, without a strong public transportation system, so even though NC is at the same day as some of the other states it has not gotten as bad as quickly, and they are hoping the curve will be flatter.  So the tranplant team is re-evaluating the situation every 4 hours.  They are trying to figure out what the "tipping point" is where you have just as much or more risk of getting Covid from being in the hospital versus being in the community. They aren't sure when, or if we will reach that point here.  There are a few potential options of things to do if we needed to, like implant a left ventricular assist device (LVAD), kind of like an artificial heart, if it looked like transplant is going to be put on hold for awhile.  Luckily, while I need a heart I'm not so sick that I'm needing to be in the ICU.

 Personally, I'm hoping they find a heart really soon - right now things are ok, so I'm hoping if it happens soon then I can get through the worst of it before going home.  Of course, if things get overrun later after I'm home that doesn't really work well in terms of the needed after care.  There are just so, so many unknowns that it is a bit scary.  I'm trying not to judge the experience in NYC, Seattle, etc with here just yet, as we are really different geographically.  I just hope people stay home and don't congregrate and that it passes around less slowly in the Triangle region.

God Bless and Stay Home,
Jodie and Peter

Catching up

So I left us on Friday morning.

Friday morning - I was starting to feel better, and as we got off the fluid I was able to decrease my supplemental oxygen, which was exciting.  Peter was not allowed to come to the hospital to give me my cell phone, but had emailed a list of numbers to my coworker who then "faxed" it to me.  I got the ok to be given things, just not from Peter (as he had been around me and I was not negative yet).  We also got word that the state lab was overwhelmed and could not test my sample, so it got sent to another lab. My wonderful coworkers went to the gift shop and got me a book of sudoku, wordsearch, and puzzles, plus some kind notes, markers, and a journal.  This really helped pass the time, as I'm not really much of a tv watcher.  I had some phone conversations, but talking was still a little tiring.  While I understood why I can't see Peter or Dad and Lupe, it was still really hard.  The staff was really nice, but its weird to only have contact with people in full protective gear.

Saturday I felt much more like myself.  The doctors came and said that they really have no suspicion at this point that I ever had Covid, but until we get the negative result they can't let me off isolation.  I was starting to get frustrated at this point, because while I'm here in isolatin I can't get a heart.  I am grateful that it was somewhat more peacfull, I got rest, and at least I know Im healthy.  Mid day they tell me my lab result is "processing", so I'm hoping that means we will know today.  In some ways I'm on edge all day.  Luckily, I had an awesome nurse who looked over my chart and worked with me to think about what I need to do to be as healthy as possible.  She showed me how to use a piece  of equipment they had given me in the CTICU but had not given me parameters on.  She gave me a ton more independence and started letting me unhook myself from the heart monitor, oxygen monitor, and bp cuff on my own so I could just go to the bathroom instead of having to call someone every time. By the evening it had said processing awhile. Finally, I got a "presumptive negative" result.  They opened the isolation and said Peter could come, so i called him and told him to come over right away.  He arrived 30 minutes later, and there was some confusion and they made him gown up.  He walked in, and we just hugged and held our foreheads together.  It felt so good to get a hug, and to be there with him. My nurse came in and seemed upset and  said that because of the type of result, they were maybe putting me back into isolation.  Up until this point I have been really patient, but that pissed me off.  I called my heart transplant cardiologist on his cell phone and told him what was going on, and he said he would look into it.  Peter and I just sat and held hands, and it was really, really comforting.  Eventually, we found out that what happened was that the state lab sent my test to another lab to complete, and they used a non-FDA approved test so weren't sure if they could accept that.  Infectious disease reviewed my case, and gave me the all clear.  Peter was able to take off the gown and gloves and mask, and we just sat and talked and caught up more.  We read some Harry Potter to each other, and then both headed to sleep.  It felt so different to have him in the room.

Sunday morning I sent Peter to ortho urgent care, as he was limping and had badly twisted his ankle the other day.  While he was there, Dad and lupe came to visit and we just sat and talked.  They went to lunch, and Peter came back over.  we waited for awhile, and after hours they finally got me to a cardiac floor.  I had asked my cardiologist if I could actually take a shower, and he said yes!  peter helped me when we got to the room, and it really wore me out.  Totally worth it to feel clean - I still had some of the dyes and stuff from Monday on me.  I also was able to wash my hair.  I've been impressed with the short hair and how it has held up for 7 days with no attention, but it was time for a wash. Dad and Lupe came for a short visit and so Lupe could say goodbye.  They changed the visitor policy to one person per visitor, we thought per day, starting in the morning, so we decided Peter would get a full work day and dad could come stay with me.

Overnight I got 6.5 hours of uninteruppted sleep, which was so needed.  Today, Monday, has been a full day.  Dad I played some card/board games, talked, etc.  It seems like I have the energy to have breakfast, putz around the room a little, do a few laps around the hallway (in total), but not much eelse.  Moving around some pillows and bedding really wore me out.

I'm appreciating folks reaching out, but may or may not have a ton of energy for responding.  I'm doing well, and just starting to recognize that this will be more of a new rhythm for me. 

So it's been a week

Sunday last week we were getting ready and going to the hospital to get Jodie a new heart. A ton has happened in seven days: a dry run, a short ICU stay, fever, mandatory isolation due to Covid precautions for 3+ days, and finally back to the cardiac floor. It feels like it's been way more time than just a week.

