Feeling more centered

Thank you to everyone for your support yesterday.  This has been such a long journey in a lot of ways, and between steroids making me more emotional and missing Peter/ any type of physical contact, yesterday was a rough day.  I had an awesome nurse who was really great at helping me to see that what I was feeling was a normal response.  I also realized that part of the problem is that I feel SO GOOD.  I literally, even with aches and pains and healing, have more energy than since at least 2007, if not ever.  So I'm stuck in the hospital without  much to do, feel like myself, and have all this energy. The nurse coordinated Peter dropping off my computer and a few other things, and I allowed myself to just enjoy some  show (finished the Marvelous Mrs. Maizel and started Making the Cut).

I also had a lot of time to really just contemplate. Even though I was so disapointed, I'm realizing that it has not even been 2 weeks since my transplant.  I am so, so grateful for how good I feel and am realizing that as much as I want to get home, I need to just trust the process and recognize that I'm doing well. 

They took out my last chest tube today, and I'm working on getting in my mile of walking.  I have a biopsy and cardiac MRI on Monday, so if everything looks ok I should get to home monday or tuesday  But if it is later, that is ok too.

I got some paperwork today about providing information to the donor family.  I am actually really excited (and a little daunted) to write them a thank you letter, because how can you thank someone enough for this gift of life?  Please continue to keep the donor family in  your prayers.

I hope you all have a wondersful weekend.  If you're able to be with your family and pets, give them an extra hug or pet for me.  I am looking forward to being home.

Praying for Patience

This morning we were disappointed to learn that Jodie would not be coming home today. We had been excited to finally see and hold each other. In order to keep Jodie as healthy as she can be, we will need to wait. We will keep the blog posted when we receive updated news about discharge.

Thank you for all of your kind words, thoughts, gestures, and prayers. We know we are doing what needs to be done, we just need patience and perseverance to see it through in high spirits. It will be a joyful reunion when it comes, and we can't wait.

Thank you, God bless.

Trying to keep a schedule

So I've noticed that days here are either very busy or more erratic - lots going on. Then periods of nothing. There last two days I've been trying to keep to more of a schedule. I woke up about 6:30 and slowly get up, etc. Then breakfast, doctors tend to stop by. They were happy with my right drainage so one of my chest tubes came out today. That is a big step, so I was excited. The left was close but not quite there.

I got in an initial walk of 4 laps (18=1 mile), then was able to have a few nice phone conversations. Occupational therapy cleared me for home and said physical therapy did as well. After that I was really sleepy. I think it is related to my body needing to heal from the tube being pulled. I asked them to hold my lunch so it could be reheated, and I took a nap from 11:30-1:00. Of course they came and delivered my new walker, which I'll bring home with me, during this.

The nurse got me up, I ate, then scheduled a virtual walk with a friend in Seattle. While I did my 5 laps here, she took her puppers for a walk, and then we chatted for awhile. It was really a nice motivator.

Soon enough dinner was here, I ate except for my dessert then did another 5 laps. Now I'm relaxing and enjoying my chocolate chip cookie and chocolate pudding. I'm tired and want to nap, but also know a good night sleep is really important, so I'm going to try to just stay up a bit longer to get in my last laps, video chat with Peter, and then hopefully get a full night sleep. A musician friend in Nashville was doing a Facebook live stream so I watched for awhile and it was really great. Then I got to talk to Peter.  I'm really, really, really hoping that tomorrow is the day I can go home - I know it sound be within the next few days, but I'm praying for a reunion tomorrow. I cannot wait to actually be able to hold Peter - I haven't even held the hand of someone I know since I was wheeled back for transplant on 3/23. I am so looking forward to the physical contact - just a hug, etc. When we get home I'm going to promptly want a real shower - all we get here are wipe baths daily, and I can't wait to get clean. Then a good dinner, and sleeping in our bed. Excited to see the pets too, but it's really these little things that I miss. 

Healing while 'alone'

This has been an interesting time. Normally after a transplant, they restrict visitors to keep people healthy. However, with the covid-19 stuff going around, they're are NO visitors allowed. Let me tell you, this is hard. The nurses and doctors have been fantastic, but there is something about not actually having any physical contact, anyone's hand to hold, to look out for you while you're not feeling well, that is really off. I understand from an infection control standpoint, but from a physical/ mental health standpoint it is not the same.

Peter has been wonderful, and has been keeping up with several doctors/nurses and video chatting with me at least once a day. But it's not the same. I know he would be here in a heartbeat if he could. 

This has changed the nursing relationship a little. They always care, but I do feel like they are trying really hard to also be our friends/confidantes/cheerleaders too since it is so restricted. I know I miss my family and can't wait for a hug from Peter. But I am grateful to all the people trying to make this situation less bad. 

I had my first biopsy on Monday - they do a catheterization and pull out four little bits of the new heart to analyze. Results were great, and so far no sign of rejection (which usually happens at some point but we want to keep off), so I'm thankful for that. 

Right now my job is to walk, cough, eat, and control pain. So far today I've gotten in 4 laps twice, and 5 laps twice more (18 is a mile), and I have been shooting for the mile. Which I got this afternoon! Walking is helping my chest tubes drain, and once they get enough fluid off the tubes can come out and I can go home. We are praying they I can be discharged by Friday afternoon.

Love and miss you all. As I'm getting stronger I'm more up to calls and texts. I've been loving random videos and photos of your kids and pets.

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.