Today was the last day of the heart transplant evaluation. What was weird is that for most people, this is the first day. We decided to leave nice and early so we could grab something to eat when we got there. Traffic was not too bad, but when we arrived two out of the three gate to get into the parking lot were not functioning. It led to a little traffic jam, but luckily everyone was being polite and we were able to get in safely. We headed over to the cancer center cafe and got breakfast smoothies, then back over to our main clinic, 2F/2G.
I checked in, and got called back to give a urine sample - actually two. Word of advice - if you ever need to do this in two seperate containers, take the lids off beforehand so it's easy to switch, not just loosen the cap. I saw the kind clinic nurse who had drawn my blood from the IV on Friday, and I was able to thank her again. She seemed happy that the IV stayed intact and I was able to successfully get the CT scan.
After that it was back to the phelobtomy lab. The woman who was helping me on Friday was not there yet, and the new person could not find the orders in the computer. I explained how they had left orders open and the first person was saving the labels. The new phelobotomist had to go find the transplant nurse from Friday (luckily I remembered her name), and they were able to get labels re-printed. It turned out I needed 11 more vials drawn - much better than the original 26 in one day. The phlebotomist was good, and we were able to get it all in one stick. After she got all the labels on and confirmed I was done, I headed back to the waiting area.
Peter was standing with a group of 6 other people. Apparently, there were 4 of us there today to "start" the heart transplant evaluation. We all fit into the elevator (with 3 people in wheelchairs) and headed to a conference room one floor down. While there, the nurse coordinator ran through more about the process. There are 7 different nurse coordinators, and as luck would have it, the one doing the presentation is the one with last names N-O, so she is mine (and the one I've been talking to on the phone). For us, a lot of this was not new information given the other appointments we have already had. There were a few clarifications though.
1. I can choose if I am willing to take an organ from a '"high risk donor". This means that the person either has a medical history that might make them more at risk for things like HIV and Hepatitis, or there is an unkown medical history. The donors would test negative for these infections at the time the organ is harvested, but there is a very, very, very small chance that they are actually infected and it might show up later. I think the chance was less than ten perecent of 1% - so very, very small. They have never seen a case at Duke (or in most hospitals) of someone catching HIV from a heart, and if someone does develop hepatitis there are now good medicines to cure it. For now, I chose yes, as this increases the pool of donors and could lead to a sooner match. Before I would say yes to an offer, we would get this information and I'm allowed to change my mind.
2. After surgery, I will come out with lots of tubes and may look a bit "puffy" given all the fluids they will be giving me. The goal is to get the breathing tube out when I wake up and am strong enough, usually between a few hours and overnight. Then in the next few days, they will get me up and walking.
3. After I go home, I will have weekly appointments for lab work, seeing the doctors, and then a biopsy of the heart to check for rejection. The nurse coordinator told us that everyone gets rejection at some point, and there are medications that help with this. After the first month, appointments go to every other week, then once a month, then three months, then six months, then eventually a year.
4. Due the the immunosuppresion, they are going to suggest that I pretty much stay home for the first 1-2 months. Depending on the season, it will be more/less safe to be in crowds (winter is worse with cold/flu versus summer). I believe that going to less crowded places will be ok, and if I do have to be out I will need to wear a mask.
5. Six weeks after transplant I will start cardiac rehab to get stronger, and by 8 weeeks out I should be safe to drive again.
After that, an occupational therapist came in and brought with her some HUGE pill containers - they had four slots for each day with different times on them. This is the pill container they will give us when we go home after transplant. We were given 5 pill bottles with labels on them giving instructions. Our job was to fill up the pill box correctly. Each pill bottle had a different color of plastic bead in it. One you took once every other day, another daily with breakfast and dinner, another every morning, a fourth 3 times a day, and the last one daily before bed. I finished it and was trying not to laugh, as I've created games like this for work to teach the teens about how to fill a pill box. At least when I've done it, I give them candy as 'pills'.
We then had the social work appointmnent, and it was pretty basic. We talked about our plan, who my primary and secondary caregivers will be, emergency contacts to call when they find the heart, and how I'm coping. Once again, it was a little weird to be on the patient side of the room as this is not that different than some of the evaluations I've done with my patients.
We finished around noon, then headed over for Peter to meet my other friend/colleague who works at the hospital. We had a quick call to the transplant coordinator, since we had not been able to talk with her one-on-one earlier. We had been wondering if it was ok for us to go meet our nephew Mason this weekend in Columbus, OH. He was born two weeks ago, but I had to work the last two weekends. On the one hand, we did not want to go if I'm listed, but on the other hand, we really want to meet him when he is still a baby. The nurse coordinator checked in with my doctor, who said to go. After that, we were hungry and went to get some Thai food.
We took advantage of both having the day off and were able to go to a tile store, and two kitchen and bath places to help us get closer to a bathroom plan.
And now . . . . we wait. They should discuss me on Thursday morning. If they have enough information, I may be listed. If the team feels like they need more information, then they will send me for more tests. Either way, the doctor said I should go meet Mason as once we get to next week, then they are most likely saying I should not go further than 4 hours from the hospital. If we did decide to go on vacation I can go into an "inactive" status, but it does not lose my place on the list, just means they won't take any offers for me. Once I'm listed and we have a little more info, we will do a post all about that. I should get a call Thursday afternoon with more information on what the transplant team thought.
Thanks for all the check-ins and well wishes. It definitely helps to know so many people are supporting us from through journey. Hugs to everyone!
BACKGROUND
As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.
In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.
WHY DID WE START THIS BLOG?
Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.
We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.
Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.
Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.
God bless,
Jodie & Peter Elliott
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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