I was holding off on a lot of the news lately waiting until Jodie got more stable. And she
is now feeling more like herself, talkative, and animated; better all around. However, we have been noticing her energy depletes much more quickly, so waiting here for a heart really is the best option. She was finally approved to get a regular room on the cardiac floor today, and got special permission to treat herself to a shower. Feeling like there is some normalcy in her life again will do wonders to make her more comfortable.

Feeling clean for the first time in a week!

So now Jodie is back on the transplant list, and the plan is to stay at the hospital until a better heart becomes available.

Short update tonight, but good news. Jodie is planning a much more detailed post for later.

God Bless,
Jodie and Peter

What I remember

Hello everyone. I'm finally feeling well enough and have access to my phone enough to post. I'm going to try to catch you up on what I remember since my last post Monday. Peter has done a great job keeping up.

On Monday they took me back to the OR. As they wheeled me in, my eyes kept filling with tears - of relief, joy, nerves, trepidation. I kept reminding myself it could still be a dry run, but was getting excited. They got me in, moved me over to the surgery table (which was surprisingly warm) and then started to get stuff ready. It was like a well oiled machine. Someone asked what kind of music I wanted to listen to, and I went with jazz. They used Miles Davis as a start. This led to questions about why jazz, and next I'm talking about swing dancing. The surgeon comes in and tells he will get me swing dancing again. He says things are taking longer at the donor hospital but so far everything looks good. It's taking awhile, so we keep up small talk as they prep and get me ready. Apparently I was rolled back at the same time as the donor. It takes awhile to get the arterial line, but it goes in. Eventually the surgeon returns and says we are about good to go. I ask everyone else in the room to remind him to get me video/photos of the hearts. We then get word that heart is on its way. I asked the surgeon if this could still be a dry run, and he said yes but had a really good feeling about the heart. As they pushed the anesthesia I looked at the clock and it was 11:28am. Then it was like I was seeing a cracked screen and hearing noises like in an old school arcade/pin ball game, and I was out.

3:40- I'm disoriented and my eyes flutter open. My neck really hurts and my throat is sore. But my chest doesn't hurt. My eye catches the clock, which says 3:40pm. Even though I'm not all there, I know I didn't get the heart. Im slightly start to panic inside, and ask what happened. They tell me that the heart was not as good as they thought so they couldn't use it. Initially I was upset and angry and yelled to God "why would you do this". As I slowly woke, I prayed and remembered pastor Cheryl's sermon on how God is trustworthy. I tried to show that trust, and the chorus from a song we sang in church on Sunday came to me, over and over. The lyrics are "you have called me higher, you have called me deeper, and I'll go where you will lead me Lord". This really helped me to calm down as there was still a lot of chaos in the room.

I heard Peter, and he was there. He held my hand and I calmed some more. I think his mom Patty was there too, but it's fuzzy. The surgeon came in and talked to us - they had the heart and basically the longer it was on the box, the worse and worse it was looking. The readings weren't great, and they were concerned it might not work great so they decided not to use it. However, since it was in the room and a last minute decision, I was already intubated, had a central line, and was on heavy meds (which they nickname jet fuel). 

I slowly became more coherent over the next hours. I was in the cardiothoracic intensive Care unit, or CTICU. They would keep me overnight to wean me slowly off the medicines and transfer me to the floor the next day. 

I felt pretty awful physically and was really sad about not having a new heart, but I was encouraged that they are so selective and trust their choice. My dad and stepmom arrived just before the end of visiting hours and had a short visit before they left.

I think I started running a fever sometime overnight. But in the morning (Tuesday)  I woke up feeling slightly better, so the nurse took me for a short walk down the hall. After that it seemed like it was harder to keep my oxygen levels up and they put me on supplemental oxygen. They removed the arterial line and I was transferred to the floor.

Peter was with me most of the day, with my dad, stepmom, and in-laws coming in and out. This day was tough, as I was tired and it really felt like work to breathe and talk. I don't remember much, but the surgeon came and explained that he would have used the heart if I were 65, but for someone my age it was not good enough, and he wants a really good heart for me. Through out the day I still didn't feel good, and they said if I didn't get better they would be sending me back to the cardiac ICU.

Wednesday morning both Peter and my dad got there early. It was still really hard to breathe. My fever was getting better, but all my cultures and tests had come back negative so far (cultures often take 2-5 days to grow). Normally they would have moved me to the CICU, but given what is going on with covid, they decide I should go to the general ICU and be on isolation until I got a negative covid test to be safe. (I do not/did not have covid) My cardiologist came in and says he knows that I'm a bit if a guinea pig as they are figuring out the best way to deal with potential covid cases, but they wanted to be sure.Peter and Dad had to get my things, but put them in clean bags as they left the room, and had to leave the hospital. Unfortunately, they had not thought through cell phones at that time, and mine went in the bag with Peter home, with him not allowed to come back until I have a negative result.

Some of you may think this was a severe response. For those of you who have known me at least 13 years, you know I have a master's in pathobiology, or pathogen biology. Duke was following the standard for isolation and even though my team thought it was a very low risk, I do think it was the right call. 

The staff moved me very efficiently and this ICU has negative pressure doors. That means there are two sets of big sliding doors. The area in the middle has negative pressure so it is blowing the air into the room, not the hall. The staff have to put on full protective gear, including booties, gloves, gowns, n95 respirators and a plastic face shield. The nurse has a nursing assistant who is watching like a hawk to make sure they do the right order coming in and out. This is how they keep caring for me but not exposing anyone else. They did the swab for covid and were told to send it to the state lab. All day Wednesday, as we started to get rid of fluid, I felt a little better. I was able to call Peter since I have a room phone, and got my dad and mom's numbers. It is amazing to me how I know so few phone numbers -and scary.

