9 months, Merry Christmas, hiking, and puppies!

The 23rd was 9 months post transplant, and Christmas day is 9 months since I woke up in the ICU. Wow. It seems like so long ago, but also not that long ago. 

We had a very low key Christmas, with a few video calls to see the nieces and nephews open presents. It was hard to not be there, but the right choice for us this year. We braised a duck in the pressure cooker with lemon, rosemary, and potatoes. I also bought pasteurized eggs so I could have a runny egg and bacon for breakfast. Peter and I got some fun board games we really like.

Yesterday we went for a 2 mile walk around a pond on a greenway. Today we did a two mile hike at Occeneechee mountain with Peter's cousin, her husband, and their two girls. It was a beautiful day. We encountered some awesome views and hiked for about 2 hours. One part was steps going up about 200 feet that were rough, but I did it. It's amazing to realize how much more is possible now.

On the hike we saw a bunch of dogs. We had not brought Stella because 1) one of the girls is scared of dogs and 2) Stella was limping by the end of the walk yesterday and didn't really want to take one this morning, so we decided she needed the rest. 

Also, we are getting excited thinking about the new puppy we are going to get. The litter was born on Christmas Eve/early Christmas morning, and they had 8 puppies. We have reserved one of the boys, and are naming him Bosun. He is an Australian Shepherd, from a breeder up in Maine, and we get to go up the week after Valentine's to take him home! We are planning on bringing Stella and taking a few days in Deer Isle as vacation. We are so excited.

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.

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