Thursday I stopped running a fever and felt a little better. We continued to give me medicine to get rid of excess fluid, so I was peeing all day. The afternoon nurse told me about what Peter called "the amazing pee thing", which is what I probably called it. It's called a prima -fit, and my Dr friends, you need to know about this. It is roughly shaped like a pad but cylindrical, and is sightly rigid so bends to fit around you. It is connected to suction, and has a tube running to a collection bucket. So basically, you can pee and it just collects and wicks away from you. It's amazing. They thought I was really fluid over loaded and that is why my breathing is so bad, so today during the day I peed out over 2 liters, and overnight over 2.5 liters more. This meant I actually got some real, uninterrupted sleep.
I'm going to leave you at Friday morning and update more tomorrow. I've loved seeing your messages and feel so loved. 

Hurry up and wait

No major updates, just posting my notes that I took when I got a call from Jodie or talked to a nurse yesterday.

March 12, 2020

7:45am:
Call from Jodie
Sounds stronger
She is able to get up and move around room to use the restroom
She got up to sit in a different chair for a while earlier
Actually slept well last night!

8:30am:
I called her nurse
No big news
Decreasing oxygen assistance slowly, her breathing is getting much stronger

12:10pm:
Call from Jodie
She says she is feeling better
Still tiring quickly, but sleeping more

3:42pm:
Jodie called
She told me more than I wanted to know about "the amazing pee thing"
She is down net 300 mL+ less water weight (total over 2 L by the end of the night)
Took a really good nap
Getting up and sitting in a chair
She asked for numbers for some people since she is getting restless without phone or books

5:15pm:

I got a call from the nurse
Confirmed that she has received list and already started calling people

8:00pm:

Jodie called

Feeling much better and wanted to chat

Talked about bathroom work progress

She asked for me to read to her before bed

9:45pm:

Jodie called

Book at the ready

We got through the first half of the first chapter of Harry Potter and the Sorcerer's Stone

(Up to Dumbledore showing up on the corner)

Book definitely providing a comforting familiarity

Onward, Upward, another step toward recovery

Good afternoon,

Last night I stopped giving updates once I couldn't process anything more. And Jodie seemed to be slowly improving so I was focusing on her. I left the hospital last night around 11:30pm to go home for sleep.

I arrived back at the hospital early this morning at about 6:45am since I wanted to get there before the nurses changed shifts so I could talk to her overnight nurse and meet her nurse for the day. Jodie was looking better but at the same time more tired. She ordered breakfast and ate a little bit of everything. Its great that she is getting an appetite back.

Mark showed up around 8:30. Later, maybe roughly 8:45, her Cardiologist came in to talk to us and discuss her condition and next steps. She was still running a low grade fever at that time, and so far most of the viral labs had come back negative. However, since she was still running a fever, they made the decision to move her upstairs to a different wing in the ICU to keep her isolated. At about 9:00, they got ready to move her out, and the nurses led myself and Mark out; they have our phone numbers and will be giving us updates when they become available. We could not go with her to the ICU, but as soon as visiting restrictions are lifted, I will be rushing back to her side. They are being cautious and are doing everything they can to get her healthy again, and to get Jodie back onto the list to be considered for a heart.

1:00 pm : I got a call from her nurse, she is doing better, her vitals are good, and the fever broke. Still trying to get extra fluids off, and she has been tired.

4:12 pm : Got another call, right now there's no change in her condition, but they're trying to put an arterial line back in her arm to more accurately monitor vitals (which is something the ICU can do that the main hospital can't). Since I wasn't able to leave it with her before we left, I asked the nurse if I could at some point return to the hospital if not to see her, to at least get her phone with charger back to her so she can be in contact with everyone. Until I hear back, the best way to contact her will be to send all well wishes and contact requests to this email I made for us. I will make sure it makes it to her:
jodiesjourneyupdates@gmail.com

Please continue to pray for us. All love and prayers appreciated.

Roller Coaster : yesterday and into day two

Yesterday:

3:30 pm : Got update from the OR that she left the procedure room and was being transferred to the recovery area.

4:30 pm : Arrived by Jodie's side in the ICU after she got out of the operating room. She wasn't asleep but not yet really awake since anesthesia hadn't worn off yet. I spent some time with her and talked to her nurses about the plan for the evening. They were planning to keep her overnight in the ICU recovery area, and move her to the main hospital in the morning. I went out to my car to grab her things that we brought with her on Sunday so she could have her phone and computer and clothes etc.

6:00 pm : Went home to let cats out of their confinement, check in on the contractors progress, and settle my parents in to our house where they would stay the night.

7:30 pm : Went back to the hospital with additional things for myself to spend the night in her room.

8:45 pm : Mark and Lupe (Jodie's dad and step-mom) arrived and went in to visit for a little bit while waited out in the waiting room (visitor limits in that area).

9:30 pm : Jodie was falling in and out of sleep, and there were nurses coming in frequently to check in and get samples throughout the night. I turned in for sleep, and woke up pretty much every time someone else came in to check on her.


Today:

5:00 am : Woke up in Jodie's room in the ICU and they got her up out of bed to walk up and down the hallway for a few minutes. She was looking more awake and feeling a little more comfortable in a reclining chair instead of the bed.

7:30 am : I went back home again to herd cats, get a shower, get coffee and breakfast.

9:20 am : Got word from Jodie that they were moving her into the main hospital and she told me the room number. Thankfully, her cardiac doctor that she has been seeing since moving down here is working this week on her floor and will be around to give us updates. Very reassuring since we know him.

9:30 am : Mark arrived and found Jodie to be with her in her room.

10:30 am: Arrived at hospital and the nurses are trying to determine why she is running a fever. They took many fluid samples and gave her Tylenol. We will know more once results come back and her doctor comes back in to update us.

3:25 pm : We got a visit from a couple doctors and nurses that told us that they were waiting to get results back regarding the fever; could be a few days before we have concrete word. Until then, she is being "grayed-out" on the heart transplant list (not considered for new hearts), at least until she no longer has a fever and has been deemed clear of possible viral infections. To be clear: at this point they do not expect it is the coronovirus, they have not had any cases of that at Duke. In fact, there have been multiple transplant patients currently in the hospital that have tested positive (within the past couple weeks) for a more benign and different virus more similar to the common cold that they would be far less concerned about (it had a really long technical sounding name I don't know). This right now is the more likely suspect if it is viral in nature. Her fever is already coming down.

The big day

5:15- they came in around 11:30pm last night to draw blood, then I fell asleep. Peter stayed on a bench chair that expanded into a bed. They just came in to get my weight. Me and Peter are pretty much up, so he just hopped in the shower. I should have morning labs soon, do another chloeohexadine bath, and have rounds and then I'll know more. I've been getting notifications on mychart, the patient electronic medical record, of some of the procedures they will do in the OR being scheduled. It's exciting and scary at the same time, but I'm feeling good after a surprisingly decent sleep. I'm allowed to brush my teeth this morning, but nothing else to eat or drink until the surgery.

7:00am- got a whole bunch of blood drawn, Peter helped me do the wipes, and then the nurse mentioned she needs to do charts before she went home. I realized I had two open notes from Wednesday, so since I'm just waiting I signed into a pin station in the room to get them done, and asked a colleague to set up my out of office reply. I know, I'm not supposed to be working. But, this did take my mind off of the doctor not being here yet, and now I don't have have to worry about it later. I also brushed my teeth. Just waiting for the Dr and trying not to get too hungry. . . . Just got a call from the transplant nurse coordinator and everything looks good to go so far. The extraction team is at the donor hospital. I should meet the Dr soon, then go down to the surgery pre area. Peter can come there, but when they take me to the OR at 9:30 then he can't. The surgeon wants to get me prepped so as soon as they get the go ahead they can start. I may be in the OR for hours on standby before they start.
7:41- the doctor just came in. He seems great and was really excited. The plan is to take me down soon, then back to the OR between 930-10. There is a small chance that I could be put to sleep to and wake up without the surgery happening if there is something wrong with the donor heart, but hopefully that doesn't happen. The doctor said that so far there are only 5 sites doing the dcd hearts, so even if this one didn't work I will pretty much have access to any type O heart in that pool, do it shouldn't be long. He is definitely going to take some videos and photos, but can't promise he will get everything. Apparently he puts things on Twitter with consent, so later I may be able to post links (I think this is awesome but realize that is not everyones cup of tea.)

8:46am- I was transported down to the pacu. They had remove my pants, socks, and underwear. Then I was given a "tush cush" (nurses term) which is a big jelly type sticker that goes on my bottom to protect my tailbone. They set up the pulse oximeter and drew some more labs. Anesthesia came and consented me. Then the doctor came and gave Peter some more information. At this point we are waiting for them to get started at the donor hospital. I got another IV as they needed more blood. Once I go back they will put in an arterial line before they knock me out. The surgeon told Peter the donor is in state and about 45-60 minutes away. So we are just anxously waiting. Going back now.

10:10am : They took Jodie back to prep for surgery and I have been sent to the waiting room. I'm getting regular updates as things progress, and the most recent update was at 10:18 saying that she is in the procedure room. Will post more as I get these updates.

2:00 : Hadn't heard anything so I called into the desk to see if I could get an update. They had told me they would update me when she would go back, when she went into procedure room, when procedure begins, when surgery begins, and every two hours during surgery. As of now I only knew she was in the procedure room. The folks at the desk have me this in between update at 1:45 when I called.

The heart has arrived, she's under anesthesia, and things are looking good so far. There is still a chance this could be a dry-run up until the heart and her are both in the operating room. Praying that things keep going smoothly and that surgery proceeds as planned.

3:10 : Dry run. They turned down the heart. Didn't get good readings from the donor heart. Optimistic that it won't be long until we get another offer. She's doing well and I'll see her soon. We will have more detailed information to update after she wakes up. 

We just got the call

12:06pm - we just got the call that they found me a heart. I'll post more later, but if everything goes well I'm getting a new heart tomorrow.

 { Addition} - we had gone to our Lutheran church this morning, then went to our Community church this afternoon.  We were chatting with people when we got the call, and were able to tell the folks who were still there.  Everyone was excited and there was a lot of praise, as we had been praying earlier for things to go smoothly.  They held an impromptu prayer circle, and then we were off to get home and do a few more things.  We are grateful to have such supportive faith communities, and it was really special to be with members of our small group when we got the news. 

Then we headed home and started calling/texting people.  One of my good friends came over to help finish a few more things, and another work colleague stopped by to grab some boxes that just got delivered and ended up helping to put in couch slip covers.  Our next door neighbors had agreed to take Stella during the day this week since we are having the contractor start tomorrow, and were happy to take her early.  Our across the street neighbors agreed to let in the contractor tomorrow so Peter can be here the whole time.  We are thankful to have such great neighbors and friends.Then it was time to head towards the hospital.  We realized that in the craziness, we did not eat lunch, so stopped and got a late lunch and then went to the hospital.

4:47pm - we are currently sitting in admissions at Duke Hospital and figured it was a good time to give an update. The donor is a 28yo male. I don't know from where exactly, but was told not in state but nearby. This will be a dcd heart, which means the donor is not technically brain dead. Tomorrow at 9:30am they are taking him to an OR, removing life support, and then have to wait 5 minutes before the surgical team can come in. If he passes quickly, and the surgeons can get the heart out within 30 minutes, then they will hook the heart up to the transmedic OCS (heart in a box) to get it pumping and do a really close inspection. If it looks good, which we should know by 11, then the surgery is a go. If not, it's a dry run. This heart is available because I signed up for the research study on Wednesday. It's crazy how quick this is! 

We are looking forward to getting upstairs and finding out more. Peter will be updating the blog when "big" things happen, but will most likely not have the bandwidth to be replying, although well wishes are welcome. Please pray that things go smoothly and pray for the family of the donor.

8:30pm - I got brought up to one of the cardiac inpatient floors.  They had given me a HUGE room, which would have been great if I had to be here for awhile.  After getting some vitals, I met the first nurse, who was really nice .  She ran through what needs to happen tonight, which was to figure out my INR  - the rate of how much your blood clots.  Because of my artificial mitral vale, I have to be on coumadin and keep my blood pretty thing to keep me safe from clots.  However, thing blood is not a good thing when you're having surgery.  So, they need to figure out how thin it is so they can figure out how much Vitamin K, the medicine that counteracts it, to give me.  Once they get my INR to a normal rate, then they will give me IV blood thinners (heparin) until the surgery.  Coumadin stays in your blood for days, while heparain is very short acting and only works while you'e getting it in the IV.

The transplant PA came in and I signed some consent forms.  I asked if the doctor would be willing to take a video of my new heart beating on the 'heart in a box', and get a photo of both my current and new hearts.  The PA texted the doctor, who said he will absolutely take the video of the new one, and will try to remember for the old one. Then the IV nurse was called to put in an IV  and draw some labs.  I ordered dinner, and then they came in and did an EKG.  Since I am sometimes a 'hard stick', the IV team brought an ultrasound and used that to find a good vein in the my middle arm.  They put in the IV, drew some blood, and then we had some downtime.  We have been trying to reach out to people, and I took the opportunity to call my Pastor from RI.  While I've had, and have, great Pastors, she is the one who I have most connected with, and I wanted to pray with her tonight.  It has been overwhelming and Peter and I wanted it to be just us, but being able to check in with her was really helpful.

They got back my blood test and figured out what they needed to do.  I was given a IV diuretic as I'm holding on water weight and they want to get it off, and then the Vitamin K.  While they were finishing, I updated my advance directive and started updating the blog. The IV just finished, and now I need to do a chlorohexidine wash.  This is a chemical wash cloth that will help to get rid of germs for tomorrow - I'll do once tonight, and and then do it again in the morning.  Then I have to wait for labs to be drawn at 11pm.  After that I can try to get as much sleep as possible before.  As of right now it is 10pm.

The plan tomorrow is that Peter will update the blog as the big things happen - so when I'm taken back, when they start, etc.  So keep on reading, and we appreciate your understanding of us being slow in responses.

Prayerfully yours,
Jodie and Peter

A very busy 40ish hours

Yesterday after finding out about needing to go into the hospital tomorrow, Peter and I made a list of the things we were hoping to get done before I went into the hospital, and started to prioritize.  On the list earlier in the week had been a trip to Ikea today, which is 2+ hours away, to get storage stuff for my craft room.  The goal was to have it be a little less cluttered so it would be a comfortable spare room if someone needed to use the Murphy bed in there.  Due to time constraints, we decided that was not super important.

Yesterday night after the contractor left, I started a load of laundry for the guest bath and our dirty towels.  Then we went to Old Navy where I bought some clothes that will be comfortable in the hospital.  Once I have the transplant, I will be on a steroid that will most likely make me gain a little weight, so I wanted to make sure I had some clothes that would be easy to put on and will still fit even if I do gain a bit.  I got some comfortable pants, some tank tops, and some button up tops.  When you are in the hospital for a heart issue, you are constantly hooked up to telemetry.  This is a portable EKG, which gives the nurses a constant view of how your heart rhythm is doing.  If something goes wrong the nurses see it in real time and can come help.  This means there are stickers with metal nodes on them that the wires can connect to, and all the wires go into a box.  It can vary in size.  Usually (at least as of my last hospitalization), they rip a hole in the hospital gown near the front pocket so the wires can come through and you can put the telemetry box in the pocket.  I decided to get some button up shirts that (in theory) I could run the wires through one of the gaps between buttons and put the box in the pocket (if it is small enough).  Once I have surgery I don't mind being in a hospital gown, but if I'm just staying there and will be in for awhile, I would rather be in comfortable clothes.  I also don't want to worry about if anything gets dirty/stained/ruined, so none of these clothes are ones I would be sad if something happened to.

Then we got dinner, followed by a Target run for some items that would allow us to meal prep (glass containers), lots of pet supplies so our friends helping out won't need to worry about it, some blankets for our bed since the quilt is not done yet and that allows us to put our current comforter in a guest room.  After getting home, we were able to get two more loads of laundry through the washer, including all the new clothes.  We headed to bed knowing it would be a long, packed day today.

We both woke up fairly early, so got another load of laundry in, headed out to breakfast near our house, then hit up the farmers market.  After that we made a list, and picked up a few more things from Target, then went grocery shopping for meal prep and Peter for the week.  We realized in the morning there was more to do than we would be able to, so we decided that since so many friends have been offering to help, it made sense to reach out and see if they were free.  We had 4 friends come over, and we can't thank them enough.  With their help we cleaned and tidied up most of the house, including dusting/vacuuming, washing floors in most of the rooms, organized the spare rooms so they are ready for guests, done over 9 loads of laundry (including yesterday) including all the comforters and sheets for the guest rooms, all our dirty clothes, and the slip cover for our couch.  They also helped us completely clean the kitchen, the fridge, and our deep freezer, clear out things, and start meal prepping.  So far a pressure cooker worth of chicken noodle soup is done (11 containers), beef barley soup (10 containers) and the Italian wedding soup is in the pressure cooker. We are going to us some of the leftover veggies that didn't make it into soup to put into containers with either chicken or pork, and we can freeze them for easy meals.  With the glass containers that are oven, freezer, microwave safe, and dishwasher safe, it will give us a fair amount of time before we have to worry about cooking once I'm home.  It was also good to start doing what will be required for food prep - scrubbing all the vegetables, being really careful not to use anything rotten, and making sure to keep things clean.  I'm feeling confident that with planning we can do it, but it does take more time.

Now I'm relaxing as Peter is still switching loads of laundry.  Tonight we need to do our taxes, put away laundry, and hopefully pack so we don't have to in the morning.  I am quite tired and really startng to realize how limited I am, so I'm feeling more and more comfortable with needing to go in the hospital.  Hopefully I'll feel a bit better. 

We are going to go to sleep early since we "spring forward" tomorrow, then try to go to both church services, have lunch, and then head to the hospital.  We will keep you posted.  Once I am in the hospital, but before they find a heart, I will have a lot of time so may be posting a bit.  After the surgery it will probably take me awhile, but Peter will be posting updates.

Moving quickly into the unknown

Jodie: The last week I've been noticably more tired.  I was getting more tired at the end of the work day, but I did really think a lot of it.  Then we went to Columbus, and as I realized that I could not walk through the terminals because it made me too tired, I started thinking that maybe things were a little worse.  In the last week, I've needed naps (which I am never able to do unless I'm physically exhausted), I've been really winded from walks that normally don't bother me (like walking between two buildings), and I've needed more and more caffeine (tea or soda) to get through the day.  My cardiologist had said that if I was feeling different, I should reach out.  Last night I was talking to Peter and saying that I was hesitant to reach out because my guess was that the cardiologist would say I needed to go into the hospital.

Peter: Seeing Jodie pushing through this past week  has been difficult. When she got to the point that she wasn't sure whether or not she should reach out, we talked it through. While I don't want her going to the hospital with the possibility of staying indefinitely; I also don't want her safety or health to be compromised just because we were being stubborn. Her health is more important to me than my comfort, and I convinced her that she needed to reach out and trust that her doctors knew what would need to be done.

Jodie: This morning I sent an email to my doctor, and within an hour and a half he had responded saying that the wanted me to come into the hospital to be put on an IV medication that may help.  I replied asking if this meant I would be in the hospital until transplant.  He said that is the most likely possibility.  Going on this medication will move me to a level 3, and depending on how I respond he may want me to get a balloon pump, which would require being in the ICU but would move me to level 1.  There is a small chance that I could go home with an PICC line (an IV that is safe to have longer term) and the medication, but it is not as likely.  The nurse called me around 1pm and I have to be at the hospital on Sunday between 2 and 5pm.  So the rest of the day was spent with trying to tie up loose ends, and then I rushed home so we could figure out what our plan is for the weekend and to meet with the contractor, who is starting on Monday.

Peter: To some extent, it feels like we finished none of the things that we wanted to have done before she needed to go into the hospital. It was a bit of a shock to hear that Jodie would be expected to go in at the end of the weekend. Looking at things logically shows that we have more done than it feels like. The contractor for the bathroom will be starting on Monday, and should be done within 2 weeks. Our neighbors are willing and able to take care of Stella during this week. We have kept our family and friends informed of the situation. And we feel so supported and loved by everyone who follows the blog and keeps us afloat with kind words and prayers.

Decreasing wait time

****Warning - this post talks about the process of retrieving a heart from a donor, and includes a graphic photo and a link to a graphic video.  If you are squeamish or this will be a hard topic for you, please wait for our next post.****

When we first met with the surgeon, he talked about how there were some research studies that could make my wait times much less.  He mentioned "dead donor hearts" and the "transmedic" device, and suggested we go to youtube and search "heart in a box, UCLA".  My regular heart failure cardiologist also mentioned these technologies and spoke highly of them.  My understanding was that there is a new technology that keeps the heart warm and beating while it is transported, and while it is approved in other countries it is still considered research in the US because it has not been fully approved by the FDA.  I was told that once I was listed, someone from the research team would talk with me to see if I wanted to sign up for this.

I got the call on Tuesday that they wanted to talk, and as luck would have it, I already had an appointment scheduled with my electrophysiologist (pacemaker cardiologist) for the next morning.  I agreed to come early to hear about the study.  Peter and I had watched the video and both thought that it seems to make sense, so I was interested to get more information and most likely planning to agree.

I sat down with the research coordinator, and it was cool because it turns out she is actually part of the process of when they go to retrieve a heart and helps with the machine.  The company who makes the machine is Transmedic, and the official name of it is Portable 'Organ Care System' or OCS. A picture of the system is below. The company website has a great video that shows the machine in action, keeping a heart pumping.

https://www.transmedics.com/ocs-heart/?gclid=CjwKCAiA44LzBRB-EiwA-jJipCOfyTLQoib2bIecY76B2UOnVEfsG75W46G0twZY5WtHjFBJ01LriRoCodQQAvD_BwE

The OCS first was tested to see if keeping the heart beating and warm made more sense than putting it on ice.  When on ice, a heart can only last 4 hours before it is too injured to be used in a transplant.  With the OCS, which keeps its beating and warm, it greatly increases the time the heart can be out of the body.  The 500/250 mile limit on how far they normally look for donor hearts is because of this limitation with traditional transport methods.  Right now, 15 different hospitals around the country are signed up and are taking part in the research study to show that this is a reasonable way to transport hearts, and that the results are just as good.  Similiar studies in other countries have had just as good, if not better, results.  This means that for people who are signed up in the studies at those 15 hospitals, the geographic range they will look at is much, much bigger.

This does not mean that I get to 'jump the line'.  But think of it this way.  With having the OCS as an option, lets say that a heart becomes available in Wyoming.  They find the list of potential matches.  There may not be someone in that 500 or 250 mile radius who can use this heart.  Lets say there is someone who is close by but is a status 6, and I'm a status 4.  Because they could use the OCS, I could be offered it first (since I would be more severe).  Or, lets say that no one in that area can use it.  Normally, that heart would go unused.  Now, they can open up the range and if someone further out who is signed up in the study can use it, they can get it. This first study has closed and has great results, and they are going to submit for FDA approval of the device in April.

So for those reasons alone, I was excited about the study.  But then the research coordinator told me more about the machine.  Not only does it keep the heart beating, but it is taking readings and checking how the heart is doing.  If it starts to have problems, they can give it medications, adjust the flow rate, etc.  This means that there is a slightly higher risk of a 'dry run' as they may think a heart is good but once its in transport realize it is not as good as they thought, but these are things they have no way of knowing using the traditional method.

Because of these capabilities, the company started the EXPAND study to try to expand the pool of donor hearts.  Only a small percentage of people who are willing to donate a heart can actually do so based on a lot of factors, but mostly because there are the limitations to traditional transport.  Apparently, older hearts (over age 50) do not transport very well on ice, so even though those hearts could still have years on them, they often are rejected.  Sometimes a heart will have something about it that is not entirely perfect, like a slightly wider septum (middle heart wall) or something else like this, and traditionally they did not have a way to see if the heart would work as well so would not use it.  Now, with the OCS, they can get more information during transport to know if it has a good chance of working.  It also means that these hearts can be considered for people who may usually wait a really long time, or who are older, or who really need a heart right away.  Since only 15 hospitals are a part of this, that means that this expanded pool is only open right now to people who are signed up for the study.  The goal is to show that these hearts can have similar results to the traditionally used ones, to where it would increase the overall pool.  But in the meantime, I am eligible to be considered for these hearts.  The doctors are still going to be really picky about what hearts they will use, but it does open up possibilities.

And if that wasn't enough, a new study opened in November called the Donors from Circulation Death (DCD) Trial.  Traditionally, hearts are only eligible to be retrieved if the donor is brain dead.  The surgical team would come in once the family has decided to pull the plug, and they would stop the heart and retrieve it in the operating room (OR).  For most organs from deceased donors, they can be retrieved up to a few hours after the heart stops and still be viable.  Hearts are typically only viable for up to 30 minutes after life support is removed.  In this study, they are expanding the pool of donor hearts again by considering donors who have a life-threatening injury, but are not technically brain dead (which is a really strict process to call someone that).  If the families agree that they want to donate the organ, they would pull the plug in the OR and the surgery team would be on standby.  If it takes less than 30 minutes for the donor's heart to stop beating, then it could be eligible for transplant with this study.  The research coordinator said that these hearts tend to be from younger donors.  Once again, only people signed up for this research study have access to these hearts.  Peter and I decided to sign up, and I was randomized to the group that has access to them (it was a 50/50 chance).

So what does this all mean?  I have no idea right now what heart I will get.  But in addition to the traditional pool, I will have access to being considered for the EXPAND and the DCD trial hearts, so it may not take as long to find a march.  My transplant surgeons will decide if the heart seems like it will be a good fit, and when I get the call to offer me one I will get to know the age of the donor, the rough area they are in, and some details.  If it is an EXPAND or DCD heart, after I get that information I can decide if it sounds good enough, or if I want to wait for more of a traditional heart.  Since I was told I would need a transplant 13 years ago, my worst fear was getting sicker and sicker on the list and dying before they can find me a heart.  Signing up for these studies makes me feel a lot better about having a successful transplant.

I'm also excited to be able to have my experience help advance science.  Regardless of which type of heart I get, information about my outcomes will help to determine if this technology is safe and effective.  If it is, some scientists have calculated that this could increase the number of available hearts around the country by 30%!  It would be amazing if people who are in my shoes in the future don't have to worry as much about having a heart become available.

I'm sorry if this post sounds clinical or insensitive.  I am very aware that in order for this to happen for me, someone's family is going to have to go through a tragedy.  One common misconception about organ donation is that they don't work as hard if you are a donor.  This is NOT true at all.  As you can see, it is only once it is clear that a person is not going to be able to survive that they consider this.  I pray for the donor families, and hope that they are able to find comfort in the idea that their loved one is able to do good even after they are gone, and that a part of them is living on.

There's a method to allocation

Many people have asked us questions about how they decide who gets which heart.  The United Organ Sharing Network (UNOS) changed the rules about how people are listed for transplant a few years ago to help people get listed sooner, and hopefully decrease the number of people waiting on the list who either get too sick for transplant or die waiting for an organ. In the old system there were three classifications - 1a, 1b, and 2, and it had much more stringent criteria to get on the list (you had to be really sick).  With the new system, there are 7 classifications and you can get listed sooner (but still have to be sick).

For all the levels, when UNOS gets the notification that there is a heart available, they are going to look in the system; taking into consideration things like blood type, weight/height, and other immune markers.  This will give them a list of all the people who the heart would be the best match for.  They will then look locally and try to match to the person who has the highest level and has been waiting longest.  If there is no one in the highest level, then they start looking at lower levels. Once you are on the list, you start accruing time.  Time you accruing at a higher level counts if you move to a lower level, but time at a lower level does not count towards the higher.  The time is cumulative overall.

Level 1 - You are living in the hospital connected to a device that is either making your both of the chambers of the heart beat, are connected to machines that can oxygenate and pump your blood for you (ECMO), or have a life-threatening arrythmia (issue with heart rhythm). 
Level 2 - You are living in the hospital and are connected to a device that is making the left side of your heart beat (LVAD), or have a balloon pump, or are having arrythmia's that could be life-threatening but aren't all the time, or need a mechanical ciculation device that is failing
Level 3 - You are living in the hospital. You have one of the devices from level 1 or 2 but have been doing ok on them for a period of time, or need to be on IV medications that you can only get in the hospital, or you have a mechanical circulation device that is having a problem (but not failing)
Level 4 - You can live at home.  You need IV meds but can have them at home, or you have congentital heart disease, or a few other serious conditions, or you need a re-transplant.  This is the status I am currently listed at
Level 5 - You are on the waitlist for a heart and at least one other organ at the same hospital
Level 6 - All other active candidates
Level 7 - This is the "inactive" category that people go into temporarily when they are too sick to have the surgery, if they travel further than 4 hours away, or is something else makes it so they are temporarily unable to accept a heart.

In levels 1 and 2 UNOS considers organs within 500 miles from your listing hospital, while in the other levels they consider organs within 250 mile.   If you want info from UNOS about how this works, a good link is https://transplantliving.org/organ-facts/heart/heart-faq/

I signed up for a few research studies working on ways to transport hearts that is approved in other countries, and that is actually going to greatly increase the pool of donor hearts for me. I'll be posting about these research studies tomorrow, but as a warning it will have a link to a slightly graphic video and will have information about how they procure the hearts that will go into a fair amount of detail.  If you are squeamish or don't want to know that much, I would suggest foregoing tomorrow's post.

Keeping busy

As mentioned in an earlier post, one of the things that we have on our "must do" list before transplant is to renovate our bathroom.

Jodie: The current shower is dated, hard to clean, and we suspect there may be mold behind the tiles.  This is not ideal for a lot of reasons, but would be a bigger problem once I'm immunosuppressed.  We have been talking about re-doing the bathroom since the fall.  The plan is to remove the current tiles and tub, replace the walls behind (including any of the wood framing that does not look good), and then put in a tile shower with a bench.  We are also going to be switching the shower to a combo shower head and handheld wand set-up.  The idea is to not only make the bathroom cleaner, but it will be more functional for me, especially after surgery.  Having a place to sit and a handheld shower wand will help with being able to keep myself clean.  The shower will be easier to walk into than a tub.  And including some grab bars will keep it safe.  Peter has really taken the lead, and I'm excited that he found someone who can start right away.

Peter: The tiles we bought at the Habitat ReStore months ago have been sitting in our kitchen for long enough that we started using the stack as a shelf. Its past time we got started with the project, so its great that we finally seem to have a path forward that doesn't require me to be the one to lay the tile. I can do it, and I have done it before, but it sucked [Jodie here - I really enjoyed it! We quilted a wall!] I think the end product looked good, but its definitely one of those things where I would happily pay for someone else to do it if its financially reasonable. I sketched out roughly what we want to accomplish for the contractor, hopefully it turns out better than I drew it.

Jodie: I'm really, really relieved that the contractor can start next week Monday.  We ordered the shower fixture yesterday, went to Lowe's and got tile for the shower floor that matches the wall tile Peter previously found at the Habitat ReStore.  We also started looking at other fixtures and bathroom accessories for later.  Right now we are focusing on the shower and floor, but the overall plan will be to eventually replace the vanity, light fixtures, other bathroom fixtures, and paint.  Normally we would just DIY everything, but it's good to know that the hardest parts, which would take us a long time to do, should be done in two weeks. Even if I were to get the call that they have a heart for me really soon, there should be time for this to get finished either before I get home or soon after.





Peter: Definitely looking forward to this being done and then we can worry about other house projects! After this is done, we need to get shower doors (considering ordering through Lowe's since they can include installation), and build out a pantry off the kitchen. If we like the work for the bathroom, we may use the same person for this. It will be a smaller project, but I'm really looking forward to that one being done. The idea will be to split the "formal dining room" (that we don't need because we have two dining rooms) into a large pantry to enter through the kitchen, a small office to enter through the entry hall, and a coat closet within the new office. Technically, once we add a door, this will be considered an additional bedroom since it will have windows, door, and closet.

I am coming to realize the importance of keeping ourselves busy to not settle into stressful thoughts about the uncertainties of the future. This is part of why I am taking the lead with the bathroom work at this time, it feels good to be able to focus on something with visible results and a clear end in sight. After these couple of house projects, I'm not sure what I'm going to need to use to productively occupy my down time... maybe I'll pick up a programming language, maybe I'll pick up boat building, maybe I'll pick something I haven't thought of yet. Regardless of what I choose, I know I will need something... if anyone has ideas, let me know.